Evaluation of the Effects of a Psychosocial Intervention on Mood, Coping and Quality of Life in Cancer Patients

Evaluation of the effects of a psychosocial intervention on mood, coping and quality of life in cancer patients

Nicola Reavley

BSc (Hons) Pharmacology

Bristol University, UK

Submitted in fulfilment of the requirements for the Doctor of Philosophy, Faculty of Life and Social Sciences, Swinburne University of Technology 2006

Acknowledgements

Many people have provided me with very valuable assistance, guidance and support during the time taken to do this research. I wish to thank my supervisors, particularly Professor Avni Sali, without whom I would not have started and Dr Julie Pallant without whom I would not have finished. Professor Sali’s vision, encouragement and positive attitude have been an inspiration, and Dr Pallant’s support, clarity and attention to detail have been invaluable.

My thanks go to Dr Ian Gawler and Dr Ruth Gawler for generously giving of their time and guidance to enable me to research the work they do. I would also like to thank the staff at The Gawler Foundation, Professor John Patterson, Dr Craig Hassed, Dr Luis Vitetta and Pauline McKinnon.

And last but not least, I owe my thanks to the people that gave up their time to complete the questionnaires. Many of these were cancer patients and their courage and positive attitude in the face of difficult circumstances were unfailingly inspiring. Declaration

This thesis contains no material which has been accepted for the award of any other degree or diploma in any University of other institution.

To the best of my knowledge this thesis contains no material previously published or written by another person except where due reference is made in the text of the thesis.

Nicola Reavley

Table of Contents Table of Contents i List of Tables xi List of Figures xix List of Appendices xxii Abstract xxiii

CHAPTER ONE: INTRODUCTION AND LITERATURE REVIEW

1.1 Overview of the thesis ...... 1 1.2 Introduction to the literature review...... 2 1.3 Cancer ...... 3 1.3.1 Epidemiology of cancer in Australia...... 4 1.3.2 Risk factors for cancer ...... 5 1.3.3 Psychosocial factors and cancer incidence...... 6 1.3.4 Diagnosis and management of cancer...... 6 1.3.4.1 Conventional medical treatment ...... 7 1.3.4.1.1 Supportive care...... 9 1.3.4.1.1.1 Pain and other symptoms...... 9 1.3.4.1.1.2 Management of adverse effects of treatment...... 10 1.3.4.2 Care of the dying patient...... 10 1.4 Adjustment to cancer...... 11 1.4.1 Cancer and emotional distress...... 12 1.4.1.1 Adjustment disorders and cancer ...... 13 1.4.1.2 Depression and cancer ...... 13 1.4.1.3 Anxiety disorders and cancer...... 15 1.4.2 Pattern of distress over time...... 15 1.4.2.1 Diagnosis ...... 16 1.4.2.2 Acute survival...... 17 1.4.2.3 Extended survival ...... 18 1.4.2.4 Permanent survival ...... 18 1.4.2.4.1 Survival and positive psychological consequences ...... 19 1.4.3 Recurrence ...... 20 1.4.4 Transition to palliative care...... 20 1.4.5 Quality of life...... 20 1.4.5.1 Definition of QOL ...... 21 1.4.5.2 QOL assessment ...... 22 1.4.5.3 QOL and prognosis...... 24 1.4.6 Factors influencing adjustment to cancer...... 24 1.4.6.1 Disease variables and adjustment ...... 24 1.4.6.2 Demographic variables and adjustment ...... 25 1.4.6.3 Health behaviours and adjustment ...... 26 1.5 Psychosocial factors and adjustment to cancer ...... 27 1.5.1 Coping with cancer ...... 27 1.5.1.1 Types of coping strategies ...... 28 1.5.2 Coping and adjustment...... 29 1.5.2.1 Fighting spirit and helplessness ...... 30 1.5.2.2 Avoidance/denial ...... 31 1.5.2.3 Variation in coping over time ...... 32 1.5.2.4 Disease severity and coping...... 33 1.5.3 Coping style and disease progression...... 34 1.5.4 Psychosocial stress and disease progression ...... 35 1.5.5 Spirituality/religion and adjustment to cancer...... 36 1.5.5.1 Definition of terms...... 36 1.5.6 Religion /spirituality and wellbeing in cancer patients ...... 37 1.5.6.1 Coping ...... 38 1.5.6.2 Negative and positive religious coping...... 40 1.5.6.3 Spirituality/religiosity distinction ...... 40 1.5.7 Social support and cancer...... 41 1.5.7.1 Types of social support...... 41 1.5.7.2 Social support and adjustment to cancer...... 42 1.5.7.2.1 Instrumental support...... 43 1.6 Psychosocial interventions in cancer care...... 44 1.6.1 Need for psychosocial support ...... 44 1.6.2 Psychosocial interventions...... 45 1.6.2.1 Group interventions ...... 46 1.6.3 Psychosocial interventions and adjustment...... 48 1.6.3.1 Educational interventions ...... 50 1.6.3.2 Cognitive-behavioural methods...... 51 1.6.3.2.1 Behavioural interventions ...... 53 1.6.3.2.1.1 Psychospiritual approaches...... 54 1.6.3.2.1.2 Exercise and dietary interventions...... 55 1.6.3.3 Supportive psychotherapy...... 55 1.6.3.4 Peer support groups ...... 57 1.6.3.5 Who benefits from which intervention ...... 58 1.6.4 Psychosocial interventions and survival...... 59 1.6.4.1 Early reports...... 59 1.6.4.2 Intervention studies...... 59 ii 1.7 Complementary approaches to cancer treatment ...... 61 1.7.1 Definition of CAM...... 62 1.7.2 Prevalence of alternative and complementary treatments ...... 63 1.7.2.1 Characteristics of those who use CAM therapies ...... 64 1.7.2.1.1 Sociodemographic and disease factors...... 64 1.7.2.1.2 Satisfaction with CAM therapies ...... 65 1.7.2.1.3 Psychosocial factors and CAM use ...... 65 1.7.2.1.4 CAM and standard medical treatment...... 66 1.7.3 Effectiveness of CAM treatments ...... 68 1.7.3.1 Diet and cancer ...... 69 1.7.3.1.1 Dietary interventions ...... 70 1.8 Meditation...... 70 1.8.1 Types of meditation...... 70 1.8.1.1 Mindfulness meditation ...... 71 1.8.1.2 Mindfulness-based stress reduction (MBSR) ...... 72 1.8.1.3 Mindfulness meditation-based therapies...... 73 1.8.1.4 Transcendental Meditation (TM)...... 73 1.8.1.5 Other types of meditation...... 74 1.8.2 Meditation and relaxation ...... 74 1.8.3 Physiological effects of meditation...... 76 1.8.3.1 The cardiovascular system...... 76 1.8.3.2 The endocrine system ...... 77 1.8.3.3 The immune system...... 78 1.8.3.4 EEG studies ...... 78 1.8.3.5 Other physiological effects ...... 79 1.8.4 Cognitive and behavioural effects...... 79 1.8.4.1 Cognitive change and mindfulness ...... 80 1.8.5 Meditation and wellbeing...... 81 1.8.5.1 Stress reduction and general wellbeing...... 82 1.8.5.1.1 Non-clinical populations ...... 82 1.8.5.1.2 Mixed clinical populations ...... 83 1.8.5.2 Pain relief...... 85 1.8.5.3 Anxiety ...... 86 1.8.5.4 Cancer...... 87 1.8.5.5 Other conditions...... 89 1.8.6 Contraindications ...... 90 1.8.7 Adverse effects...... 90 1.8.8 Methodological considerations ...... 92 1.8.8.1 Research in meditation...... 92 1.8.8.2 Control groups ...... 93 iii 1.8.8.3 Evaluation of treatment implementation...... 94 1.8.8.4 Clinical significance ...... 94 1.8.8.5 Research design and sample size ...... 94 1.8.8.6 Program completion...... 95 1.8.8.7 Compliance with and maintenance of practice ...... 95 1.8.9 Subjective assessment of meditation...... 97 1.8.9.1 Meditation assessment – scales and measures ...... 97 1.8.9.2 Mindfulness assessment...... 98 1.8.9.2.1 Mindful Attention Awareness Scale...... 99 1.8.9.2.2 Freiburg Mindfulness Inventory...... 99 1.8.9.2.3 Kentucky Inventory of Mindfulness Skills...... 99 1.8.10 Possible directions for future research ...... 100 1.8.11 Summary of effects of meditation interventions ...... 101 1.9 The Gawler Foundation...... 102 1.9.1 History...... 102 1.9.2 Retreat environment...... 103 1.9.3 The program...... 104 1.9.3.1 Meditation...... 104 1.9.3.2 Diet ...... 104 1.10 Summary and conclusions...... 106 1.11 Aims of study ...... 108

CHAPTER TWO: STUDY ONE METHODS

2.1 Introduction...... 110 2.2 Procedures ...... 110 2.2.1 Pre-intervention questionnaire administration...... 110 2.2.2 Post-intervention questionnaire administration ...... 111 2.2.3 Follow-up questionnaire administration ...... 111 2.2.4 Salivary cortisol collection ...... 111 2.3 Participants...... 112 2.4 Materials ...... 112 2.4.1 Questionnaires ...... 112 2.4.2 Measures...... 113 2.4.2.1 Profile of Mood States (POMS)...... 113 2.4.2.2 The Functional Assessment of Chronic Illness Therapy—Spirituality (FACIT-Sp) .... 114 2.4.2.3 The Mini-Mental Adjustment to Cancer (Mini-MAC) ...... 115 2.5 Statistical analysis ...... 116

iv CHAPTER THREE: CHARACTERISTICS OF STUDY PARTICIPANTS

3.1 Introduction...... 118 3.2 Demographic characteristics...... 118 3.2.1 Comparisons with other studies...... 123 3.3 Disease characteristics ...... 125 3.3.1 Time from diagnosis to attendance at The Gawler Foundation...... 127 3.3.2 Treatment received ...... 128 3.3.3 Nutritional supplements...... 130 3.4 Lifestyle factors...... 131 3.4.1 Social support ...... 131 3.4.2 Exercise ...... 132 3.4.3 Attendance at religious institutions...... 134 3.4.4 Meditation practice ...... 134 3.4.5 Psychosocial interventions...... 136 3.4.6 Diet before attendance at The Gawler Foundation program...... 136 3.4.7 Lifestyle changes ...... 138 3.5 Baseline measures...... 140 3.5.1 Profile of Mood States (POMS) at baseline...... 140 3.5.2 Mini-Mental Adjustment to Cancer (Mini-MAC) at baseline ...... 144 3.5.3 Functional Assessment of Chronic Illness Therapy (FACIT-Sp) at baseline ...... 147 3.5.4 Salivary cortisol at baseline ...... 149 3.6 Analysis of relationships between characteristics of study participants and baseline measures...... 149 3.6.1 Removal of outliers...... 149 3.6.2 POMS scores at baseline after removal of outliers...... 150 3.6.3 Mini-MAC scores at baseline after removal of outliers...... 151 3.6.4 FACIT-Sp scores at baseline after removal of outliers...... 151 3.6.5 Salivary cortisol at baseline after removal of outliers...... 153 3.6.6 Statistical and procedural issues ...... 154 3.6.7 Sociodemographic variables and adjustment...... 154 3.6.7.1 Gender ...... 155 3.6.7.2 Age ...... 156 3.6.7.3 Relationship status...... 158 3.6.7.4 Level of education ...... 159 3.6.8 Disease variables and adjustment ...... 161 3.6.8.1 Time from diagnosis ...... 163 3.6.8.2 Current treatment ...... 165 3.6.9 Social support ...... 167 3.6.10 Church attendance...... 167

v 3.6.11 Exercise and diet ...... 168 3.6.12 Meditation ...... 170 3.6.13 Participation in psychosocial interventions...... 175 3.6.14 Relationships between mood and coping ...... 177 3.6.14.1 Coping style and POMS TMD ...... 180 3.6.15 Relationships between QOL and coping...... 182 3.6.15.1 Coping style and FACIT-Sp...... 183 3.6.16 Relationships between mood and QOL...... 187 3.7 Summary...... 189

CHAPTER FOUR: IMPACT OF THE INTERVENTION

4.1 Introduction...... 191 4.2 Baseline and program completion comparisons...... 191 4.2.1 POMS...... 193 4.2.2 Mini-MAC...... 199 4.2.3 FACIT-Sp...... 202 4.2.4 Salivary cortisol...... 203 4.2.5 Effect sizes ...... 206 4.3 Comparisons between those who improved and those who worsened...... 207 4.3.1 POMS...... 207 4.3.2 FACIT-Sp...... 210 4.4 Characteristics affecting change scores...... 213 4.4.1 POMS...... 213 4.4.1.1 Links between changes in coping and change in mood ...... 216 4.4.2 Mini-MAC...... 218 4.4.3 FACIT-Sp...... 220 4.4.3.1 Links between changes in coping and changes in QOL...... 223 4.5 Summary ...... 225

CHAPTER FIVE: EVALUATION OF THE GAWLER MEDITATION QUESTIONNAIRE

5.1 Introduction...... 227 5.2 Scale development...... 227 5.2.1 Creation of item pool...... 228 5.2.2 Administration and testing...... 228 5.2.3 Scale refinement ...... 228 5.2.4 Scale evaluation...... 229

vi 5.2.4.1 Factor analysis ...... 229 5.2.4.1.1 Assessing the suitability of the data for factor analysis...... 230 5.2.4.1.2 Methods of extraction...... 231 5.2.4.1.3 Selection of factors for rotation...... 231 5.2.4.1.4 Rotation of factors...... 232 5.2.4.1.5 Interpretation of the factors ...... 232 5.2.5 Reliability ...... 233 5.2.6 Validity...... 234 5.3 Evaluation of the Gawler meditation questionnaire ...... 235 5.3.1 Assessing the suitability of the data for factor analysis and extraction of factors ...... 237 5.3.2 Rotation of factors ...... 238 5.3.2.1 Three-factor solution...... 238 5.3.3 Interpretation of the factors...... 240 5.3.4 Formation of subscales of GMQ-20 ...... 242 5.3.4.1 Subscale intercorrelations ...... 244 5.3.5 Correlations with other measures...... 244 5.3.5.1 Physical effects of meditation subscale...... 245 5.3.5.2 Cognitive effects of meditation subscale ...... 245 5.3.5.3 Expanded consciousness subscale...... 247 5.4 Summary...... 248

CHAPTER SIX: THREE-MONTH FOLLOW-UP

6.1 Introduction...... 250 6.2 Comparison of follow-up respondents and non-respondents at three-month follow-up ...... 252 6.3 Compliance with program recommendations at 3-month follow-up...... 256 6.3.1 Meditation...... 256 6.3.2 Diet ...... 258 6.3.3 Exercise ...... 259 6.4 Mood, coping and QOL at three-month follow-up...... 260 6.4.1 Comparison of program completion and 3-month change scores...... 260 6.4.2 Changes in mood, coping and QOL over time...... 264 6.4.3 Predominant coping styles at three-month follow-up ...... 269 6.4.4 Correlations between coping and mood and QOL...... 272 6.4.5 Comparisons between those who worsen and those who improve ...... 274 6.4.6 Links between compliance with program recommendations and measures...... 281 6.4.6.1 Meditation...... 281 6.5 Summary...... 285

vii CHAPTER SEVEN: SIX AND 12-MONTH FOLLOW-UP

7.1 Introduction...... 288 7.2 Compliance with program recommendations at six-month follow-up ...... 288 7.2.1 Meditation practice ...... 288 7.2.2 Diet ...... 290 7.2.3 Exercise ...... 291 7.3 Mood, coping and QOL at six-month follow-up...... 292 7.3.1 Comparison of program completion to six-month change scores...... 292 7.3.2 Predominant coping styles at six-month follow-up ...... 295 7.3.3 Links between compliance and measures at six months...... 296 7.4 12-month follow-up...... 299 7.4.1 Compliance with program recommendations at 12-month follow-up ...... 299 7.4.1.1 Meditation practice ...... 299 7.4.1.2 Diet ...... 300 7.4.1.3 Exercise...... 301 7.5 Mood, coping and QOL at 12-month follow-up ...... 302 7.5.1 Comparison of program completion to 12-month change scores ...... 302 7.5.2 Change over mood, coping and QOL over time ...... 305 7.5.3 Predominant coping styles at 12-month follow-up ...... 316 7.5.4 Links between compliance and measures ...... 317 7.6 Comparisons with other studies...... 318 7.7 Summary...... 321

CHAPTER EIGHT: EFFECTS OF MEDITATION SCALE DEVELOPMENT

8.1 Introduction...... 323 8.2 Defining and assessing meditation...... 323 8.2.1 Incorporating other concepts ...... 324 8.2.2 Assessing quality of meditation...... 325 8.2.3 Links between individual characteristics and outcomes ...... 325 8.3 Methods...... 325 8.3.1 Creation of item pool...... 326 8.3.2 Administration and testing...... 328 8.3.3 Participants ...... 329 8.3.4 Materials ...... 330 8.3.4.1 The Mindful Attention Awareness Scale ...... 331 8.3.4.2 Perceived control of internal states ...... 331 8.3.4.3 Physical Symptom Checklist ...... 332

viii 8.3.4.4 Spiritual wellbeing scale ...... 332 8.3.4.5 POMS Short Form ...... 332 8.4 Scale refinement ...... 333 8.5 Experiences During Meditation scale evaluation ...... 334 8.5.1 Assessing the suitability of the data for factor analysis ...... 335 8.5.2 Methods of extraction ...... 335 8.5.3 Selection of factors for rotation ...... 336 8.5.4 Rotation of factors ...... 338 8.5.5 Interpretation of factors ...... 340 8.5.6 Formation of subscales ...... 341 8.5.6.1 Subscale intercorrelations ...... 343 8.5.7 Reliability ...... 345 8.5.8 Validity...... 346 8.5.8.1 Effects of sociodemographic variables on subscale scores ...... 347 8.5.8.2 Links between meditation experience and subscale scores...... 349 8.5.8.3 Correlations with other scales...... 353 8.5.8.3.1 Data screening...... 353 8.5.8.3.2 PCOISS ...... 355 8.5.8.3.3 MAAS ...... 356 8.5.8.3.4 Physical Symptom Checklist...... 357 8.5.8.3.5 POMS-SF ...... 357 8.5.8.3.6 Spiritual wellbeing ...... 358 8.6 Effects of Meditation in Everyday Life scale evaluation...... 359 8.6.1 Assessing the suitability of the data for factor analysis ...... 359 8.6.2 Extraction and selection of factors for rotation...... 359 8.6.3 Rotation of factors ...... 361 8.6.4 Scale formation...... 365 8.6.5 Reliability ...... 367 8.6.6 Validity...... 367 8.6.6.1 Effects of sociodemographic variables on subscale scores ...... 368 8.6.6.2 Links between meditation practice and Effects of meditation in Everyday Life scale ...... 369 8.6.6.3 Correlations with other scales...... 370 8.6.6.3.1 PCOISS ...... 371 8.6.6.3.2 MAAS ...... 372 8.6.6.3.3 Physical Symptom Checklist...... 372 8.6.6.3.4 POMS-SF ...... 373 8.6.6.3.5 Spiritual wellbeing ...... 373 8.6.7 Correlations between Effects of Meditation in Everyday Life and Experiences During Meditation subscales ...... 373

8.7 Limitations and directions for future research...... 374 8.8 Summary...... 375

CHAPTER NINE: SUMMARY AND CONCLUSIONS

9.1 Introduction...... 378 9.2 Aims...... 379 9.3 Characteristics of program participants...... 380 9.4 Impact of the intervention...... 382 9.5 Analysis of Gawler meditation questionnaire...... 383 9.6 Follow-up ...... 384 9.6.1 Three- month follow-up ...... 384 9.6.2 Six and 12-month follow-up...... 386 9.7 Development of the Effects of Meditation scale...... 387 9.8 Limitations of the study and future research directions...... 390

REFERENCES 394

APPENDICES 463

x List of Tables

Table 3-1 Age of participants...... 119

Table 3-2 Age ranges of participants...... 119

Table 3-3 Relationship status of participants...... 120

Table 3-4 Education level of participants ...... 120

Table 3-5 Employment status of participants...... 121

Table 3-6 State and country of residence of participants...... 122

Table 3-7 Comparisons of sociodemographic characteristics of participants in the current study with those of other studies ...... 124

Table 3-8 Types of cancer reported by participants...... 125

Table 3-9 Participants with metastatic and non-metastatic disease ...... 126

Table 3-10 Stage of cancer at diagnosis ...... 127

Table 3-11 Time in months from diagnosis to attendance at The Gawler Foundation ...... 127

Table 3-12 Time period from diagnosis to attendance at The Gawler Foundation ...... 128

Table 3-13 Treatment received by participants...... 129

Table 3-14 Number of treatments received ...... 129

Table 3-15 Social support received by participants...... 131

Table 3-16 Hours of exercise reported by participants...... 133

Table 3-17 Exercise scores ...... 133

Table 3-18 Typical level of exercise of participants...... 134

Table 3-19 Time spent meditating...... 135

Table 3-20 Self-rated proficiency at meditation...... 135

Table 3-21 Diet before attendance at The Gawler Foundation program...... 137

Table 3-22 Lifestyle changes since diagnosis ...... 139

Table 3-23 POMS scores at baseline ...... 140

Table 3-24 Comparisons of POMS TMD scores and subscale scores in the current study with those in other studies ...... 141

Table 3-25 Comparisons of POMS TMD scores in various studies...... 142

Table 3-26 Mini-MAC scores at baseline...... 144

xi Table 3-27 Comparisons of Mini-MAC scores of participants in the current study with those of other studies ...... 145

Table 3-28 Predominant coping styles among participants at baseline...... 146

Table 3-29 FACIT-Sp scores at baseline ...... 147

Table 3-30 Comparison of FACT-G and FACIT-Sp scores of participants in the current study with those of other studies ...... 148

Table 3-31 Salivary cortisol levels at baseline...... 149

Table 3-32 POMS scores at baseline after removal of outliers...... 150

Table 3-33 Mini-MAC scores at baseline after removal of outliers...... 151

Table 3-34 FACIT-Sp scores at baseline after removal of outliers...... 152

Table 3-35 Faith and Meaning/Peace subscales of Spiritual wellbeing subscale...... 152

Table 3-36 Salivary cortisol levels at baseline after removal of outliers...... 153

Table 3-37 Comparison of normally distributed baseline measures in males and females ...... 155

Table 3-38 Comparison of non-normally distributed baseline measures in men and women...... 156

Table 3-39 Correlations between age and baseline measures ...... 157

Table 3-40 Comparison of normally distributed baseline measures according to relationship status ....158

Table 3-41 Comparison of non-normally distributed baseline measures according to relationship status ...... 159

Table 3-42 Comparison of normally distributed baseline measures according to level of education ..... 160

Table 3-43 Comparison of non-normally distributed baseline measures according to level of education...... 161

Table 3-44 Comparison of normally distributed baseline measures in those with metastatic and non- metastatic disease ...... 162

Table 3-45 Comparison of non-normally distributed baseline measures in those with metastatic and non-metastatic disease...... 163

Table 3-46 Correlation between baseline measures and time from diagnosis in months ...... 164

Table 3-47 Comparison of normally distributed baseline measures in those with currently undergoing treatment and those not undergoing treatment ...... 166

Table 3-48 Comparison of non-normally distributed baseline measures in those currently undergoing treatment and those not undergoing treatment...... 167

Table 3-49 Correlations between exercise scores and baseline measures...... 169

xii Table 3-50 Comparison of normally distributed baseline measures in those with a regular meditation practice and those without ...... 170

Table 3-51 Comparison of non-normally distributed baseline measures in those with a regular meditation practice and those without ...... 171

Table 3-52 Correlation between baseline measures and time spent meditating ...... 172

Table 3-53 Correlation between baseline measures and self-rated proficiency at meditation ...... 173

Table 3-54 Comparison of baseline measures in those who notice the effects of meditation in everyday life and those who do not...... 174

Table 3-55 Comparison of normally distributed baseline measures in those who had participated in psychosocial interventions and those who had not...... 176

Table 3-56 Comparison of non-normally distributed baseline measures in those who had participated in psychosocial interventions and those who had not...... 177

Table 3-57 Coping strategies predicting TMD ...... 180

Table 3-58 Comparison of POMS TMD according to predominant coping style ...... 181

Table 3-59 Coping strategies predicting FACIT-Sp...... 184

Table 3-60 Comparison of FACIT-Sp according to predominant coping style...... 185

Table 3-61 Comparison of FACT-G according to predominant coping style ...... 186

Table 3-62 Comparison of Spiritual wellbeing according to predominant coping style...... 186

Table 3-63 Correlations between POMS and FACIT-Sp at baseline...... 188

Table 4-1 Baseline and program completion comparisons for normally distributed measures...... 192

Table 4-2 Baseline and program completion comparisons for non-normally distributed measures ...... 193

Table 4-3 Comparisons of reduction in POMS TMD scores in the current study with those seen in other studies ...... 195

Table 4-4 Comparisons of changes in POMS TMD and subscale scores in the current study with those seen in other studies ...... 196

Table 4-5 Predominant coping styles among participants at baseline and program completion ...... 201

Table 4-6 Comparisons of changes in Mini-MAC scores in the current study with those seen in other studies ...... 202

Table 4-7 Comparisons of changes in FACIT-Sp scores in the current study with those seen in others 203

Table 4-8 Minimally important differences in wellbeing for FACT-G and subscales...... 204

Table 4-9 ANOVAs to compare baseline and program completion measures ...... 206

xiii Table 4-10 Differences in baseline characteristics in those whose POMS TMD improved and those whose POMS TMD worsened after program completion...... 208

Table 4-11 Comparisons of baseline measures between those whose POMS TMD improved and those whose POMS TMD worsened...... 209

Table 4-12 Differences in baseline characteristics in those whose FACIT-Sp improved and those whose FACIT-Sp worsened after program completion ...... 211

Table 4-13 Comparisons of baseline measures between those whose FACIT-Sp improved and those whose FACIT-Sp worsened ...... 212

Table 4-14 Correlations between baseline measures and POMS TMD change scores ...... 214

Table 4-15 Correlation between changes in coping and changes in mood disturbance ...... 215

Table 4-16 Change in coping strategies predicting change in TMD ...... 217

Table 4-17 Correlations between baseline measures and Helplessness-Hopelessness and Anxious Preoccupation change scores ...... 219

Table 4-18 Correlations between baseline measures and FACIT-Sp change scores...... 221

Table 4-19 Correlation between changes in coping and changes in FACIT -Sp ...... 222

Table 4-20 Coping strategies predicting FACIT-Sp...... 224

Table 5-1 Gawler meditation questionnaire...... 236

Table 5-2 Comparison of values from PCA with those of Monte Carlo PCS...... 238

Table 5-3 Pattern matrix after Oblimin rotation...... 239

Table 5-4 Pattern matrix with 20 items remaining (GMQ-20)...... 241

Table 5-5 GMQ-20 subscales...... 242

Table 5-6 Descriptive statistics for each subscale ...... 243

Table 5-7 Spearman correlation coefficients between subscales at program completion ...... 244

Table 5-8 Spearman rank order correlation coefficients between meditation questionnaire subscales and program completion measures...... 247

Table 6-1 Differences in baseline characteristics in respondents and non-respondents at three-month follow-up (categorical variables)...... 247

Table 6-2 Comparisons of normally distributed program completion measures in respondents and non-respondents to three-month follow-up...... 253

Table 6-3 Differences in non-normally distributed program completion measures in respondents and non-respondents to three-month follow-up...... 254

Table 6-4 Differences in change scores in respondents and non-respondents at three months...... 255

xiv Table 6-5 Self-rated proficiency at meditation at three-month follow-up...... 257

Table 6-6 Number of participants who comply with dietary recommendations at three-months...... 258

Table 6-7 Exercise participation at 3-month follow-up ...... 259

Table 6-8 Typical level of exercise at 3-month follow-up ...... 259

Table 6-9 Program completion and three-month follow-up comparisons for normally distributed measures...... 261

Table 6-10 Program completion and three-month follow-up comparisons for non-normally distributed measures...... 262

Table 6-11 Predominant coping styles among participants at baseline and program completion ...... 270

Table 6-12 Comparison of POMS TMD according to predominant coping style ...... 271

Table 6-13 Comparison of FACIT-Sp scores according to predominant coping style...... 272

Table 6-14 Correlation between coping and mood disturbance at three-month follow-up...... 273

Table 6-15 Correlation between coping and FACIT-Sp at three-month follow-up...... 273

Table 6-16 Differences in baseline characteristics in those whose POMS TMD improved and those whose POMS TMD worsened at three-month follow-up (categorical variables) ...... 275

Table 6-17 Differences in baseline characteristics in those whose FACIT-Sp improved and those whose FACIT-Sp worsened at three-month follow-up (categorical variables) ...... 276

Table 6-18 Spearman correlations between POMS and FACIT-Sp and subscale scores on exit and change in measure at three-month follow-up...... 277

Table 6-19 Correlation between changes in coping and changes in mood disturbance from program completion to three-month follow-up ...... 279

Table 6-20 Correlation between changes in coping and changes in FACIT-Sp from program completion to three-month follow-up ...... 280

Table 6-21 Spearman correlations between meditation practice and measures at three months ...... 283

Table 7-1 Self-rated proficiency of meditation at six-month follow-up...... 289

Table 7-2 Compliance with dietary recommendations at six-month follow-up...... 290

Table 7-3 Exercise participation at six-month follow-up...... 291

Table 7-4 Typical level of exercise at six-month follow-up...... 291

Table 7-5 Program completion and six-month follow-up comparisons for normally distributed measures...... 293

Table 7-6 Program completion and six-month follow-up comparisons for non-normally distributed measures...... 294

xv Table 7-7 Predominant coping styles among participants...... 296

Table 7-8 Correlations between meditation practice and measures at 6-month follow-up...... 297

Table 7-9 Self-rated proficiency of meditation at 12-month follow-up ...... 299

Table 7-10 Compliance with dietary recommendations at 12-month follow-up ...... 300

Table 7-11 Exercise participation at 12-month follow-up ...... 301

Table 7-12 Typical level of exercise at 12-month follow-up ...... 301

Table 7-13 Program completion and 12-month follow-up comparisons for all measures...... 303

Table 7-14 Predominant coping styles among participants...... 316

Table 7-15 Correlations between meditation questionnaire subscales and 12-month measures...... 317

Table 7-16 Comparisons of follow-up POMS scores with those of other studies ...... 319

Table 8-1 Sociodemographic characteristics of sample (1)...... 329

Table 8-2 Sociodemographic characteristics of sample (2)...... 330

Table 8-3 Monte Carlo parallel analysis for Experiences During meditation scale...... 336

Table 8-4 Pattern matrix for five- factor solution for Experiences During meditation scale ...... 339

Table 8-5 Component correlation matrix...... 341

Table 8-6 Subscales of the Experiences During Meditation scale ...... 342

Table 8-7 Spearman correlation coefficients between subscales at program completion ...... 344

Table 8-8 Descriptive statistics for subscales ...... 345

Table 8-9 Spearman correlations between age and Experiences During Meditation subscale scores ... 347

Table 8-10 Gender differences in Experiences During Meditation subscale scores...... 348

Table 8-11 Relationship status differences in Experiences During Meditation subscale scores ...... 348

Table 8-12 Level of education differences in Experiences During Meditation subscale scores ...... 349

Table 8-13 Details of meditation practice...... 350

Table 8-14 Length of time since start of meditation practice...... 351

Table 8-15 Spearman correlations between subscale scores and aspects of meditation experience ...... 352

Table 8-16 Descriptive statistics for validation scales...... 354

Table 8-17 Spearman correlations with other scales...... 355

Table 8-18 Monte Carlo parallel analysis for Effects of Meditation in Everyday Life scale ...... 360

Table 8-19 Component matrix for single factor solution ...... 363

Table 8-20 30-item scale of the Effects of Meditation in Everyday Life...... 366

xvi Table 8-21 Descriptive statistics for Effects of Meditation in Everyday Life scale...... 367

Table 8-22 Gender differences in subscale scores ...... 368

Table 8-23 Relationship status differences in subscale scores...... 369

Table 8-24 Level of education differences in subscale scores...... 369

Table 8-25 Spearman correlations between aspects of meditation practice and scores on Effects of Meditation in Everyday Life scale ...... 370

Table 8-26 Spearman correlations with other scales...... 371

Table 8-27 Correlations with Experiences During Meditation subscales...... 374

Table I- 1 Participants removed from analysis of measures at baseline...... 498

Table J- 1 POMS scores after program completion...... 510

Table J- 2 Mini-MAC scores after program completion ...... 510

Table J- 3 FACIT-Sp scores after program completion ...... 518

Table J- 4 Salivary cortisol levels after program completion ...... 511

Table J- 5 Changes in POMS scores from baseline to program completion...... 511

Table J- 6 Changes in Mini-MAC scores from baseline to program completion ...... 511

Table J- 7 Changes in FACIT-Sp scores from baseline to program completion...... 512

Table J- 8 Change in salivary cortisol from baseline to program completion ...... 512

Table K- 1 Correlation matrix for initial PCA...... 514

Table K- 2 Component matrix for initial PCA ...... 515

Table K- 3 Unrotated component matrix forcing three factors...... 516

Table K- 4 Structure matrix after Oblimin rotation...... 517

Table K- 5 Unrotated component matrix for four-factor solution ...... 518

Table K- 6 Pattern matrix after Oblimin rotation of four-factor solution...... 519

Table K- 7 Structure matrix after Oblimin rotation of four-factor solution...... 520

Table K- 8 Structure matrix with item 13 removed...... 521

Table K- 9 Structure matrix with items 13 and 14 removed ...... 522

Table K- 10 Structure matrix with items 13,14 and 17 removed...... 523

Table K- 11 Structure matrix with20 items remaining (GMQ-20)...... 524

Table L- 1 POMS scores at three-month follow-up ...... 526

Table L- 2 Mini-MAC scores at three-month follow-up...... 526

xvii Table L- 3 FACIT-Sp scores at three-month follow-up...... 526

Table L- 4 Changes in POMS scores from program completion to three-month follow-up ...... 527

Table L- 5 Changes in Mini-MAC scores from program completion to three-month follow-up...... 527

Table L- 6 Changes in FACIT-Sp scores from program completion to 3-month follow-up...... 527

Table M- 1 POMS scores at six-month follow-up ...... 529

Table M- 2 Mini-MAC scores at six-month follow-up ...... 529

Table M- 3 FACIT-Sp scores at six-month follow-up ...... 529

Table M- 4 Changes in POMS scores from program completion to six-month follow-up ...... 530

Table M- 5 Changes in Mini-MAC scores from program completion to six-month follow-up ...... 530

Table M- 6 Changes in FACIT-Sp scores from program completion to six-month follow-up ...... 530

Table M- 7 POMS scores at 12-month follow-up ...... 531

Table M- 8 Mini-MAC scores at 12-month follow-up...... 531

Table M- 9 FACIT-Sp scores at 12-month follow-up...... 531

Table M- 10 Changes in POMS scores from program completion to 12-month follow-up...... 532

Table M- 11 Changes in Mini-MAC scores from program completion to 12-month follow-up...... 532

Table M- 12 Changes in FACIT-Sp scores from program completion to 12-month follow-up...... 532

Table R- 1 Table of eigenvalues in Principal Components Analysis for Effects During Meditation scale...... 556

Table R- 2 Unrotated component matrix for five-factor solution for Experiences During Meditation scale with four items removed ...... 557

Table R- 3 Rotated component matrix for five-factor solution for Experiences During Meditation with four items removed ...... 558

Table R- 4 Rotated pattern matrix for five-factor solution for Experiences During Meditation scale with four items removed ...... 559

Table R- 5 Rotated structure matrix for five-factor solution for Experiences During Meditation scale with four items removed ...... 560

Table R- 6 Structure matrix for five-factor solution for Experiences During Meditation scale with 31 items ...... 561

Table R- 7 Table of eigenvalues in PCA for Effects of Meditation in Everyday Life scale...... 562

Table R- 8 Unrotated component matrix for Effects of Meditation on Everyday lifes scale...... 564

Table R- 9 Pattern matrix for Effects of Meditation in Everyday Life with Oblimin Rotation...... 566

Table R- 10 Structure matrix for Rotated Effects of Meditation in Everyday Life scale...... 568 xviii List of Figures

Figure 5.1 Catell's scree plot for Gawler meditation questionnaire ...... 237

Figure 6-1 Participation data for study...... 251

Figure 6-2 Change in mean POMS TMD scores over three months ...... 264

Figure 6-3 Change in mean FACIT-Sp scores over three months...... 265

Figure 6-4 Change in mean FACT-G scores over three months ...... 265

Figure 6-5 Change in mean Helplessness-Hopelessness scores over three months...... 266

Figure 6-6 Change in mean Anxious Preoccupation scores over three months...... 266

Figure 6-7 Change in mean Spiritual wellbeing scores over three months...... 267

Figure 6-8 Change in mean Physical wellbeing scores over three months ...... 268

Figure 6-9 Change in mean Vigor-Activity scores over three months...... 268

Figure 7-1 Change in POMS TMD score over 12 months ...... 305

Figure 7-2 Change in Tension-Anxiety score over 12 months...... 306

Figure 7-3 Change in Depression-Dejection score over 12 months...... 306

Figure 7-4 Change in Anger-Hostility score over 12 months...... 307

Figure 7-5 Change in Vigor-Activity score over 12 months...... 307

Figure 7-6 Change in Fatigue-Inertia score over 12 months...... 308

Figure 7-7 Change in Confusion-Bewilderment score over 12 months...... 308

Figure 7-8 Change in Helplessness-Hopelessness score over 12 months ...... 309

Figure 7-9 Change in Anxious Preoccupation score over 12 months ...... 309

Figure 7-10 Change in Fighting Spirit score over 12 months...... 310

Figure 7-11 Change in Cognitive Avoidance score over 12 months ...... 310

Figure 7-12 Change in Fatalism score over 12 months ...... 311

Figure 7-13 Change in FACIT-Sp score over 12 months ...... 311

Figure 7-14 Change in FACT-G score over 12 months...... 312

Figure 7-15 Change in Physical wellbeing score over 12 months ...... 317

Figure 7-16 Change in Social wellbeing score over 12 months ...... 313

Figure 7-17 Change in Emotional wellbeing score over 12 months ...... 313

Figure 7-18 Change in Functional wellbeing score over 12 months...... 314 xix Figure 7-19 Change in Spiritual wellbeing score over 12 months ...... 314

Figure 8-1 Scree plot for Experiences During Meditation scale...... 337

Figure 8-2 Scree plot for Effects of Meditation in Everyday Life scale...... 361

Figure I- 1 POMS TMD at baseline ...... 499

Figure I- 2 Tension-Anxiety at baseline ...... 499

Figure I- 3 Depression-Dejection at baseline ...... 500

Figure I- 4 Anger-Hostility at baseline...... 500

Figure I- 5 Vigor-Activity at baseline...... 501

Figure I- 6 Fatigue-Inertia at baseline...... 501

Figure I- 7 Confusion-Bewilderment at baseline...... 502

Figure I- 8 Helplessness-Hopelessness at baseline ...... 502

Figure I- 9 Anxious Preoccupation at baseline ...... 503

Figure I- 10 Fighting Spirit at baseline...... 503

Figure I- 11 Cognitive Avoidance at baseline ...... 504

Figure I- 12 Fatalism at baseline ...... 504

Figure I- 13 FACIT-Sp at baseline...... 505

Figure I- 14 FACT-G at baseline ...... 505

Figure I- 15 Physical wellbeing at baseline ...... 506

Figure I- 16 Social wellbeing at baseline...... 506

Figure I- 17 Emotional wellbeing at baseline ...... 507

Figure I- 18 Functional wellbeing at baseline ...... 507

Figure I- 19 Spiritual wellbeing at baseline...... 508 Figure R- 1 PCOISS...... 570

Figure R- 7 MAAS ...... 570

Figure R- 8 Spiritual wellbeing...... 571

Figure R- 9 POMS-SF TMD...... 571

Figure R- 10 POMS-SF Tension ...... 572

Figure R- 11 POMS-SF- Depression...... 572

Figure R- 12 POMS-SF Anger ...... 573

Figure R- 13 POMS-SF Vigor...... 573

xx Figure R- 14 POMS-SF Fatigue...... 574

Figure R- 15 POMS-SF Confusion...... 574

Figure R- 16 Symptoms Checklist ...... 575

Figure R- 12 EDM-Cognitive Effects ...... 575

Figure R- 13 EDM-Emotional Effects ...... 576

Figure R- 14 EDM-Mystical experiences...... 576

Figure R- 15 EDM-Relaxation ...... 577

Figure R- 16 EDM-Physical discomfort...... 577

xxi List of Appendices

Appendix A: Participant information sheet (Study 1)...... 464 Appendix B: Swinburne University of Technology Ethics Committee Approval (Study 1)...... 466 Appendix C: Consent form (Study 1)...... 468 Appendix D: Pre-intervention questionnaires (Study 1) ...... 473 Appendix E: Measures administered at baseline, program completion, three-month follow-up, 6-month follow-up and 12-month follow-up (Study 1)...... 479 Appendix F: Initial meditation questionnaire administered at program completion (Study 1) ...... 486 Appendix G: Follow-up questionnaire administered three, six and 12 months after program completion (Study 1) ...... 489 Appendix H: Instructions for saliva collection (Study 1)...... 495 Appendix I: Statistical and procedural issues in the analysis of baseline data (Study 1) ...... 497 Appendix J: POMS, Mini-MAC FACIT-Sp and salivary cortisol after program completion (Study 1).. 509 Appendix K: Additional statistical analyses of Gawler meditation questionnaire (Study 1) ...... 513 Appendix L: POMS, Mini-MAC and FACIT-Sp at three-month follow-up (Study 1) ...... 525 Appendix M: POMS, Mini-MAC and FACIT-Sp at six and 12-month follow-up (Study 1)...... 528 Appendix N: Ethics approval letter for meditation questionnaire development (Study 2)...... 533 Appendix O: Preliminary meditation explanatory statement and questionnaire (Study 2) ...... 535 Appendix P: Explanatory statement for final meditation questionnaire (Study 2)...... 540 Appendix Q: Meditation questionnaire (Study 2) ...... 542 Appendix R: Additional statistical analyses of Effects of Meditation questionnaire (Study 2) ...... 555 Appendix S: Final Effects of meditation scale (Study 2) ...... 578

xxii Abstract

The popularity of non-mainstream cancer treatments raises complex issues for patients and medical practitioners and it is vital to scientifically evaluate effectiveness and investigate mechanisms of action of complementary treatments. This thesis describes sociodemographic, medical and psychological characteristics of participants in The Gawler Foundation program, which incorporates meditation, social support, positive thinking and a vegetarian diet. It describes program impact in terms of: Profile of Mood States (POMS), Mini-Mental Adjustment to Cancer (Mini-MAC), Functional Assessment of Chronic Illness Therapy (FACIT) and salivary cortisol levels. Compliance with program recommendations for up to 12-months and effects on adjustment were explored. This thesis also describes the development of a scale to assess the effects of meditation.

Program participants (n=112) were predominantly female, well-educated, younger in age with good social support. Over 60% reported metastatic disease and 50% had been diagnosed for over a year. Improvements in all measures were found at program completion, with Spiritual wellbeing particularly linked to improvement in quality of life (QOL). Those with higher levels of mood disturbance and lower QOL at baseline benefited more than those who were less well adjusted.

Analysis of three, six, and 12-month follow-up data showed high compliance with program recommendations. Improvements seen at program completion were mostly not maintained at follow-up, although improvements from baseline were. These results suggest that the program has significant beneficial effects on adjustment but that these may not be fully maintained at follow-up, possibly due to difficulty incorporating program recommendations into everyday life and increasing disease severity. Study limitations include self-selection, high drop-out rates and lack of a control group.

Initial investigation suggested that quality of meditation experience was linked to improved adjustment and this thesis describes the initial development of a scale to assess the effects of meditation, which was divided into two sections: Experiences During Meditation and Effects of Meditation in Everyday Life, and trialled on 236 participants. Scale evaluation involved factor analysis, reliability and validity analysis. The Experiences During Meditation scale had five subscales: Cognitive effects, Emotional effects, Mystical experiences, Relaxation and Physical discomfort. The Effects of

xxiii Meditation in Everyday Life scale had a single factor structure, with the final scale consisting of 30 items.

Construct validity was explored by assessing correlations with the measures: Perceived Control of Internal States, Mindful Attention Awareness Scale, FACIT Spiritual wellbeing subscale, POMS-Short Form and Physical Symptoms Checklist. It is anticipated that the scale may be useful for clinicians and researchers and may contribute to improved understanding of the effects of meditation practices.

xxiv Chapter One: Literature Review

1 CHAPTER ONE

Introduction and Literature Review

1.1 Overview of the thesis

The increasing popularity of non-mainstream cancer treatments raises complex ethical and practical issues for both patients and the medical profession. In view of the prevailing commitment to evidence-based medicine, it is vital to scientifically research complementary treatments and acquaint patients and practitioners with the results, thus helping to put them in the position to get the best possible treatment. There is also a need to better understand the characteristics of those who are drawn to complementary treatments and the mechanisms by which such interventions might exert their effects.

The aim of the programs run by The Gawler Foundation is to help cancer patients and their families to learn how to cope with cancer. The program incorporates meditation, social support, positive thinking and a low-fat vegetarian diet, and is intended to work with and reinforce effective medical treatments as well as complementary therapies. While there are numerous anecdotal reports of the value of the programs the Foundation provides, there has been no independent research which has attempted to assess effectiveness. The objective of this thesis is to address several research questions:

• Who attends The Gawler Foundation 10-day residential program?

• How does the program impact on mood, coping, quality of life and stress hormone (salivary cortisol) levels and what factors predict change on these measures?

• To what extent are people complying with The Gawler Foundation program recommendations at three, six and 12-month follow-up?

• Are the improvements seen after program completion maintained?

• Does compliance with the recommendations of program affect mood, coping and quality of life?

The thesis also describes the development of a scale designed to assess the meditation experience and its’ effects in everyday life 1 Chapter One: Literature Review

The thesis consists of nine chapters. The remainder of this first chapter presents a literature review describing the literature on psychological adjustment to cancer and the factors which influence this, with a particular emphasis on coping, social support. This is followed by a discussion of psychosocial interventions for cancer patients and a description of the programs run by The Gawler Foundation. A key part of this program is meditation and this chapter contains a discussion of the literature describing the effects of meditation interventions.

Chapter Two outlines the methods used to collect the data from participants in The Gawler Foundation program and Chapter Three describes participants in program in terms of demographic characteristics, disease and treatment characteristics, lifestyle factors and baseline measures of mood, coping, quality of life and stress hormone (salivary cortisol) levels. Chapter Four presents the data on the impact of the program on mood, coping, quality of life and salivary cortisol levels and the factors predicting change on these measures. Chapter Five provides details of the analysis of The Gawler Foundation questionnaire designed to assess the meditation experience. As one of the aims of the thesis is to describe the development of a scale designed to assess the meditation experience and its’ effects in everyday life, a review of the procedures and principles of the scale development process is also presented.

Chapters Six and Seven present the data from the three, six and 12-month follow-up assessments and explore the links between compliance with program recommendations and adjustment. Chapter Eight describes the process used to further develop and refine the scale designed to assess the meditation experience and its’ effects in everyday life. Chapter Nine includes a summary, a discussion of the limitations of the study and suggestions for future research directions.

1.2 Introduction to the literature review

Although cancer is the leading cause of death in Australia, modern medical advances mean that around 50% of those who develop the disease will survive beyond five years after their initial diagnosis and some will be completely cured. Thus, the medical system plays an important role in teaching patients to live with cancer and the threat of recurrence and progression. In the light of these developments, the last 25 years have seen the active exploration of the psychological domain of cancer. A diagnosis of cancer is likely to create great emotional distress and it is widely acknowledged that 2 Chapter One: Literature Review

cancer patients may experience various psychosocial problems at different stages of their illness. Research in both the medical and behavioral sciences has focused on the psychological effects of the disease, which in this context, are defined in terms of emotional distress and subjective quality of life.

Evidence suggests that psychological adaptation to cancer is influenced by various disease, demographic and psychosocial factors, including personality factors, coping abilities and social support. Because interpretations of life events vary so widely between people, much research on adjustment to cancer has centred around an individual's coping response to the cancer experience. Coping patterns, including attitudes towards illness predict long-term adjustment and the ability to live with illness. There is also some evidence that coping or adjustment style is associated with the degree of disease progression and mortality. Social support may also have an important role to play in helping cancer patients to adjust to the disease and considerable research effort has also centred around this topic.

Concern about the well-documented negative psychosocial consequences of cancer has led to the development of psychological treatment programs for patients. They include cognitive and behavioural interventions, supportive psychotherapy, informational and educational treatments, social support by non-professionals, and other therapies such as art and music therapies. In addition, as part of a general growing trend of interest in alternative medicine many cancer patients explore complementary and alternative treatments. Lifestyle oriented approaches are among the most popular and interventions that address the mind in order to affect the body are also of great interest. This category often includes interventions which incorporate a meditation component.

The programs run by The Gawler Foundation fall into this category. The aim of the programs is to help cancer patients and their families to learn how to cope with the cancer. It is a self-help approach intended to work with and reinforce effective medical treatments as well as complementary therapies.

1.3 Cancer

Cancer describes a range of over 200 diseases which are characterized by the uncontrollable growth and accumulation of abnormal cells. Cancer cell reproduction, survival and maturation are different from those of normal cells in that they are not

3 Chapter One: Literature Review

subject to the ordinary complex regulation processes that govern normal tissues. This malignancy leads to the accumulation of a mass or tumour, which if growth is not halted, can invade and damage local tissues and spread to other parts of the body (metastasize). Eventually, organs and body systems affected by cancer are unable to function effectively and death occurs. Cancer can develop from most types of cells in different parts of the body, and each cancer has its own pattern of growth and spread. Some cancers remain in the body for years without showing any symptoms while others can grow, invade and spread rapidly and are fatal less than a year after detection.

1.3.1 Epidemiology of cancer in Australia

According to the Australian Institute of Health and Welfare (2004), approximately 350 000 new cancer cases are diagnosed each year in Australia. Approximately 270 000 of these cancers are non-melanocytic skin cancers. Incidence data for this type of cancer are not collected on a routine basis by cancer registries.

In Australia in 2001, there were 88 398 new registrable cancer cases and 36 319 deaths due to cancer. At these incidence rates, it would be expected that one in three men and one in four women would be directly affected by cancer in the first 75 years of life. Cancer currently accounts for 31% of male deaths and 26% of female deaths. Cancer incidence is generally similar among States and Territories. Among all persons, the combination of cancers of the colon and rectum (12 844 new cases), often referred to as bowel or colorectal cancer, was the most common registrable cancer in 2001. Colorectal, breast cancer (11 886), prostate (11 191), melanoma (8885), and lung cancer (8275) together accounted for 59% of all registrable cancers in 2001.

In males, after prostate cancer the most common registrable cancer was colorectal cancer (6961 cases diagnosed in 2001), followed by lung cancer (5384 cases) and melanoma (5024 cases). These four cancers accounted for 60% of all registrable cancers in males. In females, breast cancer (11 791) was the most common registrable cancer, followed by colorectal cancer (5883), melanoma (3861) and lung cancer (2891). These four cancers accounted for 60% of all registrable cancers in females. The most common cancers causing death were lung (4657), colorectal (2601) and prostate (2718) cancers in males, and breast (2594), colorectal (2153) and lung (2382) cancers in females. The risk of cancer increases with age, with twice as many cancers diagnosed in those over the age of 60 as in those under 60. The most common cancers vary depending on age. In 4 Chapter One: Literature Review

those aged 15 to 44, melanoma and breast cancer are the most common cancers, while breast, colorectal, melanoma, prostate and lung cancers are predominant in people aged over 45 years.

A comparison with some countries with similar economic development to Australia shows that Australia’s male and female incidence rates are fairly average but that our mortality rates often compare favourably with these countries. Australia’s melanoma rates are amongst the highest in the world while the colorectal and prostate rates are also relatively high. According to a report published in 2003 by the World Health Organization, worldwide cancer rates are set to double by 2020, with current levels of smoking and unhealthy lifestyles listed as the main causes (Eaton, 2003). Improvements in screening, detection and treatment mean that over 50% of Australians diagnosed with cancer are likely to survive and the five-year survival rate for many common cancers has increased by more than 30% in the past two decades (AIHW, 2001). In the US recent figures put the five-year survival rate for adults diagnosed with cancer at 64% (CDCP, 2004). As a result of this, many cancer patients must learn to live with cancer as a chronic illness, something which has led to an increased focus on the emotional, social and functional issues faced by cancer patients and an examination of how these issues impact on quality of life and health outcome.

1.3.2 Risk factors for cancer

The development of cancer may be viewed as a multifactorial phenomenon arising from the interaction of genetic, immunological, psychosocial and environmental factors. Cancer is not one disease but several and although a number of cancers share risk factors, most have a unique set that are responsible for their onset. Some cancers occur as a direct result of smoking, dietary influences, infectious agents or exposure to radiation, while others may be a result of inherited genetic faults. Patients with immunologic disorders are predisposed to certain cancers. However, for some cancers the causes are unknown.

While some of the causes are modifiable through lifestyle changes, others are inherited and cannot be avoided, although it is likely that inherited tendencies exert only a modest effect on the risk of cancer development in most people (Lichtenstein et al., 2000). The risk of death due to particular cancers may be reduced through intensive monitoring of

5 Chapter One: Literature Review

high-risk individuals, reducing external risk factors, detecting and treating cancers early in their development, and treating them in accordance with the best available evidence.

1.3.3 Psychosocial factors and cancer incidence

There is widespread community belief in the links between certain psychosocial factors and the development of cancer (Linn, Linn, & Stein, 1982; Roud, 1986-87). Roberts, Newcomb, Trentham-Dietz and Storer (1996) found that women breast cancer patients reported that ‘stress’ and ‘depression’ were factors in the development of their cancers. In the past few decades, many investigators have studied the links between various psychosocial factors and the incidence of cancer. Of these, there are several that have received more attention. They include:

• personality factors including emotional repression

• stressful life events

• social relationships

• negative emotional states, including depression

• socio-economic factors

It has been hypothesised that the links between psychosocial factors and cancer are due to the interaction between provoking agents such as life events and chronic difficulties with vulnerability factors such as personality style which lower coping resources and thus affect the probability of disease onset and progression. This is likely to be mediated through neuroendocrine and immunologic disturbances. (Kiecolt-Glaser & Glaser, 1999; Sephton & Spiegel, 2003) However, studies of the links between psychosocial factors and cancer incidence provide conflicting evidence and the issue remains controversial (Dalton, Boesen, Ross, Schapiro, & Johansen, 2002; McKenna, Zevon, Corn, & Rounds, 1999).

1.3.4 Diagnosis and management of cancer

The second half of the twentieth century saw considerable technical advances in orthodox cancer medicine, in the areas of tumour biology, genetics, immunology and therapy. Along with improved treatment, screening programs have led to earlier detection and these factors have contributed to an increase in the numbers of those surviving cancer. Along with the technical advances in cancer medicine, there have 6 Chapter One: Literature Review

been changes in public perceptions of the causes, preventability and treatability of cancer. These include a shift away from fatalism about cancer, a trend towards revealing diagnoses and increased doctor patient dialogue.

Recent studies (Otto & deKoning, 2004; Tabar et al., 2003) suggest that screening has contributed significantly to reduced mortality from cancer. The diagnosis of cancer relies on invasive tissue biopsy, the removal of adequate tissue to allow careful evaluation of the histology of the tumour, its grade, invasiveness and other molecular diagnostic information.

Once a histologic diagnosis is made, staging (determination of the extent of disease) helps determine prognosis and treatment decisions. Clinical staging uses data from the patient's history, physical examination, and non-invasive studies. Pathologic staging requires tissue specimens and procedures vary according to type of cancer, for example, bone marrow biopsy is especially useful in determining metastases from malignant lymphoma and small cell lung cancer. Information obtained from staging is used to define the extent of disease. The most widely used staging system is the TNM (tumour, node, metastasis) system. This categorises the tumour on the basis of the size of the primary lesion, the presence of nodal involvement and the presence of metastatic disease. The individual T, N and M scores are broken into stages, usually indicated by the Roman numerals I, II, III and IV. For some cancers other staging systems are used.

Other factors affecting prognosis include the physiologic reserve of the patient, that is, how a patient is likely to cope with the stresses imposed by the cancer and its treatment. Thus, someone who is fully active before developing cancer is likely to fare better than someone who is not. Biological factors, including the presence of particular genes are also being found to influence prognosis and the response to particular therapies. These factors may be useful in influencing treatment decisions.

1.3.4.1 Conventional medical treatment

Treatment of cancer is complicated by the fact that cancer is not one disease but several separate ones with multiple causes and disparate outcomes. There is not therefore, a prototypic cancer patient. Information on the extent of disease and the prognosis can be used in conjunction with the patient’s wishes to determine the treatment approach.

7 Chapter One: Literature Review

Many cancers can be serious and even fatal. However, medical treatment is often successful if the cancer is detected early. The aim is eliminate all cancer cells and stop them from returning, whether at the primary site, extended to local-regional areas, or metastatic to other regions of the body. The major modalities of therapy are surgery and radiotherapy (for local and local-regional disease) and chemotherapy (for systemic sites). Other important methods include endocrine therapy, immunotherapy and thermotherapy.

Curative surgery requires the tumour to be localised or have limited spread, allowing it to be entirely removed. Where this is not possible, radiotherapy, chemotherapy, or chemo-radiation may be used to reduce the tumour size, making curative surgery possible. Radiotherapy can be delivered by various methods including neutron beam radiotherapy, electron beam radiotherapy and brachytherapy. Curative radiotherapy generally requires local or local-regional disease that can be encompassed within the radiation field. Radiation injury to cells is random and non-specific. In general, repair of normal tissue is more effective than that of cancer, allowing differential cell kill. Radiotherapy can also provide important palliative control of cancer, even when cure is not possible.

Chemotherapeutic drugs kill both normal and cancer cells and there is a narrow therapeutic index between cell kill of cancer cells and that of normal cells. Multidrug chemotherapy regimens with differing mechanisms, intracellular sites of action, and toxicities (to reduce the potential compounding of toxicity) provide significant cure rates in certain cancers.

Multimodality and adjuvant therapy refers to the combination of treatments such as surgery, radiation and/or chemotherapy. This has improved cure rates in certain cancers. Other modalities include endocrine therapy, the use of biologic response modifiers such as interferons, interleukins, and tumour necrosis factor (TNF), hyperthermia and cryotherapy. Treatment approaches often combines a number of these methods and use them in stages. The first line of treatment aims to remove as many cancer cells as possible; the second line, which may go on for a long time, aims to ensure the cancer does not recur.

Assessing the response to treatment is a critical part of management of the disease. This usually involves repeating the tests that were abnormal at the time of staging. A

8 Chapter One: Literature Review

complete response is defined by disappearance of all evidence of disease, a partial response by the 50% reduction in measurable lesions and progressive disease by the appearance of new lesions or an increase of greater than 25% of measurable lesions. Stable disease is defined by growth or shrinkage that does not meet the above criteria.

1.3.4.1.1 Supportive care

Supportive care is an important factor in the success of cancer therapy. Effective control of the symptoms of the disease and its treatment assist with compliance with treatment regimens and is an important determinant of quality of life. Psychosocial interventions and complementary and alternative medical treatments may be of use in the treatment of symptoms. These may include group therapy and other behavioural approaches. Psychosocial interventions may also play an important role in helping to relieve suffering in dying patients and their families (See Section 1.6 for further discussion of psychosocial interventions in cancer).

1.3.4.1.1.1 Pain and other symptoms

Pain is a common symptom of cancer and treating it is an important part of supportive care. Around 25% to 50% of patients present with pain at diagnosis, 33% have pain associated with treatment and 75% experience pain as disease progresses. Patients perceive pain differently, depending on such factors as fatigue, insomnia, anxiety, depression, and nausea. Addressing these factors together with a supportive environment can help control pain. Other symptoms that may occur include dyspnoea, anorexia, nausea and vomiting, constipation, pressure sores and confusion.

Pain may be treated with drugs, focal radiotherapy, or surgery. Pain can be exacerbated and reinforced by depression, anxiety and fear of worsening disease and group therapy and hypnosis may be helpful in reducing pain (Gaston-Johansson et al., 2000; Spiegel & Bloom, 1983). Relaxation and imagery has also been shown to be of benefit (Syrjala, Donaldson, Davis, Kippes, & Carr, 1995). Depression and anxiety may be also treated by counselling, psychotherapy or drugs.

1.3.4.1.1.2 Management of adverse effects of treatment

As cancer therapies are toxic an important part of the management of the disease involves dealing with the complications of the various treatments (Andrykowski, Redd, & Hatfield, 1985; Burish & Carey, 1986; Greenberg, Skornick, & Kaplan, 1998). 9 Chapter One: Literature Review

Antiemetics prevent or relieve nausea and vomiting, which commonly occurs with radiotherapy to the abdomen and with many chemotherapeutic drugs, especially when given in combination.

Bone marrow suppression manifesting as anaemia, leukopaenia, and thrombocytopaenia may develop during radiotherapy or chemotherapy. This may be treated with transfusions, recombinant erythropoietin and recombinant thrombopoietin. Antibiotics are used to combat the increased risk of infections. Enteritis from abdominal radiotherapy can be alleviated with antidiarrheal drugs. Mucositis from radiotherapy can preclude substantial oral intake and lead to malnutrition and weight loss. Simple measures such as use of analgesics and topical lidocaine before meals, a bland diet without citrus food or juices, avoidance of temperature extremes, allow the patient to eat and maintain weight.

Behavioural training may also be helpful in reducing the emotional and physical toll on patients undergoing chemotherapy (Burish & Lyles, 1981; Morrow & Morrell, 1982). In a meta-analytical review, (Luebbert, Dahme, & Hasenbring, 2001) concluded that relaxation training has beneficial effects on treatment related symptoms and emotional adjustment. Psychotherapy has been shown to be beneficial in those undergoing radiotherapy (Forester, Kornfeld, & Fleiss, 1985).

1.3.4.2 Care of the dying patient

Appropriate therapy for patients with incurable cancer may not include surgery, radiotherapy or chemotherapy but should include nutritional support, effective pain management, relevant palliative care, and psychiatric and social support. Hospice or other related end-of-life care programs are important parts of cancer treatment. The main tasks include helping a patient and family find comfort in the experience of dying and the prevention of distress due to factors such as pain; physical impairment; psychological disturbances; and social, family, financial, and spiritual concerns that undermine quality of life.

According to a report from the Cancer Education Research Program (CERP) NSW, a needs assessment study in advanced cancer patients revealed that half of the twenty most prevalent need items related to the psychological or emotional domain. For many patients with advanced incurable cancer the current health care system does not provided them with the psychological support they need (Rainbird, Perkins, & Sanson- 10 Chapter One: Literature Review

Fisher, 2005). Anecdotal reports suggest that these unmet needs play a role in motivating patients to participate in interventions such as that described in the current study.

1.4 Adjustment to cancer

A diagnosis of cancer is undoubtedly a stressful life event and researchers in both the medical and behavioral sciences have explored adjustment to cancer, which is an ongoing process in which a person learns to cope with the psychological effects of the disease, solve cancer-related problems and gain control over life-events affected by cancer (Brennan, 2001). In the context of the current study, the psychological effects of the disease are defined in terms of emotional distress and subjective quality of life.

In psychological terms, adjustment refers to a person’s adaptation to a particular environment or set of circumstances. It involves many levels of functioning, including the physical, the cognitive and the social. Adaptation is also considered in terms of the coping processes that support psychological wellbeing.

Cancer brings many challenges and these change with the course of the disease and its treatment. Each stage, whether it be diagnosis, treatment, remission, recurrence or survivorship involves emotional problems, coping tasks and questions of meaning. Epidemiological studies suggest that half of those diagnosed with cancer adapt successfully with patients recording similar scores to the general population on measures of adjustment and quality of life by one or two years after diagnosis if treatment is complete and cancer controlled (Spiegel, 1996; Stanton et al., 2005). However, while most patients do well, some are at risk for poor adaptation. Markers of successful adaptation include maintaining active involvement in daily life; minimizing the disruptions of the illness to one's life roles (such as, spouse, parent, employee); regulating the normal emotional reactions to the illness; and managing feelings of hopelessness, helplessness, worthlessness, and/or guilt (S. M. Spencer, Carver, & Price, 1998).

The experience of cancer often forces people to confront their own mortality. Weisman and Worden (1976) refer to this situation as an ‘existential plight,’ a situation in which a person's very existence may be endangered. A diagnosis of cancer challenges basic assumptions about the self and the world and lead to reflections on the meaning of life

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and what is important in life (Janoff-Bulman & Frieze, 1983). It seems likely that the degree of adjustment depends on the combined effect of coping responses, social support, and cognitive appraisal of the cancer experience.

1.4.1 Cancer and emotional distress

A diagnosis of cancer is likely to create great emotional distress (White & Macleod, 2002). The disease disrupts all aspects of daily life including family, work, finances, and friendships and it is now acknowledged that cancer patients are likely to experience various psychosocial problems at different stages of their illness.

Documented psychological consequences for patients include depression (Newport & Nemeroff, 1998) and anxiety (Derogatis et al., 1983; Parle, Jones, & Maguire, 1996), which may manifest in symptoms such as insomnia, loss of appetite, excessive alcohol consumption, suicidal thoughts, anger, hostility, frustration, panic, fear of cancer recurrence, a sense of uncertainty about the future, fear of death and feelings of isolation, stigma and guilt (Dunkel-Schetter, Feinstein, Taylor, & Falke, 1992; Kissane et al., 1998; Maguire et al., 1978). Distress may persist long after initial diagnosis and treatment.

Emotional distress may include anxiety, depression, and adjustment disorders related to the cancer experience. The National Comprehensive Cancer Network (NCCN) Distress Management Panel has defined distress as

…a multifactorial unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social, and/or spiritual in nature that may interfere with the ability to cope effectively with cancer, its’ physical symptoms and its’ treatment. Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, and existential and spiritual crisis (National Comprehensive Cancer Network, 2002, p. 5).

Psychosocial distress may be viewed as a continuum ranging from normal adjustment issues to adjustment disorders to sub-threshold mental disorders through to diagnosable mental disorders. While most cancer patients do not meet the criteria for diagnosable mental disorders, many patients do experience a variety of emotional difficulties.

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1.4.1.1 Adjustment disorders and cancer

Adjustment disorders, which are a diagnostic category of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) are defined as reactions to an identifiable psychosocial stressor, such as a cancer diagnosis, with a degree of psychopathology that is less severe than diagnosable mental disorders such as major depressive disorder or generalized anxiety disorder and yet are in excess of what would be expected or result in significant impairment in social or occupational functioning.

An adjustment disorder occurs within three months of the onset of the stressor and is classified as acute it lasts for less than six months and chronic if it lasts for six months or longer. Research suggests that the adjustment disorders are the most commonly diagnosed mental disorders in the oncology setting. Derogatis et al. (1983) evaluated 215 cancer patients and found that 47% had a diagnosable mental disorder, with 68% of this group meeting the diagnostic criteria for an adjustment disorder. Of the entire 215 patients evaluated, approximately 32% met the diagnostic criteria for an adjustment disorder. In a study of women with breast cancer undergoing chemotherapy, a 36.1% prevalence rate for adjustment disorders was found (Morasso et al., 1997).

1.4.1.2 Depression and cancer

There has been considerable research into the relationship between stress and psychopathology, particularly depression (G. W. Brown & Harris, 1989; Paykel et al., 1969) and anxiety disorders (Finlay-Jones, 1989; Tennant, Hurry, & Bebbington, 1982). The experience of cancer is a significant psychosocial stressor, which in and of itself increases the risk of developing mood disorders (Reiche, Nunes, & Morimoto, 2004). In addition, physiological changes resulting from the disease of its treatment may also contribute to the development of depression and related symptoms (Dantzer, 2001). However, while cancer may increase the risk of mood disorders, serious depression is not experienced by everyone who has cancer.

In the general population rates of major depression for men are 2 to 3% and for women, 5 to 9% (Newport & Nemeroff, 1998). In Australia, a 1997 survey found that about 6% of the population, had experienced depression during the 12 months prior to the survey. Depression was found to be more prevalent among females with a rate of 8.7%, compared to 5.2% among males (Australian Bureau of Statistics 1998). Estimates of 13 Chapter One: Literature Review

the rates of prevalence of depression in cancer patients vary and range from 1.5% to 50% with median prevalence rates around 22 to 29% (Honda & Goodwin, 2004; Hotopf, Chidgey, Addington-Hall, & Ly, 2002; Newell, Sanson-Fisher, Girgis, & Ackland, 1999). Assessment of prevalence depends on several factors including the definition of depression and the methods and timing of assessment. Common symptoms associated with depression include decreased energy, sexual dysfunction, reduced employment and social isolation.

Disease factors affecting prevalence include type of cancer, type and phase of treatment (Helgeson, Snyder, & Seltman, 2004) and severity of disease, with greater levels of distress positively associated with greater severity of disease (Maunsell, Brisson, & Deschenes, 1992; Schag et al., 1993). Sociodemographic factors affecting prevalence include gender and age (Carr et al., 2002; McDaniel, Musselman, Porter, Reed, & Nemeroff, 1995; Sellick & Crooks, 1999). Psychosocial risk factors for depression include a history of psychiatric illness, a history of alcohol or other substance abuse and family history of cancer and depression (Bloom, 1987; Penman, 1982). Poor pre- diagnosis coping skills, external locus of control, conforming personality style and social isolation also increase the risk (Newport & Nemeroff, 1998).

Some research suggests that depression leads to a poorer clinical outcome (Faller & Schmidt, 2004; Spiegel & Giese-Davis, 2003; Stommel, Given, & Given, 2002). Depression may also decrease compliance with therapy, increase length of hospital stay and diminish quality of life (G. Pelletier, Verhoef, Khatri, & Hagen, 2002). Treatment of depressive symptoms, even when not classified as major depression has been shown to benefit cancer patients (D. L. Evans et al., 1988). Thus, the treatment of depression offers the possibility of better adjustment, reduced symptoms, reduced costs of care and may even influence disease course.

For a variety of reasons, depression in cancer patients may be under-reported (Fallowfield, Ratcliffe, Jenkins, & Saul, 2001). It may be difficult to distinguish between a mood disorder such as depression or anxiety and a natural reaction to the diagnosis of cancer, such as unhappiness, worry and fear. A person’s reaction may be assumed to be appropriate even when it worsens over time. Lack of symptom awareness, fear of mental illness, lack of family support and reactions of stoicism or hopelessness may mask depression. Some patients may fear of appearing weak or losing a doctor’s support. Thus, patients may fail to report depressive symptoms and doctors 14 Chapter One: Literature Review

may fail to ask, or may under-recognize depression or normalize it when it is reported. Time constraints, cost concerns and access to services also contribute to under- treatment (Croyle & Rowland, 2003).

1.4.1.3 Anxiety disorders and cancer

As with depression, anxiety is likely to be part of normal adaptation to cancer and in most cases, passes with time and when appropriate steps are taken to reduce it. However, in many people, anxiety may worsen with disease progression or more aggressive treatment (Breitbart, 1995). In some cases anxiety may arise directly as a result of the biology of the disease or its treatment. Cancer patients with anxiety may experience greater pain, nausea, vomiting, other symptoms of distress and sleep disturbances (Glover, Dibble, Dodd, & Miaskowski, 1995; Velikova, Selby, Snaith, & Kirby, 1995).

In a study of 178 patients Stark et al. (2002) found that 48% of subjects reported sufficient anxiety for anxiety disorder to be considered. Schag and Heinrich (1989) found that 44% of patients with cancer reported some anxiety, with 23% reporting significant anxiety. Kissane et al. (1998) found 8.6% of Australian early breast cancer patients to have an anxiety disorder while Parle et al. (1996) found that 33% of cancer patients developed anxiety as a result of diagnosis and treatment.

Factors that can increase the likelihood of developing anxiety disorders during cancer treatment include a history of anxiety disorders, severe pain, anxiety at time of diagnosis (Nordin, Berglund, Terje, & Glimelius, 1999) functional limitations, lack of social support (Stark et al., 2002) advancing disease, and history of trauma (Breitbart, 1995; B. L. Green et al., 2000). Other factors, including female gender and younger age, are also associated with increased anxiety (Friedman, Lehane, Webb, Weinberg, & Cooper, 1994; Stark et al., 2002). Patients who have problems communicating with their families, friends, and physicians are also at greater risk of developing anxiety (Friedman et al., 1994).

1.4.2 Pattern of distress over time

The pattern of distress associated with cancer varies over time. Even before the diagnosis is confirmed the first suspicion of cancer can cause significant distress. The diagnostic period before treatment or screening may be the most stressful part of the

15 Chapter One: Literature Review

treatment period as after this prognosis is known with greater certainty (Dale, Bilir, Han, & Meltzer, 2005; Northouse, 1989; Nosarti, Roberts, Crayford, McKenzie, & David, 2002; Stanton & Snider, 1993). However, the adaptation process continues after this and may remain a long term problem for both patients and their families (Bloom, 2002; Cassileth, Lusk, Strouse et al., 1985; Ell, Nishimoto, Mantell, & Hamovitch, 1988).

It seems likely that the course of adjustment varies according to the individual. Duration of time since diagnosis has been shown to be positively related to adjustment and quality of life (Dow, Ferrell, Leigh, Ly, & Gulasekaram, 1996; Gotay & Muraoka, 1998). Helgeson et al. (2004) identified different trajectories of change in women with breast cancer. Some women steadily improved over time whereas others showed marked deteriorations or improvements. Most of the change occurred in the first 13 months after diagnosis.

The pattern of distress over time is considered in some detail here as participants in the current study vary widely in the time since diagnosis. Mullan (1985) divided the cancer experience into three main stages: acute survival, extended survival and permanent survival, also referred to as long-term survival or cure.

1.4.2.1 Diagnosis

Most people experience the diagnosis of cancer as a traumatic event which brings a change in self-image and social role. A diagnosis of cancer may lead to a sense of personal inadequacy, diminished feelings of control, increased feelings of vulnerability, and a sense of confusion (Lesko, Ostroff, & Smith, 1991). A cancer patient may feel that he or she is being attacked and invaded and may feel betrayed by his or her body.

Patients are likely to be given a considerable amount of information about their diagnoses and may be encouraged to seek second opinions. The increase in information and the behavioural options confronting patients may create additional stresses. Some research has shown that patients have more adjustment difficulties around the time of diagnosis than later in the course of their illness (Fallowfield, Hall, Maguire, & Baum, 1990; Irvine, Brown, Crooks, Roberts, & Browne, 1991).

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1.4.2.2 Acute survival

The first life stage is the period from the diagnosis until the end of the first year. This may be referred to as acute survival. During this period key concerns relate to cancer directly as a health and life threat and include the possibility of recurrence (S.M. Spencer et al., 1999). Other concerns include sickness and potential damage from disease treatment, pain, and premature death.

Concerns about personal relationships, including psychosexual concerns, and the effects on family members such as partners and children also rate highly (S.M. Spencer et al., 1999). The experience of cancer can be challenging for a marriage or significant relationship. Difficulties include communication problems, coping difficulties, sexual dysfunction and body image concerns (Andersen, Anderson, & deProsse, 1989; Fobair et al., 2005). Juggling the demands of work and family life with the demands of treatment and physical/sexual dysfunction is also likely to be stressful. Certain cancers also bring specific concerns, for example, prostate and breast cancers may particularly affect fertility, and libido (Oktay, 1998). Side effects of treatment are likely to be unpleasant and deforming surgery and loss of hair often affect self-image.

Typically, psychological distress, negative attitudes, somatic distress, and anxiety about separation and death decrease gradually over the first year following diagnosis (Bloom, 1987; Burgess et al., 2005; Morris, Greer, & White, 1977). The end of the treatment period may lead to distress as the patient faces the termination of a treatment which he or she associates with beneficial effects (Deshields et al., 2005; Stanton et al., 2005). There is growing recognition of the need for support even when treatment is finished (Hipkins, Whitworth, Tarrier, & Jayson, 2004; Stanton et al., 2005).

In recent years it has also been recognised that receiving a diagnosis of cancer or cancer recurrence can lead to a traumatic stress response. Several investigators have found that while a full post-traumatic stress syndrome may affect only a small percentage of patients, clinically significant symptoms are relatively common (Alter et al., 1996; Cordova et al., 1995; B. L. Green et al., 1998) and may last for some time (Andrykowski, Cordova, McGrath, Sloan, & Kenady, 2000).

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1.4.2.3 Extended survival

Extended survival refers to the period from the end of the first year following diagnosis until approximately three years later. During this time period, concerns about treatment effects are important and the threat of recurrence, and fear of this is, greatest for most cancers (Lee-Jones, Humphris, Dixon, & Hatcher, 1997).

For many people, the emotions associated with cancer continue to be powerful for years after the completion of treatment (Halstead & Fernsler, 1994). As many as one third of breast cancer patients may suffer from psychological morbidity over one year after the initial operation (Fallowfield et al., 1990; Ganz et al., 2004). In addition, the adverse side effects of treatments may contribute to adjustment problems for long periods after treatment (Dorval, Maunsell, Deschenes, & Brisson, 1998). However, Burgess et al. (2005) found that after the first year following a diagnosis of breast cancer women in remission have levels of depression and anxiety comparable to the general population.

Bloom et al. (1993) described problems in testicular cancer and Hodgkin’s disease survivors such as energy reduction, loss in physical functioning and body image changes. Problems in returning to work, re-establishing parenting roles and with sexual function were also reported. In a study of breast cancer survivors, Ganz et al. (1996) reported problems associated with physical and recreational activities, body image, sexual interest, sexual function, and problems with dating for those who were single. Similar problems have been seen in other studies of different cancer populations (Eton & Lepore, 2002; Molassiotis, Chan, Yam, Chan, & Lam, 2002).

1.4.2.4 Permanent survival

Permanent survival refers to the period from three years after diagnosis when the probability of recurrence lessens for most cancers. However, definitions of the term differ in the literature. Lower energy levels, relationship problems, resuming prior activities including jobs and recreational activity and the late effects of therapy are issues for many patients. Some may suffer problems such as discrimination at work or difficulties obtaining life insurance (Stewart et al., 2001).

Cancer survivors may be at greater than average risk of depression and psychological distress related to the continuing effects of cancer and its treatment (Deimling, Kahana, Bowman, & Schaefer, 2002). Some cancer patients may feel guilty about their survival

18 Chapter One: Literature Review

and the threat of recurrence, the so-called Damocles syndrome, is an issue for many (Muzzin, Anderson, Figueredo, & Gudelis, 1994).

Ganz et al. (2002) examined 763 long-term, disease-free breast cancer survivors, who had been diagnosed an average of 6.3 years earlier. The women reported high levels of functioning and quality of life many years after primary treatment. However, past systemic adjuvant treatment was associated with poorer functioning on several dimensions of quality of life. Some other studies report that survivors have levels of quality of life and emotional functioning comparable or better than the general population (Bardwell et al., 2004; Burgess et al., 2005; Gotay, Isaacs, & Pagano, 2004; Helgeson & Tomich, 2005).

1.4.2.4.1 Survival and positive psychological consequences

While the experience of cancer is a major stressor and research in the area of psychosocial oncology has mostly focused on the pathological outcomes in response to cancer, some recent studies have explored the possibility that in some people, cancer offers the possibility of personal growth and transformation. Aspinwall and MacNamara (2005) concluded that positive emotions and beliefs were associated with good outcomes in those facing a challenge such as cancer but also played a role in realizing such outcomes.

Cella and Tross (1986) reported stronger interpersonal relationships and a renewed vigor in approaching life in survivors of Hodgkin’s disease. Andrykowski, Brady and Hunt (1993) found that potential bone marrow transplant recipients reported an improved outlook on life, enhanced relationships, and greater satisfaction with religious concerns. They propose that cancer may be viewed as a “psychosocial transition, that is, an event with significant negative implications that can nevertheless cause individuals to restructure their attitudes, values, and behaviors, and thus can serve to trigger positive psychosocial change” (p. 273). In a study comparing breast cancer survivors with age- matched healthy controls, Tomich and Helgeson (2002) found that survivors indicated that they derived some benefits from their experience with cancer, but these benefits had only a modest impact on quality of life. However, the belief that the experience had lasting harmful effects was associated with poor quality of life for survivors.

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1.4.3 Recurrence

Those who experience a recurrence of their cancer may be even more distressed than at the initial diagnosis due to the implications for longer-term survival (Mahon, Cella, & Donovan, 1990). Northouse et al. (2002) studied women with recurrent breast cancer and found significant impairments in physical, functional, and emotional well-being within 1 month after recurrence. However, a patient’s self-efficacy (confidence in his or her ability to manage the demands of illness), social support, and family hardiness had positive effects on quality of life. Burgess et al. (2005) found that 45% of women with breast cancer experienced depression, anxiety or both within three months of diagnosis of recurrence. Andersen et al. (2005) carried out a controlled, prospective, psychological analysis of patients' responses to cancer recurrence and found that patients' stress did not in the early weeks, result in diffuse emotional distress and quality of life disruption.

1.4.4 Transition to palliative care

As might be expected, the transition from a curative treatment plan to palliative care is very difficult for cancer patients. Patients typically face renewed psychological distress, worsening physical symptoms, and the existential crisis of death (Cherny, Coyle, & Foley, 1994). However, as with the initial diagnosis, this distress is often followed by a gradual adjustment over a period of weeks. In this phase, many people seek comfort in prayer and in their religious practices/rituals or spiritual beliefs (McClain, Rosenfeld, & Breitbart, 2003).

1.4.5 Quality of life

In the last 20 years, there has been increasing acknowledgement that the impact of disease or the benefits of treatment cannot be described solely by more physiological measures of disease status and endpoints such as disease-free survival. Indeed, physiological measures may correlate poorly with wellbeing and two patients with the same clinical criteria may have different functional and emotional wellbeing. Thus, adjustment to cancer is also considered in terms of health-related quality of life (QOL).

It is now commonly acknowledged that the value of health care interventions should be judged by the impact upon both quantity of life and quality of life. While measuring quantity of life is easy, assessing quality of life is less straightforward. Thus, the

20 Chapter One: Literature Review

medical profession has tended to focus on quantity of life, that is, survival time as the most frequent indicator of treatment effectiveness. However, it is important to recognise that time without quality is of questionable value.

For some treatments, adverse effects on quality of life might outweigh medical benefits, and there is a need to find a balance between efficacy and side effects of treatment. In addition, an intervention that has no effect on survival may have positive effects on quality of life and may therefore be judged beneficial. Thus, there has been increasing interest in the area of research known as health-related QOL and a corresponding use of this as an outcome variable in many clinical studies. In keeping with this trend here has been a considerable amount of into the development and psychometric validation of quality of life questionnaires in the field of oncology as well as increasing assessment of effects of treatments on quality of life. Sanders et al. (1998) reported that 10% of all randomised cancer trials used HRQOL as the main endpoint. In clinical oncology health-related QOL assessment may help to highlight patients unmet needs and to distinguish between treatments with similar biological outcomes (J. Dunn et al., 2003).

1.4.5.1 Definition of QOL

While it can be problematic to define the term QOL, there is general consensus that it is both multidimensional and subjective. Cella (1995) has offered the following definition: ”Health-related quality of life refers to the extent to which ones usual or expected physical, emotional and social well-being are affected by a medical condition or treatment”. Some other examples of definitions include:

• “the state of well being that is a composite of two components: the ability to perform everyday activities that reflect physical, psychological, and social wellbeing; and patients satisfaction with levels of functioning and control of the disease” (Gotay, Korn, McCabe, Moore, & Cheson, 1992, p. 575)

• “the subjective evaluation of the good and satisfactory character of life as a whole” (van Knippenberg & de Haes, 1988, p. 1043)

• “patient perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns” (WHOQOL1993, p. 153)

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Muldoon and King (1998) comment that the alternative or complementary perspective on QOL assigns central importance to an individual’s subjective appraisal of their state of health. This definition presumes that quality of life is at least partly independent of health status (Guyatt, Feeny, & Patrick, 1993) and is “a reflection of the way that patients perceive and react to their health status and to other non-medical aspects of their lives” (Gill & Feinstein, 1994, p. 619). This is supported by the findings of Parker et al. (2003) who reported that demographic variables such as age, gender, marital status, education were generally associated with measures of adjustment and QOL whereas medical variables such as time since diagnosis, recurrence status, treatment variables, stage of disease were not. Patients with more support reported less anxiety and depression and better QOL.

How patients evaluate their QOL may also change over time. Many cancer patients report benefits such as greater feelings of personal strength, self-assurance and compassion even to the extent that they are sometimes more satisfied with their global quality of life than healthy comparison groups (Aspinwall & MacNamara, 2005). This paradox reflects a psychological adaptation process referred to as response shift whereby the internal standard by which patients appraise their current state shifts and the same questionnaire items on wellbeing can elicit fundamentally different answers over time (Schwartz & Sprangers, 1999). Thus reported changes in QOL over time need not necessarily derive from actual changes in health or symptoms but rather from a change in values. In this sense, some interventions, including the one described in the current study, teach response shift.

1.4.5.2 QOL assessment

While the importance of QOL is generally acknowledged, there is still some confusion about its measurement and its usefulness in medical research. The subjective nature of QOL complicates its measurement as does the fact that in addition, many of the components, for example, social functioning and spirituality cannot be directly observed. Assessment of QOL essentially covers four core domains (Aaronson et al., 1991; Fallowfield, 2002):

• physical functioning (ability to perform self-care activities, mobility, physical activities and role activities such as work or housework),

• psychological functioning (emotional distress, anxiety and depression) 22 Chapter One: Literature Review

• occupational wellbeing

• social wellbeing (family interactions, time with friends, recreation activities)

Recent QOL definitions have been broadened to include spiritual or existential concerns, body image issues, and satisfaction with healthcare and with the doctor- patient relationship. The use of patient-reported questionnaires has become standard practice in the assessment of QOL in cancer patients. Current questionnaires typically embody one or both of the following operational definitions – QOL as an individual’s behaviour or level of functioning or quality of life as an individual’s perceived status or wellbeing. Commonly, QOL questionnaires are made up of a number of questions, the scores of which are summed in several domains, generating a total score for that dimension. The dimensions typically measured include the physical, the mental and the social, further divided into these categories:

• physical concerns (symptoms, pain)

• functional ability (activity)

• family well-being

• emotional well-being

• treatment satisfaction (including financial concerns)

• sexuality/intimacy (including body image)

• social functioning

Recent research also points to the importance of spirituality as an important contributor to QOL (M. J. Brady, Peterman, Fitchett, Mo, & Cella, 1999). Typically, scores from the various domains are added up to give a total score. Subscale scores give a more detailed and precise estimation of the different areas of patient function and wellbeing. Two of the better known questionnaires are the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC-QLQ C30) developed by Aaronson and colleagues in the Netherlands and the Functional Assessment of Chronic Illness Therapy questionnaires developed by Cella and colleagues in the US (Aaronson et al., 1993; Cella et al., 1993). The latter are used in the current study.

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1.4.5.3 QOL and prognosis

There is some evidence that patient-rated QOL is a good prognostic indicator (Blazeby, Brookes, & Alderson, 2001; Butow, Coates, & Dunn, 1999; Coates, Porzsolt, & Osoba, 1997). Some studies have shown that QOL scores are a better prognostic indicator than physiological measures of disease (Earlam, Glover, Fordy, Burke, & Allen-Mersh, 1996). In addition, patients with high QOL scores at the beginning of treatment fare better than those with low scores (Maisey et al., 2002). Fraser et al. (1993) showed that QOL starts to decline before more orthodox medical measures when treatment shows reduced effectiveness. However, Goodwin et al. (2004) examined prognostic effects of QOL in 397 women with breast cancer two months after diagnosis and one year later. They concluded that QOL and psychosocial status at diagnosis and one year later were not associated with medical outcome in women with early-stage breast cancer.

1.4.6 Factors influencing adjustment to cancer

Evidence suggests that various disease, demographic and psychosocial factors influence psychological adaptation to cancer. Disease factors include the medical facts of stage at diagnosis, site, prognosis and treatment (Northouse, Schafer, Tipton, & Metivier, 1999; Zabora, Brintzenhofeszoc, Curbow, Hooker, & Piantadosi, 2001). Demographic variables include age at diagnosis (Ganz, 1993; Wenzel et al., 1999) and marital status (Bloom, 1982; Broeckel, Jacobsen, Balducci, Horton, & Lyman, 2000; Kugaya et al., 2000). Psychosocial factors include personality factors and coping abilities (Classen, Koopman, Angell, & Spiegel, 1996; Dunkel-Schetter et al., 1992; Watson et al., 1991) and the emotional support given by family, friends and medical and nursing staff (Helgeson & Cohen, 1996; Koopman, Hermanson, Diamond, Angell, & Spiegel, 1998).

One of the best predictors of adjustment to breast cancer is psychological state before diagnosis (Dean, 1987). Maunsell, Brisson and Deschenes (1992) found that a prior history of stressful life events predicted poor adjustment. Eisemann and Lalos (1999) found that wellbeing before treatment was the greatest predictor of well-being after treatment in cervical and endometrial cancer patients.

1.4.6.1 Disease variables and adjustment

Disease and treatment variables have been shown to affect adjustment to cancer. Zabora et al. (2001) examined emotional distress in a variety of cancer populations. The overall

24 Chapter One: Literature Review

prevalence rate of distress was 35.1% and this varied from 43.4% for lung cancer to 29.6% for gynecological cancers. While some rates were significantly different, diagnoses with a poorer prognosis and greater patient burden produced similar rates of distress. Pancreatic cancer patients produced the highest mean scores for symptoms such as anxiety and depression, while Hodgkin’s patients exhibited the highest mean scores for hostility. Baker et al. (2005) found lung cancer survivors to show lower levels of adjustment than survivors of other types of cancers.

There is evidence that patients with more advanced disease have more difficulties adjusting and experience greater distress and poorer quality of life than patients with early-stage disease (Kugaya, Akechi, Okamura, Mikami, & Uchitomi, 1999; Northouse, Caffey et al., 1999; Rosenfeld, Roth, Gandhi, & Penson, 2004), although others have not found such an association (Compas et al., 1994; Epping-Jordan, Compas, & Howell, 1994; Williamson, 2000). Type of treatment may also affect adjustment, for example, mastectomy may lead to lower quality of life than breast conserving surgery (Moyer, 1997) and having adjuvant chemotherapy may contribute to poorer quality of life (Ganz et al., 2002) and greater sexual dysfunction in younger women (Avis, Crawford, & Manuel, 2004).

1.4.6.2 Demographic variables and adjustment

Demographic variables such as age, level of education, socioeconomic status and marital status have been linked to adjustment. A patient’s phase of life has a significant impact on adjustment with younger patients typically demonstrating greater levels of distress than older patients (Ganz, 1993; Stanton & Snider, 1993; Wong-Kim & Bloom, 2005). It may be that older people are more likely than younger people to expect a decline in health. Compas et al. (1999) found that younger women with breast cancer showed more distress near the time of diagnosis but this difference was no longer different at three and six months. However, not all studies support this conclusion with Maunsell, Brisson and Deschenes (1992) showing no effect of age on distress up to 18 months after breast cancer diagnosis.

Educational level and income have been found to be unrelated to distress levels in some studies (Alferi, Carver, Antoni, Weiss, & Duran, 2001; Maunsell et al., 1992). However, Chan et al. (2001) found that less educated women suffered more distress and Macleod,

25 Chapter One: Literature Review

Ross, Fallowfield and Watt (2004) found lower socioeconomic status predicted greater distress in breast cancer patients.

For a person with cancer, a spouse is likely to be an important source of support. The emotional support provided by a partner may help to buffer a cancer patient against the stresses of the cancer experience, including disease progression and married people have been found to have less distress and to show better adjustment than those who are unmarried (Broeckel et al., 2000; Ganz, 1991; J. S. Goodwin, Hunt, Key, & Samet, 1987; Kugaya et al., 1999). Taniguchi et al. (2003) found that being married was associated with reduced psychological distress in men with cancer.

However, the quality of marriage may play a role in the supportiveness (Manne et al., 2004). Some marriages may be a source of conflict and strain, which may decrease the availability of support and may aggravate a patient’s condition. Giese-Davis et al. (2000) found that being married in itself was not related to lower mood disturbance but relationships which rated higher in cohesion and expression were linked to lower mood disturbance. Other research suggests that in marriages that are strong before the development of cancer, the disease does not usually disrupt the relationship, and may result in an even closer relationship (Oktay & Walter, 1991). However, in a troubled relationship, the disease may prove too stressful (Oktay, 1998). It has also been shown that additional social support cannot overcome the negative impact of a distant husband on the female patient's emotional well-being (Pistrang & Barker, 1995).

1.4.6.3 Health behaviours and adjustment

Many cancer patients express interest in health education program, particularly those involving diet, exercise and smoking cessation (Demark-Wahnefried, Peterson, McBride, Lipkus, & Clipp, 2000). Anecdotal reports suggest that such interest may underlie the appeal of program described in the current study. Some researchers have attempted to assess the links between health behaviours and adjustment. Those that are correlated with poor adjustment include current smoking (McBride, Clipp, Peterson, Lipkus, & Demark-Wahnefried, 2000), poorer diet (Maunsell, Drolet, Brisson, Robert, & Deschenes, 2002; Rock & Demark-Wahnefried, 2002) and decreased physical activity (Kolden et al., 2002). Several studies have found better quality of life in those who exercise than in those who don’t. This applies to several domains of functioning including physical, functional, psychological and emotional wellbeing (Courneya, 26 Chapter One: Literature Review

Mackey, & Jones, 2000). Pinto, Trunzo, Rice and Shiu (2002) found associations between physical functioning and exercise participation in breast cancer patients. However, in this study, overall mood and cancer –related symptoms were not linked to exercise.

1.5 Psychosocial factors and adjustment to cancer

Evidence suggests that a patient’s initial adaptation to a cancer diagnosis is significantly influenced by a variety of psychosocial variables including personality factors, coping abilities and social support (S. L. Shapiro et al., 2001).

1.5.1 Coping with cancer

Adjusting to cancer includes coping with a wide range of situations, including painful symptoms and treatment, changing social relationships and ambiguity about prognosis. Cancer patients with the same diagnosis or treatment regimen may experience very different levels of distress. Because interpretations of life events vary so widely between people, much research on adjustment to cancer has centred around an individual's coping response to the cancer experience. A person’s coping style is often closely related to overall disposition and personality. Coping can be aimed at removing the stressor, minimising the impact of the stressful event or reducing the distress reactions. These responses serve the ultimate purpose of placing the person back into the activities of their life.

Coping patterns vary from one individual to another and from one situation to another. People differ in their repertoire of coping responses, in their beliefs about which responses are helpful and in their beliefs about their abilities to carry out certain responses. Thus, different people cope with the diagnosis of cancer in different ways and the range of responses is diverse, ranging across denial, self blame, acceptance of the reality of the situation, focusing on the positive, seeking information, seeking social support, tackling the problem head on and giving up.

Research into psychological wellbeing in the face of chronic disease has been carried out in the disciplines of clinical practice and behavioural science. The conceptualisation and measurement of coping varies widely from study to study, leading to difficulty making comparisons across studies. In the context of theory and field research within a behavioural science model, Lazarus and Folkman (1984) define coping in terms of the 27 Chapter One: Literature Review

cognitive and behavioural activities a person uses to manage a potentially stressful situation. In the context of research arising out of clinical practice in oncology, Greer, Moorey and Watson (1989) have defined coping as “the cognitive and behavioural responses of patients to cancer, comprising appraisal (that is, the personal meaning of cancer for the individual) and the ensuing reactions (that is, what the individual thinks and does to reduce the threat posed by cancer)” (p. 374).

1.5.1.1 Types of coping strategies

Lazarus and Folkman (1984) propose several components of the coping process. Appraisal of the threat or loss posed by the stressful situation and appraisal of the degree of controllability are identified as the determinants of the coping strategies selected. A person’s evaluation of the outcome of their coping efforts may lead to changes in coping strategies over time.

This model proposes two main dimensions of coping: problem-focused and emotion- focused coping:

• Problem-focused coping involves attempts to deal directly with the problem, that is, information seeking, formulating plans, decision making and resolving conflicts in order to manage problems that impede or block goals

• Emotion-focused coping involves facing and working through feelings aroused by the situation to regulate the degree of emotional distress.

Problem-focused coping is generally seen as effective coping as it may allow some sense of control and accomplishment, even in difficult situations (Folkman, 1997). An emotion-focused coping strategy may be positive, for example, turning to others for emotional support or negative, for example, denial, minimisation or self-blame. The model has recently been modified to include meaning-based coping which may help the person to make sense of what is happening and appraise benefit where possible (Folkman, 1997; Folkman & Greer, 2000). For many people religious and spiritual beliefs play an important role in meaning-based coping (see Section 1.5.6.1).

Other researchers divide coping strategies into two main types: active (or engagement) or avoidant (or disengagement) coping strategies (McCaul et al., 1999; Moos, 1988). Active-behavioural coping occurs when the patient tries to change some aspect of the illness by active means eg, exercise, relaxation techniques and frequent consultations 28 Chapter One: Literature Review

with a physician. Active-cognitive coping occurs when the patient tries to understand the illness and accepts its effect on life by focusing on positive changes that have occurred since the onset of illness. Avoidant coping includes denial, fantasising, wishful thinking or social withdrawal.

The development of coping theories within a behavioural science model is paralleled by those that have evolved through clinical practice within the medical model. As Folkman and Greer (2000) point out, both these lines of work point independently to the importance of focusing on psychological wellbeing in serious illness. In the context of cancer, coping strategies that have received most attention include those of ‘denial’ and ‘fighting spirit’, conceptualisations which are based on the work of Greer, Watson and colleagues in the UK, and which are explored in the current study. Greer, Moorey and Watson (1989) assessed the psychological responses of patients to cancer and grouped these into several categories:

• Denial –refuses to accept the diagnosis of cancer or avoids using the work ‘cancer’ or admits the diagnosis but denies or minimises the seriousness.

• Fighting spirit – fully accepts the diagnosis, uses the word cancer, is determined to fight the illness, tries to obtain as much information as possible about it and adopts an optimistic attitude, may see the illness as a challenge.

• Fatalism – accepts the diagnosis, does not seek further information, and adopts a fatalistic attitude.

• Helplessness/hopelessness – is engulfed by knowledge of the diagnosis, finds it difficult to think of anything else, daily life is considerably disrupted by fears concerning cancer and possibly death and adopts a wholly pessimistic attitude.

• Anxious preoccupation – reacts to the diagnosis with marked persistent anxiety and accompanying depression, actively seeks information about cancer but interprets this pessimistically, worries that aches of pain indicate spread or recurrence of cancer, may seek ‘cures’ from various sources including alternative treatments.

1.5.2 Coping and adjustment

Coping patterns, including attitudes towards illness predict long-term adjustment and the ability to live with illness. In general, it seems that active coping styles are more common in cancer patients (Nordin & Glimelius, 1999). Positive psychological 29 Chapter One: Literature Review

adjustment has been found to be associated with: confronting the disease (Burgess, Morris, & Pettingale, 1988; Weisman & Worden, 1976); problem-focused engagement coping (Epping-Jordan et al., 1999); hopefulness (Herth, 1989); dispositional optimism (Epping-Jordan et al., 1999; Schou, Ekeberg, Ruland, Sandvik, & Karesen, 2004); a fighting spirit (Classen et al., 1996; Schnoll, Harlow, Stolbach, & Brandt, 1998); emotional expression (Carver et al., 1993; Stanton et al., 2000); active acceptance at diagnosis (Carver et al., 1993; Stanton, Danoff-Burg, & Huggins, 2002), and humour (Carver et al., 1993) and spirituality (M. J. Brady et al., 1999; Cotton, Levine, Fitzpatrick, Dold, & Targ, 1999).

Poor adjustment has been associated with emotion-focused coping (Ben-Zur, Gilbar, & Lev, 2001; Epping-Jordan et al., 1999), emotional suppression (Classen et al., 1996; Weisman & Worden, 1976); social withdrawal (Weisman & Worden, 1976); fatalism (Schnoll et al., 1998); anxious preoccupation (Schnoll et al., 1998); helplessness (Burgess et al., 1988; Schnoll et al., 1998), avoidance-based coping responses (Hack & Degner, 2004; McCaul et al., 1999; Stanton et al., 2002).

Some studies suggest that adjustment is more strongly associated with appraisal and coping than with medical variables associated with disease (Akechi, Okuyama, Imoto, Yamawaki, & Uchitomi, 2001; H. J. Green, Pakenham, Headley, & Gardiner, 2002). However, drawing overall conclusions is complicated by difficulties in comparing results across studies as these vary in the ways used to measure coping strategies. It is also likely that use and effectiveness of coping strategies depends on various factors including time since diagnosis and disease severity.

1.5.2.1 Fighting spirit and helplessness

Much research in coping and adjustment to cancer has centred around the strategies of fighting spirit and helplessness/hopelessness. Watson et al. (1991) found that attitudes of helplessness, fatalism and anxious preoccupation were associated with more symptoms of depression and anxiety in breast cancer patients whereas the coping response of fighting spirit was linked to less depression and anxiety. Burgess et al. (1988) found that lower psychological morbidity was associated with a positive/confronting response to diagnosis while higher anxiety and depression scores were associated with a hopeless-helpless response to diagnosis. Nair (2000) found a positive association between fighting spirit and quality of life in cervical cancer patients 30 Chapter One: Literature Review

and Cordova et al. (2003) found fighting spirit to be associated with lower mood disturbance in a heterogeneous group of cancer patients.

Other studies report similar associations in a variety of populations including US breast cancer patients (Schnoll et al., 1998), Swedish gastrointestinal cancer patients (Nordin & Glimelius, 1999), Italian cancer patients with various tumour types (Grassi, Rosti, La Salvia, & Marangolo, 1993), Spanish breast cancer patients (Ferrero, Barreto, & Toledo, 1994), Japanese breast cancer patients (Akechi et al., 2001), and Austrian breast cancer patients (Andritsch et al., 2004).

As coping is defined in terms of the constantly changing efforts to manage stressful situations, a limitation of some of the studies described above is that they are cross- sectional and it is not possible to draw conclusions about causality. Information on wellbeing and coping are collected at the same time and it is not necessarily clear whether coping responses influence distress level or vice-versa.

Using a prospective design Carver et al. (1993) interviewed 59 breast cancer patients at the time of diagnosis and followed them for a one-year period. Women who reported using the coping strategies of acceptance and a sense of humor were less distressed than women who reported using denial and disengagement. In this case, acceptance refers to acceptance of the reality of the situation as opposed to fatalistic acceptance of the adverse implications. This study also showed that active coping, planning and use of social support were not tied to lower levels of distress. Levine (2005a) found fighting spirit at diagnosis predicted lower distress and quality of life one year later.

1.5.2.2 Avoidance/denial

Stanton and Snider (1993) found that cognitive avoidant coping in women undergoing a biopsy for breast cancer predicted higher levels of distress after the positive diagnosis and after surgery. McCaul et al. (1999) examined possible predictors of adjustment to breast cancer in 61 women recently diagnosed with Stage I or Stage II breast cancer. Measures were gathered at diagnosis and again four months later. The most consistent predictor of distress and, to a lesser extent, quality of life, was avoidant coping. Hack and Degner (2004) attempted to assess the long-term association between coping and adjustment in breast cancer patients. These were assessed within six months of diagnosis and then three years later, with the results suggesting that poor adjustment was significantly associated with cognitive avoidance and minimal use of approach- 31 Chapter One: Literature Review

based coping responses at diagnosis. Other studies report similar findings (Lutgendorf et al., 2000; Lutgendorf et al., 2002).

In older adult cancer survivors denial as a form of coping has been associated with higher anxiety, depression and cancer-related worries (Deimling et al., 2006). Roy et al. (2005) found that denial was significantly related to the presence of both depression and anxiety in a multiethnic sample of UK cancer patients. However, not all studies support the links between denial/avoidance and poor adjustment. Meyerowitz (1983) studied 113 women who had been treated for breast cancer up to three-and-a-half years earlier and found that cancer-specific denial was associated with lower distress. Similar results were reported by Watson, Blake, Greer and Shrapnell (1984) and Timko and Janoff- Bulman (1985). Glanz and Lerman (1992) concluded that avoidant coping and denial can be beneficial during active treatment, possibly because during this period, patients have less control over their care, and avoidance would therefore be a reasonable strategy to cope with treatment side effects. Avoidant thinking following active treatment may also facilitate coping (Greer, 1991).

However, some researchers believe that denial may purchase relief at a cost. Acceptance of one’s situation may be a necessary precedent to more active coping (Carver et al., 1993); and denial may prevent making thoughtful decisions and may demand effort in and of itself (Stanton & Snider, 1993).

1.5.2.3 Variation in coping over time

As cancer is not a single stressful event but rather a series of interconnected stressful events (Heim, Augustiny, Schaffner, & Valach, 1993) it is likely that success in coping with one event can to influence adjustment and subsequent coping with the next. This may help to explain why coping strategies also vary over time. Morris (1977) found that fighting spirit was less at two years after survival from breast cancer than at three months and one year. Stoic acceptance was reported more often at the two-year mark than earlier periods. Carver et al. (1993) found that the reported use of a wide range of coping strategies including acceptance, humour, denial, and behavioural disengagement decreased over the year following surgery but acceptance rose steadily, a finding similar to those of Heim et al. (1987) and Ferrero (1994). Deimling et al. (2006) found that the most prominent strategies used by long term survivors were planning and acceptance.

32 Chapter One: Literature Review

Nordin and Glimelius (1998) examined coping and quality of life after diagnosis and at three, six and 12 months and reported that, analysed overall, coping styles and emotional wellbeing were relatively stable. However, when they examined changes in coping style in individual patients they concluded that fighting spirit was the most prominent coping style and may be a more stable one than helplessness/hopelessness.

1.5.2.4 Disease severity and coping

Coping strategies are likely to depend to some extent on disease severity, with more advanced state of disease associated with greater use of disengagement coping strategies at diagnosis and three months later (Epping-Jordan et al., 1999). Lampic et al. (1994) reported that patients with a poorer prognosis were found to have higher levels of helplessness/hopelessness than patients with a more 'favourable' prognosis.

Some research suggests that avoidant strategies work best for coping with less serious, short-term stressful life events whereas more active strategies might work best for long- term events requiring readjustment such as the cancer experience (Suls & Fletcher, 1985). In a cross-sectional study, Classen, Koopman, Angell and Spiegel (1996) found fighting spirit to be associated with lower levels of emotional distress in women with advanced breast cancer. There was no association with denial or fatalism.

Schnoll, Harlow, Stolbach and Brandt (1998) found that Stage II breast cancer patients reported higher levels of fighting spirit and lower levels of hopelessness/helplessness, anxious preoccupation and fatalism when compared to those with more severe disease (Stage IV). They also found that disease stage moderated the relationship between coping style and distress, supporting the premise that it is important to consider disease stage when assessing the role of coping.

Treatment effects may also play a role in coping. Costanzo, Lutgendorf, Rothrock and Anderson (2006) compared coping strategies in advanced and early-stage patients. Results showed that extensively treated women more frequently utilized both engagement and avoidant strategies including active coping, seeking social support, and mental disengagement. Avoidant coping strategies, including disengagement and cognitive avoidance, were strongly associated with poorer wellbeing and more distressed mood. The researchers concluded that relationships between coping and quality of life differed between the extensively treated patients and patients. Both use of avoidance coping and seeking instrumental support were associated with poorer 33 Chapter One: Literature Review

outcomes among extensively treated patients but not among the limited treatment group. Their results suggest that the links between coping patterns and outcomes may be more pronounced among cancer patients with severe disease and extensive treatment and that avoidant coping strategies may be particularly detrimental to mood and quality of life.

Patients at higher risk for poor coping include those who are socially isolated, have a history of recent losses and/or multiple obligations or use inflexible or fewer coping strategies. People with more personal resources and social support may use more active coping techniques and fewer avoidance techniques (Holahan & Moos, 1987).

1.5.3 Coping style and disease progression

There is some evidence that coping or adjustment style is associated with the degree of disease progression and mortality. Greer (1979) studied 69 female patients with early breast cancer. Their psychological responses to the diagnosis of cancer were assessed three months post-operatively and these responses were related to outcome five years after the operation. Recurrence-free survival was found to be significantly common among patients who had initially reacted to cancer with denial or fighting spirit than among patients who had responded with stoic acceptance or feelings of helplessness and hopelessness. Similar results were found at 10-year (Pettingale, Morris, Greer, & Haybittle, 1985) and 15-year follow-up (Greer, 1991). However, the methodology of these studies has been criticised and not all studies report similar findings (Pettingale, Burgess, & Greer, 1988).

In a larger and more rigorous replication of Greer’s 1979 study involving 578 women with early stage breast cancer, Watson, Haviland, Greer, Davidson and Bliss (1999) showed that there was a significantly increased risk of death from all causes by five years in women with a high depression scores. There was a significantly increased risk of relapse or death at five years in women who responded to diagnosis with a helpless/hopeless response. There were no significant results found for the category of ‘fighting spirit’ leading the researchers to conclude that it is not what is added in fighting spirit but what is taken away by hopelessness that is important.

Thus, some studies support the links between coping styles and prognosis (J. E. Brown, Butow, Culjak, Coates, & Dunn, 2000; Butow et al., 1999; Goodkin, Antoni, & Blaney, 1986; Temoshok et al., 1985) while others do not (Buddeberg et al., 1996; Cassileth, Lusk, Miller, Brown, & Miller, 1985; Heim et al., 1993). Petticrew, Bell and Hunter 34 Chapter One: Literature Review

(2002) systematically reviewed the evidence on the effect of psychological coping styles on survival and recurrence in patients with cancer and concluded that there is little consistent evidence that psychological coping styles play an important part in survival from or recurrence of cancer.

1.5.4 Psychosocial stress and disease progression

Some evidence supports a link between psychosocial stress and disease progression (Butow et al., 1999). This may be mediated by endocrinologic or immunologic mechanisms (Spiegel & Sephton, 2001). Cancer patients experience physical and psychological events that would be expected to activate stress-response mechanisms. These include the hypothalamic-pituitary-adrenal (HPA) axis which, together with the sympathetic system, connects the brain with the periphery of the body. Cortisol, the end product of hypothalamic-pituitary-adrenal axis functioning is subject to a negative feedback system which keeps it within a relatively stable narrow range. The presence of such a tightly-regulated control mechanism suggests that harmful effects may result from excessive levels (Chrousos & Gold, 1998).

Effects of both acute and chronic stress on neuroendocrine function have been extensively researched (Kiecolt-Glaser et al., 1997; Kirschbaum, Pirke, & Hellhammer, 1995) and cortisol has been shown to be a reliable measure of physiological stress (Kirschbaum & Hellhammer, 1989, 1994). Cortisol has been shown to have suppressive effects on immune function, including the alteration of white blood cell function and decreases in production of cytokines and mediators of inflammation (Chrousos, 1995; Elenkov, Webster, Torpy, & Chrousos, 1999). Glucocorticoids have been shown to promote tumour growth and metastasis in animal and in vitro models (Lointier, Wildrick, & Boman, 1992; McEwen et al., 1997).

Alterations in hypothalamic-pituitary-adrenal axis functioning have been reported in cancer patients, including flattening of the circadian rhythm of cortisol secretion (Touitou, Bogdan, Levi, Benavides, & Auzeby, 1996) and elevated plasma cortisol levels (van der Pompe, Duivenvoorden, Antoni, Visser, & Heijnen, 1997). These differences may be due to disease- or treatment-related effects on endocrine regulation (Mormont et al., 2002) or perhaps due to the psychological challenges faced by cancer patients (Deuschle et al., 1997). Sephton, Sapolsky, Kraemer and Spiegel (2000)

35 Chapter One: Literature Review

reported that loss of the normal diurnal variation of cortisol levels predicts shorter survival time in metastatic breast cancer patients.

1.5.5 Spirituality/religion and adjustment to cancer

In recent years, there has been considerable research into the role of spirituality and adjustment to cancer, both in terms of spiritual wellbeing as a dimension of QOL and as a coping strategy. Research has suggested that the dimensions of QOL be broadened to include spiritual concerns as these are often cited by patients as being important (Mytko & Knight, 1999). Anecdotal reports suggest that such concerns play a role in motivating patients to participate in interventions such as that described in the current study.

Many studies have investigated the relationship between spiritual and religious factors and health status and most researchers conclude that they have beneficial effects (D. A. Matthews et al., 1998; McCullough, Hoyt, Larson, Koenig, & Thoresen, 2000). In a wide-ranging review Mueller et al. (2001) concluded that religious involvement and spirituality were associated with better health outcomes including greater longevity, coping skills and QOL (even during terminal illness) and less anxiety, depression and suicide. Religiosity/spirituality may also be linked to important physiological regulatory processes including cardiovascular, neuroendocrine and immune function (Seeman, Dubin, & Seeman, 2003; Sephton, Koopman, Schaal, Thoresen, & Spiegel, 2001).

However others have criticized the associations between spirituality and health status as inconsistent and weak (Sloan & Bagiella, 2002) and some research suggests that religious distress (for example, feeling abandoned or punished by God) negatively affects health status (Koenig, Pargament, & Nielsen, 1998; Pargament, Koenig, Tarakeshwar, & Hahn, 2001). In a rigorous review Powell, Shahabi and Thoresen (2003) concluded that while evidence fails to support a link between depth of religiousness and physical health, there is evidence for a protective effect against cardiovascular disease and a reduction in mortality with church/service attendance. There is general agreement on the need for further methodologically rigorous research (W. R. Miller & Thoresen, 2003; Thoresen, 1999).

1.5.5.1 Definition of terms

Research into spiritual and religious issues is complicated by the difficulty in defining and clarifying the terms ‘religion’ and ‘spirituality’ (Halstead & Mickley, 1997). While

36 Chapter One: Literature Review

not everyone agrees on the definitions there is general agreement among researchers that the distinction is important (P. C. Hill & Pargament, 2003; W. R. Miller & Thoresen, 2003).

Spirituality refers to the universal human capacity to search for the sacred in life and beyond, a seeking of answers to life’s most meaningful and vital questions (W. R. Miller & Thoresen, 2003; Thoresen, 1999). It is generally recognized as a subjective experience and may be related to engaging in religious practices, or to a general sense of peace, harmony and connectedness (Hungelmann, Kendel-Rossi, Klassen, & Stollenwerk, 1985). Religions are culturally determined specific systems of beliefs and practices that reflect spirituality and respond to, and provides mechanisms for, attending to spiritual yearnings and answers to questions about ultimate meaning (M. Muldoon & King, 1995). In general, the term spirituality is preferred as it is considered to be more basic or more inclusive and universal (M. J. Brady et al., 1999). In a medical context, Ross (1995) defined spirituality in terms of three primary areas, meaning and purpose, the will to live, and belief in faith and self, others and God.

Despite attempts in the research literature to distinguish between religion and spirituality, the terms mean different things for different people. Many people consider themselves both spiritual and religious; some may consider themselves religious but not spiritual, while others, including some atheists or agnostics, may consider themselves spiritual but not religious (Shahabi et al., 2002). In fact, Hill and Pargament (2003) point to a polarization between the two terms, particularly in the US. Few research studies distinguish between the two constructs, although more recent studies may attempt to do so (Ashikaga, Bosompra, O'Brien, & Nelson, 2002; Laubmeier, Zakowski, & Bair, 2004).

1.5.6 Religion /spirituality and wellbeing in cancer patients

For many people, the cancer experience raises concerns about the meaning of life and death and for spiritually oriented people, these concerns evoke spiritual issues (M. Muldoon & King, 1995; Reed, 1987). Several studies have shown that religion and spirituality are significantly associated with subjective wellbeing (Reed, 1987), improved adjustment to cancer (Ben-Zur et al., 2001; Nairn & Merluzzi, 2003; Schnoll, Harlow, & Brower, 2000) and with the management of symptoms, for example, lower pain levels and a faster recovery time from illnesses other than cancer (Yates, Chalmer, 37 Chapter One: Literature Review

St James, Follansbee, & McKegney, 1981) reduced hostility, anxiety, and social isolation (Acklin, Brown, & Mauger, 1983; Kaczorowski, 1989), hope and positive mood states (Fehring, Miller, & Shaw, 1997; Mickley, Soeken, & Belcher, 1992) and overall wellbeing and quality of life in patients with several types of cancer including breast cancer (Cotton et al., 1999; Levine, 2005b; Romero et al., 2005), gynaecological cancer (Gioiella, Berkman, & Robinson, 1998) and prostate cancer (Krupski et al., 2006).

Low spiritual beliefs have been found to correlate with poorer adjustment (Riley et al., 1998) negative mood states, such as tension, anxious preoccupation, depression, anger, cognitive avoidance (Cotton et al., 1999; Fehring et al., 1997; Kaczorowski, 1989), hopelessness and suicidal thoughts (Chibnall, Videen, Duckro, & Miller, 2002; McClain et al., 2003) and the desire for a hastened death (Breitbart et al., 2000).

In reporting the QOL measure used in the current study, M. J. Brady, Peterman, Fitchett, Mo and Cella (1999) used a large (n=1610), ethnically diverse sample to examine spirituality in quality of life measurement. Spirituality, as measured by the Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being (FACIT-Sp), was found to be associated with quality of life to the same degree as physical wellbeing. The significant association between spirituality and quality of life was unique, remaining after controlling for core quality of life domains as well as other possible confounding variables. Furthermore, spiritual wellbeing was found to be related to the ability to enjoy life even when disease symptoms had an impact on other areas of functioning.

1.5.6.1 Coping

Research has demonstrated that spiritual and religious coping strategies are common responses to a major life stressor, such as cancer (Levine, 2005b; Meraviglia, 2004). Sherman et al. (2001) report that religious activities rank among the most frequent coping responses reported by cancer patients and that these may serve the purpose of maintaining self-esteem, giving emotional comfort and hope, providing a sense of meaning and purpose (Jenkins & Pargament, 1995; S. C. Johnson & Spilka, 1991). Religious coping may have emotion-focused, cognitive and behavioral components and may be adaptive, active and problem focused (Thune-Boyle, Stygall, Keshtgar, & Newman, 2006). 38 Chapter One: Literature Review

Other studies have linked religious and spiritual beliefs to improved coping in cancer patients. Having religious faith has been associated with a more active coping lifestyle in patients with malignant melanoma but not necessarily with levels of distress (Baider et al., 1999; Holland et al., 1999). Canada et al. (2005) found that religion and spirituality were positively associated with emotional and functional wellbeing and quality of life and that the association was mediated through the use of an active coping style.

Cotton, Levine, Fitzpatrick, Dold and Targ (1999) found that among 142 women diagnosed with breast cancer there was a positive correlation between spiritual wellbeing and quality of life, as well as significant correlations between spiritual wellbeing and specific adjustment styles (such as, fighting spirit). Results also showed a negative correlation between quality of life and use of a helpless/hopeless adjustment style, and a positive correlation between quality of life and fatalism. However, after controlling for demographic variables and adjustment styles, the results showed that spiritual wellbeing contributed very little additional variance in quality of life. The researchers concluded that while spiritual wellbeing is correlated with both quality of life and psychological adjustment, the relationships among these variables are more complex and perhaps indirect than previously considered.

In another study, Levine (2005b) concluded that spirituality was a very important part of coping with cancer among breast cancer patients and accounted for 40% of the variance in functional wellbeing. Spirituality was highly correlated with quality of life and coping style (as measured by the Mental Adjustment to Cancer scale). Thune- Boyle, Stygall, Kestgar and Newman (2006) reviewed 17 studies examining the potential beneficial or harmful effects of religious/spiritual coping with cancer. They concluded that many studies suffered from serious methodological problems and failed to control for possible confounding variables making it difficult to draw any firm conclusions about the possible beneficial or harmful effects of religious coping with cancer.

Some research has shown that spiritual and religious variables change following cancer diagnosis or cancer treatment (Andrykowski et al., 1996; Ferrell et al., 1992; Reed, 1992) and there are those for whom a reevaluation of spiritual beliefs in the face of cancer leads to positive changes and spiritual growth (Cordova, Cunningham, Carlson, & Andrykowski, 2001; Feher & Maly, 1999). Carpenter, Brockopp amd Andrykowski 39 Chapter One: Literature Review

(1999) found that cancer survivors who had drawn on spiritual resources reported substantial personal growth as a function of dealing with the trauma of cancer.

1.5.6.2 Negative and positive religious coping

In recent years there have been attempts to further elucidate the nature of religious or spiritual involvement and explain the conflicting results of the studies reported above. Tackling spiritual questions, however, may also raise troubling existential or religious issues and researchers have attempted to examine positive and negative dimensions of religious coping. Taylor, Outlaw, Bernardo and Roy (1999) found that for about one third of cancer patients interviewed, concerns about how to pray effectively or the questions raised about the effectiveness of prayer also caused inner conflict and mild distress.

Sherman, Simonton, Latif, Spohn and Tricot (2005) examined general religiousness and two modes of cancer-specific religious coping, drawing closer to faith (positive) and struggling with faith (negative), among 213 multiple myeloma patients. Results indicated that, negative religious coping was associated with significantly poorer functioning on depression, distress, mental health, pain, and fatigue measures. Boscaglia, Clarke, Jobling and Quinn (2005) found that negative spiritual coping was associated with greater depression and anxiety in women with gynecological cancer.However, neither general religiousness nor positive religious coping was significantly related to any of the adjustment outcomes measured. Alferi, Culver, Carver, Arena and Antoni (1999) found that religious coping was differently associated with adjustment depending on religious affiliation.

1.5.6.3 Spirituality/religiosity distinction

Some recent studies have attempted to differently assess the contributions to adjustment of spirituality and religiosity. A study of 95 cancer patients diagnosed within the past five years found that spirituality was associated with less distress and better quality of life regardless of perceived life threat with existential well-being but not religious wellbeing as the major contributor (Laubmeier et al., 2004). McCoubrie and Davies (2006) found a significant negative correlation between spirituality (in particular the existential aspect) and anxiety and depression in patients with advanced cancer but no association with religious wellbeing and strength of belief. Nelson, Rosenfeld, Breitbart et al.

40 Chapter One: Literature Review

(2000) found that higher levels of a sense of inner meaning and peace, rather than religious practices, were associated with lower levels of depression in terminally ill cancer patients.

1.5.7 Social support and cancer

Social support may also have an important role to play in helping cancer patients to adjust to the disease and considerable research effort has centred around this topic. Social support has been defined as “information leading the subject to believed that he/she is cared for and loved, esteemed and a member of a network of mutual obligation” (Cobb, 1976 p. 301) . The importance of social support and network size to physical health and mortality has been demonstrated by a number of large scale studies (Berkman & Syme, 1979; House, Landis, & Umberson, 1988). Other studies have reported benefits in adjustment during or following stressful life events (Cassel, 1976; Cobb, 1976; House, 1981).

According to the stress-buffering hypothesis, social support offers the potential to minimize the adverse effects of cancer diagnosis and treatment by reducing the threat that a stressful event is appraised to present; and by reducing the stress response to the threat. This may have the effect of warding off or lessening mood disturbances and helping people adapt to their cancer experience. Social support may also exert beneficial effects directly by increasing positive emotions, cognitions and behaviours (Helgeson & Cohen, 1996; Kornblith et al., 2001).

1.5.7.1 Types of social support

Social support may be provided by spouses/partners, family members, friends, co- workers, fellow patients or professionals. People appear to vary widely in the type of social support that meets their needs (Koopman et al., 2001). In an effort to better understand the relationship between social support and psychological and physical health, different types of social support have been defined. Structural measures of support describe the existence of and interconnections between network members. These include marital status, network size and social integration. Functional measures of support refer to either the perception that resources are available or the receipt of resources from network members through supportive interactions. Functional measures

41 Chapter One: Literature Review

may be further divided into emotional, informational and instrumental support (House, 1981; House & Kahn, 1985).

Emotional support involves the communication of caring and concern and may include empathizing, reassuring, and comforting. Informational support involves the giving of information aimed at guiding or advising the person. Instrumental support involves the provision of material goods, for example, transportation, money, or assistance with household chores.

1.5.7.2 Social support and adjustment to cancer

Many studies have shown high levels of social support to be associated with better emotional adjustment and quality of life in patients with various types of cancer (Bloom & Spiegel, 1984; Ell, Nishimoto, Mediansky, Mantell, & Hamovitch, 1992; Helgeson & Cohen, 1996; Koopman et al., 1998; Michael, Berkman, Colditz, Holmes, & Kawachi, 2002; Nosarti et al., 2002). The effects of marital status on adjustment to cancer are discussed in section 1.4.6.2.

Kornblith et al. (2001) found high levels of social support were associated with less psychological distress in patients with stage II breast cancer, although few patients reported high levels of distress. In a cross-sectional study, Simpson, Carlson, Beck and Patten (2002) found a strong relationship between poor social support and poor adjustment in patients with early-stage breast cancer. However, longitudinally the influence of psychiatric symptoms on social support was greater than vice-versa with initial psychiatric symptoms predicting poor social support later. Michael et al. (2002) found that women who were more socially isolated before diagnosis of breast cancer where more likely to report lower quality of life after diagnosis. However, not all studies have shown positive effects of social support on adjustment (S. S. Brady & Helgeson, 1991; Lalos & Eisemann, 1999; Ord-Lawson & Fitch, 1997).

It seems likely that the connection between social support and distress is not straightforward, as social support may not be universally positive or helpful. Cancer patients have described aversive or ‘unhelpful’ behaviour from support network members, with avoidance being particularly hurtful (Dakof & Taylor, 1990; Martin, Davis, Baron, Suls, & Blanchard, 1994). In such cases, the patient may perceive the quality of relationships with close friends and/or family as punishing, demanding, or distancing. Relationships may thus be a source of distress for people with cancer. It is 42 Chapter One: Literature Review

possible that the negative aspects of close relationships may be more closely linked to adjustment than the positive aspect of close relationships (Butler, Koopman, Classen, & Spiegel, 1999; Manne, Taylor, Dougherty, & Kemeny, 1997).

Some research suggests that emotional support is the most helpful kind of support, regardless of which network member is involved (Helgeson & Cohen, 1996; Wong-Kim & Bloom, 2005; Zemore & Shepel, 1989). Informational support from health care professionals is more likely to be helpful than that received from family and friends. The effects of instrumental support may be limited to certain health outcomes (such as, physical recovery) or to patients with a particular level of difficulties (Dakof & Taylor, 1990; Woods & Earp, 1978). Matching needed support with that received is likely to be important (Lichtenthal, Cruess, Schuchter, & Ming, 2003). Reynolds and Perrin (2004) found unwanted but received support to be associated with poor adjustment.

1.5.7.2.1 Instrumental support

Instrumental support involves the provision of material goods, for example, transportation, money, or assistance with household chores. This kind of support may offset the loss of control that patients feel during cancer treatment by providing tangible resources that they can use to exert control over their experience and is the type of social support assessed in the current study. It seems likely that patients whose functional wellbeing is low have a greater need for instrumental support. The number of people in the support system who can offer tangible assistance such as helping if a person is sick, giving lifts, watching over children has been shown to correlate with mortality (Blake & McKay, 1986). Provision of instrumental support, however, also may increase feelings of dependence and undermine self-efficacy in patients (Wortman & DunkeI-Schetter, 1987).

Koopman, Hermanson, Diamond, Angell and Spiegel (1998) examined the relationships between emotional adjustment to advanced breast cancer, pain, social support, and life stress in 102 women with metastatic and/or recurrent breast cancer. They assessed the number of persons in support system; positive support; and aversive support. Their results showed that having a greater number of people in a patient’s support system was associated with less mood disturbance, but only among patients who had undergone greater life stress. Having more aversive social contact was particularly associated with mood disturbance among patients who had undergone greater life stress. 43 Chapter One: Literature Review

Woods and Earp (1978) studied 49 women who had undergone mastectomy and found that instrumental support positively influenced mental health in patients with limited physical disability. Bloom, Stewart, Johnston, Banks and Fobair (2001) reported existence of instrumental support to be related to greater physical wellbeing in breast cancer patients and Sultan et al. (2004) found instrumental support to be associated with better mental health scores in colorectal cancer patients. Those with greater physical limitations or needs were more likely to rely on others for assistance and to use more instrumental resources. J. H. Rose (1990) found that patients' perceived prognosis but not the objective severity of their illness was associated with a heightened desire for support, especially for instrumental support functions. Maly, Umezawa, Leake and Silliman (2005) found greater levels of instrumental support to be associated with less depressive symptoms in older breast cancer patients.

1.6 Psychosocial interventions in cancer care

Concern about the well-documented negative psychosocial consequences of cancer, along with evidence the certain psychosocial factors may influence adjustment, has led to the development of psychological treatment programs for patients. A growing number of practitioners recognise the need for psychosocial support as part of an integrated approach to caring for the whole person at all stages of illness.

1.6.1 Need for psychosocial support

Liang et al. (1990) reported the top three priorities of psychosocial need among cancer patients as: family, dealing with emotional stress, and getting information, leading the researchers to conclude that any intervention should focus on these three areas in order to provide the greatest benefit. Matthews, Baker and Spillers (2004) asked oncology professionals about the cancer support services that patients most often request. Paramount among patient concerns were information and education about cancer (72%), support groups (65%), and hospice referral (52%). Other concerns included transportation, lodging during treatment, and alternative medicine.

In a study of 80 lung cancer patients Hill et al. (2003) found that overall, patients felt that less than half of their concerns (43%) had been discussed by the care team. In a study of gynaecological cancer patients Miller et al. (2003) found that 57% of respondents needed help dealing with emotional problems and 73% wanted the

44 Chapter One: Literature Review

physician to ask whether help is needed. Most patients surveyed want physicians to take an active role in dealing with psychosocial needs. However, physicians may not always recognize this need. Sollner et al. (2001) found that oncologists’ recommendations for supportive counselling did not correlate with patient distress or the amount of perceived support but rather with progressive disease and less denial behaviour. A number of Australian studies have shown that many cancer patients, both rural and urban have unmet needs and only a small proportion of Australian cancer patients who are clinically anxious or depressed are identified by their oncologists (Girgis, Boyes, Sanson-Fisher, & Burrows, 2000; Newell et al., 1999). In a study of 1492 cancer patients, Sanson-Fisher et al. (2000) reported high levels of unmet needs in the psychological, health system and information, and physical and daily living domains. The need to improve supportive care for cancer patients is generally acknowledged (Redman, Turner, & Davis, 2003) .

In an effort to explore which patients participate in psychosocial interventions, Plass and Koch (2001) found that participants in psychosocial support did not differ from non-participants in gender, but they were significantly younger. They showed considerably higher scores in emotional and physical distress than non-participants, their attitude towards psychosocial support was more positive, and they had more knowledge about institutions offering support than non-participants. The main reasons listed for their participation in psychosocial support were mental distress, a desire to obtain help, and the wish to cope with the illness. The main reason for not participating was sufficient support from family, friends or doctors.

1.6.2 Psychosocial interventions

Various different models of psychosocial interventions have been developed and studied and these typically have several major content themes. There is some overlap between them, for example, emotional support may be provided by a support group run by professionals, fellow patients or provided in a psychotherapy setting. Many interventions cover more than one area and interventions may be individual or in a group format. They include cognitive and behavioural interventions, supportive psychotherapy, informational and educational treatments, social support by non- professionals (peer support), and other therapies such as art and music therapies. They

45 Chapter One: Literature Review

may be offered formally or informally by health care professionals or by lay volunteers, including patients themselves.

Some psychosocial interventions, such as counselling by specialist nurses in breast cancer units have been incorporated into the routine care of patients with cancer. Other interventions may be provided outside hospitals by a wide variety of organisations or by national and local cancer support organisations. Private practitioners offer everything from psychotherapy to therapeutic massage on a fee-paying basis.

It is now generally agreed that psychosocial support is valuable for cancer patients. It is less clear what types of interventions, for which patients and by whom they should be provided in order to be maximally effective. Research suggests that a structured psychoeducational intervention consisting of health education, including information about the disease and treatment, cognitive coping strategies including problem-solving techniques, stress management and/or behavioural training and psychosocial group support offers the greatest potential benefit (Fawzy, Fawzy, Arndt, & Pasnau, 1995).

In addition to a recognition of the need for integrated care, a number of studies showing an increase in survival after participation in psychosocial interventions have generated considerable publicity and played an important part in the demand for psychosocial interventions., This is particularly true in the case of the studies conducted by David Spiegel and colleagues at Stanford University (Spiegel, Bloom, Kraemer, & Gottheil, 1989) and F.I. Fawzy and colleagues at UCLA (Fawzy et al., 1993) However, controversy still surrounds the research evidence that these interventions might affect survival (see section 1.6.4).

1.6.2.1 Group interventions

Group therapy for patients facing various psychosocial issues has been effectively used for decades and has become the most common psychosocial approach to cancer treatment. Groups help in a variety of ways: shared problem solving and instillation of hope, providing medical staff with improved insight into patient’s needs and ventilating painful feelings. Groups are also time and cost-efficient, particularly when they have an educational focus.

The goals of interventions are to decrease feelings of alienation by talking with others in a similar situation (McGrath, 1999), to reduce anxiety about treatments, to assist in

46 Chapter One: Literature Review

clarifying misperceptions and misinformation (Poole et al., 2001) and to lessen feelings of isolation, helplessness and being neglected by others (Blake-Mortimer, Gore-Felton, Kimerling, Turner-Cobb, & Spiegel, 1999; Payne, Lundberg, Brennan, & Holland, 1997). Interventions that help the person feel less helpless have the added benefit of encouraging more responsibility to get well and compliance with medical regimens (Fawzy & Fawzy, 1998). There are various reasons for this. In some cases cancer may lead to social isolation at a time when social support may be most needed. The diagnosis of cancer may lead to changes in the number of social contacts or the pattern of those contacts. The effects of the disease and its treatment (such as fatigue, pain, nausea) may lead to decreased opportunity for social contact. Bloom and Spiegel (1984) found that cancer patients must often curtail their social activities, resulting in fewer opportunities to maintain supportive interactions and receive support.

Cancer patients often report a particular need to discuss such illness-related concerns and negative-feelings (Wortman & Dunkel-Schetter, 1979). However, this kind of emotional support may be unavailable if friends and family members respond to such discussions with fear and discomfort and the belief that talking about the illness is upsetting and bad for patients. Patients are often concerned about how others will react to their expression of feelings. In a study of support group attenders, 55% said that they wished they could talk more openly with family members (S. E. Taylor, Falke, Shoptaw, & Lichtman, 1986).

However, there are limits on the extent to which family and friends can provide certain kinds of emotional support. Statements of reassurance and empathy from a family member may be viewed differently to such statements from those in a similar situation (Rose, 1990). Groups may help patients realign their existing social networks as they learn to teach friends to help them more effectively. Families may also participate and become able to explore their own anxieties and resentments and more clearly understand their own reactions to illness (Ussher, Kirsten, Butow, & Sandoval, 2005).

Group therapy offers the opportunity for patients to establish a new sense of community (Mok & Martinson, 2000). Such a network may offer support when needed and may also provide an opportunity to help others thus boosting self-worth and value and reducing feelings of powerlessness and uselessness. Participants can also utilise the experience of others in coping with and adjusting to issues common to most cancer patients. 47 Chapter One: Literature Review

Topics most commonly discussed are those of concern to the patients and those considered important by the therapists. Typically, these are: coping with pain and other physical symptoms; negative mood; intrusive thoughts; functional changes such as physical fatigue, and disability; improving appearance; and improving communication with doctors, family and friends. Coping with dying is also important as death anxiety is common among cancer patients who often find it helpful to discuss the process of dying and observe others coping with it (Kissane, Grabsch et al., 2004).

While many topics chosen by therapists are emotionally difficult for patients to pursue at the time they typically feel better afterwards. Discussion of negative emotions and death and dying in groups enables patients to live without as much distraction the rest of the time. Patients are also able to re-examine the way they live and spend more time in meaningful and valuable activities. The group may become a place where values are examined and new tasks carefully chosen.

Since the late 1970s, studies of group interventions for cancer patients have demonstrated the benefits of group therapy for improving cancer patients’ QOL (such as mood, coping psychophysical distress and physical functioning) and increasing patients’ familiarity with the disease and treatment.

1.6.3 Psychosocial interventions and adjustment

Psychosocial interventions vary widely with regard to training and ability of therapists, relationships with patients, the nature and content of the intervention, the primary goals and the predicted outcomes. However, several researchers have attempted to draw conclusions about the effectiveness of such interventions on adjustment to cancer.

Meyer and Mark (1995) conducted a meta-analysis of 45 randomised controlled outcome studies covering 62 treatment-control comparisons. Studies on cognitive- behavioural interventions, supportive psychotherapy, educational/informational approaches, peer support and unusual treatments were included. Outcomes of interest were classified as emotional adjustment, social functioning, treatment-or disease-related symptoms, medical measures, or some combination of these categories.

They concluded that psychosocial interventions had positive effects on emotional adjustment, functional adjustment, and treatment- and disease-related symptoms in adult cancer patients. However, the effects were modest and effect sizes did not significantly

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differ among different treatment categories. They also concluded that informational/educational approaches were most effective for improving medical knowledge and compliance as well as functional adjustment while behavioural approaches were most effective with managing specific symptoms and non-behavioural counselling therapy was superior for assisting with emotional adjustment as well as in more global measures.

Two other meta-analyses using broader selection criteria have also found beneficial effects on adjustment. Devine and Westlake (1995) analysed 116 studies and concluded that, while many different types of psychosocial care benefit patients, convincing evidence that certain treatments are more effective than others does not exist. However, they also commented that the number of studies examining some forms of care is low, limiting the validity of comparisons and highlighting the need for more comparative studies of specific therapies. Sheard and Maguire (1999) conducted meta-analyses of 25 studies. Anxiety was used as an outcome measure in 19 studies (1023 patients) and depression in 20 studies (1101 patients). Their findings suggested that preventive psychological interventions in cancer patients may have a moderate clinical effect upon anxiety but not depression. They also found indications that interventions targeted to those at risk of or suffering significant psychological distress have strong clinical effects. Group therapies were at least as effective as individual or relaxation therapies, if not more so. Greater effects were found for longer therapies and for group psychoeducational therapies.

Thus, these meta-analyses provide evidence for the benefits of psychosocial support during cancer treatment. It is less clear which type of therapy is most beneficial. Several authors have reviewed studies of psychosocial interventions. Such reviews paint a complex picture, with some studies showing benefits while others show no improvement or change and some show unexpected results (Fawzy, 1999). Ross, Boesen, Dalton and Johansen (2002) concluded that the results of a large number of studies fail to demonstrate a conclusive effect of psychosocial intervention on psychological well-being. They also commented that comparability of studies is reduced by differences in the time between diagnosis of cancer and inclusion in the study, in patient populations, in intervention strategies and in outcomes and that methodological flaws also complicated the picture. It may be that only some interventions affect wellbeing and then only in certain patient groups. The effects may be weak, accounting for 49 Chapter One: Literature Review

the inconsistent results found for the generally small study populations. They also recommend that studies be restricted to selected groups of patients in need of psychosocial support.

In an extensive and rigorous review Newell, Sanson-Fisher and Savolainen (2002) examined effectiveness for various psychosocial interventions at short, medium and long-term follow-up. They concluded that only tentative recommendations could be made and in general, these recommendations were obtained from one or two fair-quality trials. Group therapy, education, structured and unstructured counselling and CBT appeared to offer the most promise for medium and long-term benefits for adjustment. Relaxation training and guided imagery appeared most effective for dealing with the side effects of treatment. The program run by The Gawler Foundation described in the current study incorporates elements of the various types of interventions described below.

1.6.3.1 Educational interventions

In recent years, communication and information have increasingly been considered important in helping people to cope with cancer. Research has indicated that the vast majority of cancer patients desire information about their illness (Fallowfield, 1995). However, it is also recognised that information needs vary between patients and may change during the course of illness. Cancer patients' attitudes to cancer and their strategies for coping with their illness can affect their wish for information and their efforts to obtain it (Leydon et al., 2000).

Educational groups, which are typically brief and lecture-oriented are typically offered for those who have been recently diagnosed and who wish to learn more about their disease, available treatments, rehabilitative options following surgery, and what, if any, preventive measures they can take in the future. They may also offer information on coping, emotional issues and other areas, although there is unlikely to be active rehearsal of new behaviours. The goal of such interventions is to reduce the sense of helplessness and uncertainty that lack of knowledge may contribute to and replace it with a sense of mastery and control.

Several of these interventions have shown benefits including reductions in anxiety, and increases in knowledge about cancer and meaningfulness in life (J. Johnson, 1982); positive changes in physical training, physical strength, body avoidance, appraisal of 50 Chapter One: Literature Review

having received sufficient information, fighting spirit and frequency of sleeping problems (Berglund, Bolund, Gustafsson, & Sjoden, 1994); improvements in anxiety and treatment problems, knowledge about disease and a trend towards less depression and life disruption. (Cain, Kohorn, Quinlan, Latimer, & Schwartz, 1986; Jacobs, Ross, Walker, & Stockdale, 1983); and a decrease in the number and severity of difficulties experienced by women with average or good problem-solving skills (Allen et al., 2002).

1.6.3.2 Cognitive-behavioural methods

This category includes cognitive, cognitive-behavioural, and behavioural methods that focus on changing specific thoughts or behaviours and on teaching patients coping strategies for dealing with their diagnosis, treatment and life issues. The focus is on specific and immediate concerns, including identifiable stressors and stress reactions, communication issues, practicing health-related behaviours such as diet and exercise and specific self-help techniques for reducing pain and nausea. Techniques include problem solving, lifestyle management, stress-coping training, identifying concerns and dysfunctional attitudes, behaviour modification or reinforcement, progressive muscle relaxation training, meditation, hypnotherapy, biofeedback, systematic desensitisation, and guided imagery.

Most of the studies of group interventions in this area have been short term (fewer than 12 meetings) and typically follow a cognitive behavioural format combining educational information, coping skills and emotional and social support. Many of these have shown benefits in helping patients to adjust to cancer in terms of emotional functioning and coping (Antoni et al., 2001; Cain et al., 1986; Edelman, Bell, & Kidman, 1999; Heinrich & Schag, 1985; Telch & Telch, 1986; Vachon, Lyall, Rogers, Cochrane, & Freeman, 1981); mood disturbance and fighting spirit (Fukui et al., 2000) positive affect and optimism. (Cunningham & Tocco, 1989); depression, mood disturbance, quality of life and psychiatric symptoms (J. S. Simpson et al., 2002).

Cunningham et al. (1993) explored the influence of a number of variables on the improvements in quality of life of around 400 cancer patients who completed a brief, group program providing psychosocial support and training in coping skills. The factors tested were: patient gender, age, marital status, religion, education level, diagnostic site, recurrence status, expectations of the course, previous experience in self-help techniques, and different group leaders. Overall, the seven-week program increased 51 Chapter One: Literature Review

coping and enhanced mood in most subjects. There were no differences for gender, marital status, educational level, or previous experience with self-help techniques. However, there was a tendency for patients under fifty to improve more by the end of the program than older patients, although this difference disappeared at the three month follow up. In addition, patients with recurrent disease showed less improvement in quality of life than those with primary cancer.

As mentioned in section 1.6.4.2 results from the study carried out by F I Fawzy et al. (1990) have attracted considerable attention due to the effects on survival. The original study assessed the effects of a six-week structured group intervention covering health education, stress management, coping skills training and supportive group psychotherapy on 68 newly diagnosed malignant melanoma patients. All subjects reported moderate to high levels of psychological distress at baseline. At the end of the six-week intervention, the intervention subjects had significantly lower levels of distress and enhanced coping compared to the control subjects. Six months after the intervention the differences were even more pronounced. Immune system function was also enhanced, with significant changes in the natural killer lymphoid system seen six months after the intervention (Fawzy, Kemeny et al., 1990).

In an attempt to replicate this study in 262 Danish malignant melanoma patients Boesen et al. (2005), demonstrated that patients in the intervention group showed significantly less fatigue, greater vigor, and lower total mood disturbance when compared with the controls, and they used significantly more active-behavioral and active-cognitive coping than the patients in the control group. The improvements were significant six-month follow-up but not at 12 months.

In a recent study exploring a different type of cognitive therapy, Kissane et al. (2003) conducted a randomised, controlled trial of cognitive-existential group therapy (CEGT) for women with early stage breast cancer receiving chemotherapy. The aims were to improve mood and mental attitude to cancer. Results showed a trend for those receiving group therapy (n=154) to have reduced anxiety, improved family functioning and greater satisfaction with therapy, appreciating support and citing better coping, self- growth and increased knowledge about cancer and its treatment. However, the overall effect size was small and interaction effects between group members and therapists were found to be relevant to outcome. The training and experience of the therapist was found to be especially critical. 52 Chapter One: Literature Review

Helgeson (1999) noted that the content of peer group discussions varies widely and may have the potential for negative effects. Group members may vary widely in personalities, and often have different prognoses and kinds of cancer. Group members can bring up uncomfortable and frightening topics that increase anxiety if poorly handled. A group member, who finds that others in the group do not share his or her feelings may be left feeling more alone and isolated.

1.6.3.2.1 Behavioural interventions

Behavioural interventions may include progressive muscle relaxation training, meditation, hypnotherapy, biofeedback, systematic desensitisation, and guided imagery. Exercise and dietary interventions may also fall into this category and the intervention described in the current study incorporates a number of behavioural components including meditation, relaxation, visualisation and dietary recommendations. A number of studies have examined the effects of such interventions on adjustment to cancer. Effects of interventions on physical symptoms and treatment side effects are discussed in section 1.3.4.1.1.

Bindemann, Soukop and Kaye (1991) evaluated the effect of a 12-week relaxation training program on 80 cancer patients. The results of this randomised study showed that patients in the intervention group benefited by experiencing lower levels of anxiety, depression and psychiatric morbidity. In an effort to explore the persistence of beneficial effects, Baider, Peretz, Hadani and Koch (2001) carried out a randomised trial to examine the long-term effects of an intervention involving progressive muscle relaxation with guided imagery on psychological distress in recently diagnosed patients. The results showed that at six-months, psychological distress was significantly reduced. Cheung, Molassiotis and Chang (2003) also found beneficial effects of progressive muscle relaxation training on anxiety and quality of life in colorectal cancer patients and Walker et al. (1999) found that imagery improved quality of life inpatients undergoing chemotherapy. Relaxation training has also been shown to ameliorate fatigue and improve physical performance in cancer patients (Dimeo, Thomas, Raabe-Menssen, Propper, & Mathias, 2004). Hidderley and Holt (2004) reported beneficial effects of the relaxation/meditation technique known as autogenic training on stress-related behaviours and immune system responses in 31 early stage breast cancer patients. Results showed decreases in anxiety and depression.

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Guided imagery involves attention to internally generated mental images without the formal use of hypnosis. The most well-known of these techniques involves the use of ‘positive mental images’ such as an strong army of white blood cells killing cancer cells (Spiegel & Moore, 1997). However, in that study, adding cognitive-behavioural skills to the relaxation with imagery did not further improve pain relief. Roffe, Schmidt and Ernst (2005) reviewed evidence from six controlled clinical trials of the use of guided imagery as a sole adjuvant therapy for cancer patients and concluded that this technique may be psycho-supportive and increase comfort but that there is no evidence to suggest positive effects on physical symptoms such as nausea and vomiting.

M. A. Richardson et al. (1997) carried out a pilot study to differentiate the effects of imagery and support on coping, life attitudes, immune function, quality of life, and emotional wellbeing after breast cancer in 47 women. The results showed that compared with standard care, both interventions improved coping skills (seeking support) and perceived social support, and tended to enhance meaning in life. Support boosted overall coping and death acceptance. In a comparison of imagery with support, imagery participants tended to have less stress, increased vigour, and improved functional and social quality of life. A combination of tai chi and psychosocial support has also been shown to improve quality of life and self esteem in breast cancer patients (Mustian et al., 2004). Thus, the evidence suggests that behavioural interventions of various types may have beneficial effects on a number of measures of psychological adjustment but the evidence for effects on physical symptoms is lacking.

1.6.3.2.1.1 Psychospiritual approaches

An increasing number of interventions are incorporating mind/body approaches with a focus on body awareness, imagination and spirituality as well as diet and lifestyle issues (Harris & Thoresen, 1999; Targ & Levine, 2002; Wachholtz & Pargament, 2005). These tend to differ from community standard support groups in that their emphasis is on discovering innate meaning rather than creating meaning. Compassion, forgiveness and the dying experience may be explored through meditations and imagery rather than being given a problem solving focus, as is more common in cognitive-behavioural therapies. Such techniques play a role in the program described in the current study.

Targ and Levine (2002) compared the effects of a 12-week standard group support or a 12-week complementary and alternative medicine (CAM) support intervention.

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Participants in the CAM group were taught the use of meditation, affirmation, imagery and ritual. The standard group combined cognitive-behavioral approaches with group sharing and support. Both interventions were found to be associated with improved quality of life, decreased depression, decreased anxiety and increased 'spiritual wellbeing'. At baseline, very high correlations were noted between measures of quality of life, mood, and spiritual integration. At the end of the intervention, mood and quality of life outcomes were not significantly different between the two interventions although the CAM group showed higher satisfaction and fewer dropouts compared to the standard group. Better outcomes in quality of life in the CAM group were associated with lower initial fighting spirit. Other studies have reported beneficial effects on adjustment of incorporating spiritual themes into psychosocial intervention programs for cancer patients (Cunningham, 2005). Several studies have investigated the effects on adjustment to cancer of different types of meditation, particularly Mindfulness-Based Stress Reduction. These are considered in more detail in section 1.8.5.4.

1.6.3.2.1.2 Exercise and dietary interventions

Exercise may play an important role as a quality of life intervention for cancer patients (Courneya et al., 2000; Dimeo et al., 2004; Kolden et al., 2002). However, the benefits of exercise only come with regular participation, something that many healthy adults find difficult and which cancer patients may find even more challenging due to disease symptoms and treatment. There have also been a few small-scale studies of dietary interventions in cancer patients. These are considered in more detail in section 1.7.3.1.1.

1.6.3.3 Supportive psychotherapy

Emotional support involves giving patients the opportunity to express feelings and emotions about their disease, its treatment and its effects on their lives. This can help to provide with a sense of personal validation and may also facilitate a shift from emotion- focussed coping to problem-focussed coping, in which the intense and unpleasant emotions are acknowledged leading to ways of addressing and even resolving some of the causes of the negative emotion.

Psychotherapy has long been used to ease the distress and disruption that accompanies the diagnosis of cancer. It may be group or individual therapy. There are various forms of psychotherapy, including psychodynamic, existential, supportive counselling and

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crisis intervention. The type most commonly used is cognitive therapy, which aims to alleviate emotional disorders by identifying and correcting maladaptive thinking. Other types include a variety of professionally-based counselling that includes supportive psychotherapy, psychodynamic, existential, supportive-expressive and crisis models of intervening. These may be family, group or individual therapies.

Several studies of varying quality with differing outcome measures have shown benefits of supportive group interventions (Classen et al., 2001; Edmonds, Lockwood, & Cunningham, 1999; R. L. Evans & Connis, 1995; Forester et al., 1985; Moorey, Greer, Bliss, & Law, 1998) while others have not (Vos, Garssen, Visser, Duivenvoorden, & deHaes, 2004). However, the most influential of these is the study by Spiegel, Bloom and Yalom (1981) who carried out a prospective group therapy intervention study of women with metastatic breast cancer. Patients in the treatment group (50 women) took part in supportive/expressive group psychotherapy meeting weekly in outpatient settings for 90 minutes. The groups consisted of seven to ten members and the period of measurement was one year. Groups were led by two mental health professionals: a psychiatrist or social worker and a counsellor who had had breast cancer that was in remission. The structure of the group was informal, determined collaboratively by the leaders and the patients and designed primarily to be supportive and to encourage direct discussion about living with cancer. The goal was to provide an environment in which patients could talk about their fears and concerns and discuss death and dying, family problems, treatment issues, communication problems and living with a terminal illness. Members discussed their issues, concerns and fears with one another and taught each other what they had learned from their own personal experiences. Results showed that at 12-months follow-up, patients in the intervention group showed significantly less tension, less fatigue, less confusion and more vigour than those in the control group. There was also a significant reduction in levels of pain. A trend towards having less depression, fewer maladjusted coping responses and fewer phobias was also apparent. These differences were not statistically significant at four and eight months, leading the researchers to conclude that long interventions may be more clinically relevant for patients with metastatic cancer.

In a recent attempt to replicate the Spiegel study, Classen et al. (2001) studied the effects of supportive expressive group therapy in 125 women with metastatic breast cancer. The results showed that participants in the treatment group experienced a 56 Chapter One: Literature Review

significantly greater decline in traumatic stress symptoms but there was no change in overall mood disturbance. However, when a secondary analysis was carried out, with the omission of any assessment occurring within a year of death, the results showed significantly greater decline in total mood disturbance and traumatic stress symptoms.

Additional analysis showed that the overall reduction in symptoms in the intervention group was carried by a strong and significant decline in avoidance symptoms. Giese- Davis et al. (2002) found reductions in reports of suppression of negative affect decreased and increase in restraint of aggressive, inconsiderate, impulsive, and irresponsible behavior in the treatment group as compared with controls.

In another attempt to replicate Spiegel’s work Goodwin et al. (2001) carried out a randomised multi-centre trial involving 235 women with metastatic breast cancer who were expected to survive at least three months. The intervention group (158 women) participated in weekly supportive–expressive group therapy while the control group (77 women) received no such intervention. All the women received educational materials and any medical or psychosocial care that was deemed necessary. The primary outcome was survival and secondary outcomes were psychological functioning (mood, social support and adjustment to illness), experience of pain, and the quality of life. The results showed that women assigned to supportive–expressive therapy had greater improvement in psychological symptoms and reported less pain than women in the control group. Women who were more distressed or who had more pain experienced the greatest benefit.

1.6.3.4 Peer support groups

Many self-help groups have arisen due to locally perceived needs and are considered a beneficial means of knowledge acquisition and support. These are increasingly being recognised as educational, social and emotional benefits for cancer patients (Campbell, Phaneuf, & Deane, 2004; Davison, Pennebaker, & Dickerson, 2000). Helgeson, Cohen, Schulz and Yasko (1999) compared the effectiveness of education-based and peer discussion-based group interventions on adjustment to breast cancer and concluded that education-based group interventions were beneficial but there was no evidence of benefits from peer discussion group interventions. In a three-year follow-up study, Helgeson, Cohen Schulz and Yasko (2001) reported that the benefits of the education

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intervention were maintained over a three-year period although the effects dissipated with time. The peer discussion was not reported to be beneficial over this time.

1.6.3.5 Who benefits from which intervention

Several studies have attempted to compare the effects of different interventions (R. L. Evans & Connis, 1995; Moorey et al., 1998) and address the question of who benefits from which type of intervention. Helgeson, Cohen, Schulz and Yasko (2000) examined the extent to which individual difference variables moderated the effects of the information-based educational group and the emotion-focused peer discussion group on the mental and physical functioning of 230 of the women with breast cancer. The results showed that educational groups showed greater benefits on the physical functioning of women who started the study with more difficulties (for example, lacked support or fewer personal resources). Peer discussion groups were helpful for women who lacked support from their partners or physicians but harmful for women who had high levels of support. The results of a study by Vos, Garssen, Visser, Duivenvoorden, and de Haes (2004) showed that breast cancer patients who had not reported adjustment problems did not benefit from a short-term supportive intervention. Timing of the intervention may also be important with Vos, Garssen, Visser, Duivenvoorden, and de Haes (2006) finding greater benefits in breast cancer patients who participated in a group intervention program within four months after surgery than in those who waited at least three months later.

Comparisons are also complicated by the differing time periods of treatment types. Cognitive-behavioural interventions tend to be short-term whereas supportive- expressive type therapies tend to carry on for longer periods. Some researchers consider that the length of intervention may be the key factor determining its efficacy (Spiegel et al., 1981). It is also possible that cognitive-behavioural therapy may be of limited efficacy in patients with advanced cancer. A major area of concern for such patients is that of death and dying and this type of therapy may not have adequately addressed patients’ emotional needs. Individual or supportive-expressive therapies may be more suitable for patients with advanced disease.

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1.6.4 Psychosocial interventions and survival

A significant contributor to the popularity of psychosocial interventions for cancer patients has been the publicity surrounding the results of reports and research studies suggesting that interventions can prolong survival.

1.6.4.1 Early reports

Early work by a number of investigators (Meares, 1980; Simonton, Matthews- Simonton, & Sparks, 1980) found that patients who underwent psychological intervention lived longer than the national average. However, their conclusions are based on anecdotal evidence. Some researchers have analysed the psychological attributes associated with patients who survive what is thought to be terminal cancer. Roud (1986-87) noted that all long term survivors believed that there was a direct relationship between the outcomes experienced and their psychological states. They remained confident that they would not die, and felt that these positive expectations were critical to the healing process. They assumed responsibility for all aspects of their lives, including recovery and established relationships with physicians described as trusting, meaningful, and healing. However, such retrospective assessments do not take into account the characteristics of patients who died. Challis and Stam (1990) reviewed published reports of cases of spontaneous remission of cancer and found that most cases were considered in purely biological terms. There were very few cases in which psychological change was considered to be the trigger for remission.

1.6.4.2 Intervention studies

In 1989 Spiegel et al reported the results of a 10-year follow-up of their 1981 study (see section 1.6.3.3), collecting survival data on all participants in order to assess the effect of a psychosocial intervention on disease progression and mortality. Analysis of survival time showed that the mean survival time for those in the intervention group was 36.3 months, while for those in the control group it was 18.9 months. This difference was statistically and clinically significant. Lower mood disturbance and higher ratings of vigour on the Profile of Mood States measure were significantly associated with longer survival. The limitations of this study are that it involves a sample of moderate size and was not originally designed to assess survival. The analysis by Kogon, Biswas Pearl, Carlson and Spiegel (1997) showed that the difference in

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survival could not be ascribed to differences in medical treatment. However, Fox (1998) pointed out that the treatment group lived only as long as the national and local average whereas the control group died at a faster than expected rate. He suggests that the differences in survival are due to unusual characteristics of part of the control sample, which died sooner than would be expected on the basis of national and local norms.

In a follow-up of five to six years after the intervention study discussed in section 1.6.3.2, Fawzy and colleagues evaluated recurrence and survival in these patients (Fawzy et al., 1993). They found that the treatment group experienced significantly longer survival than the control group, with 10 of 34 patients in the control group dying compared to three in the treatment group. There was also a trend for longer time to recurrence, with 13 of 34 control patients experiencing recurrence compared to seven of the treatment group patients. At the 10-year follow-up, participation in the intervention remained predictive of survival when statistically controlling for the effects of other known prognostic indicators, although the effect was weakened (Fawzy, Canada, & Fawzy, 2003).

However, overall evidence of an effect of group interventions on survival is mixed. To date, five of 11 methodologically sound published studies report that psychotherapy prolongs survival. Five trials were associated with psychological benefit and longer survival time (Fawzy et al., 1993; Kuchler et al., 1999; Ratcliffe, Dawson, & Walker, 1994; J. L. Richardson, Shelton, Krailo, & Levine, 1990; Spiegel et al., 1989), whereas three trials showed no or only transient psychological benefit and no effect on survival (Cunningham et al., 1998; Edelman, Lemon, Bell, & Kidman, 1999; Ilnyckyj, Farber, Cheang, & Weinerman, 1994) and three trials showed psychological benefit and no effect on survival (P. J. Goodwin et al., 2001; Kissane, Love et al., 2004; Linn, Linn, & Harris, 1982). A meta-analysis of the effects of psychosocial interventions on survival time and mortality Smedslund and Ringdal (2004) did not lead to any definite conclusions.

Thus, not all psychosocial interventions work and it seems reasonable to expect that if an intervention is to impact on survival it needs to have beneficial psychological effects. With the exception of the Linn and Goodwin studies, the results of the studies mentioned above support a correlation between the effects of an intervention and survival, that is, psychological benefit is linked to prolonged survival and lack of benefit is linked to lack of effect on survival. Two main explanations may be offered for the 60 Chapter One: Literature Review

difference between the findings of the two studies. The medical treatment of breast cancer has improved substantially and there has been a reduction in breast-cancer mortality since the late 1990s. This is most likely due to the earlier detection of cancer, the use of selective estrogen-receptor modulators and the development and use of more effective chemotherapy. Secondly, psychosocial support for patients with cancer has also improved substantially. Patients with cancer are now aware of the positive effects of psychosocial intervention and emotional support is far more readily available than it was decades ago. Thus it may be that the effect of formal psychosocial intervention on survival time that was found in earlier studies is now difficult to replicate.

In addition, these randomized trials compared the mean or median survival of groups of patients. The lack of a mean difference still allows for the possibility that the degree of a patient's involvement with psychological self-help work may be linked to prolonged survival (Carver, 2005; Cunningham et al., 2000).

1.7 Complementary approaches to cancer treatment

In addition to the approaches discussed above, supportive interventions for patients and their families also include less orthodox approaches which may be offered formally or informally by health care professionals or by lay volunteers, including patients themselves. These interventions may be provided outside hospitals by a wide variety of organizations or by national and local cancer support organizations. Private practitioners offer everything from psychotherapy to therapeutic massage on a fee-paying basis. However, the distinction between ‘mainstream’ and ‘alternative’ treatments is not a clear-cut one.

The existence of so many and varied approaches suggests that the demand for this form of support is considerable. As part of a general growing trend of interest in alternative medicine many cancer patients explore such treatments. Lifestyle oriented approaches are among the most popular and interventions that address the mind in order to affect the body are also of great interest. The intervention described in the current study falls into the category.

Complementary and alternative medical (CAM) therapies are often seen by cancer patients as adding something which is missing from conventional treatment. They may look to such therapies not only to relieve symptoms but also to improve overall quality

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of life (Lerner & Kennedy, 1992; M. A. Richardson, Masse, Nanny, & Sanders, 2004) and in some cases to boost immunity, cure disease and extend survival (M. A. Richardson et al., 2004). Alternative healing practices often incorporate spiritual and moral themes of great importance to patients and these are less likely to be incorporated into mainstream medical treatment. Psychologically oriented approaches provide hope, control and mastery through self-help and a focus and sense of concern for the whole person. These features are often seen as deficient within the conventional health care system. The desire to explore all possible treatment options is a powerful motivator for cancer patients to use complementary and alternative treatments. Thus, CAM-based psychosocial approaches are an increasingly important source of support for cancer patients in the community. Interventions may be in an individual therapy, group or retreat format. (Downer et al., 1994).

1.7.1 Definition of CAM

Eisenberg et al. (1993) defined alternative medicine as techniques that are neither used as standard medical treatments nor taught in medical schools. Ernst (1995) described complementary medicine as “diagnosis, treatment, and/or prevention which complements mainstream medicine by contributing to a common whole, by satisfying a demand not met by orthodoxy or by diversifying the conceptual framework of medicine” (p. 245).

In the cancer context, Ernst and Cassileth (1999) and Cassileth (1999) suggest distinguishing between alternative methods and complementary methods. Thus, complementary or adjunctive approaches are those which are designed to enhance coping and adaptation and mental and physical well-being. Such approaches are underpinned by a holistic approach to health that includes the concept of unity of mind and body and personal responsibility for health. They are typically used to supplement conventional treatment and include the use of relaxation and meditation, prayer, stress management, nutrition, group support and psychotherapy.

Spiritual complementary therapies are among the most commonly used by cancer patients and may include prayer, distance healing, faith or spiritual healing, meditation, yoga, tai chi and qi gong. Spiritual healing, prayer and meditation typically top the list. However, prevalence may be under-reported as some people do not recognise prayer and meditation as complementary therapies (E. J. Taylor, 2005). 62 Chapter One: Literature Review

Alternative treatments are aimed at affecting tumour growth by purifying the body and strengthening its resources. They may include nutritional regimes, cleansing agents, metabolic therapies, homeopathy, vitamins and herbal medicines. There is some overlap between complementary and alternative treatments and approaches such as meditation and relaxation may be considered as alternative treatments when promoted as anticancer interventions.

Thus, in considering studies of mind body based treatments, a distinction may be made between studies of psychosocial interventions with psychosocial endpoints (for example, support groups to improve mood and coping style) and those of psychosocial interventions with biological endpoints, for example, hypnotism to promote tumour regression). The latter are considered to fall into the category of alternative medicine as they are based on hypotheses about mind/body relationships that are not part of conventional medicine.

1.7.2 Prevalence of alternative and complementary treatments

In a US survey of over 1500 adults, Eisenberg et al. (1993) found that 34% of respondents reported using at least one unconventional therapy in the past year. This increased to 42% in 1997 (Eisenberg et al., 1998). MacLennan, Wilson and Taylor (1996) interviewed over 3000 South Australians and found that the overall use of at least one non-medically prescribed alternative medicine (excluding calcium, iron and prescribed vitamins) was 48.5% in a one year period.

Ernst and Cassileth (1998) reviewed studies of the use of CAM therapies and found that the prevalence of use of complementary and alternative therapies in adult cancer patients ranged from seven to 64%. The average prevalence across all adult studies was 31.4%. This large variation is likely to be due to geographic, socioeconomic, religious, cultural, demographic or disease-related factors and also to differences in data collection. Patients typically use unconventional treatments in combination with mainstream ones.

However, methodological problems hinder the comparison of results across different studies of CAM use. There is no one commonly accepted definition of CAM and there are a variety of different instruments and terminology for assessing its use. Study participants may be asked about their use of ‘unconventional’ or ‘alternative’ or ‘complementary’ therapies without an accompanying definition of the term as used by 63 Chapter One: Literature Review

the investigators. If participants are not asked how they interpret the term, different understandings of the issue under study may exist from patient to patient and between patients and investigators.

1.7.2.1 Characteristics of those who use CAM therapies

Studies suggest that use of CAM therapies depends on sociodemographic characteristics of the patients, clinical characteristics of the disease, regional and cultural factors, and patients' patterns of coping with the disease.

1.7.2.1.1 Sociodemographic and disease factors

Younger age, female gender, higher level of education, and higher income and social class seem to be associated with more frequent use of CAM (Downer et al., 1994; Eisenberg et al., 1998). Patients with longer duration and progression of cancer also seem to use CAM more often than patients with primary and localized cancer (Downer et al., 1994; Paltiel et al., 2001; Sollner, Zingg-Schir, Rumpold, & Fritsch, 1997). However, Cassileth, Lusk, Strouse, & Bodenheimer (1984) concluded that patients who use unorthodox therapies are well-educated, frequently asymptomatic and are in the early stages of disease.

Downer et al. (1994) surveyed 600 oncology patients and found that 16% had used complementary therapies. The most popular were healing, relaxation, visualisation, diets, homoeopathy, vitamins and herbal medicine. Patients using CAM tended to be younger, of higher social class, and female. Scott, Kearney, Hummerston, & Molassiotis (2005) surveyed 127 UK adult cancer patients and found that 29% used CAM, most commonly relaxation, meditation and medicinal teas. Molassiotis et al. (2005) looked at CAM use in cancer patients in several European countries, ranging from Turkey to Iceland and found use rates to vary between 14.8% and 73.1%. In the Australian context, M. Miller et al. (1998) found that 52% of 173 patients in an Australian oncology clinic had used one unproven therapy since their cancer diagnosis and 28% had used three or more. Markovic, Manderson, Wray, & Quinn (2005) surveyed 53 Australian women diagnosed with gynaecological cancer and reported that one third used CAM.

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1.7.2.1.2 Satisfaction with CAM therapies

Patient satisfaction with complementary therapies, other than dietary therapies, is often reported as being high, even without the hoped for anticancer effects (Downer et al., 1994; Von Gruenigen et al., 2001) Reported psychological benefits included increased hope and optimism, improved wellbeing, reduced anxiety and increased sense of control (M. Miller et al., 1998; Patterson et al., 2002). Stoll (1993) concluded that any belief which increases hope of cure will improve QOL score and may override adverse physical components of the measurement. This may give the patient with a bad prognosis the necessary time to develop inner strengths enabling him or her to come to terms with the situation.

1.7.2.1.3 Psychosocial factors and CAM use

Some studies suggest that cancer patients who use CAM therapies have greater levels of distress or depression while other studies do not support this. Downer et al. (1994) found users of CAM more anxious but not more depressive than non-users. In a recent study on use of CAM by women with early stage breast carcinoma, Burstein, Gelber, Guadagnoli and Weeks (1999) found an association between use of CAM and depression, fear of recurrence of cancer, and lower scores for mental health as well as more physical symptoms. Paltiel et al. (2001) reported poorer quality of life and emotional functioning in CAM users. However, studies with brain tumor and melanoma patients did not show an association between CAM use and patient distress (Sollner et al., 1997; Verhoef, Hagen, Pelletier, & Forsyth, 1999)

Edgar, Remmer, Rosberger and Fournier (2000) found that women completing treatment for breast cancer who used cancer support organisations or complementary therapies scored high on the use of problem-solving coping and low on the use of escape/avoidance coping. They were also more optimistic, had a slightly lower sense of personal control and were more distressed than the non-users. The authors concluded that the use of support organisations and complementary therapies appeared to represent a thoughtful approach to dealing with the distress of cancer. Davidson, Geoghegan, McLaughlin and Woodward (2004) found that those who chose complementary therapies demonstrated significantly higher levels of fighting spirit and anxious preoccupation than those who did not. They concluded that for some patients the use of complementary therapies fulfils an important psychological need. 65 Chapter One: Literature Review

In a study of 551 women diagnosed with breast cancer Henderson and Donatelle (2003) found that the majority of these women had high perceptions of cancer control and used one or more types of CAM therapy. Statistical analysis indicated that higher perceptions of control over the course and cause of cancer predicted CAM use. Sollner et al. (2000) found that use of CAM was not associated with poor compliance or perceived distress but with active coping behaviour. They reported that patients saw CAM as a way of avoiding passivity and of coping with feelings of hopelessness.

In a written survey of CAM users Astin (1998) concluded that CAM users find these healthcare alternatives to be more congruent with their own values, beliefs, and philosophical orientations toward health and life. Alferi, Carver, Antoni, Weiss and Duran (2001) concluded that women with breast cancer were more likely to use complementary treatments to supplement their health rather than because of dissatisfaction with traditional medical care. Maskarinec, Tatsumura, Shumay and Kakai (2001) interviewed 143 cancer patients and found that genetics, environment, and diet were among the most common perceived general causes of cancer, whereas psychosocial factors were by far the most common perceived personal causes. CAM users were more likely than nonusers to name environment, immune system, and stress as cancer causes.

1.7.2.1.4 CAM and standard medical treatment

There are contradictory data on whether patients who use CAM do or do not reject standard treatments for cancer. Cassileth Lusk, Strouse and Bodenheimer (1984) reported that only 25% of patients initiated alternative regimens while under active conventional treatment. The study also showed that 43% of patients who used alternative therapies did so when their disease showed distant spread and 40% of cancer patients who used conventional and unorthodox treatment discontinued standard therapy entirely in favor of CAM. McGinnis (1991) found that only 5% of patients abandoned medical treatment in favour of alternative therapy. In a study on use of CAM in melanoma patients Söllner et al. (1997) found that compliance with physicians’ suggestions was equally high in users and in non-users of CAM. However, those patients interested in CAM felt emotionally less supported by their oncologists. Complementary and alternative medical (CAM) therapies are often seen by cancer patients as adding something which is missing from conventional treatment Sanson-

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Fisher et al. (2000). Lerner and Kennedy (1992) also found compliance with standard treatment to be unaffected by CAM use.

Begbie, Kerestes and Bell (1996) assessed the patterns of alternative medicine use in 319 patients of an Australian public hospital oncology unit, and compared patients' experience of alternative with conventional medicine. Results showed that expectations of and satisfaction with both conventional and alternative treatment were very high. Alternative treatments (most commonly dietary and psychological methods) were used by 21.9% of patients. Median annual cost of alternative therapy was $530, with most patients reporting ‘value for money’. Younger age and being married were positively associated, and satisfaction with conventional treatment was negatively associated, with CAM use and 40% of patients did not discuss alternative medicine with their physician.

Several studies have attempted to address the issue of whether cancer patients discuss their use of CAM with their doctors. Eisenberg et al. (1998) found that the majority (61.5%) patients did not disclose use of CAM to their physicians providing conventional treatment. Studies in cancer patients show varying levels of disclosure from 39.3% of US gynecological oncology patients (Von Gruenigen et al., 2001), 46.4% of Canadian breast cancer patients (Boon et al., 2000), 73.8% of Japanese breast cancer patients (Ashikaga et al., 2002).

A growing number of health professionals are also recommending CAM therapy, including psychospiritual approaches. Astin, Marie, Pelletier, Hansen and Haskell (1998) reviewed surveys examining the practices and beliefs of conventional physicians with regard to prominent CAM therapies. Acupuncture had the highest rate of physician referral (43%) followed by chiropractic (40%) and massage (21%). Rates of CAM practice by conventional physicians varied from a low of 9% for homeopathy to a high of 19% for chiropractic and massage therapy. Approximately half of the surveyed physicians believed in the efficacy of acupuncture (51%), chiropractic (53%), and massage (48%), while fewer believed in the value of homeopathy (26%) and herbal approaches (13%).

Gordon, Sobel and Tarazona (1998) surveyed almost 800 Northern California HMO physicians and found that 16% were using or recommending guided imagery, 48% were prescribing meditation, and 27% were prescribing movement therapies such as yoga, tai chi, or chi gong as adjuvant therapy. An Australian survey found that 57.1% of

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oncologists had never sought information about CAM (Dooley, Lee, & Marriott, 2004). However, patients and oncologists differ in their views of CAM treatments, with physicians less likely to attribute benefits to CAM (M. A. Richardson et al., 2004).

1.7.3 Effectiveness of CAM treatments

The growing interest in and use of CAM in cancer patients has led to a growth in research investigating their use. However, in many cases studies are small and methodologically weak. Techniques such as imagery and meditation have been used with some success for the purpose of relaxation, or attempts at controlling physical symptoms in medical populations. The use of such techniques on psychological adjustment to cancer is considered in section 1.6.3.2.1.

Syrjala, Donaldson, Davis, Kippes and Carr (1995) compared oral mucositis pain levels in cancer patients receiving bone marrow transplants (BMT) and concluded that relaxation and imagery training reduces cancer treatment-related pain. However, adding cognitive-behavioural skills to the relaxation with imagery did not further improve pain relief. Other studies have also shown benefits in pain reduction (Sloman, 1995). Relaxation techniques have been shown to improve immune response (Hidderley & Holt, 2004) and help relieve chemotherapy-related nausea and vomiting (Molassiotis, Yung, Yam, Chan, & Mok, 2002).

Risberg, Lund, Wist, Kaasa and Wilsgaard (1998) investigated the use of alternative therapies among cancer patients over a five-year period and the relationship of this use to survival. During the study period the likelihood of using alternative therapies was 45%. Women were more likely than men to use such therapies (50% versus 31%) and patients in the 30 to 59 age group were the most prevalent users of alternative therapies. At the conclusion of the investigation, 27% of all patients were using some form of CAM. The use of alternative therapies was not seen to impact on survival.

Very few studies of the effects of complementary treatments on cancer survival have been conducted and many investigations are methodologically flawed. The Bristol Cancer Help Centre Study (Bagenal, Easton, Harris, Chilvers, & McElwain, 1990) apparently demonstrated that survival of women with breast cancer who were treated by an additional CAM treatment had a significantly poorer survival rate than those not receiving the additional treatment. However, this trial has been discredited on the basis

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that these results were probably due to selection bias and would have been avoided had the study been properly randomised.

Cassileth et al. (1991) compared the length of survival and quality of life in 78 patients who received treatment at a prominent US unorthodox cancer clinic in addition to conventional treatment and in 78 control patients from an academic cancer centre who received only conventional treatment. Patient cohorts were matched in terms of demographic characteristics and all the patients had documented extensive malignant disease associated with a predicted median survival time of less than one year. There was no difference between the two patient groups in terms of length of survival, and quality-of-life scores were consistently better among conventionally treated patients from enrolment onwards.

1.7.3.1 Diet and cancer

While there is an enormous amount of research covering the role of dietary factors in the causes and prevention of cancer, there have been relatively few studies examining the role of diet in the treatment of cancer. Ravasco, Monteiro-Grillo, Vidal and Camilo et al. (2004) evaluated the contribution of nutritional status and dietary intake to quality of life in cancer patients and reported that there were some diagnoses for which the impact of nutritional deterioration, combined with deficiencies in nutritional intake, may be more important than the stage of the disease process.

Many patients try to cope with cancer by making lifestyle changes, possibly in the hope of increasing quality of life and affecting disease outcome, with dietary changes among the most common (Begbie et al., 1996; Burstein et al., 1999; Lee, Lin, Wrensch, Adler, & Eisenberg, 2000). Maunsell, Drolet, Brisson, Robert and Deschenes (2002) assessed extent, predictors, and effect on psychological distress of dietary changes among 250 women with newly diagnosed, non-metastatic breast cancer. At 12 months, 41% (n = 103) reported making dietary changes since diagnosis, with decreases in meat (77%) and increases in fruit and vegetable intake (72%) being the most frequent. Women reporting changes were more likely to be younger, to be receiving adjuvant therapy, and to be more distressed initially. The mean 0 to 12 month decrease in psychological distress was greater in women who reported changes than those who did not.

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1.7.3.1.1 Dietary interventions

Several studies have examined the effects of dietary counseling on changes in fruit, vegetable, fibre and fat consumption in cancer patients (Demark-Wahnefried et al., 2001; Kuhn, Boesen, Ross, & Johansen, 2005; Saxe et al., 2001), although none of these studies reported effects on cancer recurrence or survival.

1.8 Meditation

A number of the supportive interventions for cancer patients discussed above incorporate a meditation component. It is also an important component of The Gawler Foundation program. Meditation is a general term which may be defined as the “intentional self-regulation of attention from moment to moment” (Kabat-Zinn, 1982, p. 33) or as a "family of techniques which have in common a conscious attempt to focus attention in a non-analytical way, and an attempt not to dwell on discursive, ruminating thought" (D. H. Shapiro, Jr., 1982, p. 268).

While it is often the Asian religions that come to mind when meditation is mentioned, all the great religious traditions incorporate some form of meditation and many different techniques exist. In the West, the cultural climate of the 1960s proved fertile ground for the growth of interest in meditation as a spiritual practice. Since that time, various Asian forms of meditation have undergone a kind of reformulation to better suit Western culture. There has been a trend to de-emphasize the religious and spiritual dimensions of practice and to focus clinical and research effort on the physiological and psychological effects of meditation practices. This has led to the development of their use as therapies for health purposes. Meditation used in this way is not necessarily linked with spiritual endeavour although Shapiro (1992) comments that meditation can be “a unique bridge between self-regulation, stress management and mind/body issues on one hand and religion and values on the other” (p. 36).

1.8.1 Types of meditation

Meditation techniques may be divided into two broad categories: those with an emphasis on concentration such as Transcendental Meditation; and those with an emphasis on mindfulness such as vipassana, mindfulness-based stress reduction. Concentration-based approaches involve focusing attention on a particular stimulus, such as a mantra, sound, object or sensation. When attention wanders, the meditator 70 Chapter One: Literature Review

brings attention back to the object of meditation without paying any attention to the distraction. Mindfulness meditation techniques emphasise non-judgemental attention to constantly changing internal (bodily sensations, cognitions, perceptions, and emotions) and external (sights and sounds in the environment) stimuli as they arise. Some techniques combine both approaches, particularly in the beginning stages.

Shapiro (1982) divides meditation into three types: those that focus on the field or background perception such as Zen meditation; those that focus on a specific object such as Transcendental Meditation and those that shift the focus between the field and the object such as mindfulness-based stress reduction. The Roosevelt University Stress Institute (www.roosevelt.edu/stress/research.htm) divides meditation into eight types:

• Meditation on a relaxing body sensation (example “the feeling of warmth inside”)

• Meditation on movement or posture (tai chi, prayer beads, zen walks)

• Breath meditation

• Mantra meditation

• Meditation on an internal visual image (with eyes closed)

• Meditation on an external visual stimulus (a candle, religious symbol, etc.)

• Meditation on a simple sound

• Mindfulness meditation

1.8.1.1 Mindfulness meditation

Mindfulness has been defined as “paying attention in a particular way: on purpose, in the present moment, and non-judgmentally” (Kabat-Zinn, 1994, p. 4) and “bringing one’s complete attention to the present experience on a moment-to-moment basis” (Marlatt & Kristeller, 1999, p. 68). The ability to direct attention in this way is developed through a type of meditation originating in the Southeast Asian Buddhist tradition. Participants learn to attend to constantly changing internal and external stimuli as they arise. These stimuli are observed with interested awareness and non- judgmentally that is, they are not evaluated positively or negatively.

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1.8.1.2 Mindfulness-based stress reduction (MBSR)

While the concept of mindfulness is a relatively new one in Western culture, the recognition that mindfulness is essentially about the universal human faculty of attention has led to development of programs which incorporate mindfulness meditation as commonsense approach to self-awareness, growth and change rather than as a Buddhist spiritual practice (Kabat-Zinn, 2002). Mindfulness-based stress reduction (MBSR) is an approach developed by Jon Kabat-Zinn and colleagues of the Stress Reduction Clinic at the University of Massachusetts Medical School. It centres around developing the ability to non-judgmentally observe the way the mind works in order to develop more realistic perceptions and greater appreciation of positive as well as negative experiences. A consequence of the practice is the realisation that thoughts, emotions and sensations are transient. This may allow the development of new way of coping with experiences and problems.

The clinical focus is on a broad range of chronic pain and stress-related disorders. It emphasises the health benefits of meditation, while de-emphasising the cultural roots and the religious and ideological aspects of the practice. Thus, those who may be unwilling to adopt a Buddhist religious approach are still able to benefit from developing mindfulness practice.

The program combines elements of vipassana, Zen Buddhism and Hatha Yoga. Patients are taught a basic regime of stretching and relaxation as well as different forms of seated meditation that they can practice at home. The program involves eight to 10 weekly two to two-and-a-half hour sessions for groups of up to 30 participants. Sessions involve instruction and practice in mindfulness meditation skills along with a discussion of stress, coping and homework assignments. An all-day intensive session may be held around the sixth week. Participants are instructed to practice for at least 45 minutes per day six days a week.

Participants are taught a number of mindfulness exercises including a body scan, which involves directing attention sequentially to parts of the body while carefully noting the sensations in each area. In meditation, participants are asked to focus on a target of observation, which is usually breathing or walking and to be aware of it in each moment. When the mind wanders into thoughts and feelings, participants are asked to notice these and then gently return their attention to the meditation target, without

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become absorbed in the thoughts or judging them. Participants also practice mindfulness during ordinary activities like walking, standing and eating.

Thus, mindfulness meditation is not limited to any particular setting and can be applied to all daily activities, which contributes to its usefulness in helping patients with chronic disorders to cope with their situation better. The accessibility and wide range of application have led to the spread to MBSR to more than 240 hospitals in the US (Salmon, Santorelli, & Kabat-Zinn, 1998) and others around the world. It is the most frequently cited method of mindfulness training and several studies have investigated the effects of MBSR as a clinical intervention.

1.8.1.3 Mindfulness meditation-based therapies

A recent development is the tailoring of a mindfulness-meditation based intervention to specific populations. Mindfulness-based cognitive therapy (MBCT) is an intervention which incorporates mindfulness meditation with elements of cognitive therapy and is intended specifically to the prevention of depressive relapse in those who have had major depression and have been treated successfully with antidepressant medications (Segal, Williams, & Teasdale, 2002). In a randomized trial of MBCT, Teasdale et al. (2002) found that for patients with three or more previous depressive episodes, but not in those with one or two relapses, results showed much lower relapse rates for MBCT patients. During the one-year follow-up period, 37% of patients in the MBCT group relapsed compared with 66% in the treatment as usual group.

Another specifically tailored mindfulness meditation- based therapy is dialectical behaviour therapy (DBT) which is aimed at those with borderline personality disorder (Linehan, Armstrong, Suarez, Allmon, & Heard, 1991; E. B. Simpson et al., 2004). Relapse prevention (RP) is a cognitive-behavioral treatment package which incorporates mindfulness skills and is designed to forestall relapses in individuals treated for substance abuse (Marlatt & Gordon, 1985). Another type of therapy, acceptance and commitment therapy (ACT) is aimed at those with a number of problems, ranging from formal psychiatric diagnoses to low life satisfaction (Hayes, Strosahl, & Wilson, 1999).

1.8.1.4 Transcendental Meditation (TM)

Transcendental Meditation is the form taught by the Indian teacher Maharishi Mahesh Yogi, who follows the Hindu Vedantic tradition. It is one of the most extensively taught

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and researched forms in the world, with over 500 published studies, some in refereed journals and some from TM conferences and in-house TM publications. Much of the research is done at the Maharishi International School of Management in Fairfield Iowa.

Similarly to MBSR, TM is promoted as a non-religious form of meditation. It involves 15 to 20 minutes meditation in the morning and afternoon while sitting comfortably with the eyes closed. TM is characterised as a concentration-based approach which trains participants to restrict the focus of attention to a Sanskrit word known as a mantra. When attention wanders, it is redirected to the object of meditation, with no attention paid to the nature of the distraction. Research has covered various areas including biochemistry, physiology, psychology, and sociology. The effects of TM on medical conditions such as asthma, angina and high blood pressure have been examined. Researchers have also assessed the effects of TM on personality variables such as problem-solving ability, thinking and recall, self-esteem and self-actualisation, while others have explored the effects of TM in social situations such as those involving police, military and juvenile offenders (Murphy & Donovan, 1999).

1.8.1.5 Other types of meditation

In addition to those described above, there are many other types of meditation. The type of meditation used in the current study is known as Stillness Meditation and was developed by the psychiatrist Ainslie Meares (Meares, 1976b). It is characterised by its absence of technique or effort of any kind. Participants are advised to sit in a mildly uncomfortable position, practice a progressive muscle relaxation technique and then allow the mind to experience stillness.

1.8.2 Meditation and relaxation

Herbert Benson, a cardiologist at Harvard Medical School and author of the well-known book The Relaxation Response identified the relaxation response as a natural reflex mechanism which, when practiced 20 minutes a day, reduced stress and physiologically had the opposite effect of the fight-flight reflex. The relaxation response includes changes in metabolism, heart rate, respiration, blood pressure and brain chemistry (Lazar et al., 2000).

The induction of relaxation by meditation practices has been documented in the literature (Benson, 1975; D. H. Shapiro, Jr., 1982; Wallace, 1970) and is likely to

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contribute to the beneficial effects of meditation in managing stress-related disorders. This is implicit in the term ‘MBSR’ and several studies have assessed its efficacy in the treatment of stress-related disorders including psoriasis and fibromyalgia (see section 1.8.5.1).

However, the primary purpose of meditation practices, including MBSR, is not to induce relaxation per se but to teach non-judgmental awareness of the moment-to- moment workings of the mind. Various researchers have attempted to investigate the relationship between meditation and relaxation. In general, meditation differs from relaxation techniques in its emphasis on maintaining alertness and in its philosophical/cognitive background which aims at expanding self-awareness and increasing a sense of integration (Perez-de-Albeniz & Holmes, 2000; Snaith, 1998).

Davidson and Schwartz (1976; 1984) divided arousal and relaxation into cognitive and somatic categories and proposed that each category requires different relaxation techniques. According to this theory, cognitive techniques such as imagery and meditation should work better for cognitive symptoms and physical techniques such as progressive muscle relaxation (PMR) and yoga stretching should work better for physical symptoms. However, Benson (1975) tends to consider that all relaxation techniques are interchangeable and equally effective. Jonathan Smith, a cognitive behavioural psychologist at the Stress Institute, Roosevelt University considers relaxation to be a subset of meditation and proposes that relaxation is most effective when it includes supportive cognitive structures such as those found in philosophical systems.

Smith (1999; 2001) has developed an Attentional Behavioral Cognitive (ABC) theory of relaxation that proposes that different approaches to relaxation have different positive psychological effects. Smith (1996) asked 940 practitioners of techniques such as massage, PMR, yoga stretching, breathing, imagery meditation, and various combination treatments to describe their technique experiences on an 82-item wordlist. From this and more recent studies Smith (2001) has identified what he describes as 15 relaxation state (R-State) categories: sleepiness, disengagement, physical relaxation, mental quiet, rested/refreshed, at ease/peace, childlike innocence, energized, joy, thankfulness and love, mystery, awe and wonder, prayerfulness, and timeless/boundless/infinite. The 15th R-State, aware, is defined as a meta-state that can either exist alone or in combination with other states. According to ABC relaxation 75 Chapter One: Literature Review

theory, all approaches to relaxation involve sustaining passive simple focus but techniques differ in which R-States they evoke. Some EEG studies support the view that relaxation and meditation are different states and that there may be differences between different types of meditation (B. R. Dunn, Hartigan, & Mikulas, 1999).

Gillani and Smith (2001) studied the psychological effects of one hour of Zen meditation among 59 practitioners with at least six years of experience. They were compared with a control group of 24 college students who spent 60 min silently reading popular magazines. Analyses revealed that meditators were more likely to display the relaxation dispositions: mental quiet, mental relaxation, and timeless/boundless/infinite. Pre- and post-session analyses revealed that meditators showed greater increments in the relaxation states mental quiet, love and thankfulness, and prayerfulness, as well as reduced worry. They concluded that Zen meditation is different to other relaxation techniques in terms of the R-states it evokes.

1.8.3 Physiological effects of meditation

In recent years, several studies have attempted to assess the physiological effects of meditation, including cardiovascular, cortical, hormonal, and metabolic changes. However, overall conclusions are hard to draw as some effects have appeared consistently, while others have not. Greater research effort has tended to focus on variables that have a direct on health. In some cases, interventions to treat specific health concerns have been developed, for example, the use of meditation to treat hypertension.

Jevning et al. (1992) reviewed the physiological data on TM, and hypothesized that meditation is an integrated response with peripheral circulatory and metabolic changes subserving increased central nervous activity. Findings during meditation include increased cardiac output, probable increased cerebral blood flow, lowering of carbon dioxide generation by muscle, five-fold plasma arginine vasopressin elevation, and EEG synchrony.

1.8.3.1 The cardiovascular system

Studies have shown that heart rate usually slows during meditation (Solberg et al., 2004; Telles, Nagarathna, & Nagendra, 1998; Travis & Wallace, 1997). However, some forms of meditation may be accompanied by an increase in heart rate (Peng et al., 2004; Peng

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et al., 1999), a complication which is referred to as the ‘meditation paradox’. In general, most subject groups show a lowering of heart rate during meditation and some experienced individuals may show a permanent lowering (Barnes, Davis, Murzynowski, & Treiber, 2004; Barnes, Treiber, & Davis, 2001). Redistribution of blood flow has also been reported (Jevning, Anand, Biedebach, & Fernando, 1996). However, most studies are limited by small sample sizes and only involve TM practitioners, a factor which may limit the generalisability of findings. There is some evidence that meditation helps lower blood pressure in those who have normal blood pressure or who are moderately hypertensive. (Schneider et al., 1995). It seems that compliance and continued practice is necessary for the beneficial effects to be sustained (Wallace, Silver, & Mills, 1983; Wenneberg et al., 1997).

Meditation has been used to treat hypertension and other cardiovascular conditions with some success (Barnes et al., 2004; Castillo-Richmond et al., 2000; Schneider, Alexander, Staggers, Orme-Johnson et al., 2005; Schneider, Alexander, Staggers, Rainforth et al., 2005; Schneider et al., 1998; Zamarra, Schneider, Besseghini, Robinson, & Salerno, 1996).

1.8.3.2 The endocrine system

While studies of the effects of meditation on circulating hormone levels are generally inconclusive, some research suggests that meditation lowers levels of adrenal hormones and this may correlate with length of practice (Walton, Pugh, Gelderloos, & Macrae, 1995). Research suggests that chronic stress causes high basal cortisol levels and low cortisol response to acute stressors and that such changes may contribute to disease (McEwen, 1998). Sudsuang, Chentanez and Veluvan (1991) found decreased cortisol levels after Buddhist meditation in inexperienced meditators. In a prospective randomised study, Maclean et al. (1997) found lowered levels of the stress hormone cortisol in TM program participants four months after the intervention. Walton et al. (2004) found a decreased response to cortisol challenge in older women TM practitioners as compared to controls, which may reflect better endocrine regulation. Carlson, Speca, Patel and Goodey (2004) reported possibly beneficial shifts in cortisol secretion patterns in cancer patients who participated in an MBSR program. However, not all studies have reported decreases in adrenal hormones (Cooper et al., 1985; Werner et al., 1986).

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Some research suggests that increases in levels of the hormone melatonin may be important in mediating the beneficial effects of meditation as these have been shown to be higher in those who meditate regularly (Harinath et al., 2004; Massion, Teas, Hebert, Wertheimer, & Kabat-Zinn, 1995; Tooley, Armstrong, Norman, & Sali, 2000). However, Carlson, Speca, Patel and Goodey (2004) found no changes in plasma melatonin in cancer patients who participated in an MBSR program.

1.8.3.3 The immune system

Solberg et al. (1995) found that meditation may modify the suppressive influence of strenuous physical stress on the immune system in male athletes. However, in a similar study Solberg et al. (2000) found no beneficial effects. Other findings include improved immunity to shingles in the elderly after participation in tai chi (Irwin, Pike, & Oxman, 2004), improvements in a number of immune parameters after a qi gong intervention (Manzaneque et al., 2004), beneficial effects on immunity in cancer patients participating in a randomised trial of the effects of autogenic training (Hidderley & Holt, 2004).

Davidson et al. (2003) carried out a randomized, controlled study on the effects on brain and immune function of MBSR applied in a work environment with healthy employees. The researchers measured brain electrical activity in 25 subjects before and immediately after, and then four months after an eight-week training program in mindfulness meditation. A wait-list control group of 16 participants was tested at the same points in time as the meditators. At the end of the eight-week period, subjects in both groups were vaccinated with influenza vaccine. The results showed significant increases in antibody titers to influenza vaccine among subjects in the meditation compared with those in the wait-list control group.

1.8.3.4 EEG studies

A number of recent studies have explored the effects of meditation on various facets of brain activity. In the study mentioned in section 1.8.3.3, Davidson et al. (2003) reported EEG data showing for the first time significant increases in left-sided anterior activation, a pattern previously associated with positive affect, in the meditators compared with the non-meditators. The results also showed that the magnitude of increase in left-sided activation predicted the magnitude of antibody titer rise to the

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vaccine. Other researchers have examined the effects of meditation on alpha and theta EEG power (Takahashi et al., 2005; Travis, 2001).

1.8.3.5 Other physiological effects

Other physiological effects of meditation include decreases in respiration rate and oxygen consumption (Kesterson & Clinch, 1989; Sudsuang et al., 1991), reduced muscle tension (Morse, Martin, & Furst, 1977; Zaichkowsky & Kamen, 1978) and reduced arousal as assessed by increased skin resistance (Delmonte, 1984).

1.8.4 Cognitive and behavioural effects

Many research studies have examined the behavioural effects of meditation practice. These include improved sensory and perceptual and cognitive abilities:

• perceptual ability including visual sensitivity (D. Brown, Forte, & Dysart, 1984)

• auditory sensitivity (Keithler, 1981)

• enhanced visual imagery ability (Heil, 1983)

• reaction time and perceptual motor speed (Jedrczak, Toomey, & Clements, 1986)

• field independence (Bono, 1984)

• concentration and attention (Moretti-Altuna, 1987; Tomassetti, 1985)

• memory and intelligence (Jedrczak et al., 1986; Verma, Jayashan, & Palani, 1982)

• empathy (S. L. Shapiro, Schwartz, & Bonner, 1998; Sweet & Johnson, 1990)

• cognitive flexibility (Alexander, Langer, Newman, Chandler, & Davies, 1989)

In general, research into TM suggests that meditation practice leads to a change in cognitive function. However, methodological problems occur with much of this research. Canter and Ernst (2003) reviewed 10 randomized trials with objective outcome measures of the cumulative effects of TM on cognitive function. Four of the trials reported large positive effects of TM on cognitive function, four were completely negative, and two were largely negative in outcome. All four positive trials recruited subjects from among people favourably predisposed towards TM and used passive control procedures. The other six trials recruited subjects with no specific interest in TM and five of them used structured control procedures. Canter and Ernst concluded that

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the large positive effects reported in four trials resulted from expectation effects and that the evidence does not support beneficial effects of TM on cognitive change.

1.8.4.1 Cognitive change and mindfulness

In cognitive psychological terms, meditation involves a conscious attempt to control attention and an attempt not to dwell on discursive, ruminating thought. As mentioned above, mindfulness meditation is encouraged as a way to develop the ability to observe the mind’s operations non-judgmentally, leading to the development of more realistic perceptions, greater appreciation of positive as well as negative experiences. Practitioners come to realize that most sensations, thoughts and emotions are transient. Thus, the cognitive aspects of meditation underlie some of its clinical applications as increased awareness may bring about improved self-management through different ways of coping with problems and changes in habitual cognition and patterns of responding. In an effort to investigate this, Wenk-Sormaz (2005) found that meditation practice reduced habitual responding in college students on a series of psychological tests.

This change in habitual patterns of responding is of use in psychotherapy (Perez-de- Albeniz & Holmes, 2000) and has been hypothesized to underlie the benefits in the treatment of disorders such as binge eating and addiction as participants learn to be aware of urges to binge or abuse alcohol or drugs without the need to give in to these urges (Kristeller & Hallett, 1999; Marlatt, 1994). In MBCT, Teasdale, Segal and Williams (1995) note that mindfulness training encourages awareness of all cognitive and emotional events as they occur, including those that may be early signs of potential depressive relapse. Ramel, Goldin, Carmona and McQuaid (2004) examined the effects of MBSR on depression, anxiety, dysfunctional attitudes, and rumination in individuals with lifetime mood disorders. Their results showed that mindfulness meditation practice leads to decreases in ruminative thinking, even after controlling for reductions in affective symptoms and dysfunctional beliefs. In the treatment of borderline personality disorder, Linehan (1993) suggests that non-judgemental observation and description permits recognition of the consequences of behaviors in place of global judgments about the self and that this recognition may lead to more effective behavior change.

In a recent paper, a group of eminent researchers in the field proposed an operational definition of mindfulness (Bishop et al., 2004). They propose a two-component model 80 Chapter One: Literature Review

of mindfulness, with the first component involving the self-regulation of attention so that it is maintained on immediate experience. This involves sustained attention, attention switching and the inhibition of elaborative processing. The second component involves adopting an orientation to the experience of curiosity, openness and acceptance. Baer, Smith and Allen (2004) identifies the components of mindfulness as observing, describing, acting with awareness and accepting (or allowing) without judgement. Bishop et al. (2004) propose that mindfulness is a psychological process and is similar to a skill that can be developed with practice. They hypothesise that this mode of awareness is not limited to meditation and that once learned, the skills can be regulated to evoke mindfulness in many situations.

Other researchers have examined mindfulness in the context of constructs such as flow (Czikszentmihalyi, 1997) and absorption (Tellegen & Atkinson, 1974). However, it has been pointed out that while some mindfulness-based interventions operate in a similar way to traditional cognitive-behavioural approaches, there are differences with mindfulness approaches aiming to change cognitive processes rather than content (Melbourne Academic Mindfulness Interest Group, 2006).

1.8.5 Meditation and wellbeing

Meditation techniques are used by a wide range of health professionals. Within the various schools of psychology, psychodynamic therapists may use meditation as a tool to aid repressed material to come from the unconscious; humanistic psychologists may use it to help people gain self-responsibility; and behaviourists tend to use it for stress management and self-regulation.

Much of the research data has come from studies of the use of meditation as a self- regulation strategy to address stress and pain management. There have also been a number of studies of the use of meditation to enhance relaxation and physical health in those with medical and psychiatric diagnoses. The use of meditation in this way can be seen as part of the growth in interest in complementary and alternative medicine (CAM), which places great value on a patient’s desire to be proactive and take initiative in personal care, and also incorporates a recognition that mental factors such as stress significantly contribute to a lack of physical health. The American National Institutes of Health National Center for Complementary and Alternative Medicine (NCCAM)

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considers meditation as a mind-body therapy, intended to enhance health, change symptomatic states and promote relaxation (http://nccam.nih.gov/health/whatiscam/).

However, while meditation is often seen as part of complementary medicine, it has been pointed out that some meditation programs (notably MBSR) are often delivered within mainstream medical centres. Kabat-Zinn (2002) notes that the Stress Reduction Clinic, which was founded in 1979, is located within the University of Massachusetts Medical Centre and was “initially conceived of as a potentially important mainstream option, integral to the practice of good medicine” (p. 732). The spread of the program to over 240 US medical centres reinforces this view.

In a Journal of the American Medical Association editorial, Holman (2004) noted that chronic disease has replaced acute disease as the dominant health problem and that the current medical system often does not well serve those with chronic illnesses. Meditation programs such as MBSR offer a way for those who are chronically ill or stressed to develop internal resources, competence and self-mastery which can lead to greater levels of health and well-being (Kabat-Zinn, 1982, 2002). Programs are generally seen as something that can complement mainstream health care and may function “as a ‘net’ to catch patients who tend to ‘fall through the cracks’ in the health care delivery system” (Kabat-Zinn, 2002). The focus of this review is on health and wellbeing in clinical and general populations.

1.8.5.1 Stress reduction and general wellbeing

1.8.5.1.1 Non-clinical populations

Stress reduction has been a major focus of meditation research. In an early study, Goleman and Schwartz (1976) reported that practice of mindfulness meditation is associated with reduced subjective and physiologic reactions to laboratory stress among healthy students. Astin (1997) carried out a randomized trial of the effects of MBSR on college undergraduates. Results showed reductions in psychological symptomatology; increase in domain-specific sense of control and utilization of an accepting or yielding mode of control; and higher scores on a measure of spiritual experiences. Study limitations include no accounting for experimenter effects and limited generalisability as all subjects were self-selecting students. The study included a wait-list control group therefore assessment of long-term benefits was not possible.

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In a randomised study, with a wait-list control group, S. L. Shapiro, Schwartz and Bonner (1998) examined the effects of MBSR on 78 premedical and medical students. The results showed that participation in the intervention reduced self-reported state and trait anxiety, reduced reports of overall psychological distress including depression, increased scores on overall empathy levels, and increased scores on a measure of spiritual experiences. These results were replicated in the wait-list control group and were observed during the exam period. However, long term effects were not assessed and again, the participants voluntarily enrolled in the program.

Tsai and Crockett (1993) tested the effectiveness of relaxation training on work stress in 137 Taiwanese nurses. Half the subjects received two sessions of relaxation training in weeks one and two, with a follow-up session in week five. Controls received a lecture on nursing theory. Decreases in work stress and improvements in self-reported health were seen in the intervention group and greater duration of practice was associated with more effective results. Williams, Kolar, Reger and Pearson (2001) carried out a randomised controlled study of MBSR in a university setting. The control group received educational materials and were encouraged to use community resources for stress management. The effect of daily stress, psychological distress, and medical symptoms were measured. A follow-up questionnaire measuring program adherence was also given. The results showed that intervention subjects reported significant decreases from baseline in effect of daily hassles (24%), psychological distress, (44%), and medical symptoms (46%) that were maintained at the three-month follow-up compared to control subjects. This it seems that meditation interventions may have beneficial effects on various measures of wellbeing in non-clinical opulations, although more research is needed.

1.8.5.1.2 Mixed clinical populations

Kutz, Leserman and Dorrington (1985) studied a sample of long-term psychodynamic therapy patients with a variety of psychiatric diagnoses. Incorporating a 10-week MBSR program with individual psychotherapy produced statistically significant improvements in a variety of self- and therapist-rated symptoms. Roth and Creaser (1997) studied the effects of an MBSR program in outpatients from an inner city health clinic and found statistically significant improvements on several measures of medical and psychological functioning. However, these studies were uncontrolled as was the study by Reibel,

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Greeson, Brainard and Rosenzweig (2001) which examined the effects of MBSR on health-related quality of life and physical and psychological symptomatology in 136 patients with a variety of diagnoses. Pre- and post-intervention data showed improvements on quality of life indices, alleviation of physical symptoms and decreased psychological distress. One-year follow-up revealed maintenance of initial improvements on several outcome parameters.

In an uncontrolled exploratory study carried out in Germany, (Majumdar, Grossman, Dietz-Waschkowski, Kersig and Walach (2002) assessed the effects of MBSR in 21 participants with chronic physical, psychologic, or psychosomatic illnesses. Subjects were examined in a study with a longitudinal pre-test and post-treatment design with a three-month follow-up. They reported that the interventions led to high levels of adherence to the meditation practice and satisfaction with the benefits of the course, as well as effective and lasting reductions of symptoms (especially in psychological distress, well-being, and quality of life). Changes were of moderate-to-large effect sizes. Positive complementary effects with psychotherapy were also found. Gross et al. (2004) found beneficial effects of MBSR in organ transplant patients, with reductions in symptoms of anxiety, depression, sleep disturbance and improved quality of life.

Alexander, Langer, Newman, Chandler and Davies (1989) studied 73 residents of eight homes for the elderly, with a mean age of 81 years. Participants were randomly assigned among four groups: no treatment, TM, mindfulness training (MF) in active distinction making, or a relaxation (low mindfulness) program. Outcome measures included paired associate learning; two measures of cognitive flexibility; mental health; systolic blood pressure; and ratings of behavioural flexibility, aging, and treatment efficacy. Comparison showed that the TM group improved most, followed by the MF group. After three years, survival rate was 100% for TM and 87.5% for MF in contrast to lower rates for other groups.

A number of studies have used various physical and psychological measures to compare TM meditators and non-meditators and concluded that meditators have better overall physical and psychological health (Gelderloos, Hermans, Ahlscrom, & Jacoby, 1990; Walton, Cavanaugh, & Pugh, 2005). However, these results are confounded by self– selection and not all studies have shown positive effects (Kline, Docherty, & Farley, 1982; Throll, 1982). Thus, in clinical populations, meditation appears to be beneficial

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on a number of psychological and physiological outcomes, although further methodologically rigorous studies are needed.

1.8.5.2 Pain relief

The first published study of the effects of MBSR described the effect of the program on patients with chronic pain. Sitting for prolonged periods in meditation can cause pain in various parts of the body, such as the muscles and joints. Practitioners are encouraged not to move but rather to focus on the sensations and take a non-judgemental attitude towards them as well as the thoughts and emotions that accompany the sensations. In this way, a person’s relationship with pain often shifts. This has potential to help relieve suffering and distress in those who experience chronic pain by helping to lessen the emotional reactivity that often accompanies such pain.

Kabat-Zinn (1982) carried out an uncontrolled study of 51 chronic pain patients who had not improved with traditional medical care. After the 10-week MBSR intervention, results showed reductions in ratings of pain, medical symptoms, mood disturbance and psychiatric symptoms. Kabat-Zinn, Lipworth and Burney (1985) extended this study to a sample of 90 patients (including the 51 patients mentioned above ) and compared these with 21 other pain patients who had received treatment as usual in the pain clinic but had not participated in the MBSR program.

Statistically significant reductions were observed in measures of present-moment pain, negative body image, inhibition of activity by pain, symptoms, mood disturbance, and psychological symptomatology, including anxiety and depression. Pain-related drug utilization decreased and activity levels and feelings of self-esteem increased. Improvement appeared to be independent of gender, source of referral, and type of pain. At follow-up, the improvements observed during the meditation training were maintained up to 15 months post-meditation training for all measures except present- moment pain. The majority of subjects reported continued high compliance with the meditation practice as part of their daily lives.

Kabat-Zinn, Lipworth, Burney and Sellers (1986) reported follow-up evaluations of chronic pain patients who had participated in MBSR programs over the preceding several years, including patients in the studies mentioned above Analysis showed that stability of effects were documented for up to four years. In an uncontrolled study, Randolph, Caldera and Tacone (1999) found beneficial effects of MBSR in 78 chronic 85 Chapter One: Literature Review

pain patients. Mills and Farrow (1981) found lower a distress response to acute experimental pain in TM practitioners as compared to controls and Hustad and Carnes (1988) showed beneficial effects of walking meditation on levels of pain and anxiety. These studies suggest the usefulness of more methodologically beneficial effects of meditation on pain relief, although there is a need for further controlled studies.

1.8.5.3 Anxiety

Some research suggests that those who meditate may be less anxious than those who do not (Astin, 1997; Delmonte, 1985; Edwards, 1991; S. L. Shapiro et al., 1998). Kabat- Zinn et al. (1992) propose that mindfulness meditation may have beneficial effects in anxiety for reasons similar to those discussed above in the context of pain relief. Sustained, non-judgemental observation of pain and anxiety-related thoughts, without attempts to escape or avoid them may lead to the understanding that they are “just thoughts,” rather than accurate reflections of reality. This may help to reduce the emotional reactivity usually linked to anxiety symptoms (Kabat-Zinn, 1982; Kabat-Zinn et al., 1992).

Kabat-Zinn et al. (1992) studied the effects of the MBSR program on 22 patients who met the DSM-III-R criteria for generalized anxiety disorder or panic disorder with or without agoraphobia. Assessments, including self-ratings and therapists' ratings, were obtained weekly before and during the meditation-based stress reduction and relaxation program and monthly during the three-month follow-up period. The results showed significant reductions in anxiety and depression scores after treatment for 20 of the participants. These changes were maintained at follow-up and the number of subjects experiencing panic symptoms was also substantially reduced. A no-treatment control group was not included and 55% of the patients also received medication during the program. Miller, Fletcher and Kabat-Zinn (1995) reported a three-year follow-up of 18 of the 22 participants and found that treatment gains had been maintained. Ongoing compliance with the meditation practice was also demonstrated in the majority of subjects at three years.

Raskin, Bali and Peeke (1980) conducted a study comparing muscle biofeedback, TM and relaxation therapy in patients diagnosed with anxiety disorders. Their results showed that 40 percent of the subjects had a clinically significant decrease in their anxiety. However, there were no differences between treatments with respect to 86 Chapter One: Literature Review

treatment efficacy, onset of symptom amelioration, or maintenance of therapeutic gains. However, Boswell and Murray (1979) found no difference between meditation, relaxation, an ‘anti-relaxation’ control and no-treatment control. Kirkland and Hollandsworth (1980) compared meditation to relaxation, skills acquisition and practice-only for test anxiety and found that meditation was more effective than practice-only, but less effective on test performance than skills acquisition. Shannahoff- Khalsa (2004) reported that a yogic meditation technique (based on kundalini yoga) was more effective than a standard relaxation procedure in the treatment of obsessive- compulsive disorder.

Krisanaprakornkit, Krisanaprakornkit, Piyavhatkul and Laopaiboon (2006) reviewed randomised controlled trials for the effectiveness of meditation in treating anxiety disorders and concluded that the small number of methodologically rigorous studies do not permit conclusions to be drawn and that more research is needed.

1.8.5.4 Cancer

A number of anecdotal studies have reported the use of meditation in the treatment of cancer (Meares, 1978, 1980, 1981; K. Pelletier, 1977) and the last few decades have seen various CAM cancer treatment programs incorporate meditation, including Tapestry, a Canadian, retreat program of support for persons living with cancer (Angen, MacRae, Simpson, & Hundleby, 2002) and The Gawler Foundation as described in section 1.9.

Speca, Carlson, Goodey and Angen (2000) carried out a randomised, wait-list controlled study to assess the effects of participation in a mindfulness meditation-based stress reduction program on mood disturbance and symptoms of stress in cancer outpatients. The program consisted of a weekly meditation group lasting one-and-a-half hours for seven weeks plus home meditation practice. There were three primary components: 1) theoretical material related to relaxation, meditation, and the body-mind connection, 2) experiential practice of meditation during the group meetings and home based practice, and 3) group process focused on problem solving related to impediments to effective practice, practical day to day applications of mindfulness, and supportive interaction between group members.

Eligible cancer patients were enrolled after giving informed consent and were randomly assigned to either an immediate treatment condition or a wait-list control condition. The 87 Chapter One: Literature Review

group was heterogeneous in type and stage of cancer. Patients completed the Profile of Mood States and the Symptoms of Stress Inventory both before and after the intervention. Ninety patients with a mean age of 51 years completed the study. Their mean pre-intervention scores on dependent measures were equivalent between groups.

After the intervention, patients in the treatment group had significantly lower scores on Total Mood Disturbance and subscales of Depression, Anxiety, Anger and Confusion and more Vigor than control subjects. The treatment group also had fewer overall Symptoms of Stress; fewer Cardiopulmonary and Gastrointestinal symptoms; less Emotional Irritability, Depression, and less Cognitive Disorganization; and fewer Habitual Patterns of Stress. Overall reduction in Total Mood Disturbance was 65%, with a 31% reduction in Symptoms of Stress. The correlation between attendance and change in stress symptoms was significant and the correlation between minutes spent in meditation and decreases in stress symptoms showed a trend toward significance Thus this program was effective in decreasing mood disturbance and stress symptoms in both male and female patients with a wide variety of cancer diagnoses, stages of illness, and ages. The improvements were maintained at six-month follow-up (Carlson, Ursuliak, Goodey, Angen, & Speca, 2001).

Carlson, Speca, Patel and Goodey (2004) reported beneficial effects of MBSR in immunity in breast and prostate cancer outpatients participating in the above study. Although there were no significant changes in the overall number of lymphocytes or cell subsets, T-cell production of IL-4 increased and IFN- decreased, whereas NK cell production of IL-10 decreased. They report that the results are consistent with a shift in immune profile from one associated with depressive symptoms to a more normal profile. Potentially beneficial hormonal changes have also been shown (see section 1.8.3.2).

As part of larger randomized clinical trial, Shapiro (2003) assessed the efficacy of MBSR on sleep complaints in women with breast cancer and concluded that the intervention to improved the quality of sleep in woman with breast cancer whose sleep complaints are due to stress. Cohen, Warneke, Fouladi, Rodriguez and Chaoul-Reich (2004) examined the effects of a seven-week Tibetan yoga (TY) program incorporating controlled breathing and visualization, mindfulness techniques, and low-impact yoga postures in patients with lymphoma. Thirty-nine patients with lymphoma who were undergoing treatment or who had concluded treatment within the past 12 months were 88 Chapter One: Literature Review

assigned to a TY group or to a wait-list control group. Patients in the wait-list control group were free to participate in the TY program after the three-month follow-up assessment. The results showed that 89% of TY participants completed at least two to three yoga sessions, and 58% completed at least five sessions. Patients in the TY group reported significantly lower sleep disturbance scores during follow-up compared with patients in the wait-list control group. There were no significant differences between groups in terms of intrusion or avoidance, state anxiety, depression, or fatigue.

Several studies have examined the effectiveness of relaxation training in reducing treatment-related symptoms and improving emotional adjustment in cancer patients (Sloman, 1995; Syrjala et al., 1995). Luebbert (2001) 2001 conducted a meta-analysis and concluded that relaxation training should be implemented into clinical routine for cancer patients in acute medical treatment. Lafferty, Downey, McCarty, Standish and Patrick (2006) reviewed clinical trials testing the effects of mind-body interventions such as meditation, guided imagery and relaxation in end-of-life care and concluded that, while methodological limitations were considerable, such interventions were largely beneficial.

Bauer-Wu et al. (2004) evaluated the effect of mindfulness meditation in a small group of cancer patients undergoing stem cell/bone marrow transplantation. They concluded that it is a feasible intervention in acutely ill, hospitalised patients and appeared to improve symptoms and coping through the experience. In a controlled study, Moscoso, Reheiser and Hann (2004) examined the effects of MBSR on anxiety, depression, anger, demoralisation and symptoms of fatigue in 34 cancer patients. There were no differences between intervention and control groups but those in the intervention group showed reduced anxiety from baseline to the post-intervention and follow-up samples. In a small uncontrolled study, Baum and Gessert (2004) also showed reduced anxiety in cancer patients taking part in an MBSR intervention. Monti (2006) found a significant decrease in symptoms of distress (as measured by the Symptoms-Checklist-90-Revised) in women with cancer who participated in a mindfulness-based art therapy intervention. In summary, limited evidence suggests that meditation has beneficial effects on adjustment to cancer and the reduction of treatment-related symptoms. However, as with other meditation research, further studies are needed.

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1.8.5.5 Other conditions

Research studies have shown beneficial effects of meditation on various conditions including fibromyalgia (Kaplan, Goldenberg, & Galvin-Nadeau, 1993; Singh, Berman, Hadhazy, & Creamer, 1998), irritable bowel syndrome (Keefer & Blanchard, 2001), psoriasis (Gaston, Crombez, Lassonde, Bernier-Buzzanga, & Hodgins, 1991; Kabat- Zinn et al., 1998), asthma (Manocha, Marks, Kenchington, Peters, & Salome, 2002; Wilson, Honsberger, Chiu, & Novey, 1999), multiple sclerosis (N. Mills & Allen, 2000), premenstrual syndrome (Goodale, Domar, & Benson, 1990), binge eating disorder (Kristeller & Hallett, 1999), tension headache (Sharma, Kumaraiah, Mishra, & Balodhi, 1990), Crohn’s disease (Hershfield, Kubryn, & Sutherland, 1993), traumatic brain injuries (Bedard et al., 2003), epilepsy (Deepak, Manchanda, & Maheshwari, 1994; Panjwani et al., 1996), HIV (Robinson, Mathews, & Witek-Janusek, 2003; D. N. Taylor, 1995). However, all the above studies suffer from methodological weaknesses and more research is needed.

1.8.6 Contraindications

In general, meditation seems to be a relatively safe intervention. Concerns may arise in those with a history of psychotic episodes or dissociative disorder, or in seriously disturbed patients, in whom meditation may trigger psychotic episodes (Craven, 1989; Walsh & Roche, 1979). Engler (1984) believes relatively intact, coherent and integrated sense of self is necessary and meditation should be avoided by those diagnosed with autistic, psychotic, borderline or narcissistic disorders. In a discussion of meditation in psychotherapy, Bogart (1991), notes that meditation “may be strongly contraindicated, especially when the therapeutic goal is to strengthen ego boundaries, release powerful emotions, or work through complex relational dynamics”(p. 408).

1.8.7 Adverse effects

Several researchers have discussed the phenomenon of meditation-related problems (Lukoff, Lu, & Turner, 1998; Perez-de-Albeniz & Holmes, 2000). Otis (1984) sent surveys to 1900 people on the TM parent organization mailing list and received 893 responses. The survey included a self-concept word list and a checklist of physical and behavioural symptoms Analysis of the results showed that dropouts reported fewer complaints than experienced meditators. In addition, adverse effects were positively

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correlated with the length of time in meditation. Long-term meditators reported the following adverse effects: antisocial behaviour, 13.5%; anxiety, 9.0%; confusion, 7.2%; depression, 8.1%; emotional stability, 4.5%; frustration, 9.0%; physical and mental tension, 8.1%; procrastination, 7.2%; restlessness, 9.0%; suspiciousness, 6.3%; tolerance of others, 4.5%; and withdrawal, 7.2%. The author concluded that the longer a person stays in TM and the more committed a person becomes to TM as a way of life, the greater is the likelihood that he or she will experience adverse effects.

D. H. Shapiro, Jr. (1992) studied 27 long-term meditators and heard reports of adverse effects including depression, relaxation-induced anxiety and panic, increases in tension, impaired reality testing, confusion, disorientation and feeling 'spaced out'. Other reported side-effects include uncomfortable kinaesthetic sensations, mild dissociation and psychosis-like symptoms (Craven, 1989); anxiety, tension, and anger (French, Smid, & Ingalls, 1975; Walsh & Roche, 1979); insomnia and psychotic manifestations with hallucinatory behaviour (Carrington, 1977); severe depression and schizophrenic breakdown (A. Lazarus, 1976); and recurrence of serious psychosomatic symptoms (Otis, 1974). The possibility that meditation might trigger strong emotional reactions is reported by Kutz (1985). Miller (1993) warns of emergence of repressed material such as memories of abuse. However, none of these studies attempted to disentangle meditation effects from premorbid personality and presenting problem and it is unclear whether certain personality types are more likely to meditate or whether meditation increases symptoms, feelings and personality traits (Morse, 1984).

Maupin (1969) stated that the deepest objection to meditation has been its tendency to produce withdrawn, serene people who are not accessible to what is actually going on in their lives. He notes that with meditation it is easy to overvalue the internal at the expense of the external. Perez de-Albeniz and Holmes (2000) comment that “it is not uncommon to encounter a meditator who claims to have found the answers when in fact he has been actively engaged in a subtle manoeuvre of avoiding the basic questions” (p. 52). Traditional teachings warn of negative outcomes of meditation and often advise that beginning meditators should approach the practice with moderation as it usually takes years of dedication to become stable in a contemplative practice.

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1.8.8 Methodological considerations

1.8.8.1 Research in meditation

Research in meditation presents considerable challenges. Meditation is a complex, multifaceted intervention which has both specific and not-so-specific effects. It is difficult to standardise, quantify, and authenticate for a given group of people (Caspi & Burleson, 2005). In addition, meditation practices vary and may produce different physiological and psychological effects, complicating comparisons across studies. A number of researchers have distinguished between types of meditation that relax and those that excite (R. J. Davidson, Goleman, & Schwartz, 1976; Fischer, 1976). Even within these categories it is suggested that similar types of meditation exert different effects, as noted by Gillani and Smith (2001). In addition, in many studies, meditation is only one part of a treatment regimen, making it difficult to isolate specific effects.

It is also likely that individuals experience meditation differently and the experience may also vary in the same person at different times. However, in a research context, it is preferable that techniques should, as much as possible be defined and standardised. It is also likely that personal characteristics and facilitator competence (both as a meditator and teacher), also affects outcomes. In cases where several therapists are delivering an intervention in one study, skills, experience and charisma may vary. This issue also leads to difficulties when comparing interventions across studies.

Results of trials of TM pose a particular problem as they are often conducted by the researchers directly involved in the organisation offering TM and who seem keen to demonstrate its benefits. Some publications have been criticized on the basis that “they commonly include broad conclusions, quotations from the teachings of the Maharishi, and uniformly positive findings” (Wenk-Sormaz, 2005, p. 43).

With some types of meditation, including mindfulness meditation, a particular complexity is the emphasis on just doing the practice with a lack of attachment to or judgement of an outcome. This contrasts dramatically with the way in which research into clinical interventions is done, with its emphasis on effects and quantifying these effects (Caspi & Burleson, 2005). Although most of these studies discussed above report statistically significant improvements in a wide range of variables, a number of

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other methodological issues arise when considering these interventions, making it difficult to draw strong conclusions about their effects.

Studies of the health effects of meditation often vary considerably in several factors. Most studies include subjects of different ages, genders, levels of education and social backgrounds. Meditation experience may also vary. Many subjects have been college students with no previous meditation experience; others have been converts to religious groups and relatively few have been highly skilled in spiritual practice. Data from relatively inexperienced practitioners may not reflect the rarely observed but important experiences that longer-term meditators are more familiar with and which are described in literature from contemplative traditions. The context in which meditation is practiced also varies as do the incentives to concentrate during experimental sessions. Some subjects have wanted success for religious or health reasons, while others may not be well motivated, something that researchers may find difficult to assess.

1.8.8.2 Control groups

Several of the studies which evaluate meditation interventions examine the effects of meditation interventions with pre-post design and no control group and therefore do not take into account passage of time, demand characteristics, placebo effects, or comparison with other treatments. Several studies have used wait-list or treatment as usual control groups. The latter studies provide better controls for demand characteristics and placebo effects, and permit comparisons with alternative treatments. However, in the studies reviewed here, treatment as usual consisted of medical approaches or unspecified mental health approaches thus complicating comparison of meditation with other specific psychological approaches. Canter (2003) believes that meditation intervention studies should use a control group that believes it is getting “meditation” on the basis that comparison with a group that expects meditation is vital to knowing how much therapeutic attention, social support and positive expectancy alone plays as a role in treatment efficacy. He also comments on the effects of group participation and notes that group participants who seeing positive results in other group members may comply more fully with treatment protocols. Thus, it is important to know if all patients are run at the same time. Seasonal effects may also be important, particularly in studies assessing conditions which are subject to seasonal variation, for example, some affective disorders.

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Many meditation studies, particularly those using TM, involve self-selected subjects and therefore do not control for possible personality differences between people who elect to learn a meditation technique and those who do not, and between people who persist with the practice and those who abandon it. Expectations of benefit are also likely to vary as those who elect to learn a technique are more likely to expect benefit than those who do not (Canter & Ernst, 2003).

1.8.8.3 Evaluation of treatment implementation

In order to evaluate the effectiveness of a treatment, data on the adequacy of administration are necessary. In the case of meditation interventions, this covers the training and monitoring of therapists and in most studies this information is not provided. In most of the more commonly studied interventions such as MBSR and TM, training is provided by the developers of the treatment program and therefore the treatment is likely to be adequately delivered. However, Baer (2003) notes that “because mindfulness-based interventions are relatively new …., descriptions of the training and supervision of the therapists conducting the mindfulness treatment might increase confidence in the findings from future studies” (p. 139)

1.8.8.4 Clinical significance

Clinical significance of findings is hard to assess when outcome measures and ways of defining therapeutic change often vary considerably between studies. In some studies information on the severity of participants’ problems before treatment is unavailable as is diagnostic re-evaluation or the extent to which they are in the normal range of functioning after the intervention. Unvalidated measures have been used in a number of studies. Bishop (2002) notes that some studies do not sufficiently differentiate between illness symptoms and markers of adaptation when assessing clinical response. Baer (2003) notes that “increased attention to the issue of clinical significance would contribute substantially to the utility of future studies” (p. 139).

1.8.8.5 Research design and sample size

Caspi and Burleson (2005) comment that in some cases, research design in meditation in studies is inappropriate and cite the example of research in the area of meditation and hypertension. They conclude that theory and practice suggest that meditation is likely to work best as part of an integrated practice of care, it is unrealistic to expect meditation 94 Chapter One: Literature Review

to show effectiveness as a stand-alone treatment in the entire range of disease severity and in all patients. In addition, some of the studies reviewed here report small sample sizes, which raises difficulty with statistical analysis of treatment effects.

1.8.8.6 Program completion

Some studies do not report dropout rates or do not define program completion and when this information is available it also varies between populations. In MBSR studies, the percentage of enrolled participants who completed treatment ranged from 60% in an inner city health clinic population (Roth & Creaser, 1997) to 97% in a population of premedical and medical students (S. L. Shapiro et al., 1998).

Kabat-Zinn and Chapman-Waldrop (1988) analysed MBSR program completion over a two-year period. During this time, 1155 patients were referred to the program. Of these patients, 75% completed an intake interview and 90% of those interviewed enrolled in the program. Of the 784 patients who enrolled, 76% completed the program, whereas 15% dropped out after beginning and 9% never attended a session. Further analyses showed that patients with stress-related problems were significantly more likely to complete the program than those with chronic pain complaints.

1.8.8.7 Compliance with and maintenance of practice

Home practice is an important part of meditation interventions but few studies assess compliance with this. In assessing the effects of MBSR in women with binge eating disorder, Kristeller and Hallett (1999) found that participants reported engaging in a mean of 15.82 hr of meditation (SD = 3.15) across the six-week intervention program. Reported practice time correlated with improvements in the outcome measures chosen.

In a study of college students, Astin (1997) found that participants reported practicing meditation for an average of 30 min per day, three-and-a-half days per week. However, in this study reported practice time and improvement on outcome measures were not significantly correlated. Reibel, Greeson, Brainard and Rosenzweig (2001) reported that 90% of their participants practiced three times per week or more and 57% practiced nearly every day, most for 15 to 30 min each time.

In a follow-up study covering intervals of six to 48 months, Kabat-Zinn, Lipworth, Burney and Sellers (1986) found that 75% of former patients reported continuing meditation practice. Of these patients, 43% meditated regularly (≥ three times weekly, 95 Chapter One: Literature Review

≥ 15 minutes each time), 19% meditated sporadically (one or two times weekly, ≥15 minutes each time, or ≥ three times weekly, ≤ 15 minutes each time), and 38% were classified as marginal meditators (< one time weekly for any length of time, or < three times weekly, <15 minutes each time).

In a three-month follow-up study of 22 patients with anxiety disorders, Kabat-Zinn et al. (Kabat-Zinn et al., 1992) found that 84% reported practicing meditation or yoga three or more times per week, for 15 to 45 minutes each time. A three-year follow-up evaluation showed that 10 (56%) still practiced meditation: four regularly, three sporadically, and three marginally (as defined above) (J. J. Miller et al., 1995). In a sample of community volunteers self-identified as “stressed out,” Williams, Kolar, Reger and Pearson (2001) reported that at three-month follow-up 81% of MBSR participants were practicing either meditation, yoga, or awareness of breathing in daily life.

A significant factor in compliance and continued practice is participant reaction to treatment and whether they feel that meditation is effective in daily life. Kabat-Zinn, Lipworth, Burney and Sellers (1986) found that the majority of those who considered themselves improved since completing MBSR attributed 50 to 100% of their improvement to the MSBR program. The majority gave ratings of eight to 10 on a 10- point rating of the importance of completing the program (1= not at all important; 10= very important), and 86% reported that they got something of lasting value from the program. Most commonly reported changes included a “new outlook on life” and improved ability to control, understand, and cope with pain and stress. In their three- year follow-up, Miller, Fletcher and Kabat-Zinn (1995), found that the majority gave ratings of seven or higher, and 89% reported that the program had lasting value for.

Astin (1997) reported a mean rating by undergraduate MBSR-participants of 9.3 on a 10-point scale to rate the extent to which the mindfulness program had “lasting value and importance”. Randolph, Caldera and Tacone (1999) reported a mean rating of 8.3 and also that 98% of their patients with chronic pain reported benefits of “lasting value”. Reibel, Greeson, Brainard and Rosenzweig (2001) reported a mean rating of at 4.90 on a five-point scale. However, an obvious limitation of these ratings is that they are only derived from participants who completed their treatment programs.

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1.8.9 Subjective assessment of meditation

The studies discussed above largely document the effects of meditation on outcomes such as psychological and medical symptoms. Other researchers have explored the subjective experience of meditation, which in recent years has centred around the concept of mindfulness. A common subjective description of meditation is that of a very relaxed but at the same time, very alert state. Other commonly described subjective states include equanimity (Goleman, 1978-79; Kornfield, 1979), detachment (D. Brown, Forte, & Rich, 1982-83), bliss (West, 1980), altered body image and ego boundaries (Kornfield, 1979, 1983) hallucinations and illusions (Kornfield, 1979, 1983), vivid dreams and nightmares (Kornfield, 1979, 1983) and extrasensory experiences (Lesh, 1970).

In some cases meditators have mystical experiences so different from ordinary experience that they are unable to be put into words, something that is well-understood in the various religious traditions (Goldstein, 1982; Kornfield, 1979, 1983; Lukoff et al., 1998). Meditators vary widely in their subjective reports. There are also variations in how rapidly people experience effects of the practice, though almost all report that experiences deepen with continued practice (Kornfield, 1979). However, the nature of the learning curve is unclear.

1.8.9.1 Meditation assessment – scales and measures

Several early research studies have involved the use of questionnaires to explore the meditation experience. Osis, Bokert and Carlson (1973) asked participants to fill out a questionnaire dealing with the meditative experience and also a questionnaire describing moods. They used factor analytic techniques to determine the major dimensions of the meditative experience and reported these as: self-transcendence and openness; mood brought to session; meaning; intensification and change of consciousness; forceful exclusion of images; general success of meditation; energized enrichment; stillness of mind; and negative experiences.

Brown and Engler (1980) carried out a validation study of the stages of mindfulness meditation in Buddhist practitioners. They interviewed practitioners and developed a questionnaire termed “A profile of meditative experience” (Maliszewski, Twemlow, Brown, & Engler, 1981) with the aim of establishing independent empirical measures of the alleged cognitive changes described in the traditional texts and in subjective reports 97 Chapter One: Literature Review

and questionnaires of contemporary practitioners. Kohr (1977-78) also used a questionnaire to assess quality of subjective meditation experience.

Piron (2001) reports the evaluation of a Meditation Depth Index (MEDI) and Meditation Depth Questionnaire (MEDEQ) which was developed after interviews with 45 experienced teachers of meditation in a number of religious (principally Eastern) traditions. Factor analysis resulted in the identification of five main domains in the questionnaire which the investigators labelled: hindrances, relaxation, personal self, transpersonal qualities and transpersonal self.

1.8.9.2 Mindfulness assessment

With the growing interest in and use of mindfulness meditation-based interventions, there has also been a need to understand the nature of mindfulness and its components and the mechanisms by which it exerts its beneficial effects and relationships with other psychological processes. In a recent consensus paper, Bishop et al. (2004) propose a two-component model of mindfulness, the first involving “the self-regulation of attention so that it is maintained on immediate experience, thereby allowing for increased recognition of mental events in the present moment” (p. 232). The second involves adopting an attitude of curiosity, openness and acceptance. Thus, mindfulness can be viewed as a process of gaining insight into the nature of one’s mind and the adoption of a de-centred perspective on thoughts and feelings so they are subjective and transient rather than objectively valid and permanent. Bishop et al. (2004) view mindfulness as a naturally occurring characteristic; a state rather than a trait; a skill that can be developed with practice and a mode of awareness not limited to meditation. It is possible that some facets of mindfulness are affected more by meditation experience than others (Baer, Smith, Hopkins, Krietemeyer, & Toney, 2006).

Baer, Smith and Allen (2004) view mindfulness as a multifaceted construct with components including observation of present-moment experience, acceptance, non- judging and non-reactivity. K. W. Brown and Ryan (2003) argue that it consists of a single factor described as attention to and awareness of the present moment. A number of recent studies have reported the development of measures assessing mindfulness (Baer et al., 2004; Bishop, 2002; K. W. Brown & Ryan, 2003). With the exception of the Freiburg Mindfulness Inventory, the measures outlined below explain mindfulness without reference to meditation. 98 Chapter One: Literature Review

1.8.9.2.1 Mindful Attention Awareness Scale

The Mindful Attention Awareness Scale (MAAS), which was developed by K. W. Brown and Ryan (2003), is a 15-item questionnaire which focuses on the presence or absence of attention to and awareness of what is occurring in the present moment. It has a single factor structure and yields a total score and uses a six-point Likert scale with ratings ranging between almost always to almost never. Respondents rate how often they have experiences of not paying attention to the present moment. Items include “It seems I am “running on automatic”, without much awareness of what I am doing”, “I could be experiencing some emotion and not be conscious of it until some time later” and I rush through activities without being really attentive to them”. The authors report a Cronbach’s alpha coefficient of 0.82 for the scale.

They also report that MAAS scores are higher in mindfulness practitioners than in matched community controls and that in a group of cancer patients who participated in an MBSR course, increases in MAAS scores were associated with decreases in mood disturbance and symptoms of stress. However, the scale has been criticized for omitting other aspects of mindfulness such as a non-judgmental, accepting attitude, dis- identification, insightful understanding, or an attitude of having no specific goals (Walach, Buchheld, Buttenmuller, Kleinknecht, & Schmidt, 2006).

1.8.9.2.2 Freiburg Mindfulness Inventory

The Freiburg Mindfulness Inventory (FMI) was developed by Buchheld, Grossman and Walach (2001) with participants in mindfulness meditation retreats. It consists of 30 items assessing non-judgemental present moment observation and openness to negative experience. Items are rated on a four-point Likert scale ranging from rarely to almost always. Items include “I am open to the experience of the present moment”, “I sense my body, whether eating, cooking, cleaning or talking” and “I pay attention to what’s behind my actions”. Cronbach’s alpha coefficients of 0.93 to 0.94 were reported.

1.8.9.2.3 Kentucky Inventory of Mindfulness Skills

The Kentucky Inventory of Mindfulness Skills (KIMS) developed by Baer, Smith and Allen (2004) consists of 39 items designed to measure four elements of mindfulness: observing, describing, acting with awareness and accepting without judgement. This scale is based largely on the conceptualization of mindfulness as applied in dialectical

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behaviour therapy (DBT) (Linehan, 1993). Items are rated on a five-point Likert scale ranging from never or very rarely true to always or almost always true. It measures a general tendency to be mindful in daily life and does not require experience in meditation. Items include “I pay attention to how my emotions affect my thoughts and behaviour”, I notice changes in my body, such as whether my breathing slows down or speeds up” and I criticize myself for having irrational or inappropriate emotions”. Cronbach’s alpha coefficients range from 0.76 to 0.91 for the four subscales.

In a recent study, Baer, Smith, Hopkins, Krietemeyer and Toney (2006) examined the facet structure of the mindfulness construct using the independently developed questionnaires described above and two others: the Cognitive and Affective Mindfulness Scale (CAMS) and the Mindfulness Questionnaire (MQ) in 613 undergraduates with little or no meditation experience. Analysis of the results showed that in general the questionnaires correlated with each other and with meditation experience and in predictable directions with other variables. Exploratory factor analysis of all questionnaires derived five facets of mindfulness: non-reactivity, observing, acting with awareness, describing and non-judging. They also report that factor structure may vary with meditation experience.

The researchers conclude that the various questionnaires may be measuring different facets of mindfulness and that different facets may correlate differently with different variables. They also point to the need to examine complex constructs at the facet level and recommend the use of subscales to measure all facets separately and reliably.

1.8.10 Possible directions for future research

Some authors have criticised the mindfulness scales discussed above for failing to cover all facets of the mindfulness construct (Walach et al., 2006). They are also not designed to assess other aspects of the meditation experience, including the physical and the spiritual. There may be a need to find ways to incorporate other concepts in the assessment of meditation by examining the psychological and phenomenological changes that occur in meditation and how these might impact in everyday life. This may help to understand processes, benefits and links to psychological symptoms and general wellbeing.

In a research context, it is likely to be desirable to standardise and define a meditation technique. This facilitates comparisons across studies and between different types of 100 Chapter One: Literature Review

interventions and may also be useful in explaining meditation to those that are learning the technique and may also be of value in assessing change over time. There may also be a need for a way of monitoring meditation which includes some way of assessing quality of meditation and personal mastery, rather than just the descriptive level of compliance. It is also possible that different people are drawn to and better suited to different types of meditation, which complicates assessment of standardised protocols. There is therefore likely to be a need for more research on major meditation practices and how those practices interact with individual characteristics (and see Section 8.2).

1.8.11 Summary of effects of meditation interventions

In recent years, meditation has become increasingly popular, both to promote wellbeing and to treat specific medical and psychological problems. In many cases, meditation used in this way is not linked to spiritual endeavour, with perhaps the most prominent examples being MBSR and TM.

Accumulating research data suggests that meditation has a number of beneficial physiological, cognitive and behavioural effects. The cognitive aspects of meditation underlie some of its clinical applications as increased awareness may bring about improved self-management through different ways of coping with problems and changes in habitual cognition and patterns of responding.

In spite of methodological difficulties with many meditation interventions, the current literature suggests that meditation-based interventions may help to alleviate some mental and physical health problems and improve psychological functioning. In the case of MBSR, the evidence is stronger for a general stress-reduction approach in non- clinical populations than in clinical populations, with the possible exception of cancer.

In the context of the growing interest in the therapeutic effects of meditation, particularly mindfulness-based types, some researchers have explored the nature of mindfulness and its components and the mechanisms by which it exerts its beneficial effects and relationships with other psychological processes. A number of assessment scales have been developed. However, there may also be a need to develop assessment tools which incorporate other concepts by examining the psychological and phenomenological changes that occur in meditation and how these might impact in everyday life. Such tools may help clinicians and researchers working in the field of

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health-related meditation assess several parameters including quality of meditation, change over time and the links between individual differences and outcomes.

1.9 The Gawler Foundation

Meditation is a key component of the active lifestyle-based cancer support programs run by The Gawler Foundation. These programs are designed to help cancer patients and their families learn how to cope with cancer. The programs are complementary to mainstream medical treatment and focus on a lifestyle program which includes relaxation, meditation, exercise, a low-fat vegetarian diet, positive thinking and drawing on effective support. The programs have been developed over a number of years and arose out of the healing experience of founder, Ian Gawler and the experiences and feedback of thousands of patients and their families. The residential program is run by Ian Gawler and qualified, experienced counselling and medical staff.

1.9.1 History

The Gawler Foundation is named after cancer survivor Ian Gawler. His story is considered in some detail here as it is inspirational for many people attending the programs. In January 1975, at the age of 24 he developed osteogenic sarcoma and had his right leg amputated. When the cancer returned in November 1975 he was given six months to live and by March 1976 he was told he was likely to be two weeks away from dying. However, with the support of his first wife, Ian traveled to the Philippines, where he received treatment from several healers. Returning to Australia, Ian continued to follow a self-help program with the key principles of good food, positive attitudes, meditation and loving support. He was pronounced cancer-free in 1978.

In 1981 the Gawlers established Australia's first active Cancer Support Group and in 1983 The Gawler Foundation was established as a non-profit, non-denominational organisation. Since that time, 12,000 people have used the cancer support services directly, and over 50,000 people have attended healthy lifestyle, disease prevention and meditation programs conducted by Ian Gawler and his staff.

The Foundation now runs several programs, including a 10-day residential program and a 12-week support program for cancer patients in which participants meet for two-and- a-half hours weekly. Some patients attend both programs. Ian Gawler is the author of

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several books including: You Can Conquer Cancer (now in a second edition), Peace of Mind, Meditation – Pure and Simple and The Creative Power of Imagery.

1.9.2 Retreat environment

The Gawler Foundation is located in a purpose-built centre in a rural setting. The residential program offers people who live in more isolated areas of Australia and other countries the opportunity to access services that might not be available in their local area. Attendance at the programs with a partner/support person is recommended where possible and group size is typically around 30 to 40 people. Research shows that interventions may also be beneficial for both partners and patients. Bultz, Speca, Brasher, Geggie and Page (2000) found that cancer patients whose partners participated in a psychosocial intervention had less mood disturbance, greater confidant support and greater marital satisfaction.

Group facilitators aim to provide a safe, supportive environment in which participants feel free to discuss issues of concern and share experiences. Due to the residential nature of the program and the often intimate nature of experiences shared, strong bonds often develop between group members. Attending a retreat may offer a break from usual responsibilities. The intensive nature of a retreat offers patients an opportunity to gain information and have new experiences quickly.

A limited number of residential programs for those suffering from chronic illness have been described in the literature, most notably the Commonweal Cancer Help Program based in California (Lerner 1992) and the five-day Canadian Tapestry Retreat Program (Angen et al., 2002; Angen, Simpson, MacRae, & Hundleby, 2003). Levine, Levenberg, Wardlaw and Moyer (2001) described a three-day retreat specifically for low-income women in Oakland California. Participants showed improvements in mood after the three days and these benefits were maintained two months after the retreat. Some research on individual components such as meditation and supportive group therapy has been done. However, there is little published research on such comprehensive programs. A comparison may be made with the Ornish studies in which very similar dietary and lifestyle changes have been shown to reverse coronary heart disease (Ornish et al., 1990; Ornish et al., 1998). Such programs are now being developed for cancer patients (Ornish, Lee, Fair, Pettengill, & Carroll, 2001) with some preliminary positive results for early prostate cancer (Ornish et al., 2005). 103 Chapter One: Literature Review

1.9.3 The program

The Gawler Foundation cancer support programs provide an active lifestyle-based self- help approach designed to improve quality and quantity of life by helping people to help themselves. They are based on the rationale that the body has a natural inherent capacity to heal itself. The principles presented in the program aim to enable the participants to activate and develop their own healing power, maximising the body’s potential to restore its natural state of balance and vitality. The programs are complementary to mainstream medical treatment.

The programs incorporate:

• relaxation, meditation and gentle yoga plus encouragement to exercise daily

• a positive state of mind

• good diet and nutrition

• overcoming obstacles to peace of mind

• finding meaning and purpose in life

• drawing on effective support

The 10-day program costs approximately AU$2500.

Follow up groups exist and participants of the 10-day program are able to attend. Counsellors are available by letter or telephone to provide specialised ongoing support.

1.9.3.1 Meditation

Participants in the residential program described here learn a technique developed by the psychiatrist Ainslie Meares (Meares, 1976a), known as stillness meditation (see Section 1.8.1.5). They are also taught healing visualisation techniques.

1.9.3.2 Diet

The dietary principles recommended as part of The Gawler Foundation programs include avoiding known problem foods (including allergenic foods) and concentrating on health-promoting foods. The diet is based upon:

• vegetables

• grains 104 Chapter One: Literature Review

• fruits

Ideally 70% of food is raw with the rest lightly cooked. There is:

• no added salt or sugar

• no refined foods

• no caffeine

• no chemical additives

The diet is:

• low in fat. All animal fats are avoided and foods with high fat content are minimised. Flaxseed oil may be included

• low to moderate in protein with vegetable protein sources most preferable then small deep sea fish, then dairy products such as yoghurt with fatty meats least preferable

• low in, or preferably alcohol free

• high in fibre

Wherever possible, chemical free produce is recommended, for example, organic vegetables. Preferred cooking methods include steaming, dry baking, wok sautéing in water and preferred utensils are stainless steel, cast iron, glass, tin, enamel and earthenware. Food Combining, in which certain combinations of foods are to be avoided, is also recommended as a way of getting the best from the diet and to making digestion easier. Other recommendations include chewing food thoroughly, eating only when necessary and preparing and eating food mindfully.

Participants in the residential program described here consume a low-fat vegetarian diet which includes large amounts of raw fruit and vegetables (whole or as juices) and minimal fats or oils. This has some similarities to the Gerson Diet (Gerson, 1978). There have been few studies of the effectiveness of such diets in the treatment of cancer. A small retrospective study using non-randomised controls suggested a prolongation of the five-year survival in self-selected malignant melanoma patients using the diet as compared to those using standard care (Hildenbrand, Hildenbrand, Bradford, & Cavin, 1995). However, the sample size was small and one third of patients were lost to follow-up. 105 Chapter One: Literature Review

1.10 Summary and conclusions

In the light of the improved cancer survival rates brought about by modern medical technology, researchers in both the medical and behavioral sciences have explored the process of adjustment to cancer. This is considered to be an on-going process in which a person learns to cope with the psychological effects of the disease, solve cancer-related problems and gain control over life-events affected by cancer.

Evidence suggests that adjustment is influenced by various disease, demographic and psychosocial factors, including personality factors, coping abilities and social support. While most cancer patients do not meet the criteria for diagnosable mental disorders, many patients do experience a variety of emotional difficulties. Because interpretations of life events vary so widely between people, much research on adjustment to cancer has centred around an individual's coping response to the cancer experience. In general, research suggests that people who remain engaged in the struggle to overcome the diagnosis of cancer and all its implications fare better, both emotionally and physically than those who respond with a helpless or hopeless attitude.

Concern about the well-documented negative psychosocial consequences of cancer, along with evidence that certain psychosocial factors may influence adjustment, has led to the development of psychological treatment programs for patients. Various models of psychosocial interventions have been developed and studied, some of which have been incorporated into the routine care of patients with cancer. As part of a general growing trend of interest in alternative medicine many cancer patients explore complementary and alternative treatments. For many cancer patients, the use of complementary treatments is a small part of their journey to regain health by embracing life and facing their cancer with courage, hope and optimism.

Lifestyle approaches and those that address the mind in order to affect the body are among these and are often of great interest to patients. This category often includes interventions which incorporate a meditation component. Accumulating research data suggests that meditation has a number of beneficial physiological, cognitive and behavioural effects. The cognitive aspects of meditation underlie some of its clinical applications as increased awareness may bring about improved self-management through different ways of coping with problems and changes in habitual cognition and patterns of responding.

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In the context of the growing interest in the therapeutic effects of meditation, there may be a need to develop assessment tools which examine the psychological and phenomenological changes that occur in meditation and how these might impact in everyday life. Such tools may help clinicians and researchers working in the field of health-related meditation assess several parameters including quality of meditation, change over time and the links between individual differences and outcomes.

Thus, the increasing popularity of non-mainstream cancer treatments raises complex ethical and practical issues for both patients and the medical profession. The medical profession can no longer afford to dismiss these practices without valid scientific evidence. At the other extreme, there is a tendency in the ‘alternative medicine’ approach to overemphasise the power of the mind to directly influence the body. This may make some patients feel guilty when they develop cancer or when the disease progresses. In view of the prevailing commitment to evidence-based medicine, it is vital to scientifically research complementary treatments and to better understand the mechanisms by which they may exert their effects. Patients and practitioners may then be acquainted with the results, which may help to put them in the position to get the best possible treatment.

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1.11 Aims of study

The preceding literature review points to the need to investigate the effectiveness of complementary and alternative interventions for cancer patients. As part of a general growing trend of interest in alternative medicine many cancer patients explore such interventions. Lifestyle oriented approaches are among the most popular and interventions that address the mind in order to affect the body are also of great interest to many patients. With their focus on meditation, the programs run by The Gawler Foundation fall into this category. While there are numerous anecdotal reports of the value of the programs the Foundation provides, there has been no independent research which has attempted to assess efficacy.

The objective of this project was to address several research questions:

• Who attends The Gawler Foundation 10-day residential program?

• How does the program impact on mood, coping, quality of life and stress hormone (salivary cortisol) levels and what factors predict change on these measures?

• To what extent are people complying with The Gawler Foundation program recommendations at three, six and 12-month follow-up?

• Are the improvements seen after program completion maintained?

• Does compliance with the recommendations of program affect mood, coping and quality of life?

It is anticipated that such research can contribute to the growing research literature on complementary and alternative interventions in cancer care. It may also help to clarify the types of patients who are attracted to and may benefit from such interventions and the mechanisms by which they may exert their effects. This can contribute towards helping patients and practitioners to make the best treatment choices.

In the current study, it was hypothesised that participation in The Gawler Foundation residential program would lead to improvements in emotional wellbeing, mental adjustment to cancer, quality of life and lower salivary cortisol levels. It was also hypothesised that, during the follow-up period, greater compliance with program recommendations would be linked to greater emotional wellbeing, more effective coping and greater quality of life.

108 Chapter One: Literature Review

In the context of the growing interest in interventions that address the mind in order to affect the body, it is proposed that a fuller exploration of the meditation experience and its’ effects is also needed. While some researchers have explored the nature of mindfulness and the mechanisms by which it exerts its beneficial effects, there may also be a need to develop assessment tools which examining more broadly the psychological and phenomenological changes that occur in meditation and how these might impact in everyday life. A further purpose of this project was therefore, to describe the development of a scale designed to assess the meditation experience and its’ effects in everyday life. It is anticipated that such a tool would be of assistance to clinicians and teachers of meditation as well as those carrying out research into the health benefits of the practice.

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2 CHAPTER TWO

Study One Methods

2.1 Introduction

The purpose of this chapter is to outline the methods used to recruit participants for the first part of the study, which involved an investigation of the 10-day residential program run by The Gawler Foundation. Details of the questionnaires and scales used in the assessment are also given.

2.2 Procedures

In order to recruit study participants, those planning to attend The Gawler Foundation 10- day residential program were sent a letter from The Foundation and Swinburne University explaining the purpose of the study and what would be required if they wished to participate (See Appendix A). Ethics approval for the study was obtained from Swinburne University of Technology Ethics Committee (See Appendix B). Participation was strictly voluntary and those that wished to be involved contacted the researchers directly to express interest. On arrival at the Foundation, program participants were again reminded about the study by the staff and referred to the principal investigator if they wished to be involved. In practice, the majority of participants agreed to be involved after arrival at the Foundation. All participants provided informed, written consent to be involved in the study (see Appendix C). All questionnaires were coded and stored in a locked filing cabinet to which only the investigators had access in keeping with the protocol outlined in the ethics approval form.

2.2.1 Pre-intervention questionnaire administration

Those that wished to be involved were given time to fill out an initial questionnaire before the commencement of the program (see Appendix D). They also completed the following

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standardised instruments: Profile of Mood States (POMS), Mini-Mental Adjustment to Cancer (Mini-MAC) and the Functional Assessment of Chronic Illness Therapy-Spirituality (FACIT-Sp) (see Appendix E and Section 2.4.2 for further details). These were then handed to the principal investigator.

2.2.2 Post-intervention questionnaire administration

At the end of the 10-day residential program, those participants that had filled in the questionnaires on the first day were approached by the researcher and given the same set of standardised questionnaires and also a questionnaire assessing their meditation experience for the duration of the program (see Appendix F). They were also given a reply paid envelope and asked to post these back to the principal investigator as soon as possible.

2.2.3 Follow-up questionnaire administration

At three, six and 12 months after completion of the intervention, participants were posted a package containing the standardised instruments, a questionnaire designed to assess both compliance with the recommendations of the programs and meditation experience and a reply paid envelope in which these could be sent back (see Appendix G). Participants were informed that if they wished to withdraw from the study they could simply return the follow-up letter and they would not receive further contact.

2.2.4 Salivary cortisol collection

Cortisol was measured in saliva obtained from experimental subjects on the first full day of the intervention (on entry in the case of control patients) and on the final day of the intervention (after 10 days for control patients). Saliva collection occurred at 8.30 am on both days (after morning meditation and before breakfast). Approximately 5 ml of saliva was collected in plastic containers and refrigerated until being taken to the laboratory. Sugar-free chewing gum was provided for anyone who had difficulty producing adequate saliva (see Appendix H).

The tubes were allowed to thaw and then centrifuged at 3000 rpm for 15 minutes at 4 degrees Celsius to separate saliva from any mucous. Samples were analysed via

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radioimmunoassay (RIA) competitive binding techniques (Yalow & Berson, 1971) using a commercially available kit provided by Diagnostic Systems Laboratory. Salivary cortisol was chosen as a sampling method as this is less invasive than venipuncture and less likely to evoke a stressful response in participants.

Steroid medications such as dexamethasone are commonly given with chemotherapy medications. This may lead to a suppression of natural secretion of cortisol. Patients who had discontinued chemotherapy within 72 hours were excluded from the saliva sample part of the survey. Other medications may have affected cortisol levels although studies suggest that these effects are marginal (Kailajarvi, Ahokoski, Virtanen, Salminen, & Irjala, 2000).

2.3 Participants

The study involved 112 patients recruited consecutively over a period of 14 months. Due to the ways in which invitations to participate in the study were issued, detailed information on response rates is not available. Participants varied according to sociodemographic characteristics, disease and treatment variables, and lifestyle factors. A more detailed description of participants is given in Chapter Three.

2.4 Materials

These material administered to participants included pre-intervention, post intervention and follow-up questionnaires as well as tubes to enable collection of salivary cortisol.

2.4.1 Questionnaires

The initial questionnaire consisted of questions covering sociodemographic/family details, including age, marital status, educational level, work details, geographical location and ethnicity. In the section on disease and treatment, questions covered disease, prognostic and past treatment details. Questions about current treatment and use of nutritional supplements were also included.

In order to assess social support, a single-item measure of social support was used. Blake and McKay (1986) found this to be a good predictor of mortality. The item reads ‘How many people do you have near you that you can readily count on for help in times of

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difficulty, such as watch over children or pets, give rides to hospital or store, or help when you are sick’. Response options are: ‘0,’ ‘1,’ ‘2–5,’ ‘6–9,’ or ‘10 or more’. Responses of 0 or 1 indicate a low tangible assistance, 2–5 or more indicate high assistance.

Questions in the lifestyle assessment section included those about moderate, hard and very hard physical activity in the last seven days. These types of questions have been used in other studies as they are relatively simple and have been validated against physiological measures of fitness (Godin, Jobin, & Bouillon, 1986). Other questions covered meditation history and details of current practice; attendance at church or other religious institution; participation in psychosocial interventions; dietary habits; and lifestyle changes.

The post-program questionnaires included a number of questions aimed at assessing the depth and quality of the meditation practice during the program along with the standardised measures given before program commencement (see Appendices E and F). The follow-up questionnaire included questions about the type of meditation and the amount of time spent practicing and also included the questions about the depth and quality of meditation practice. Other questions included those on exercise, diet, participation in psychosocial interventions and treatment in the last three months (see Appendices E and G).

2.4.2 Measures

The following measures were used to assess patients at baseline before the residential program began and after 10 days when the program ended.

2.4.2.1 Profile of Mood States (POMS)

The POMS (McNair, Lorr, & Droppelman, 1971) is a 65-item, self-administered, adjective checklist designed to measure affective states. It provides a score for total mood disturbance (TMD), ranging from -32 (best) to 200 (worst), as well as a score for each of six subscales: Tension-Anxiety, Depression-Dejection, Anger-Hostility, Vigor-Activity, Fatigue-Inertia, and Confusion-Bewilderment. The POMS is self-administering and takes about 3 to 5 minutes to complete. On all subscales except Vigor-Activity, a higher score indicates poorer outcome. It has been shown to have good internal consistency (ranging from 0.87 to 0.95 for the subscales, test–retest reliabilities that range from 0.65 to 0.74, and

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concurrent validity (McNair, Lorr, & Droppelman, 1971). It has also been shown to be sensitive to emotional changes within patient groups (Gotay & Stern, 1995).

The POMS has been widely used in intervention studies with cancer patients for measuring mood outcome (Carlson, Ursuliak, Goodey, Angen, & Speca, 2001; Edelman, Bell, & Kidman, 1999; Telch & Telch, 1986). In a study on the effects of supportive–expressive group therapy for women with metastatic breast cancer, there were significant decreases in TMD, Tension–Anxiety, Fatigue-Inertia, and Confusion-Bewilderment over the course of treatment (Spiegel, Bloom, & Yalom, 1981).

In this sample, Cronbach’s alpha for the TMD score was 0.89 and 0.85 for Tension-Anxiety, 0.88 for Depression-Dejection, 0.80 for Anger-Hostility, 0.88 for Vigor-Activity, 0.90 for Fatigue-Inertia, and 0.78 for Confusion-Bewilderment.

2.4.2.2 The Functional Assessment of Chronic Illness Therapy— Spirituality (FACIT-Sp)

The FACIT-Sp is a quality of life measure that focuses on issues of managing a chronic illness. It has been developed with an emphasis on patients’ values and concerns rather than on those issues which are of clinical concern to medical practitioners. It is self-administered and ranked on a five-point Likert scale. The FACIT-Sp is comprised of the FACT-G (general) and 12 additional items specifically related to spirituality. The FACT-G is a 27- item general scale that measures four areas of quality of life: Physical wellbeing, Social wellbeing, Emotional wellbeing, and Functional wellbeing. The FACT-G has undergone rigorous validation and been shown to have good concurrent and construct validity, internal consistency and test–retest reliability (Cella, 1997; Cella et al., 1993). It has been translated into and tested in many languages. It takes around five to 10 minutes to complete. Normative data exist for cancer patients (Brucker, Yost, Cashy, Webster, & Cella, 2005; Holzner et al., 2004).

The Spiritual wellbeing scale of the FACIT focuses on the existential aspects of spirituality and faith. It has 12 items and taps into the dimensions of religiosity (faith factor) and spirituality (meaning and peace factor) and the wording of items does not assume a belief in God. Items cover issues such as: having a reason to live, finding purpose or meaning in

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one’s life, finding strength or comfort in one’s faith, and the effect the illness has on one’s faith. The internal consistency for this measure was 0.87 (Cella, 1997) and further validity and reliability testing demonstrates that the FACIT-Sp is a psychometrically sound measure of spiritual well-being for people with cancer (Peterman, Fitchett, Brady, Hernandez, & Cella, 2002).

In this sample Cronbach’s alpha coefficients were 0.75 for the total FACIT-Sp and 0.62 for FACT-G, 0.75 for Physical wellbeing, 0.79 for Social wellbeing, 0.58 for Emotional wellbeing, 0.74 for Functional wellbeing and 0.75 for Spiritual wellbeing. Brady, Peterman, Mo, Fitchett and Cella (1999) report Cronbach’s alpha values of 0.81 for the Meaning/Peace subscale and 0.88 for the Faith subscale of the Spiritual wellbeing scale.

2.4.2.3 The Mini-Mental Adjustment to Cancer (Mini-MAC)

The Mini-MAC scale (Watson et al., 1994), is a refined and shortened version of the MAC scale (Watson et al., 1988), and measures a patient’s attitude toward dealing with cancer. Specifically, it assesses the psychological adjustment styles of Fighting Spirit, Fatalism, Helplessness-Hopelessness, Anxious Preoccupation and Cognitive Avoidance. The 29 items are ranked on a four-point Likert scale ranging from (1) ‘Definitely does not apply to me’, to (4) ‘Definitely applies to me’. Higher scores on these subscales represent higher endorsement of the attitude associated with the particular subscale. Internal consistency is sound with Cronbach alpha coefficients reported as 0.76 for Fighting Spirit, 0.87 for Helplessness-Hopelessness, 0.74 for Cognitive Avoidance, 0.62 for Fatalism and 0.88 for Anxious Preoccupation.

The mini-MAC has been validated on samples of cancer patients in several countries including Greece (Anagnostopoulos, Kolokotroni, Spanea, & Chryssochoou, 2006), Hong Kong (Ho, Fung, Chan, Watson, & Tsui, 2003), Italy (Grassi et al., 2005). In this sample Cronbach’s alphas were 0.52 for Fighting Spirit, 0.78 for Helplessness-Hopelessness, 0.62 for Fatalism, 0.81 for Cognitive Avoidance and 0.85 for Anxious Preoccupation.

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2.5 Statistical analysis

The SPSS (v13) data analysis software package was used for statistical analysis. Preliminary inspection of all data was conducted to identify out-of-range values. Participants represented as outliers on the various measures were identified by examining histograms and boxplots and a number of outliers were removed as recommended by Tabachnick and Fidell (2001). Further details of these are given in Section 3.6.1. A number of variables were checked for normality of distribution by visual inspection of histograms. Where variables were not normally distributed, appropriate non-parametric statistics were used. This is discussed further in Section 3.6.6.

In this thesis, a large number of statistical procedures are reported. This increases the chances of committing a Type I error, that is, rejecting the null hypothesis when in fact the null hypothesis is true. This is more likely to be the case when significance levels are set at the 0.05 level. Stevens (1992) recommends reducing the number of analyses conducted, increasing the alpha level to a more stringent level or applying the Bonferroni Inequality to adjust the alpha level according to the number of analyses conducted. In the present study, it was considered important to interpret all results with statistical significance used as an additional descriptive tool, rather than as a water-tight criterion. Thus, Bonferroni adjustments for multiple comparisons were not made. The actual statistical significance levels are provided in the results tables.

Pearson product moment correlation coefficients were used to examine relationships between normally distributed continuous variables and measures and Spearman Rank Order correlation coefficients were used for non-normally distributed measures. Where these correlation coefficients were calculated, only those relationships with a correlation coefficient greater than 0.30 were considered relevant (Tabachnick & Fidell, 2001).

Chapter Five of the thesis covers the factor analysis of a questionnaire designed to assess the meditation experience. Factor analysis is the term given to a number of statistical techniques, the overall aim of which is to reduce a large number to interrelated variables to a small number of factors that are thought to reflect underlying processes that have created correlations among the variables. In psychology, factor analysis is commonly used in development and evaluation of objective tests or scales as it is useful in determining the 116 Chapter Two: Study One Methods

number of variables that underlie a set of scale items (DeVellis, 1991). For a full discussion of factor analysis see Section 5.2.5.1.

When assessing the psychometric properties of a scale it is necessary to consider both reliability and validity. The most commonly used measure of reliability is Cronbach’s (1951) coefficient alpha with higher levels indicating higher levels of internal consistency. For a full discussion of reliability see Section 5.2.6. Assessment of validity involves examining whether the scale measures what it is supposed to measure. A scale’s construct validity is assessed by exploring the pattern of correlations between the new scale and other existing measures, both related and unrelated. The construct validity of a scale is supported if the correlations are as predicted. For a full discussion of reliability see Section 5.2.7.

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3 CHAPTER THREE

Characteristics of study participants

3.1 Introduction

The aim of this part of the study is to address the research question: Who attends the Gawler Foundation 10-day residential program? Results are broken down into the following sections: demographic characteristics, disease and treatment characteristics, lifestyle factors and baseline measures of mood, coping, quality of life (QOL) and stress hormone (salivary cortisol) levels. It also includes an exploration of the relationships between characteristics of study participants and baseline measures of mood, coping and QOL.

The literature reviewed in Chapter One suggests that those who explore CAM cancer treatments are likely to be of female gender, younger age and higher level of education. Anecdotally, there is reason to believe that those who attend the residential program at the Gawler Foundation have more severe disease (and therefore a relatively long time since diagnosis and greater physical impairment). They may also therefore have tried other treatments, with varying degrees of success. Many of the participants come to the programs after reading Ian Gawler’s books which describe in some detail the Foundation’s approach to dealing with cancer. These books describe lifestyle changes such as dietary modification and the practice of meditation and it is hypothesised that the participants would have attempted some of these changes and that they may be well- motivated, likely to use active coping strategies and be interested in issues of meaning of life and spirituality.

3.2 Demographic characteristics

The total number of participants at baseline was 112. Of these 75 (67%) were female and 37 (33%) were male. The overall mean age of participants was 51.3 years (10.32) with a mean age for women of 50.4 years (9.87) and 53.2 (11.07) for men (see Table 3-1). For women, the greatest number of participants were aged between 41 and 50 years (38.7%) and for men, between 51 and 60 years (40.5%) (see Table 3-2). 118 Chapter Three: Characteristics of study participants

Table 3-1 Age of participants Gender N Mean age/years Std. Deviation Median Minimum Maximum

Female 75 50.4 9.87 50 24 78

Male 37 53.2 11.07 55 23 73

Total 112 51.3 10.32 52 23 78

Table 3-2 Age ranges of participants Age range/years Females Males Total

N Percent N Percent N Percent

<30 2 2.6 2 5.4 4 3.6

31-40 7 9.3 5 6.7 12 10.7

41-50 29 38.7 3 8.1 32 28.6

51-60 27 36.0 15 40.5 42 37.5

61-70 8 10.7 11 29.7 19 17.0

>71 2 2.6 1 2.7 3 2.7

Total 75 100.0 37 100.0 112 100.0

In terms of relationship status, 83 (74.8%) were classified as either married or de facto while 28 (25.2%) were classified as divorced, separated, widowed or single (See Table 3-3). When asked about the number of people in the household, 51 (45.5%) reported living with a spouse or partner, 45 (40.1%) reported living within a family while 10 (8.9%) reported living alone.

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Table 3-3 Relationship status of participants Relationship status N Percentage

De facto 14 12.5

Divorced 11 9.8

Married 69 61.6

Separated 2 1.8

Single 12 10.7

Unknown 1 0.9

Widowed 3 2.7

Total 112 100.0

The majority (71:63.4%) of participants had tertiary (or further) qualifications while 39 (34.8%) participants had only completed secondary education (see Table 3-4).

Table 3-4 Education level of participants Education level N Percentage

Primary 1 0.9

Secondary 39 34.8

Tertiary 49 43.8

Post-graduate 22 19.6

Unknown 1 0.9

Total 112 100.0

120 Chapter Three: Characteristics of study participants

When asked about employment status, 75 (67%) reported being in employment while 32 (28.6%) were retired. Those in full time employment made up 43.8% of the entire sample while those in part-time employment made up 19.6% of the entire sample (see Table 3-5).

Table 3-5 Employment status of participants Employment status N Percentage

Working 75 67.0

On leave 1 0.9

Semi-retired 1 0.9

Retired 32 28.6

Unknown 3 2.7

Total 112 100.0

Australia was the country of residence for 81 (72%) participants while for 20 (17.9%) participants this was New Zealand. Only one participant (an ethnic Australian living in China) was resident overseas. Sixty nine (61.6%) participants gave their ethnic origin as Australian, 21 (18.8%) as New Zealander and 22 (19.6%) were from other ethnic backgrounds. English was the main language spoken at home for 108 (96.4%) of participants. Table 3-6 gives information on the states of residence of the participants.

This data suggests that cultural differences and communication problems that may arise due to misunderstandings and language difficulties were likely to have minimal impact. Common cultural background may be important as some research suggests that there are differences in some variables, for example, coping in different ethnic populations (Grassi, Travado, Moncayo, Sabato, & Rossi, 2004; Ho, Fung, Chan, Watson, & Tsui, 2003). Thus, the relative cultural homogeneity of the sample minimises the impact of ethnic background-related differences in coping within the group. However, it may also limit the extent to which any conclusions can be generalised to other populations.

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Table 3-6 State and country of residence of participants State/country N Percentage

ACT 2 1.8

NSW 21 18.8

NT 4 3.6

QLD 22 19.6

SA 4 3.6

TAS 8 7.1

VIC 24 21.4

WA 6 5.4

China 1 0.9

NZ 20 17.9

Total 112 100.0

The data presented here support that from other studies which suggest that CAM use is predicted by several variables including younger age (Downer et al., 1994; Eisenberg et al., 1998; Nagel, Hoyer, & Katenkamp, 2004), female gender (Berglund, Bolund, Gustafsson, & Sjoden, 1997; Downer et al., 1994; Eisenberg et al., 1998) and higher level of education (Eisenberg et al., 1998; Lerner & Kennedy, 1992; MacLennan, Wilson, & Taylor, 1996). Eisenberg et al. (1998) reports that rates of CAM use in those aged 35 to 49 years (50.1%) were higher than in those either older (39.1%) or younger (41.8%). As the risk of cancer increases with age, incidence rates are expected to affect the age of those participating in support groups and thus in this study.

According to the Australian Institute of Health and Welfare (2004) the age-specific incidence rate in 2001 for all cancers combined (excluding non-melanoma skin cancers) was 95.6 per 100,000 population for 15 to 44 year-olds; 700.5 per 100,000 population for 45 to 64 year-olds; and 2,190.2 per 100,000 population for people aged 65 years and over. Thus, cancer is most prevalent in those over 65 years. However, in this study, 27

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(24.1% ) participants were between the ages of 15 to 44 years and 76 (67.9%) participants were between the ages of 45-64 years while seven (6.3%) were over 65 years, supporting the relatively young age of the study participants when compared to incidence rates in the general population. For the overall population in 2001, the average age of first diagnosis was 65 years and the median age was 68 years (Australian Institute of Health and Welfare 2004). In the present study, the median age was 52 years (50 years for women and 55 years for men).

3.2.1 Comparisons with other studies

As the participants in the study were self-selected and did not include all those who participated in The Gawler Foundation programs, comparisons with populations who agreed to participate in other psychosocial interventions may be useful. Comparisons of demographic characteristics of participants with those in other studies are given in Table 3-7. It can be seen that the relative proportion of men and women participating in the current study is broadly similar to that of other psychosocial intervention studies (with the obvious exceptions of those which only recruited participants of one gender). Mean and median ages of participants in this study are similar to those in other studies.

In a well-known trial of supportive-expressive therapy in metastatic breast cancer patients, Spiegel, Bloom and Yalom (1981) reported the mean age of participants as 54 years, 63.5% were married and mean time from diagnosis was 61 months. In an Australian trial of cognitive-behavioural therapy in breast cancer patients, Edelman (1999) reported a mean age of 50 years, with 47% of participants were aged between 41 and 50 years (compared with 38.7% of women in the current study and 27% of women were aged between 51 and 60 years (compared to 36.0% in the current study). In a randomised trial of a mindfulness meditation program, mean age was 51 years, 79% of participants were female and 21% male (Speca, Carlson, Goodey, & Angen, 2000).

In the present study, 83 (74.8%) participants were currently in either a marriage or de facto relationship, while 28 (25.2%) participants were either divorced, separated, widowed or single. This is similar to other studies, particularly those that are more recent and include those in de facto relationships. Only 10 (8.9%) participants lived alone. Level of education, ethnic origin and employment status are also similar to other studies. This suggests that in terms of demographic characteristics, the population in the current study is fairly typical of those in other studies. 123 Chapter Three: Characteristics of study participants

Table 3-7 Comparisons of sociodemographic characteristics of participants in the current study with those of other studies Current study Fawzy et al. Spiegel et Spiegel et al. Speca et al. Edelman et Moynihan et Lev et al. Butow et al. (1993) al. (1981) (1999) (2000) al. (1999) al. (1998) (1999) (1999) Gender 67% female, 33% 53% female, 100% 100% female 79% 100% 100% male 65% female 62% male, 38% male 47% male female female, female female 21% male Age Mean 51.3 Mean 42 Mean 54 Mean 52 Mean 51 Mean 50 15% over 40 Mean 58 Mean 55 Marital 74.8% married or de 64% married 63.5% 67% married 67% 63% married 66% 79% married/de status facto married married married facto Ethnic 93% 80% white 98% Australian origin European American Educational 63.4% at least 75% college 40% college Well 55% college 22% status tertiary education education educated or post- undergraduate or graduate post-graduate Employment 42.9% full time, 41% 61% not 86% status 31.3% not working employed working employed 67% not employed Cancer type Mixed Melanoma Breast Breast Mixed Breast Testicular Mixed Melanoma Time from Mean 26.9 months Mean 61 Mean 8 All stages Metastatic diagnosis Median 15 months months months Current No 47.3% Yes No 85% Yes 26% no treatment therapy 38.4% 14% Church Yes 21.4% Yes 59%

124 Chapter Three: Characteristics of study participants

3.3 Disease characteristics

The most common type of cancer among participants was breast cancer with 31 women (27.7% of participants) having been diagnosed with this disease. Colorectal cancer was reported in 12 (10.7%) cases and prostate cancer in 10 (8.9%) cases (see Table 3-8). Among women, 43 (57.3%) reported having been diagnosed with metastatic disease and among men the number was 25 (67.6%). Overall, the number of those reporting metastatic disease was 68 (60.7%) (see Table 3-9).

Table 3-8 Types of cancer reported by participants Type of cancer N Percentage

Breast 31 27.7

Colorectal 12 10.7

Prostate 10 8.9

Other GI tract 4 3.6

Ovarian 4 3.6

Lung 4 3.6

Melanoma 7 6.2

Kidney 5 4.5

Lymphomas 8 7.1

Testicular 3 2.7

Brain 3 2.7

Other 21 18.8

Total 112 100.0

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Table 3-9 Participants with metastatic and non-metastatic disease Females Males Combined

N Percent N Percent N Percent

Metastatic 43 57.3 25 67.6 68 60.7

Non-metastatic 26 34.7 10 27.0 36 32.1

Unknown 6 8.0 2 5.4 8 7.1

Total 75 100.0 37 100.0 112 100.0

It should be pointed out that discussion of all medical data is limited by the self- reported nature of the data and the lack of medical confirmation. Phillips et al. (2005) validated self-report data against medical records for 895 Australian breast cancer patients and concluded that agreement between the two data sources was very high for questions about type of treatment and recurrence. However, agreement between the two data sources regarding stage at diagnosis was 62%, with discrepancies mostly due to women with loco-regional disease incorrectly reporting distant spread.

The incidence rates of the different types of cancer reported by those in the current study broadly reflect those of the Australian population with colorectal cancer being the most commonly diagnosed cancer overall in 2001, with prostate cancer the most common among men and breast cancer the most common among women (Australian Institute of Health and Welfare 2004). Among the general population colorectal, breast, prostate, melanoma and lung cancers accounted for 60% of registrable cancers in 2001. In the current study, these cancers account for 57.1% of those reported by participants.

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Table 3-10 Stage of cancer at diagnosis Stage of cancer at diagnosis N Percentage

1 3 2.7

2 16 14.3

3 25 22.3

4 14 12.5

Unknown 54 48.2

Total 112 100.0

Of 58 participants who provided information on stage of cancer at diagnosis 39 (67.2%) reported this being stage III or IV (see Table 3-10). In the study mentioned above, Phillips et al. (2005) reported that 81% of breast cancer patients in their sample had early stage cancer at diagnosis. Over half (60.7%) of the sample reported the presence of metastases.

3.3.1 Time from diagnosis to attendance at The Gawler Foundation

Data relating to the time from diagnosis to attendance at The Gawler Foundation programs are given in Table 3-11 and Table 3-12. The median time from diagnosis to attendance at the Gawler Foundation was 15 months, with 49.1% of people diagnosed less than a year previously.

Table 3-11 Time in months from diagnosis to attendance at The Gawler Foundation Mean Std. Deviation Median Minimum Maximum

Time in months 26.94 36.49 15 1 216

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Table 3-12 Time period from diagnosis to attendance at The Gawler Foundation Time in months N Percentage

1-6 33 29.5

7-12 22 19.6

13-18 5 4.5

19-24 13 11.6

25-30 8 7.1

31-36 10 8.9

37-42 3 2.7

43-48 3 2.7

55-60 1 0.9

>61 13 11.6

unknown 1 0.9

Total 112 100.0

3.3.2 Treatment received

The most common treatments for cancer are surgery, radiotherapy, chemotherapy and hormone therapy. In the current study, of 112 patients only seven (6.3%) reported having had no conventional treatment. Data relating to the number of treatments received by patients are given in Table 3-13. Seventy-eight (69.6%) participants reported receiving two or more treatments (see Table 3-14). When asked about current treatment 43 (38.4%) participants reported still undergoing conventional treatment while 53 (47.3%) patients were not.

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Table 3-13 Treatment received by participants Treatment N Percentage

Chemotherapy 73 65.2

Surgery 68 60.7

Radiotherapy 38 33.9

Hormone therapy 24 21.4

Other treatments 14 12.5

Table 3-14 Number of treatments received Number of different treatments received N Percentage

1 34 30.4

2 38 33.9

3 23 20.5

4 10 8.9

None 7 6.3

Total 112 100.0

It may be concluded that most of the patients in this study used complementary approaches along with mainstream treatments rather than in place of these. This is consistent with the results of other studies. McGinnis (1991) reported that only 5% of patients abandoned standard therapy when using complementary and alternative medicine. Lerner and Kennedy (1992) reported that 80% of patients continued to see their physician when using alternative treatments while Cassileth, Lusk, Strauss and Bodenheimer (1984) reported only 60% of participants using simultaneous alternative and conventional treatment. 129 Chapter Three: Characteristics of study participants

These data may be cautiously interpreted to suggest that those with more severe disease who have tried conventional treatment are more likely to attend The Gawler Foundation programs. This supports findings from other studies which suggest that patients with longer duration and progression of cancer use CAM more often than patients with primary and localised cancer (Downer et al., 1994; Lerner & Kennedy, 1992; McGinnis, 1991; Sollner, Zingg-Schir, Rumpold, & Fritsch, 1997). Cassileth, Lusk, Strauss and Bodenheimer (1984) found that 43% of patients began using alternative treatments when metastases occurred while 42% began use when disease was not evident.

3.3.3 Nutritional supplements

The majority of study participants (87:77.7%) reported using nutritional supplements. As in other studies, those most commonly used were multivitamin and mineral supplements and vitamins E and C, for example, Newman et al. (1998). The high level of use is consistent with the obvious interest in complementary approaches in those who attend The Gawler Foundation programs. Other researchers have reported similar or slightly lower use rates. However, comparisons between studies are complicated by definition issues. Some studies only count high dose vitamins while others include one a day multivitamins.

Newman et al. (1998) found that among women in a clinical trial to prevent breast cancer recurrence 80.9% reported use of dietary supplements. In a survey of 225 cancer patients, Lis, Cambron, Grutsch, Granick and Gupta (2006) found that 73% had used dietary supplements in the past month and that self-reported QOL was better among supplement users. Verhoef, Hagen, Pelletier and Forsyth (1999) found that 65% of brain tumour patients had used herbal medicine while Nagel, Hoyer and Katenkamp (2004) found that 64.2% of breast cancer patients used high dose vitamins. Other studies report lower use rates (Burstein, Gelber, Guadagnoli, & Weeks, 1999; Eisenberg et al., 1993; Maunsell, Drolet, Brisson, Robert, & Deschenes, 2002; Von Gruenigen et al., 2001). In a study of Australian breast cancer patients, Salminen, Bishop, Poussa, Drummond and Salminen (2004) found that 50% of patients consumed dietary supplements, with 42% using vitamin and mineral supplements and 28% consuming other dietary supplements, including natural products and probiotics.

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3.4 Lifestyle factors

Lifestyle factors assessed as part of the study included exercise, attendance at religious institutions, social support, meditation experience, participation in psychosocial interventions, diet and lifestyle changes.

3.4.1 Social support

Respondents answered the single item question about social support described in Section 2.7, which asked about people to be counted on in times of need. Responses of 0 or 1 indicate a low level of support, 2–5 or more indicate a high level of support. In the current study 92 (82.1%) participants reported a high level of support while 15 (13.4%) reported a low level (see Table 3-15). In a recent study, Sultan et al. (2004) assessed the level of instrumental support in 636 colorectal cancer patients (98% men) and found that 63.8% had instrumental support and of those 79.6% reported this as adequate. As the large majority of participants have good social support it is possible that they are successful help seekers and are well able to support from all sources (Bauman, Gervey, & Siegel, 1992).

Table 3-15 Social support received by participants Social support (number of people N Percentage to be counted on in times of need)

0 1 0.9

1 14 12.5

2 to 5 53 47.3

6 to 9 23 20.5

10 or more 16 14.3

Unknown 5 4.5

Total 112 100.0

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3.4.2 Exercise

Participants responded to questions about their exercise in the last seven days. Examples of moderate exercise include brisk walking, callisthenic exercises, sweeping and mopping and golf. Examples of hard exercise include heavy carpentry, tennis doubles and scrubbing floors while very hard exercise includes such activities as very hard physical labour, jogging, aerobics and swimming (see Table 3-16).

Mean number of hours of moderate exercise was 8.0 (6.37), 5.1(3.70) for hard exercise and 4.8 (3.87) for very hard exercise. However, only 31 (27.7%) and 15 (13.4%) participants reported engaging in hard or very hard exercise respectively.

Cancer diagnosis and treatment are likely to be associated with reduced physical functioning, increased fatigue and often, weight loss or gain. This is likely to affect the ability to exercise. Cancer patients often reduce exercise during treatment and then increase again after this ceases (Courneya & Friedenreich, 1997; Courneya, Mackey, & Jones, 2000). Participants were also asked if the level of exercise reported in the questionnaires was typical for them. In this sample the level of exercise was typical for 35 (31.3%) of participants (see Table 3-18).

As with other variables, comparisons between studies are complicated by variations in methods of measurement. In a study of men and women diagnosed with early stage breast and prostate cancers, Demark-Wahnefried, Peterson, McBride, Lipkus and Clipp (2000) reported that 58% of respondents exercised regularly (30 mins on three or more days a week). Pinto, Trunzo, Reiss and Shiu (2002) explored exercise participation in 69 women (mean age 57.2) with early stage breast cancer. Quarterly assessments over a 12-month period indicated that women did not increase their exercise participation over time and 58% of survivors did not exercise regularly. It is likely that exercise is a marker for a healthy lifestyle generally and MacLennan, Wilson and Taylor (1996) found that exercise in last two weeks predicted CAM use.

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Table 3-16 Hours of exercise reported by participants Exercise Moderate hours Hard hours Very hard hours

Number who answered 87 31 15

Non-respondents 25 81 97

Mean 8.0 5.1 4.8

Std. Deviation 6.37 3.70 3.87

Median 7 5 4

Minimum 1.0 1.0 1.0

Maximum 35.0 20.0 16.0

In keeping with the approach of other studies (Courneya & Friedenreich, 1997; Godin, Jobin, & Bouillon, 1986), a total exercise score is calculated by weighting each frequency by its estimated intensity and then summing as follows (3 x moderate hours) + (5 x hard hours) + (9 x very hard hours). Details of these scores are reported in Table 3-17.

Table 3-17 Exercise scores Total exercise score

Mean 31.70

Median 19.75

Std. Deviation 38.14

Minimum 0

Maximum 208.00

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Table 3-18 Typical level of exercise of participants Typical level of exercise N Percentage

Less 36 32.1

More 22 19.6

Same 35 31.3

Unknown 19 17.0

Total 112 100.0

3.4.3 Attendance at religious institutions

In this sample, 24 (21.4%) participants reported at least sometimes attending religious institutions, for example, church, mosque, synagogue while 70 (62.5%) participants reported no attendance.

3.4.4 Meditation practice

In response to questions about meditation, 84 (75.0%) participants reported having a current practice. Details of time spent meditating are given in Table 3-19. The mean time spent meditation was 469.68 (SD=329.43) minutes per week and the median time was 420 minutes per week. The minimum time spent in meditation was 40 minutes per week and the maximum time reported was 1680 minutes per week.

Twenty-six (23.3%) participants meditated daily for between 11 and 60 minutes and 31 (27.7%) meditated for more than 60 minutes daily. Only 26 (23.2%) meditated before their cancer diagnosis. When asked to self-rate their proficiency at meditation on a scale of 1 to 10, 39 (34.8%) gave a rating between three and five (see Table 3-20). When asked if they were aware of the benefits of meditation in their everyday lives, 57 (67.9%) of those currently meditating responded positively while 13 (11.6%) participants were not aware of the benefits in their everyday lives.

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Table 3-19 Time spent meditating How often N Percentage

< twice weekly 5 4.5

>twice weekly

11-60 minutes daily 26 23.2

>60 minutes daily 31 27.7

Missing 38 33.9

Total 112 100.0

Table 3-20 Self-rated proficiency at meditation Self-rated proficiency N Percentage

1 7 6.3

2 7 6.3

3 15 13.4

4 9 8.0

5 15 13.4

6 9 8.0

7 5 4.5

8 5 4.5

10 1 0.9

Missing 39 34.8

Total 112 100.0

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The number of participants in this study reporting a regular meditation practice is likely to be relatively high for a cancer patient population, particularly as 27.7% of participants meditated for more than 60 minutes daily. McGinnis (1991) reported that 50% of patients used some form of psychic therapy including mental imagery while Cassileth (1986) found 16% of patients used mental imagery for anti-tumour effect. Salminen, Bishop, Poussa, Drummond and Salminen (2004) reported that among Australian breast cancer patients 21% used meditation, 10% visualization and 12% used spiritual and church healing.

However, only 23.2% of participants in the current study had meditated before their cancer diagnosis, suggesting that the disease is an important factor in motivation to meditate. However, as 67.9% of those currently meditating responded positively to a question about the benefits in everyday life, this is also likely to be a motivating factor.

3.4.5 Psychosocial interventions

When asked about participation in psychosocial interventions such as educational sessions, group support sessions, individual counselling, 57 (50.9%) participants reported participating while 50 (44.6%) people did not. The most common interventions were local support groups and counselling.

Many mainstream medical services offer psychosocial interventions such as educational sessions and support groups and these are increasingly seen as important in cancer care in the medical profession. It might be expected that many of those patients motivated to attend The Gawler Foundation would also explore other psychosocial interventions. Some research has shown that those who participate in support groups are also likely to use conventional professional services. Bauman, Gervey and Siegel (1992) found that 36% of those participating in a psychosocial intervention had sought other psychosocial support.

3.4.6 Diet before attendance at The Gawler Foundation program

A low-fat vegetarian diet incorporating a lot of fresh fruit and vegetables (often in the form of juices) is an important part of The Gawler Foundation programs. Avoidance of processed foods, alcohol and caffeine is also recommended. When asked about their diet before attendance at the Gawler Foundation programs, 65.2% of participants

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reported avoiding cooking techniques such as smoking and barbecuing every day, 55.4% included fresh vegetable and fruit juices every day, 38.4% avoided meat every day and 42.9% avoided alcohol every day (see Table 3-21).

Table 3-21 Diet before attendance at The Gawler Foundation program Dietary measure Every Most Few No % day days days days unknown

Avoid foods high in fat 49.1 22.3 5.4 0.9 22.3

Avoid foods high in sugar 47.3 21.4 5.4 2.7 23.2

Avoid foods high in salt 53.6 16.1 3.6 3.6 23.2

Avoid meat 38.4 24.1 10.7 3.6 23.2

Avoid alcohol 42.9 20.5 10.7 2.7 23.2

Avoid caffeine 51.8 16.1 5.4 3.6 23.2

Avoid cooking techniques such as 65.2 6.3 3.6 0.9 24.1 smoking and barbecuing

Avoid processed foods containing 50.9 19.6 2.7 3.6 23.2 sweeteners and additives

Include fresh vegetable and fruit 55.4 14.3 4.5 2.7 22.3 juices

Include high fibre foods 53.6 17.9 4.5 0.9 23.2

Include organic foods 35.7 13.4 15.2 11.6 24.1

Participants were divided into low compliance and high compliance categories. Those who followed dietary recommendations every day or on most days were labelled high compliers while those who followed recommendations on few days or no days were labelled low compliers. Of the 84 participants who answered the questions in the diet section 81 (96.4%) of these scored in the high compliance category. 137 Chapter Three: Characteristics of study participants

It seems likely that many of the dietary measures reported by those in the study may be relatively recent practices with 86.6% reporting making changes in diet since diagnosis. As with meditation, it seems likely that disease is a major factor driving dietary change. This is consistent with the results of other studies (Maskarinec, Murphy, Shumay, & Kakai, 2001; Patterson et al., 2003). Maunsell, Drolet, Brisson, Robert and Deschenes (2002) assessed lifestyle changes in breast cancer patients 12 months after diagnosis and found that 77% had decreased red meat consumption and 72% had increased intake of fruit and vegetables. Being younger and more distressed initially increased the likelihood of making changes.

Salminen, Bishop, Poussa, Drummond and Salminen (2004) reported that 54% of breast cancer patients in Australia considered diet a factor contributing to their disease and 39% of patients reported changing their dietary habits since diagnosis. However, older age (over 65) significantly decreased the likelihood of change while higher education and longer time since diagnosis increased the likelihood. The most common dietary changes included a reduction (defined as avoiding or excluding items from the normal diet) in the consumption of fat and oils, red meat, sugar, and increased consumption of fruits and vegetables. In all, 13% of patients reported avoidance of meat, 14% reported increasing vegetable consumption, 37% reported having cut down fats and fried foods in their diet and 17% reported reducing their use of sugar.

3.4.7 Lifestyle changes

The majority of participants (96.4%) reported making at least one lifestyle change in response to a diagnosis of cancer. The greatest changes were in change of diet (86.6%) practicing meditation (68.8%) and change in amount of time spent at work (69.6%) (see Table 3-22).

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Table 3-22 Lifestyle changes since diagnosis Behaviour Percentage reporting a change

Stopped smoking 9.8

Stopped drinking excessively 30.4

Changed level of physical activity 59.8

Changed diet 86.6

Now practice regular meditation 68.8

Changed amount of time spent with family 56.3

Changed amount of time spent at work 69.6

The lifestyle changes seen in the current study are consistent with several other studies suggesting that cancer patients and survivors often report changes in the direction of adopting healthier lifestyle behaviours, including reduced tobacco use (Gritz et al., 1993), increased physical activity and exercise and consumption of a healthier diet (Chlebowski et al., 1993; Dimeo et al., 1996; Satia et al., 2004). Blanchard et al. (2003) surveyed 352 adult cancer survivors and found that 46% had stopped smoking and 47% had improved their dietary habits. Miller et al. (1998) found the most common changes in lifestyles in Australian cancer patients were dietary changes (30%), using meditation/relaxation techniques ( 28%) and using multivitamins (25%)

Andrykowski, Brady and Hunt (1993) view cancer diagnosis and treatment as representing a ‘teachable moment’, that is, one characterised by a propensity to critically examine aspects of one’s life and behaviour and the motivation to change these to enhance mental and physical wellbeing. This is in keeping with the approach of The Gawler Foundation and such programs might be expected to attract those who hold this view. Mullens, McCaul, Erickson and Sandgren (2004) investigated lifestyle changes in colorectal cancer survivors and found that 45.7% had increased the level of exercise, 51.9% had changed their diet, 25.9% had lost weight, 92.9% had quit smoking and 28.4% had used CAM. Changing diet and using CAM were most important things participants thought they could do.

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Demark-Wahnefried et al. (2000) examined 895 breast and prostate cancer patients and found that 55% of respondents ate fewer than five daily servings of fruit and vegetables, 69% followed a low-fat diet and 58% routinely participated in exercise. This represents a high prevalence of health behaviours among the respondents. McBride et al. (2000) found lower psychological impact of cancer diagnosis in those with healthier lifestyles.

However, analysis of results is limited by the nature of patient-completed questionnaires and their interpretation. Self-reported changes measure only the reported behaviour changes and may not perfectly match actual behaviour changes.

3.5 Baseline measures

Baseline measures included Profile of Mood States, Mini-Mental Adjustment to Cancer, Functional Assessment of Chronic Illness Therapy and salivary cortisol.

3.5.1 Profile of Mood States (POMS) at baseline

Results from analysis of the POMS at baseline are given in Table 3-23. Table 3-24 shows comparison of mean (SD) POMS Total Mood Disturbance (TMD) and subscale values in the current study with those of other studies in cancer patients. Table 3-25 gives values of POMS TMD from a range of other studies of cancer patients.

Table 3-23 POMS scores at baseline N Mean Std. Median Minimum Maximum Deviation TMD 102 14.35 26.48 7.50 -33 137

Tension-Anxiety 103 5.85 5.86 5.00 -4 25

Depression-Dejection 107 8.03 7.80 5.00 0 46

Anger-Hostility 107 7.87 6.09 7.00 0 27

Vigor-Activity 109 17.57 6.08 17.00 3 31

Fatigue-Inertia 108 8.11 5.85 8.00 0 28

Confusion- 105 3.36 4.66 2.00 -4 22 Bewilderment

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Table 3-24 Comparisons of POMS TMD scores and subscale scores in the current study with those in other studies Study Population Tension- Depression- Anger- Vigor- Fatigue- Confusion- TMD Anxiety Dejection Hostility Activity Inertia Bewilderment Mean (SD) Mean (SD) Mean (SD) Mean (SD) Mean (SD) Mean (SD) Mean (SD) Current study Mixed cancer patients 5.85 (5.86) 8.03 (7.80) 7.87 (6.09) 17.57 (6.08) 8.11 (5.85) 3.36 (4.66) 14.35 (26.48) Fawzy et al. (1990) Malignant melanoma Intervention 11.1 10.13 (11.46) 9.66 (9.51) 15.21 (7.83) 9.38 (7.89) 7.00 (5.49) 32.06 group (8.39) Speca et al. (2000) Mixed cancer patients. Treatment 9.7 (6.6) 14.1 (10.5) 9.6 (6.8) -13.5 (6.0) 11.7 (6.5) 5.5 (5.1) 37.1 (32.7) group Lev et al. (1999) Mixed cancer patients. Age 58 or 4.9 3.3 2.7 5.7 2.5 32.7 older Lev et al. (1999) Mixed cancer patients. Age 57 or 7.1 5.5 5.5 7.4 3.7 42.9 younger Cunningham and Mixed cancer patients 8.6 13.8 33.5 Tocco (1989) Levine et al. (2001) Breast cancer patients 13.6 (6.7) 15.3 (12) 10.7 (8.6) 15.23 (7.6) 2.9 (6.77) 10.6 (5.65) 47.95 (34.7) Chujo et al. (2004) Japanese breast cancer patients with 10.85 13.73 (9.89) 9.08 (7.28) 11.58 (5.58) 9.00 (6.59 9.24 (5.41) 40.73 first recurrence (5.84) (34.77) Boesen et al. Malignant melanoma patients 4.2 (5.8) 5.2 (6.9) 5.6 (5.9) 15.9 (5.8) 5.1 (3.9) 1.8 (4.2) 6.1 (24.7) (2005) Goodwin et al. Breast cancer patients 9.4 (6.7) 9.2 (9.6) 6.6 (6.9) 15.3 (6.9) 8.7 (6.7) 6.5 (4.6) 25.2 (33.2) (2004) Costanzo et al. Gynecologic cancer patients 9.97 (5.38) 10.53 (8.05) 27.88 (2005) (extensive treatment) (26.50) Costanzo et al. Gynecologic cancer patients (limited 6.72 (4.87) 7.41 (8.05) 12.16 (31.04 (2005) treatment)

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Table 3-25 Comparisons of POMS TMD scores in various studies Study Population POMS TMD: Mean (SD)

Current study Mixed cancer patients 14.35 (26.48)

Cassileth et al. (1985) Mixed cancer patients 18.7(32.8)

Cassileth et al. (1985) Lung cancer 22.7 (18.6)

Cassileth et al. (1985) Breast cancer 19.5 (11.6)

Cassileth et al. (1985) Gynaecological cancer 13.8 (3.8)

Cassileth et al. (1985) Haematological cancer 21.9 (15.5)

Cassileth et al. (1985) Brain cancer 47.1 (60)

Cassileth et al. (1985) Gastrointestinal cancer 6.7 (18.2)

Cassileth et al. (1985) Melanoma 3.3 (10.3)

Spiegel et al. (1981) Breast cancer patients 11.8 (29.0)

Spiegel et al. (1999) Breast cancer patients 24.8

Spiegel et al. (1999) Women with stage I breast cancer 19.9 (4.4)

Spiegel et al. (1999) Women with stage II breast cancer 29.1 (4.1)

Classen et al. (1996) Advanced breast cancer patients 31 (32.3)

Fawzy et al. (1990) Malignant melanoma patients 32.06

Speca et al (2000) Mixed cancer patients 37.1 (32.7)

Lev et al. (1999) Mixed cancer patients (age 57 or younger) 32.7

Lev et al. (1999) Mixed cancer patients (age 58 or older) 42.9

Cella et al. (1986) Hodgkins disease 37.0

Levine et al. (2001) Breast cancer patients 47.95 (34.7)

Koopman et al. (2001) Rural women ( primary breast cancer) -7.2 (11.6)

Koopman et al. (1998) Women with metastatic breast cancer 30.3 (32.9)

Friedman et al. (2005) Breast cancer patients 44.3 (32.4)

Telch and Telch (1986) Mixed cancer patients. Coping skills training 87.41 (42.32)

Telch and Telch (1986) Mixed cancer patients. Group support 51.09 (23.21) therapy

Goodwin et al. (2004) Breast cancer patients 25.2 (33.2)

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Data given in Table 3-24 and Table 3-25 suggest that participants in the current study have lower total mood disturbance than those participating in the majority of other studies. Most of the studies have been of breast cancer patients and are included here in significant numbers as breast cancer patients make up the largest group in the present study. Cassileth et al. (1985) examined variations in TMD scores between those with different types of cancer, with brain tumours leading to greatest mood disturbance and gastrointestinal cancers and melanoma having the lowest scores.

In one of the few studies in which TMD is lower than in the current study, Koopman et al. (2001) also found high reports of post-traumatic stress symptoms. They also comment that vigour is a negative measure and is subtracted from total TMD score. Thus a mean negative score indicates high levels of vigour and no mood disturbance. The women in that study had primary breast cancer and are likely to have higher levels of vigour than those in the current study, many of whom had more severe disease.

The lower levels of mood disturbance in the current study support those studies that do not show an association between depressed mood and CAM use (Sollner et al., 2000; Verhoef, Hagen, Pelletier, & Forsyth, 1999) rather than those that do (Burstein, Gelber, Guadagnoli, & Weeks, 1999; Paltiel et al., 2001). Moynihan, Bliss, Davidson, Burchell and Horwich (1998) found that, among men with testicular cancer, those with early stage of disease and fewer physical symptoms were less likely to participate in a psychosocial intervention trial. Factors associated with participation included psychosocial dysfunction, notably anxious preoccupation regarding disease. Berglund, Bolund, Gustafsson and Sjoden (1997) also found that a cancer rehabilitation program attracted a group of patients with a heavier burden of psychosocial problems than those who were not attracted.

Plass and Koch (2001) found that participants in psychosocial support did not differ from non-participants in gender, but they were significantly younger. They showed considerably higher scores in emotional and physical distress than non-participants, their attitude towards psychosocial support was more positive, and they had more knowledge about institutions offering support than non-participants.

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3.5.2 Mini-Mental Adjustment to Cancer (Mini-MAC) at baseline

Results from analysis of the Mini-Mac at baseline are given in Table 3-26. Table 3-27 shows comparison on Mini-MAC scores with several other studies.

Table 3-26 Mini-MAC scores at baseline N Mean Std. Median Minimum Maximum Deviation

Helplessness- 109 11.01 2.83 11.00 8 19 Hopelessness

Anxious Preoccupation 108 18.65 4.57 19.00 8 28

Fighting Spirit 108 13.67 1.76 14.00 9 16

Cognitive Avoidance 109 8.78 2.57 9.00 4 15

Fatalism 106 14.17 2.80 14.00 5 20

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Table 3-27 Comparisons of Mini-MAC scores of participants in the current study with those of other studies Study Helplessness- Anxious Fighting Cognitive Fatalism Population Hopelessness Preoccupation Spirit Avoidance Mean Mean (SD) Mean (SD) Mean Mean (SD) (SD) (SD) Current Mixed 11.03 (2.83) 18.59 (4.52) 13.66 8.76 14.22 study cancer (1.79) (2.56) (2.74) patients Watson Mixed 11.96 (3.91) 19.26 (5.15) 12.64 9.49 13.76 et al. cancer (2.21) (2.50) (2.91) (1994) patients Cotton et Breast 12.59 (3.8) 21.52 (4.64) 12.67 8.41 14.05 al. (1999) cancer (1.92) (2.37) (2.67) patients Koopman Rural 17.4 (5.0) 12.4 (2.5) 15.4 et al. women (3.0) (2001) diagnosed with primary breast cancer Grassi et Mixed 12.38 (4.91) 18.66 (6.03) 12.17 11.29 14.62 al. (2005) cancer (2.36) (3.48) (3.22) patients Grassi et Breast 12.63 (5.03) 18.65 (5.81) 12.62 12.04 15.25 al. (2004) cancer (2.21) (3.35) (3.05) patients

These results suggest that participants in the current study score somewhat higher in Fighting Spirit and lower in Anxious Preoccupation and Helplessness-Hopelessness than those in other studies. It might be expected that participants in The Gawler Foundation programs would score highly in measures which represent active coping and low in those representing avoidant coping as it often requires considerable effort to attend the program. Many participants travel from other states (and in some cases from other countries) and put family life and/or working lives on hold for the duration of the program. McGovern, Heyman and Resnick (2002) found that men with prostate cancer who participated in a support group were more likely than non-participants to endorse a Mini-MAC coping style of Anxious Preoccupation as well as one combining high Fighting Spirit and low Helplessness-Hopelessness. 145 Chapter Three: Characteristics of study participants

Consistent with analyses in other studies using the MAC scale (Greer, Moorey, & Watson, 1989; Watson, Haviland, Greer, Davidson, & Bliss, 1999) each patient was classified as having one predominant response among the categories of Fighting Spirit, Helplessness-Hopelessness, Fatalism, Anxious Preoccupation and Cognitive Avoidance. To classify a person’s predominant response, each of the Mini-MAC subscale scores was converted to a z-score using the mean and standard deviation. Each person was then assigned to a group representing the predominant response according to the Mini- MAC subscale with the highest standardised score. Where no standardised score was greater than zero (that is, the sample mean, the person was classified as having no predominant response). The results of this analysis are given in Table 3-28.

Table 3-28 Predominant coping styles among participants at baseline Frequency Percent

Helplessness-Hopelessness 18 16.1

Anxious Preoccupation 20 17.9

Fighting Spirit 25 22.3

Cognitive Avoidance 17 15.2

Fatalism 19 17.0

None 4 3.6

Missing 9 8.0

Total 112 100.0

The most common coping style among participants in this study was found to be Fighting Spirit, with 25 (22.7%) participants having this as the predominant style. These findings are in line with those of other studies, including those of Watson et al. (1999) and also Nordin and Glimelius (1998) who examined reactions to diagnosis in gastrointestinal cancer patients and found the most prominent coping strategy to be Fighting Spirit. 146 Chapter Three: Characteristics of study participants

However, the results of the Fighting Spirit subscale may need to be interpreted with some caution. There is a possibility that the way this is measured in this scale is outdated. Changes in the cultural climate since the early research in the 1970s on responses to cancer mean that many cancer patients are now culturally rewarded for their positive attitude and are aware of the concept (Dreher, 2000). It has been suggested that cancer patients might feel compelled to report a positive attitude and give higher scores on the items that assess Fighting Spirit and it is possible that this is even more likely to apply to patients that participate in an intervention such The Gawler Foundation program, in which positive thinking plays an important role. Indeed, in the current study, 26 patients scored in the highest category on the POMS scale item “Ready to fight” while scoring low on other items in the subscale. A number of people specifically asked if this item referred to fighting cancer while filling out the questionnaire. Thus the questions in the Mini-MAC may no longer provide a sound basis for examining the concept of fighting spirit.

3.5.3 Functional Assessment of Chronic Illness Therapy

(FACIT-Sp) at baseline

Results from analysis of the FACIT-Sp at baseline are given in Table 3-29 and comparisons with those of other studies in Table 3-30.

Table 3-29 FACIT-Sp scores at baseline N Mean Std. Deviation Median Minimum Maximum

FACIT-Sp 111 113.94 18.61 115.00 58.33 147.00

FACT-G 111 82.30 13.68 83.00 37.00 106.00

Physical wellbeing 111 22.87 4.19 24.00 11.00 28.00

Social wellbeing 111 21.86 5.43 23.00 0 28.00

Emotional wellbeing 111 18.03 4.23 19.00 3.00 24.00

Functional wellbeing 111 19.54 5.054 20.00 2.30 28.00

Spiritual wellbeing 111 31.93 8.18 32.00 14.00 47.00

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Table 3-30 Comparison of FACT-G and FACIT-Sp scores of participants in the current study with those of other studies Study Physical Social Emotional Functional Spiritual FACT- FACIT- population wellbeing wellbeing wellbeing wellbeing wellbeing G Sp Mean Mean Mean Mean Mean Mean Mean (SD) (SD) (SD) (SD) (SD) (SD) (SD) Current Mixed cancer 22.8 (4.2) 21.8 (5.4) 18.0 (4.3) 19.6 (5.0) 31.8 (8.2) 82.3 113.7 study patients (13.7) (18.7) Webster et General US 22.7 (5.4) 19.1 (6.8) 19.9 (4.8) 18.5 (6.8) 80.1 al. (2003) population (18.1) Brucker et Mixed cancer 21.3 (6.0) 22.1 (5.3) 18.7 (4.5) 18.9 (6.8) 80.9 al. (2005) patients (17) Cella et al. Mixed cancer 20.49 21.93 14.82 17.96 75.2 (1993) patients (5.45) (4.77) (3.88) (6.10) (NA) Cella et al. Mixed cancer 21.9 (4.8) 14.8 (3.9) 18.0 (6.1) (1997) patients Friedman et Breast cancer 21.8 (5.6) 20.0 (6.2) 18.5 (8.1) al. (2005) patients Daugherty et Advanced 21.6 (5.5) 24.8 (4.0) 15.6 (3.7) 20.7 (5.4) 40.7 (7.2) 123.4 al. (2005) cancer patients Cotton et al. Breast cancer 28.4 (1999) patients (9.24) Holzner et General 24.9 (4.1) 20.2 (5.8) 19.5 (4.5) 21.4 (5.5) 86.5 al. (2003) population (15.2) Holzner et Bone Marrow 21.1 20.2 15.6 20.5 77.8 al. (2003) Transplant Holzner et Breast cancer 25.1 18.3 18.8 21.7 83.9 al. (2003) patients Holzner et Hodgkins 25.5 22.2 20.3 23.1 90.9 al. (2003) lymphoma Noguchi et Japanese 21.5 (5.5) 19.2 (5.6) 17.3 (5.2) 19.6 (5.6) 32.0 (9.2) al. (2004) cancer patients Romero et Breast cancer 78.21 al. (2005) patients Costanzo et Gynecologic 19.44 16.02 17.91 al. (2005) cancer (4.83) (4.01) (4.56) (extensive treatment) Costanzo et Gynecologic 24,56 19.59 22.20 al. (2005) cancer (3.28) (3.80) (5.48) (limited treatment)

The FACT-G is more widely used than the FACIT-Sp, which includes the Spiritual wellbeing subscale so comparisons are more readily available. The results of studies summarized in Table 3-30 suggest that QOL scores of patients in the current study are broadly similar to those of cancer patients in other studies.

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3.5.4 Salivary cortisol at baseline

Salivary cortisol levels at baseline are given in Table 3-31.

Table 3-31 Salivary cortisol levels at baseline N Mean Median Std. Deviation Minimum Maximum

Cortisol level nmol/L 91 21.38 19 13.56 0.5 71.6

These values are within normal range which is quoted as 5-60nmol/L. Comparisons with other studies are complicated by differences in the approaches to measuring cortisol and by population differences (Vedhara, Stra, Miles, Sanderman, & Ranchor, 2006) and see section 3.6.5.

3.6 Analysis of relationships between characteristics of study participants and baseline measures

Research suggests that demographic, disease and lifestyle characteristics of study participants may affect scoring on the measures of mood, coping and QOL used in the study. As this part of the study is cross-sectional, it is not possible to evaluate causal relationships between variables.

3.6.1 Removal of outliers

A number of statistical analyses were run to examine associations between characteristics of study participants and baseline measures. Prior to conducting these analyses participants represented as outliers on the various measures were identified by examining histograms and boxplots. A number of outliers were removed. Details of these are given below:

Case ID 38 and case ID 60 were removed from all analyses. Case ID 38 was a 29 year old woman with thyroid cancer diagnosed 7 months previously. Her score on the POMS TMD was 137 (4.6 SDs from mean). Her scores were also flagged as outliers on all

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POMS subscales except Vigor-Activity and on the FACIT-Sp, FACT-G and Physical wellbeing and Social wellbeing subscales.

Case ID 60 was a 59 year old woman with Stage 3 ovarian cancer diagnosed 18 months previously. The cancer had metastasised to her stomach, bowel, liver and kidneys. Her score on the POMS TMD was 84 (2.6 SDs from mean). Her score was also flagged as an outlier on subscales of Tension-Anxiety, Fatigue-Inertia and Confusion- Bewilderment. Other subscales on which her scores were flagged as an outlier include FACT-G and the subscale of Physical wellbeing. For the other participants’ scores removed from the various scales see Appendix I. After removal of outliers, details of baseline measures were recalculated are given in Table 3-32 to Table 3-36 below:

3.6.2 POMS scores at baseline after removal of outliers

Baseline POMS scores after removal of outliers are given in Table 3-32.

Table 3-32 POMS scores at baseline after removal of outliers N Mean Std. Median Minimum Maximum Deviation

TMD 100 12.43 22.60 7.00 -33 71

Tension-Anxiety 101 5.50 5.35 5.00 -4 20

Depression- Dejection 105 7.54 6.81 5.00 0 30

Anger- Hostility 104 7.52 5.65 6.00 0 23

Vigor- Activity 107 17.78 5.94 18.00 3 31

Fatigue-Inertia 105 7.60 5.07 8.00 0 24

Confusion- 102 2.93 3.94 2.00 -4 12 Bewilderment

POMS TMD scores were found to be normally distributed as were scores on the Tension-Anxiety, Vigor-Activity and Confusion-Bewilderment subscales. Scores on the Depression-Dejection, Anger-Hostility and Fatigue-Inertia subscales were skewed, with greater frequency of lower scores (see Appendix I).

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3.6.3 Mini-MAC scores at baseline after removal of outliers

Baseline Mini-MAC scores after removal of outliers are given in Table 3-33.

Table 3-33 Mini-MAC scores at baseline after removal of outliers N Mean Std. Median Minimum Maximum Deviation

Helplessness- 109 11.01 2.83 11.00 8 19 Hopelessness

Anxious Preoccupation 106 18.54 4.54 19.00 8 28

Fighting Spirit 106 13.68 1.78 14.00 9 16

Cognitive Avoidance 107 8.72 2.52 8.00 4 15

Fatalism 104 14.24 2.67 14.00 8 20

Scores on the Anxious Preoccupation, Cognitive Avoidance and Fatalism subscales were normally distributed. Scores on the Helplessness-Hopelessness subscale were skewed with greater frequency of lower scores and scores on the Fighting Spirit subscale were skewed with greater frequency of higher scores (see Appendix I).

3.6.4 FACIT-Sp scores at baseline after removal of outliers

Baseline FACIT-Sp scores after removal of outliers are given in Table 3-34.

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Table 3-34 FACIT-Sp scores at baseline after removal of outliers N Mean Std. Deviation Median Minimum Maximum

FACIT-Sp 107 115.72 16.37 116.00 75 147

FACT-G 107 83.78 11.49 84.00 57 106

Physical wellbeing 107 23.17 3.86 24.00 12 28

Social wellbeing 106 22.47 4.55 23.15 7 28

Emotional wellbeing 105 18.64 3.37 19.00 9 24

Functional wellbeing 107 19.98 4.52 20.00 10 28

Spiritual wellbeing 106 32.25 8.08 32.50 15 47

Scores on the FACIT-Sp, FACT-G, Emotional wellbeing, Functional wellbeing and Spiritual wellbeing subscales were normally distributed. Scores on the Physical wellbeing and Social wellbeing subscales were skewed with greater frequency of higher scores (see Appendix I). Brady et al. (1999) report that the Spiritual wellbeing subscale of the FACIT-Sp has two factors – Meaning/Peace and Faith. Scores for these factors were computed separately. These are given in Table 3-35.

Table 3-35 Faith and Meaning/Peace subscales of Spiritual wellbeing subscale N Mean Std. Median Minimum Maximum Deviation

FACIT-Sp Faith 103 8.06 2.28 8.00 3 13

FACIT-Sp 102 18.71 3.17 19.00 10 24 meaning/peace

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Correlation between the two scales was high (Pearson r=0.901, p<0.001) suggesting strong links between the Faith and Meaning/Peace dimensions of the Spiritual wellbeing subscale.

3.6.5 Salivary cortisol at baseline after removal of outliers

Baseline salivary cortisol levels after removal of outliers are given in Table 3-36.

Table 3-36 Salivary cortisol levels at baseline after removal of outliers N Mean Std. Deviation Median Minimum Maximum

Cortisol level nmol/L 82 20.06 10.29 18.95 6.20 53.80

Salivary cortisol measurements were included in the current study in an attempt to explore relationships between psychological functioning and a physiological measure of the stress response. Cortisol has been shown to be a reliable measure of physiological stress (Kirschbaum & Hellhammer, 1989, 1994). Alterations in hypothalamic-pituitary- adrenal axis functioning have been reported in cancer patients, including flattening of the circadian rhythm of cortisol secretion (Touitou, Bogdan, Levi, Benavides, & Auzeby, 1996) and elevated plasma cortisol levels (van der Pompe, Duivenvoorden, Antoni, Visser, & Heijnen, 1997)

The values for salivary cortisol reported here are higher than those reported in two other studies (Lai et al., 2005; Polk, Cohen, Doyle, Skoner, & Kirschbaum, 2005) both of which found that those with high positive affect had less cortisol secretion than those with low positive affect. Polk, Cohen, Doyle, Skoner and Kirschbaum (2005) found stress and depression to be associated with higher morning rise in cortisol. However, in the present study salivary cortisol was not significantly correlated with any measures of adjustment. Vedhara, Stra, Miles, Sanderman and Ranchor (2006) also did not find strong correlations between measures of psychological functioning and cortisol in breast cancer patients.

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Discussion of the results of this part of the study is severely limited by the fact that salivary cortisol was measured at only one time point in the day. Further measurements were not possible due to logistical and financial constraints. However, it is acknowledged that levels of cortisol are affected by a wide range of factors such as medication, food intake, hours of sleep and awakening time (Kirschbaum, Pirke, & Hellhammer, 1995). In addition, there is variability in cortisol levels both between and within individuals (Vedhara, Stra, Miles, Sanderman, & Ranchor, 2006). Furthermore, research studies also fail to show a consistent picture in regard to the relationship between measures of psychological functioning and cortisol levels, with not all showing increased cortisol levels to be related to increased stress levels (Vedhara et al., 2003; Vedhara, Stra, Miles, Sanderman, & Ranchor, 2006).

3.6.6 Statistical and procedural issues

Histograms were produced for overall measures and all subscales and these were visually examined to assess which measures were normally distributed (see Appendix I). In the case of those subscales that were not found to be normally distributed non- parametric statistics were used. These subscales were: POMS Depression-Dejection, Anger-Hostility, Fatigue-Inertia; Mini-MAC Fighting Spirit and Helplessness- Hopelessness; and FACIT-Sp Social wellbeing and Physical wellbeing. As mentioned in Section 2.5, due to the large number of statistical procedures reported in this study there is an increased chance of a Type I error and many authors recommend reducing the number of analyses conducted, increasing the alpha level to a more stringent level or applying the Bonferroni Inequality (Stevens, 1992). However, it was considered important in the current study to interpret all results with statistical significance used as an additional descriptive tool, rather than as a water-tight criterion.

3.6.7 Sociodemographic variables and adjustment

The impact of sociodemographic factors on mood, coping and QOL measures was examined using independent t-tests to compare differences between groups for normally distributed measures or Mann-Whitney U tests for non-normally distributed measures. Pearson product moment correlation coefficients were used to examine relationships between normally distributed continuous variables and measures and Spearman Rank Order correlation coefficients were used for non-normally distributed measures. 154 Chapter Three: Characteristics of study participants

3.6.7.1 Gender

Most research suggests that gender does not significantly affect adjustment to cancer (Fife, Kennedy, & Robinson, 1994). This was largely supported by analysis of the differences between men and women on all measures in the current study (See Table 3-37 and Table 3-38). However, both baseline Cognitive Avoidance and Fatalism scores were higher in women than in men.

Table 3-37 Comparison of normally distributed baseline measures in males and females Males Females

M SD n M SD n t df p

POMS

TMD 13.24 21.77 34 12.02 23.17 66 0.26 98 0.800

Tension-Anxiety 6.62 5.91 34 4.94 4.99 67 1.50 99 0.137

Vigor-Activity 19.03 5.40 37 17.11 6.14 70 1.60 105 0.113

Confusion- 2.76 3.70 33 3.01 4.08 69 -0.31 100 0.760 Bewilderment

Mini-MAC

Anxious Preoccupation 17.53 4.79 36 19.06 4.34 70 -1.66 104 0.100

Cognitive Avoidance 7.74 2.17 35 9.19 2.55 72 -2.89 105 0.005

Fatalism 13.31 2.64 36 14.74 2.57 68 -2.67 102 0.009

FACIT-Sp 117.73 16.72 36 114.70 16.21 71 0.90 105 0.368

FACT-G 85.74 10.93 36 82.78 11.71 71 1.26 105 0.210

Emotional wellbeing 19.20 3.13 35 18.36 3.47 70 1.21 103 0.229

Functional wellbeing 21.03 3.85 36 19.45 4.77 71 1.72 105 0.088

Spiritual wellbeing 31.99 9.20 36 32.38 7.50 70 -0.23 104 0.818

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Table 3-38 Comparison of non-normally distributed baseline measures in men and women Males Females

Mean ranks n Mean ranks n z p

POMS

Depression-Dejection 54.17 36 52.39 69 -0.28 0.776

Anger-Hostility 57.69 35 49.87 69 -1.25 0.211

Fatigue-Inertia 48.69 37 55.35 68 -1.07 0.283

Mini-MAC

Helplessness-Hopelessness 51.81 36 56.58 73 -0.75 0.452

Fighting Spirit 52.77 35 53.86 71 -0.17 0.862

FACIT-Sp

Physical wellbeing 58.14 36 54.09 70 -0.99 0.324

Social wellbeing 52.35 36 54.09 70 -0.28 0.781

3.6.7.2 Age

Among participants in the current study, age was found to be positively correlated (with a correlation coefficient level above 0.30) only with Social wellbeing scores. No other associations above this level were observed (see Table 3-39). This supports the results of studies suggesting the age-related differences in distress are not significant, or that these lessen with time from diagnosis (Compas et al., 1999; Maunsell, Brisson, & Deschenes, 1992).

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Table 3-39 Correlations between age and baseline measures Age

Correlation coefficient p

POMS

TMD -0.138 a 0.170

Tension-Anxiety -0.087 a 0.386

Depression-Dejection -0.255 b 0.009**

Anger-Hostility -0.129 b 0.191

Vigor-Activity 0.013 a 0.897

Fatigue-Inertia 0.022 b 0.823

Confusion-Bewilderment -0.159 a 0.111

Mini-MAC

Helplessness-Hopelessness -0.162 b 0.092

Anxious Preoccupation -0.065 a 0.509

Fighting Spirit 0.047 b 0.631

Cognitive Avoidance -0.126 a 0.196

Fatalism 0.060 a 0.542

FACIT-Sp 0.165 a 0.090

FACT-G 0.202 a 0.037*

Physical wellbeing -0.040 b 0.686

Social wellbeing 0.318 b 0.001**

Emotional wellbeing 0.241 a 0.013*

Functional wellbeing 0.058 a 0.550

Spiritual wellbeing 0.072 a 0.466

*p<0.05; **p<0.01; ***p<0.001 a Pearson product moment correlation coefficient b Spearman rank order correlation coefficient Pairwise deletion of missing data was conducted with ns ranging from 100 to 109.

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3.6.7.3 Relationship status

Marital status has been linked to improved adjustment (Broeckel, Jacobsen, Balducci, Horton, & Lyman, 2000; Goodwin, Hunt, Key, & Samet, 1987) although not all studies support this (Friedman et al., 2005). In this study, marital status was not associated with differences in any measures (See Table 3-40 and Table 3-41). However, a limitation is that the quality of the marriage was not assessed and it is likely that this plays a significant role in adjustment (Manne et al., 2004).

Table 3-40 Comparison of normally distributed baseline measures according to relationship status Divorced/Widowed/ Married/De Facto Separated/ Single

M SD n M SD n t df p

POMS

TMD 14.04 19.30 25 11.96 23.85 74 0.39 97 0.694

Tension-Anxiety 5.76 4.05 25 5.37 5.75 75 0.37 58.48 0.714

Vigor-Activity 17.69 6.58 26 17.69 5.70 75 0 104 0.997

Confusion- 3.60 3.48 25 2.76 4.09 76 0.92 99 0.360 Bewilderment

Mini-MAC

Anxious 17.81 5.21 26 18.78 4.33 79 -0.95 103 0.345 Preoccupation

Cognitive 8.38 2.40 26 8.84 2.57 80 -0.79 104 0.430 Avoidance

Fatalism 14.72 2.25 25 14.14 2.77 78 0.95 101 0.344

FACIT-Sp 115.64 13.34 25 115.77 17.37 81 -0.03 104 0.973

FACT-G 83.31 9.97 25 83.85 12.02 81 -0.21 104 0.838

Emotional 19.48 2.71 25 18.34 3.53 79 1.47 102 0.143 wellbeing

Functional 19.84 4.01 25 20.03 4.72 81 -0.18 104 0.860 wellbeing

Spiritual wellbeing 32.34 2.17 25 32.32 8.27 80 0.01 103 0.992

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Table 3-41 Comparison of non-normally distributed baseline measures according to relationship status Divorced/Widowed/ Married/De Facto Separated/ Single

Mean ranks n Mean ranks n z p

POMS

Depression-Dejection 59.48 26 50.17 78 -1.37 0.172

Anger-Hostility 56.77 26 50.39 77 -0.94 0.345

Fatigue-Inertia 49.82 25 53.35 79 -0.51 0.609

Mini-MAC

Helplessness- 53.76 27 54.75 81 -0.14 0.886 Hopelessness

Fighting Spirit 55.25 26 52.26 79 -0.44 0.659

FACIT-Sp

Physical wellbeing 59.52 24 56.12 81 -1.13 0.260

Social wellbeing 42.46 24 56.12 81 -1.94 0.053

3.6.7.4 Level of education

Those with a lower level of education had higher Anxious Preoccupation scores at baseline than those with a higher level of education. However, scores on other baseline measures did not differ according to level of education (See Table 3-42 and Table 3-43). This is a similar finding to some other studies (Chan et al., 2001; Macleod, Ross, Fallowfield, & Watt, 2004). However, in this case results are likely to be confounded by variables such as income and access to resources and support.

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Table 3-42 Comparison of normally distributed baseline measures according to level of education Primary/ Secondary Tertiary or above

M SD n M SD n t df p

POMS

TMD 15.73 26.73 33 10.91 20.42 66 0.91 51.25 0.367

Tension-Anxiety 6.47 6.02 34 5.12 4.91 66 1.20 98 0.231

Vigor-Activity 17.73 6.12 37 17.81 5.92 69 -0.07 104 0.947

Confusion- 3.26 4.22 34 2.81 3.83 67 0.55 99 0.584 Bewilderment

Mini-MAC

Anxious 19.86 4.64 37 17.88 4.35 68 2.18 103 0.032 preoccupation

Cognitive 8.87 2.34 38 8.56 2.56 68 0.62 104 0.539 Avoidance

Fatalism 14,71 2.29 38 13.89 2.80 65 1.53 101 0.130

FACIT-Sp 114.95 15.70 38 116.45 16.75 68 -0.45 104 0.652

FACT-G 82.93 10.49 38 84.09 12.06 68 -0.50 104 0.621

Emotional 18.03 3.37 37 18.91 3.33 67 -1.29 102 0.200 wellbeing

Functional 19.61 4.09 38 20.16 4.79 68 -0.60 104 0.548 wellbeing

Spiritual wellbeing 32.02 8.38 38 32.37 7.96 68 -0.21 104 0.834

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Table 3-43 Comparison of non-normally distributed baseline measures according to level of education Primary/ Tertiary or Secondary above

Mean n Mean n z p ranks ranks

POMS

Depression-Dejection 58.31 35 49.55 69 -1.40 0.160

Anger-Hostility 56.43 36 49.62 67 -1.11 0.269

Fatigue-Inertia 53.38 37 52.01 67 -0.22 0.825

Mini-MAC

Helplessness-Hopelessness 58.51 39 52.23 69 -1.02 0.310

Fighting Spirit 49.35 37 54.99 68 -0.92 0.358

FACIT-Sp

Physical wellbeing 56.05 38 52.07 68 -0.64 0.521

Social wellbeing 52.74 38 53.15 67 -0.07 0.947

3.6.8 Disease variables and adjustment

In this study, comparisons in measures between those with different types of cancer were not possible due to inadequate numbers. However, it was hypothesized that those with more severe (that is, metastatic) disease would be more distressed and have poorer QOL (see Table 3-44 and Table 3-45). Results showed that there were no significant differences in POMS TMD and subscale scores according to disease stage, findings similar to Rosenfeld et al. (2004) who found no significant associations between prostate cancer stage and depression and anxiety but found associations between QOL dimensions and disease stage. In this study, Emotional wellbeing scores in those with metastatic disease were lower than in those with less severe disease. Helplessness/Hopelessness scores were greater in those with metastatic disease and

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Physical wellbeing scores were lower. These results parallel findings in other studies (Nordin & Glimelius, 1998; Schnoll, Harlow, Stolbach, & Brandt, 1998).

Table 3-44 Comparison of normally distributed baseline measures in those with metastatic and non-metastatic disease Non-metastatic Metastatic disease disease

M SD n M SD n t df p

POMS

TMD 10.12 21.87 33 13.54 22.16 61 -0.72 92 0.475

Tension-Anxiety 5.44 5.21 34 5.57 5.20 61 -0.12 93 0.906

Vigor-Activity 19.34 5.70 35 17.11 5.80 65 1.85 98 0.067

Confusion- 2.82 4.08 34 8.78 2.21 67 -0.15 93 0.882 Bewilderment

Mini-MAC

Anxious 17.71 5.26 34 19.16 4.00 64 -1.52 96 0.130 preoccupation

Cognitive 8.69 3.25 32 8.78 2.21 64 -0.14 45.16 0.889 Avoidance

Fatalism 14.72 2.70 32 8.78 2.21 67 1.39 94 0.168

FACIT-Sp 117.30 16.58 34 114.59 16.62 65 0.770 97 0.443

FACT-G 85.63 11.68 34 82.60 11.53 65 1.23 97 0.220

Emotional 19.94 2.57 33 17.83 3.52 64 -3.05 95 0.003 wellbeing

Functional 20.71 4.25 32 19.60 4.76 65 1.14 97 0.258 wellbeing

Spiritual 31.67 8.67 34 32.49 8.13 64 -0.46 96 0.644 wellbeing

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Table 3-45 Comparison of non-normally distributed baseline measures in those with metastatic and non-metastatic disease Non-metastatic disease Metastatic disease

Mean ranks n Mean ranks n z p

POMS

Depression-Dejection 50.99 34 48.71 64 -0.38 0.705

Anger-Hostility 49.25 32 48.88 65 -0.06 0.951

Fatigue-Inertia 44.93 34 51.93 64 -1.16 0.244

Mini-MAC

Helplessness-Hopelessness 41.24 34 55.96 67 -2.42 0.015

Fighting Spirit 56.74 33 45.82 65 -1.83 0.068

FACIT-Sp

Physical wellbeing 62.53 34 43.45 65 -3.16 0.002

Social wellbeing 43.61 33 52.49 65 -1.47 0.143

3.6.8.1 Time from diagnosis

In this study, time from diagnosis was not significantly associated with scores on any of the measures (see Table 3-46). This echoes the results of Bardwell et al. (2004) who found similar levels of emotional wellbeing in breast cancer patients who had either been treated in last six months or who had been treated less recently. However, in that study those not yet treated had poorer emotional wellbeing.

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Table 3-46 Correlation between baseline measures and time from diagnosis in months Time from diagnosis in months

Correlation coefficient p

POMS

TMD 0.043 a 0.673

Tension-Anxiety 0.098 a 0.331

Depression-Dejection -0.151 b 0.125

Anger-Hostility -0.064 b 0.523

Vigor-Activity -0.018 a 0.858

Fatigue-Inertia 0.007 b 0.941

Confusion-Bewilderment 0.083 a 0.409

Mini-MAC

Helplessness-Hopelessness 0.230 b 0.017*

Anxious Preoccupation 0.156 a 0.112

Fighting Spirit -0.117 b 0.233

Cognitive Avoidance -0.015 a 0.881

Fatalism -0.056 a 0.576

FACIT-Sp -0.065 a 0.508

FACT-G -0.032 a 0.743

Physical wellbeing -0.074 b 0.453

Social wellbeing 0.089 b 0.369

Emotional wellbeing -0.098 a 0.322

Functional wellbeing 0.068 a 0.492

Spiritual wellbeing -0.055 a 0.582

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As mentioned in Section 1.4.2, emotional functioning and QOL changes over time. In those patients whose disease does not progress, QOL and emotional functioning may return to pre-disease levels (Cimprich, Ronis, & Martinez-Ramos, 2002; Kessler, 2002). However, in those whose disease progresses, QOL and emotional functioning may worsen. The findings in the current study parallel those of Friedman et al. (2005) who also found time since diagnosis not related to QOL or other measures. However, the situation is likely to be complex with different trajectories of change found in different patients (Helgeson, Snyder, & Seltman, 2004). It is speculated that, as the median time from diagnosis in this group was 15 months, major changes in the course of adjustment in most participants had taken place before attendance at The Gawler Foundation. Alternatively, this population may have been relatively well-adjusted from the time of diagnosis.

3.6.8.2 Current treatment

It was hypothesized that treatment for the disease would be likely to impact on QOL and physical wellbeing, especially as 65% of those in the study had had chemotherapy, which is associated with poor QOL, even after completion (Ganz et al., 2002). Comparisons between treatment and no treatment groups are given in Table 3-47 and Table 3-48. Those receiving treatment at the time of the program had lower Physical wellbeing scores than those who were not. POMS Fatigue-Inertia scores were also lower in those currently receiving treatment. This is to be expected and parallels the results of other studies (Bottomley & Therasse, 2002; Costanzo, Lutgendorf, Rothrock, & Anderson, 2006). In the present study, current treatment was not significantly linked to emotional wellbeing. However, in a study of women with breast cancer Friedman et al. (2005) found treatment to be associated with improved emotional wellbeing and speculated that treatment plays a role in reducing ambiguity and provides reassurance that something is being done to combat the illness. It is possible that this may apply to those attending The Gawler Program in the current study.

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Table 3-47 Comparison of normally distributed baseline measures in those with currently undergoing treatment and those not undergoing treatment No current Current treatment treatment

M SD n M SD n t df p

POMS

TMD 14.06 23.47 50 13.80 23.24 35 0.05 83 0.960

Tension-Anxiety 5.84 5.43 51 5.86 5.51 35 -0.01 84 0.991

Vigor-Activity 17.63 6.40 52 16.87 5.76 39 0.59 89 0.559

Confusion- 2.88 3.96 51 3.33 4.19 36 -0.51 85 0.611 Bewilderment

Mini-MAC

Anxious preoccupation 19.00 4.93 52 19.31 3.72 39 -0.33 89 0.745

Cognitive Avoidance 8.59 2.37 51 9.00 2.40 41 -0.82 90 0.412

Fatalism 13.87 2.70 52 14.29 2.71 38 -0.74 88 0.465

FACIT-Sp 114.53 16.08 53 113.90 16.42 39 0.18 90 0.856

FACT-G 83.88 11.47 53 81.18 11.63 39 1.11 90 0.269

Emotional wellbeing 17.81 3.71 52 18.84 2.92 38 -1.43 88 0.158

Functional wellbeing 20.32 4.42 53 18.64 4.67 39 1.76 90 0.082

Spiritual wellbeing 30.64 8.04 53 32.73 8.04 39 -1.23 90 0.222

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Table 3-48 Comparison of non-normally distributed baseline measures in those currently undergoing treatment and those not undergoing treatment No current treatment Current treatment

Mean ranks n Mean ranks n z p

POMS

Depression-Dejection 47.13 52 43.26 38 -0.70 0.468

Anger-Hostility 48.64 49 40.54 40 -1.48 0.140

Fatigue-Inertia 39.84 50 52.58 40 -2.30 0.021

Mini-MAC

Helplessness-Hopelessness 46.39 53 48.94 41 -0.46 0.649

Fighting Spirit 47.31 52 44.26 39 -0.55 0.580

FACIT-Sp

Physical wellbeing 53.02 53 37.64 39 -2.74 0.006

Social wellbeing 45.83 52 46.23 39 -0.07 0.942

3.6.9 Social support

Many studies have linked social support with improved adjustment and it was hypothesized that higher social support would be linked to lower mood disturbance and higher QOL (Parker, Baile, MoorCd, & Cohen, 2003; Sultan et al., 2004). However, due to the majority of patients in the study reporting high levels of social support, statistical comparisons were not possible.

3.6.10 Church attendance

It was hypothesized that regular attendance at church or other religious institution would be linked to spiritual wellbeing. This was found to be the case with Spiritual wellbeing scores higher in those that attend church (M=39.70, SD= 5.10) than in those that do not (M=31.29, SD=8.25; t(75)=-3.12, p=0.003). Fatalism scores were also 167 Chapter Three: Characteristics of study participants

higher in those that attend (M=16.50, SD=2.01) than in those that do not (M=13.91, SD=2.85; t(75)=-2.77, p=0.007). However, attendance at church was not significantly linked to scores on the Faith subscale of the FACIT-Sp (Yes M=8.70, SD=1.83; No M=8.16, SD=2.22; t(74)=0.721, p=0.473).

3.6.11 Exercise and diet

Some studies have found exercise to be predictive of mood and QOL (Courneya, Mackey, & Jones, 2000; Dimeo, Thomas, Raabe-Menssen, Propper, & Mathias, 2004) while others have not (Pinto, Trunzo, Reiss, & Shiu, 2002). It was hypothesised that time spend exercising would be linked to POMS TMD and Vigor-Activity and FACIT- Sp Physical wellbeing scores. In this study, exercise scores were not strongly correlated with any baseline measures (see Table 3-49).

Assessment of links between compliance with dietary recommendations and baseline measures was not possible as the majority of participants (81:96.4%) were in the high compliance category.

168 Chapter Three: Characteristics of study participants

Table 3-49 Correlations between exercise scores and baseline measures Moderate hours of exercise

Correlation coefficient p

POMS

TMD -0.024 a 0.810

Tension-Anxiety 0.004 a 0.972

Depression-Dejection -0.001 b 0.996

Anger-Hostility 0.068 b 0.494

Vigor-Activity 0.140 a 0.150

Fatigue-Inertia -0.166 b 0.090

Confusion-Bewilderment 0.037 a 0.710

Mini-MAC

Helplessness-Hopelessness -0.042 b 0.667

Anxious Preoccupation 0.080 a 0.412

Fighting Spirit -0.061 b 0.537

Cognitive Avoidance -0.017 a 0.860

Fatalism -0.241 a 0.014*

FACIT-Sp -0.019 a 0.842

FACT-G 0.060 a 0.542

Physical wellbeing 0.187 b 0.054

Social wellbeing -0.005 b 0.961

Emotional wellbeing -0.113 a 0.129

Functional wellbeing 0.148 a 0.057

Spiritual wellbeing -0.157 a 0.107

169 Chapter Three: Characteristics of study participants

3.6.12 Meditation

In the light of research supporting the beneficial effects of meditation discussed in section 1.8.5, it was hypothesized that those with a regular meditation practice would have better QOL and emotional functioning than those who did not. However, there were no significant differences between groups (see Table 3-50 and Table 3-51).

Table 3-50 Comparison of normally distributed baseline measures in those with a regular meditation practice and those without No regular meditation Regular meditation practice practice M SD n M SD n t df p POMS TMD 13.00 24.17 25 12.55 22.20 74 0.09 97 0.933 Tension-Anxiety 5.48 5.75 25 5.55 5.27 75 -0.05 98 0.957 Vigor-Activity 17.88 7.00 26 17.61 5.51 80 0.20 104 0.839 Confusion- 2.75 4.19 24 3.00 3.91 77 -0.27 99 0.789 Bewilderment Mini-MAC Anxious 18.32 5.45 25 18.69 4.21 80 -0.35 103 0.724 preoccupation Cognitive 8.32 2.25 25 8.88 2.59 81 -0.97 104 0.336 Avoidance Fatalism 13.83 2.86 23 14.34 2.63 80 -0.81 101 0.422 FACIT-Sp 115.05 11.40 24 115.75 17.65 82 -0.23 58.42 0.818 FACT-G 85.36 9.13 24 83.20 12.12 82 0.80 104 0.421 Emotional 18.96 3.42 24 18.50 3.37 80 0.58 102 0.561 wellbeing Functional 20.75 3.17 24 19.73 4.86 82 1.21 57.87 0.336 wellbeing Spiritual 29.69 7.97 24 32.96 8.05 81 -1.75 103 0.083 wellbeing

170 Chapter Three: Characteristics of study participants

Table 3-51 Comparison of non-normally distributed baseline measures in those with a regular meditation practice and those without No regular Regular meditation meditation practice practice

Mean n Mean n z p ranks ranks

POMS

Depression-Dejection 53.56 26 52.15 78 -0.21 0.836

Anger-Hostility 58.88 26 49.68 77 -1.36 0.173

Fatigue-Inertia 49.68 25 53.39 79 -0.58 0.591

Mini-MAC

Helplessness-Hopelessness 55.19 26 54.28 82 -0.13 0.896

Fighting Spirit 57.96 26 51.37 79 -0.97 0.331

FACIT-Sp

Physical wellbeing 57.08 24 52.45 82 -0.65 0.514

Social wellbeing 51.85 24 53.34 81 -0.21 0.833

In addition, the amount of minutes per week spent meditating was significantly correlated only with scores on the Faith subscale of the Spiritual wellbeing subscale (see Table 3-52).

171 Chapter Three: Characteristics of study participants

Table 3-52 Correlation between baseline measures and time spent meditating Time spent meditating (minutes per week)

Correlation coefficient p

POMS

TMD -0.063 a 0.640

Tension-Anxiety -0.047 a 0.726

Depression-Dejection 0.086 b 0.506

Anger-Hostility 0.028 b 0.831

Vigor-Activity 0.120 a 0.344

Fatigue-Inertia 0.012 b 0.927

Confusion-Bewilderment -0.135 a 0.301

Mini-MAC

Helplessness-Hopelessness -0.034 b 0.787

Anxious Preoccupation -0.139 a 0.272

Fighting Spirit 0.088 b 0.495

Cognitive Avoidance -0.326 a 0.009**

Fatalism -0.023 a 0.859

FACIT-Sp 0.112 a 0.369

FACT-G 0.056 a 0.655

Physical wellbeing 0.013 b 0.916

Social wellbeing 0.020 b 0.873

Emotional wellbeing 0.165 a 0.193

Functional wellbeing 0.034 a 0.789

Spiritual wellbeing 0.152 a 0.228

Meaning/peace 0.276 a 0.030*

Faith 0.378 a 0.002**

* p<0.05 ; ** p<0.01 ; *** p<0.001 a Pearson product moment correlation coefficient b Spearman rank order correlation coefficient Pairwise deletion of missing data was conducted with ns ranging from 58 to 66. 172 Chapter Three: Characteristics of study participants

Table 3-53 Correlation between baseline measures and self-rated proficiency at meditation Self rated proficiency at meditation

Correlation coefficient p

POMS

TMD -0.210 a 0.104

Tension-Anxiety -0.239 a 0.061

Depression-Dejection -0.136 b 0.280

Anger-Hostility -0.160 b 0.207

Vigor-Activity 0.074 a 0.550

Fatigue-Inertia -0.058b 0.642

Confusion-Bewilderment -0.087 a 0.493

Mini-MAC

Helplessness-Hopelessness -0.092 b 0.450

Anxious Preoccupation -0.223 a 0.070

Fighting Spirit 0.117 b 0.347

Cognitive Avoidance 0.108 a 0.381

Fatalism -0.243 a 0.046*

FACIT-Sp -0.344 a 0.004**

FACT-G -0.242 a 0.045

Physical wellbeing 0.045 b 0.716

Social wellbeing 0.313 b 0.009**

Emotional wellbeing 0.307 a 0.011*

Functional wellbeing 0.170 a 0.163

Spiritual wellbeing 0.445 a <0.001***

Meaning/peace 0.469 a <0.001***

Faith 0.434 a <0.001***

* p<0.05 ; ** p<0.01 ; *** p<0.001 a Pearson product moment correlation coefficient b Spearman rank order correlation coefficient Pairwise deletion of missing data was conducted with ns ranging from 61 to 69. 173 Chapter Three: Characteristics of study participants

Higher self-rated proficiency at meditation was significantly correlated with scores on the Spiritual wellbeing subscale, the Meaning subscale of the Spiritual wellbeing subscale, Faith subscale of the Spiritual wellbeing subscale, FACIT-Sp and Social wellbeing (see Table 3-53). In addition, in those who notice the effects of meditation in everyday life Fatalism and Spiritual wellbeing scores were higher and Helplessness- Hopelessness scores were lower (see Table 3-54).

Table 3-54 Comparison of baseline measures in those who notice the effects of meditation in everyday life and those who do not Those noticing effects of Those not noticing the meditation in everyday life effects of meditation in everyday life Mean ranks n Mean ranks n z p POMS TMD 34.08 12 30.24 49 -0.67 0.502 Tension-Anxiety 33.33 12 31.06 50 -0.39 0.694 Depression-Dejection 36.00 12 32.32 53 -0.61 0.542 Anger-Hostility 33.21 12 32.34 52 -0.15 0.883 Vigor-Activity 30.38 13 34.87 54 -0.75 0.455 Fatigue-Inertia 35.12 13 33.10 53 -0.34 0.734 Confusion-Bewilderment 31.42 12 32.75 52 -0.23 0.822 Mini-MAC Helplessness-Hopelessness 46.27 13 32.38 56 -2.29 0.022 Anxious preoccupation 37.42 13 33.81 55 -0.60 0.552 Fighting Spirit 26.29 12 35.10 54 -1.47 0.143 Cognitive Avoidance 32.92 13 34.87 55 -0.32 0.746 Fatalism 24.04 13 36.40 54 -2.07 0.039 FACIT-Sp 26.38 12 36.24 56 -1.57 0.117 FACT-G 29.33 12 35.61 56 -0.99 0.318 Physical wellbeing 35.75 12 34.23 56 -0.24 0.808 Social wellbeing 29.29 12 35.03 55 -0.93 0.354 Emotional wellbeing 32.14 11 33.77 55 -0.26 0.795 Functional wellbeing 28.21 12 35.85 56 -1.22 0.223 Spiritual wellbeing 23.25 12 36.35 55 -2.11 0.035 Meaning/Peace 22.42 12 35.40 53 -2.16 0.031 Faith 22.21 12 35.44 53 -2.22 0.027

174 Chapter Three: Characteristics of study participants

It is likely that many of those participating in The Gawler Foundation programs had started meditating relatively recently as only 26 (23.2%) had meditated before their cancer diagnosis. However, it seems that just having a meditation practice and the number of minutes per week spent in meditation are not linked to positive effects. These benefits are only seen in those who feel the effects in everyday life and rate themselves as more proficient in their meditation technique. This supports the proposal that a further exploration of the meditation experience and its’ benefits in everyday life would be of value. For a further discussion of the assessment of the meditation experience see Chapter Five.

3.6.13 Participation in psychosocial interventions

It was hypothesized that previous participation in psychosocial interventions would be linked to improved QOL and emotional functioning. However, in this study Social wellbeing scores were lower in those who had participated in other psychosocial interventions (see Table 3-55 and Table 3-56). This may be because those with unmet needs in terms of social support are more likely to seek out psychosocial interventions and other support groups (Bauman, Gervey, & Siegel, 1992; Ussher, Kirsten, Butow, & Sandoval, 2005).

175 Chapter Three: Characteristics of study participants

Table 3-55 Comparison of normally distributed baseline measures in those who had participated in psychosocial interventions and those who had not No previous Previous participation participation in in psychosocial psychosocial interventions interventions

M SD n M SD n t df p

POMS

TMD 10.96 21.40 47 13.06 23.53 48 -0.46 93 0.649

Tension- 4.94 5.32 47 5.90 5.44 49 -0.88 94 0.384 Anxiety

Vigor-Activity 17.71 6.16 48 18.13 5.22 54 -0.37 100 0.709

Confusion- 2.77 3.88 47 3.06 4.14 50 -0.36 95 0.719 Bewilderment

Mini-MAC

Anxious 18.15 4.50 48 18.75 4.27 53 -0.70 99 0.487 preoccupation

Cognitive 8.51 2.52 49 14.30 2.48 53 -0.75 100 0.453 Avoidance

Fatalism 14.07 2.93 46 14.30 2.48 53 -0.44 97 0.664

FACIT-Sp 116.87 17.13 49 114.92 16.04 54 0.60 101 0.552

FACT-G 85.39 11.72 49 18.61 3.19 52 1.30 101 0.197

Emotional 18.69 3.50 49 18.61 3.19 52 0.12 99 0.906 wellbeing

Functional 20.29 4.66 49 19.83 4.48 54 0.50 101 0.617 wellbeing

Spiritual 32.13 8.96 48 32.49 7.40 54 -0.23 100 0.823 wellbeing

176 Chapter Three: Characteristics of study participants

Table 3-56 Comparison of non-normally distributed baseline measures in those who had participated in psychosocial interventions and those who had not No previous participation in Previous psychosocial interventions participation in psychosocial interventions

Mean ranks n Mean ranks n z p

POMS

Depression- 48.32 48 52.51 52 -0.72 0.470 Dejection

Anger- 46.09 49 53.83 50 -1.34 0.179 Hostility

Fatigue- 52.46 48 48.69 52 -0.65 0.515 Inertia

Mini-MAC

Helplessness- 51.49 49 53.40 55 -0.33 0.743 Hopelessness

Fighting 51.69 48 50.38 53 -0.23 0.820 Spirit

FACIT-Sp

Physical 52.29 49 51.74 54 -0.09 0.926 wellbeing

Social 58.10 49 45.40 53 -2.17 0.030 wellbeing

177 Chapter Three: Characteristics of study participants

3.6.14 Relationships between mood and coping

As discussed in section 1.5.2.1, considerable research in coping and adjustment to cancer has focused on the strategies of fighting spirit and helplessness. In line with other studies, it was hypothesized that Fighting Spirit scores would be positively associated with good emotional wellbeing and Helplessness/Hopelessness and Anxious Preoccupation scores with poor emotional wellbeing (Classen, Koopman, Angell, & Spiegel, 1996; Cordova et al., 2003; Watson et al., 1991). Carver et al. (1993) found that optimism was associated with a realistic acceptance of illness and predicted emotional distress both concurrently and prospectively.

In this study:

• POMS TMD scores at baseline were positively correlated with Helplessness- Hopelessness (Spearman rho=0.433, p<0.001), and Anxious Preoccupation (Pearson r=0.543, p<0.001) but only weakly inversely with Fighting Spirit scores (Spearman rho=-0.231, p=0.023).

• POMS Tension-Anxiety scores were positively correlated with Helplessness- Hopelessness (Spearman rho=0.346, p<0.001) and Anxious Preoccupation (Pearson r=0.368, p<0.001) but only weakly inversely with Fighting Spirit scores (Spearman rho=-0.277, p=0.006).

• POMS Depression-Dejection scores were positively correlated with Helplessness- Hopelessness (Spearman rho=0.390, p<0.001) and Anxious Preoccupation (Spearman rho=0.379, p<0.001) but only weakly inversely with Fighting Spirit scores (Spearman rho=-0.216, p=0.030).

• POMS Vigor-Activity scores were negatively correlated with Helplessness- Hopelessness (Spearman rho=-0.339, p<0.001) and Anxious Preoccupation (Pearson r=-0.383, p<0.001) and positively correlated with Fighting Spirit scores (Spearman rho=0.319, P=0.001).

• POMS Fatigue-Inertia scores were positively correlated with Anxious Preoccupation (Spearman rho=0.397, p<0.001) but not Helplessness-Hopelessness (Spearman rho=0.173, p=0.079) or Fighting Spirit scores (Spearman rho=-0.042, p=0.674).

178 Chapter Three: Characteristics of study participants

• POMS Confusion-Bewilderment scores were positively correlated with Helplessness-Hopelessness (Spearman rho=-0.388, p<0.001) and Anxious Preoccupation (Pearson r=0.522, p<0.001) but not Fighting Spirit scores (Spearman rho=--0.127, p=0.212).

Thus, it seems that in this study, those participants experiencing greater mood disturbance also had higher levels of Helplessness-Hopelessness and Anxious Preoccupation. However, links between mood disturbance and Fighting Spirit in these participants were not as strong as those seen in some other studies (Schnoll, Harlow, Stolbach, & Brandt, 1998) although not all show correlations (Bjorck, Hopp, & Jones, 1999). In the current study, the only variable to correlate with Fighting Spirit was Vigor-Activity, consistent with poorer physical state being associated with lower Fighting Spirit (Costanzo, Lutgendorf, Rothrock, & Anderson, 2006). These associations may also support the conclusion that what matters is not what is given by Fighting Spirit but what is taken away by Helplessness-Hopelessness that contributes to poor adjustment (Watson, Haviland, Greer, Davidson, & Bliss, 1999). Bjorck et al. (1999) ascribe lack of associations between Fighting Spirit and anxiety and depression to restricted variance due to the fact that Fighting Spirit is now a common response after cancer diagnosis (see section 3.5.2). They also speculate that a coping style of Fighting Spirit is more important near diagnosis than long after.

However, as this part of the study is cross-sectional the correlations reported here do not imply that helpless coping styles cause high levels of anxiety and depression. It may work in reverse, with high levels of anxiety and depression leading to helplessness. In fact, Nordin, Berglund, Terje and Glimelius (1999) consider MAC Helplessness- Hopelessness and POMS Depression-Dejection to be similar in scale content and therefore measuring the same phenomenon. This is also likely to be the case for the POMS Tension-Anxiety and MAC Anxious Preoccupation scales. They also suggest that some factors, including Helplessness-Hopelessness and Anxious Preoccupation should be interpreted as measures of adjustment which can vary over time while others such as Fatalism and Cognitive Avoidance may be conceptualised in terms of coping and therefore are likely to be more stable over time. This is supported by the results of the current study, with Helplessness-Hopelessness and Anxious Preoccupation scores correlated with higher mood disturbance but not with other Mini-MAC measures.

179 Chapter Three: Characteristics of study participants

Coping also seems to change over time (Heim, Augustiny, Schaffner, & Valach, 1993; Nordin & Glimelius, 1998). Costanzo, Lutgendorf, Rothrock and Anderson (2006) found that avoidance coping was associated with POMS TMD in extensively treated patients but not in patients who had had limited treatment. Thus, coping strategies may vary according to disease stage, with coping and outcomes more strongly linked in those with more severe disease.

3.6.14.1 Coping style and POMS TMD

A multiple regression analysis with simultaneous entry of variables was carried out to examine the relative contributions of different facets of coping style to emotional distress. POMS TMD was the dependent variable and Mini-MAC subscale measures of Fighting Spirit, Helplessness-Hopelessness and Cognitive Avoidance were the independent variables. Following the example of other research studies (Classen, Koopman, Angell, & Spiegel, 1996; Cordova et al., 2003) Anxious Preoccupation was excluded from the analysis as it is considered similar in content to the dependent variable of mood disturbance.

Regression diagnostics were conducted on the residuals to make sure the requirements of linearity, normality and equal variance were met. The results indicated that the residuals were normally distributed, with linear function, and equal variance.

The relationships among the independent variables were examined to determine whether there was multicollinearity. Pearson correlation coefficients were computed for each pair of independent variables and are presented in Table 3-57. The results of these analyses show that none of the correlations between any two variables score above 0.5.

Table 3-57 Coping strategies predicting TMD Variable POMS TMD Helplessness- Fighting Cognitive on entry Hopelessness Spirit Avoidance POMS TMD on - 0.444* -0.213* 0.198* entry Helplessness- - -0.442* 0.196* Hopelessness Fighting Spirit - -0.88 Cognitive - Avoidance Note: *p<0.05 180 Chapter Three: Characteristics of study participants

The results of the analysis show that the combination of the variables predicted 21% of the variance in POMS TMD scores (F (3,93)=8.25, p<0.001). Helplessness- Hopelessness was the variable most strongly associated with TMD with a beta coefficient of 0.412 (p<0.001). However, Fighting Spirit and Cognitive Avoidance were not uniquely associated with TMD as was found in other studies (Classen, Koopman, Angell, & Spiegel, 1996; Cordova et al., 2003; Watson et al., 1991). However, in the former two studies the researchers combined Fighting Spirit and Helplessness- Hopelessness scores into one measure so it is not possible to assess the contributions of each subscale individually. The results of this study suggest that this might not be an appropriate assessment technique.

Table 3-58 Comparison of POMS TMD according to predominant coping style Predominant coping style N Mean rank

Helplessness-Hopelessness 15 58.23

Anxious Preoccupation 19 65.34

Fighting Spirit 24 27.08

Cognitive Avoidance 16 45.50

Fatalism 18 43.61

Total 92

Analysis showed a significant difference in POMS TMD according to coping style with (chi square=25.30, df =4, p<0.001). Inspection of the mean ranks for the groups showed that those with a predominant coping style of Anxious Preoccupation had the highest mood disturbance and those with a predominant coping style of Fighting Spirit had the lowest.

181 Chapter Three: Characteristics of study participants

3.6.15 Relationships between QOL and coping

An important aim of the programs at The Gawler Foundation programs is to explore meaning and purpose in life and there is an underlying spiritual (although not religious) emphasis. The use of meditation plays a role in this. Issues of meaning and spirituality are an important part of QOL for many cancer patients (Mytko & Knight, 1999) and spiritually inclined people may be drawn to this type of program. Several studies have found links between spirituality and positive mood and QOL (Brady, Peterman, Fitchett, Mo, & Cella, 1999; Cotton, Levine, Fitzpatrick, Dold, & Targ, 1999; Fehring, Miller, & Shaw, 1997).

Active coping has also been linked to improved QOL (Bjorck, Hopp, & Jones, 1999; Levine, 2005; Nair, 2000) and Holland et al. (1999) has shown that having a religious faith is associated with a more active coping lifestyle in patients with malignant melanoma. It was hypothesised that Fighting Spirit scores would be associated with higher QOL than Helplessness-Hopelessness and Anxious Preoccupation scores.

In this study:

• FACIT-Sp scores were negatively correlated with Helplessness-Hopelessness (Spearman rho=-0.424, p<0.001) and Anxious Preoccupation (Pearson r=0.545, p<0.001) but only weakly inversely with Fighting Spirit scores (Spearman rho=0.260, p=0.008).

• FACT-G scores were negatively correlated with Anxious Preoccupation (Pearson r=-0.600, p<0.001) and Helplessness-Hopelessness (Spearman rho=-0.371, p<0.001) but only weakly inversely with Fighting Spirit scores (Spearman rho=0.223, p=0.023).

• Physical wellbeing scores were negatively correlated with Anxious Preoccupation (Spearman rho=-0.364, p<0.001) but not with Helplessness-Hopelessness (Spearman rho=-0.157, p=0.106) and Fighting Spirit scores (Spearman rho=0.034, p=0.735).

• Emotional wellbeing was negatively correlated with Anxious Preoccupation (Pearson r=-0.691, p<0.001), Helplessness-Hopelessness (Spearman rho=-0.487, P<0.001) and positively correlated with Fighting Spirit scores (Spearman rho=0.336, p=0.001). 182 Chapter Three: Characteristics of study participants

• Functional wellbeing scores were negatively correlated with Anxious Preoccupation (Pearson r=-0.459, p<0.001), Helplessness-Hopelessness (Spearman rho=-0.300, p=0.002) but only weakly inversely with Fighting Spirit scores (Spearman rho=0.191, p=0.052).

• Spiritual wellbeing scores were negatively correlated with Helplessness- Hopelessness (Spearman rho=-0.335, p<0.001) but only weakly with Anxious Preoccupation (Pearson r=-0.287, p=0.003) but only weakly with Fighting Spirit scores (Spearman rho=0.257, p=0.009).

Thus, the associations between coping and QOL were largely as hypothesized. We also hypothesized that Fatalism scores would be linked to Spiritual wellbeing scores and this was found to be the case (r=0.392, p<0.001). Ho, Fung, Chan, Watson and Tsui (2003) point out that the Fatalism subscale may measure coping functions such as religious coping and faith, positive reappraisal and acceptance. In a study of women with breast cancer, Fitzpatrick (2000) found that fatalism was positively correlated with spirituality and an active participation in religious practice but not associated with perceived lack of control and acceptance of outcome; both are key components in the definition of fatalism. The authors concluded that the Fatalism construct of the Mini-MAC may be more associated with feelings of personal control and that it has a health affirming effect for women with breast cancer (Fitzpatrick, 2000).

In this study, those who scored more highly on the Spiritual wellbeing subscale were more likely to score lower on the Helplessness-Hopelessness subscale. This contrasts with a recent study of coping and adjustment in women with early stage breast cancer, (Stanton et al., 2000) which found high turning to religion in women who were low in hope and vice versa. They concluded that women low in hope find comfort in religion.

3.6.15.1 Coping style and FACIT-Sp

A multiple regression analysis with simultaneous entry of variables was performed to examine the relative contributions of different facets of coping style to QOL. FACIT-Sp was the dependent variable and Mini-MAC subscale measures of Anxious Preoccupation, Fighting Spirit, Helplessness-Hopelessness and Cognitive Avoidance were the independent variables.

183 Chapter Three: Characteristics of study participants

The relationships among the independent variables were examined to determine whether there was multicollinearity. Pearson correlation coefficients were computed for each pair of independent variables and are presented in Table 3-59. The results of these analyses show that none of the correlations between any two variables score above 0.5.

Table 3-59 Coping strategies predicting FACIT-Sp Variable FACIT- Helplessness- Fighting Cognitive Anxious Sp on Hopelessness Spirit Avoidance Preoccupation entry

FACIT-Sp on - -0.455* 0.265* 0.064 -0.545* entry

Helplessness- - -0.442* 0.196* 0.529* Hopelessness

Fighting Spirit - -0.88 -0.151

Cognitive - 0.290* Avoidance

Anxious - Preoccupation

Note: *p<0.05

The results of the analysis show that the combination of the variables predicted 35.6% of the variance in FACIT-Sp scores (F (4,98)=13.5, p<0.001). Anxious Preoccupation was the variable most strongly associated with FACIT-Sp with a beta coefficient of - 0.465 (p<0.001). However, Helplessness-Hopelessness, Fighting Spirit and Cognitive Avoidance were not uniquely associated with FACIT-Sp.

184 Chapter Three: Characteristics of study participants

In section 3.6.14.1 the Mini-MAC subscale of Anxious Preoccupation was removed from the multiple regression analysis on the grounds of conceptual similarity with POMS TMD. If this subscale is also removed from this analysis due to a strong correlation with FACIT-Sp (Pearson r=0.545, p<0.001) the remaining variables predict 21% of the variance (F(3,100)=8.87). Helplessness-Hopelessness is then the variable most strongly associated with FACIT-Sp with a beta coefficient of -0.436 (p<0.001).

Other studies have found links between avoidant coping and distress, for example, Costanzo, Lutgendorf, Rothrock and Anderson. (2006). However, these typically use other measures of coping and it may be that the Mini-MAC measure of cognitive avoidance is not accurately assessing this state. It also seems likely that participants in the current study have relatively low levels of cognitive avoidance due to the effort required to attend the program.

In section 3.5.2, study participants were classified according to their predominant coping style. Kruskal-Wallis tests were carried out to examine the links between predominant coping style and QOL and showed a significant differences in FACIT-Sp according to coping style (chi square=24.27, df =4, p<0.001). Inspection of the mean ranks for the groups showed that those with a predominant coping style of Fighting Spirit had the highest FACIT-Sp scores while those with a coping style of Anxious Preoccupation showed the lowest FACIT-Sp scores. The results are presented in Table 3-60.

Table 3-60 Comparison of FACIT-Sp according to predominant coping style Predominant coping style N Mean rank

Helplessness-Hopelessness 17 34.47

Anxious Preoccupation 20 30.58

Fighting Spirit 25 66.76

Cognitive Avoidance 17 55.85

Fatalism 19 54.47

Total 98

185 Chapter Three: Characteristics of study participants

A similar Kruskal-Wallis analysis was carried out for the FACT-G and showed a significant differences according to coping style (chi square=19.29, df=4, p=0.001). Similarly to FACIT-Sp, inspection of the mean ranks for the groups showed that those with a predominant coping style of Fighting Spirit had the highest FACT-G scores while those with a coping style of Anxious Preoccupation showed the lowest FACT-G scores (see Table 3-61).

Table 3-61 Comparison of FACT-G according to predominant coping style Predominant coping style N Mean rank

Helplessness-Hopelessness 17 40.74

Anxious Preoccupation 20 32.60

Fighting Spirit 25 66.72

Cognitive Avoidance 16 56.82

Fatalism 19 45.92

Total 97

Table 3-62 Comparison of Spiritual wellbeing according to predominant coping style Predominant coping style N Mean rank

Helplessness-Hopelessness 17 29.53

Anxious Preoccupation 20 34.23

Fighting Spirit 25 55.20

Cognitive Avoidance 16 59.34

Fatalism 19 65.11

Total 97

186 Chapter Three: Characteristics of study participants

Kruskal-Wallis analysis showed a significant differences in Spiritual wellbeing according to coping style (chi square=23.29, df=4, p<0.001). Inspection of the mean ranks for the groups showed that those with a predominant coping style of Fatalism had the highest Spiritual wellbeing scores while those with a coping style of Helplessness- Hopelessness showed the lowest FACIT-Sp scores (see Table 3-62).

3.6.16 Relationships between mood and QOL

Lower QOL has been linked to mood disturbance (Broeckel, Jacobsen, Balducci, Horton, & Lyman, 2000; Shapiro et al., 2001), anxiety and anger (Shapiro et al., 2001) and it was hypothesized that mood disturbance would be inversely correlated with QOL measures. Several studies have shown links between spiritual wellbeing and mood disturbance (Cotton, Levine, Fitzpatrick, Dold, & Targ, 1999; Krupski et al., 2006; McClain, Rosenfeld, & Breitbart, 2003; Nairn & Merluzzi, 2003) and it was hypothesized that spiritual wellbeing would be negatively correlated with mood disturbance. The correlations between baseline mood and QOL are given in Table 3-63.

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Table 3-63 Correlations between POMS and FACIT-Sp at baseline

TMD Tension- Depression- Anger- Vigor- Fatigue- Confusion- Anxiety Dejection Hostility Activity Inertia Bewilder- ment

FACIT- -0.600*** a -0.499*** a -0.460*** b -0.131 b 0.483*** a -0.450*** b -0.488*** a Sp

FACT-G -0.618*** a -0.493*** a -0.423*** b -0.110 b 0.542*** a -0.447*** b -0.513*** a

Physical -0.472*** b -0.224* b -0.214* b 0.033 b 0.472*** b -0.580*** b -0.418*** b wellbeing

Social -0.178 b -0.273** b -0.230** b -0.153 b 0.169 b -0.027 b -0.262** b wellbeing

Emotional -0.657*** a -0.520*** a -0.494*** b -0.308** b 0.454*** a -0.348*** b -0.521*** a wellbeing

Functional -0.490*** a -0.325*** a -0.299** b -0.003 b 0.565*** a -0.402*** b -0.346*** a wellbeing

Spiritual -0.345*** a -0.366*** a -0.318** b -0.189 b 0.202* a -0.184 b -0.286** a wellbeing

Meaning/ -0.331** a -0.393*** a -0.296** b -0.182 b -0.202* a -0.103 b -0.349*** a Peace

Faith -0.337** a -0.370*** a -0.245** b -0.186 b 0.228* a -0.101 b -0.346** a

* p<0.05 ;** p<0.01 ;*** p<0.001 a Pearson product moment correlation coefficient b Spearman rank order correlation coefficient Pairwise deletion of missing data was conducted with ns ranging from 95 to 107.

The correlations were largely as hypothesised. Vigor-Activity and Fatigue-Inertia scores were negatively correlated with QOL. This is to be expected as it is likely that participants with a poorer physical state would experience some decrease in QOL. Other studies, such as Bardwell et al. (2004) have also shown better physical QOL to be associated with fewer psychological symptoms and more physical activity.

Scores on the two subscales Peace/Meaning and Faith were not significantly differently correlated in this study (see Table 3-63). This is in contrast to other studies which have shown higher scores on Peace/Meaning to be linked to better emotional functioning and QOL whereas Faith is not (Krupski et al., 2006). In a study of terminally ill patients with cancer and AIDS Nelson et al. (2002) reported the Pearson correlation coefficient

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between the two subscales as 0.56 (p<0.001) and found spirituality (Peace/Meaning) to be negatively associated with depressive symptoms whereas religiosity (Faith) was not.

3.7 Summary

The data support the picture of program participants as predominantly female, well- educated and younger in age. The majority also have good social support. Over 60% of participants reported metastatic disease and 50% had been diagnosed for more than one year. Almost all participants were using the approaches recommended by the Gawler Foundation along with mainstream treatment. Most participants are well motivated and have made lifestyle changes since diagnosis, particularly in the areas of diet and meditation practice.

Analysis of the links between emotional wellbeing, coping and QOL also showed that Helplessness/Hopelessness and Anxious Preoccupation were the coping styles most strongly positively associated with mood disturbance and negatively associated with QOL. This supports the proposal that not what is given by Fighting Spirit but what is taken away by Helplessness-Hopelessness that contributes to poor adjustment. However, in the current study, correlations with Fighting Spirit scores were less than might be expected from other studies. This may be because patients are now culturally rewarded for their attitude of ‘fighting spirit’ and might feel compelled to report a positive attitude, even when this might not be authentic.

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Thus, it seems that feelings of helplessness, which are more common in those with more severe disease, contribute significantly to poorer emotional wellbeing and lower QOL. Meditation, in those who feel proficient and notice the effects in everyday life is linked to reduced helplessness and improved spiritual wellbeing. The results of this part of the study also show that Spiritual wellbeing scores are higher in those with lower POMS TMD scores and lower Helplessness-Hopelessness scores. These results points to the need for a deeper exploration of the meditation experience and its’ positive effects on adjustment.

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4 CHAPTER FOUR

Impact of the Intervention

4.1 Introduction

The aim of this part of the study is to address the research questions: How does attendance at The Gawler Foundation residential program affect mood, coping, quality of life and salivary cortisol measures and what factors predict change on these measures?

Baseline values of the various measures were compared to those obtained from participants after they had completed the program. It was hypothesised that improvements would be found in all measures. All comparisons were done after removal of the data from the participants classified as outliers on the various measures (see section 3.6.1).

4.2 Baseline and program completion comparisons

Measures after program completion and changes in scores from baseline to program completion of all measures were calculated (see Appendix J). In all cases, program completion scores were subtracted from baseline scores. Group means at baseline and after program completion were then compared for all measures. It was hypothesised that improvements would be found in all of these. As mentioned in section 3.6.6, the scores of the POMS Depression-Dejection, Anger-Hostility and Fatigue-Inertia; Mini-MAC Helplessness-Hopelessness and Fighting Spirit; and FACIT-Sp Physical wellbeing and Social wellbeing subscales were not normally distributed and non-parametric statistics were used when comparing these variables. Parametric and non-parametric tests were carried out where appropriate (see Table 4-1 and Table 4-2). All change scores were found to be normally distributed.

A major difficulty in the discussion of this part of the study is that there is no control group with which to compare the intervention group. Thus, it cannot necessarily be concluded that improvements are due to the intervention as these might have happened over time without 191 Chapter Four: Impact of the Intervention

the intervention. However, it may be reasonable to assume that in a 10-day period overall mood, coping and quality of life would remain relatively stable in most people. Controlled studies of interventions in this area generally show little improvements in control groups and, if these do occur, they do not usually approach the magnitude of those seen in intervention groups. Baseline and program completion comparisons for normally distributed measures are given in Table 4-1 and those for non-normally distributed measures in Table 4-2.

Table 4-1 Baseline and program completion comparisons for normally distributed measures Baseline Program completion M SD M SD n t df p POMS TMD 12.20 23.04 -5.16 18.37 87 6.99 86 <0.001 Tension-Anxiety 5.53 5.40 -0.99 3.77 96 8.15 95 <0.001 Confusion- 2.98 3.93 0.96 3.29 99 4.78 98 <0.001 Bewilderment Vigor-Activity 17.81 6.00 20.79 6.33 103 4.50 102 <0.001 Mini-MAC Anxious preoccupation 18.51 4.55 15.58 4.18 105 7.84 104 <0.001 Cognitive Avoidance 8.72 2.53 7.99 2.63 106 3.26 105 0.002 Fatalism 14.24 7.67 14.63 2.39 104 1.87 103 0.064 FACIT-Sp 115.72 16.37 127.06 13.13 107 -7.96 106 <0.001 FACT-G 83.78 11.49 88.19 11.31 107 -2.77 106 0.007 Emotional wellbeing 18.64 3.37 20.38 2.93 105 -6.63 104 <0.001 Functional wellbeing 19.98 4.52 22.21 4.13 107 -5.41 106 <0.001 Spiritual wellbeing 32.25 8.08 37.67 6.70 106 -7.86 105 <0.001

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Table 4-2 Baseline and program completion comparisons for non-normally distributed measures Positive ranks Negative ranks (baseline < program (program completion completion) < baseline) Mean n Mean n z p ranks ranks

POMS

Depression-Dejection 49.95 55 33.77 32 3.53 <0.001

Anger-Hostility 46.19 68 26.81 16 6.06 <0.001

Fatigue-Inertia 48.47 59 36.43 29 -3.76 <0.001

Mini-MAC

Helplessness-Hopelessness 41.98 65 27.12 13 -5.94 <0.001

Fighting Spirit 35.90 21 40.82 57 3.98 <0.001

FACIT-Sp

Physical wellbeing 36.48 28 46.89 58 3.68 <0.001

Social wellbeing 43.30 37 38.09 43 0.09 0.931

4.2.1 POMS

Despite the relatively low baseline POMS measures, scores on all subscales (other than Vigor-Activity) were reduced indicating lower mood disturbance after program completion. As indicated in Table 4-1 and Table 4-2, the mean POMS TMD scores were significantly reduced after the intervention and scores on the subscales of Tension-Anxiety, Depression- Dejection, Anger-Hostility, Fatigue-Inertia and Confusion-Bewilderment were also significantly reduced. The score on the Vigor-Activity subscale was significantly greater. All changes in POMS measures were therefore as hypothesised.

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One of the key components of the intervention is regular meditation and relaxation. Each full day at the retreat starts with a 45-minute meditation session, there is a half-hour session before lunch and, on most evenings, before dinner as well. Several group discussion sessions are devoted to meditation and imagery and these offer participants the opportunity of asking questions and receiving feedback on their practice. Several studies have linked meditation to reduced mood disturbance (Astin, 1997; Shapiro, Schwartz, & Bonner, 1998). Meditation is encouraged as a way to develop the ability to observe the mind’s operations non-judgmentally, leading to the development of more realistic perceptions, greater appreciation of positive as well as negative experiences. Practitioners come to realize that most sensations, thoughts and emotions are transient and that thoughts are “just thoughts,” rather than accurate reflections of reality. This may help to reduce the emotional reactivity usually linked to anxiety symptoms (Kabat-Zinn, 1982; Kabat-Zinn et al., 1992) and the increased awareness may bring changes in habitual cognition and patterns of responding, including ruminative thinking (Ramel, Goldin, Carmona, & McQuaid, 2004).

The Gawler Foundation program also incorporates relaxation techniques and light yoga and the benefits seen in the current study are supported by other studies which have examined the effectiveness of relaxation training and yoga (L. Cohen, Warneke, Fouladi, Rodriguez, & Chaoul-Reich, 2004) in reducing treatment-related symptoms and improving emotional adjustment in cancer patients (Sloman, 1995; Syrjala, Donaldson, Davis, Kippes, & Carr, 1995). Many participants commented that they felt more physically relaxed and in some cases, slept better as the intervention progressed. It is also likely that a retreat environment provides participants with an opportunity to take a break from normal work and family responsibilities. They may have more chance to rest and relax and may also benefit from the healthy food served during the program. This may contribute to improved Vigor- Activity scores on the POMS and also to improved QOL scores (see Section 4.2.3). Levine, Levenberg, Wardlaw and Moyer (2001) reported a 25.15 point reduction after a 3-day retreat for low-income women with breast cancer. As mentioned in Chapter 1.6.3 various psychosocial interventions have been shown to lead to reductions in mood disturbance, including depression and anxiety. Comparisons of reductions in POMS TMD and subscale scores in a number of different interventions are given in Table 4-3 and Table 4-4.

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Table 4-3 Comparisons of reduction in POMS TMD scores in the current study with those seen in other studies Study Population Intervention Duration of Reduction in POMS intervention TMD (Time 1-Time 2) Current study Mixed cancer patients Meditation/ relaxation, group 10 days 17.4 support, diet, positive thinking Fawzy et al. (1990) Malignant melanoma Education, stress management, 6 weekly sessions 26 patients coping skills, support Edelman et al. (1999) Patients with metastatic Cognitive-behavioural Therapy 8 weekly session and 3 9.40 breast cancer monthly sessions Fukui et al (2000) Japanese breast cancer Psychosocial group intervention 6 weekly sessions 8.4 patients Coward et al. (2003) Women with newly Support group based on self- 8 weekly sessions 9.8 diagnosed breast cancer transcendence theory Cunningham et al. Mixed cancer Psychological therapy incorporating 10.43 (2005) spiritual themes Roberts et al (1997) Young adults (mean age Group therapy and psycho- 6 weekly sessions 11.45 29.7) with various cancers educational techniques Targ et al (2002) Mixed cancer patients Mind-body-spirit intervention 12.34 Bridge et al. (1988) Relaxation plus imagery 5.7 Speca et al (2000) Mixed cancer patients Meditation-based stress reduction 7 weekly sessions 24 Cunningham and Tocco Mixed cancer patients Group psycho-educational therapy 26 (1989) Levine et al. (2001) Breast cancer patients Residential program 3 days 25.15 Telch and Telch (1986) Mixed cancer patients. Coping skills training 6 weekly sessions 61.6 Telch and Telch (1986) Mixed cancer patients. Group support therapy 6 weekly sessions 9.07

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Table 4-4 Comparisons of changes in POMS TMD and subscale scores in the current study with those seen in other studies TMD Tension- Depression- Anger- Vigor- Fatigue- Confusion- Anxiety Dejection Hostility Activity Inertia Bewilderment

Current 17.36 4.54 2.70 3.86 2.98 2.05 2.02 study increase

Edelman 9.40 1.53 3.07 0.86 1.77 1.28 0.65 et al. increase (1999)

Targ et al. 12.34 3.98 0.38 1.3 1.08 1.27 2.03 (2002) increase

Bridge et 5.7 2.5 2.5 1.9 0.8 1.7 1.1 al. (1988) increase

Telch and 61.6 11.18 16.11 9.63 8.12 9.39 7.08 Telch increase (1986)

Telch and 9.07 3.47 2.4 1.39 0.29 1.64 0.05 Telch increase (1986)

Roberts et 11.45 1.36 0.82 increase 0.91 0.18 3.00 1.91 al. (1997) increase

Comparisons across studies are complicated by the considerable differences in populations, types of interventions and outcomes measured. Very few programs are residential so most of the comparisons are with studies in which effects are measured weeks or even months later. The Gawler Foundation program studied here is unusual in that it is short term, residential and covers a broad range of approaches including meditation and relaxation training, dietary change and group support. Most intervention studies, particularly the older

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ones, are more limited in scope. Thus, while comparisons with other psychosocial interventions are difficult, some limited comparison may be useful. The reduction in POMS TMD scores in the current study is less than that of other some other studies of psychosocial interventions and greater than others, despite the relatively low baseline POMS TMD scores.

As The Gawler Foundation program has similar components to some of the interventions listed in Table 4-3 and Table 4-4, it might be expected that reductions in mood disturbance would be seen as a result of attendance at the program. Other studies have examined the effects of meditation in cancer patients. In a study of a 7-week meditation-based stress reduction program, Speca, Carlson, Goodey and Angen (2000) found a 24 point reduction in mean POMS TMD score in patients with a variety of cancers. Other studies of meditation-based interventions have shown reductions in anxiety and depression (see Section 1.8.5 for more information).

As well as the stress management techniques of meditation and relaxation, the Gawler Foundation program also incorporates educational sessions on topics such as pain management, positive thinking and diet. In each session participants have the opportunity to ask questions, provide details of their own experiences and offer support to others. This echoes the approach taken in a number other studies including some of those described in Table 4-3. Fawzy et al. (1990) found a reduction of 26 points in mean TMD score in melanoma patients after they participated in a 6-week psychosocial intervention, which incorporated relaxation techniques and educational and discussion sessions. The study by Roberts et al. (1997), which showed an 11.45 point reduction tailored this format to the needs of young adults with cancer.

Some researchers have attempted to compare interventions. Telch and Telch (1986) compared group support and coping skills training and found the latter to be more effective in reducing mood disturbance. They commented that participants felt greater personal control and mastery as they learned techniques to cope with stressful thoughts, feelings and behaviours. Anecdotal reports suggest that similar effects underlie the benefits of The Gawler Foundation programs as people feel less helpless when they are offered techniques such as relaxation and meditation to use in difficult situations.

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This is exemplified in comments from participants such as:

“When communicating with others about my illness I became very tense. Now I am able to focus on the tense parts of my body and relax them very quickly”

“I only do the things I want to and I say no if I am not interested. I let the small things go and make the most of every day. I try not to worry about things that might not happen”

“I often look at events and people from the outside instead of being pulled in by the negativity of the person or situation. I know more clearly why I feel a certain way”

Evans and Connis (1995) compared the effects of a brief cognitive behavioural intervention with those of a socially supportive intervention and found that latter to be more beneficial at 6-month follow-up. Other researchers have commented that socially supportive interventions are likely to require a more lengthy period to show benefits (Spiegel, 2001). However, the residential nature of the program supports the formation of bonds between group members and many comment that this is an important part of the experience.

Comparisons with studies of supportive expressive therapy such as those by David Spiegel and colleagues (Goodwin et al., 2001; Spiegel, Bloom, & Yalom, 1981; Spiegel et al., 1999) are more difficult as the interventions last for longer periods, in some cases, up to a year. The relationships which form between group members are an important part of these interventions and these are likely to be different to the relationships which develop in 10 days, even though the residential nature of the program often leads to supportive bonds between participants (and see Section 4.2.3).

The intervention described by Targ and Levine (2002) (see Section 1.6.3.2.1.1 ) is likely to be closer in format to the intervention in the current study. It is described as a lifestyle change and group support program with an emphasis on the use of psychospiritual issues and inner process. It also incorporates dance/movement and meditation and imagery. Participants met twice a week for most of a day each time. The major difference is that this intervention took place over 12 weeks. The mean POMS TMD change score reported in that study was 12.34.

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In their study of the effects of meditation Carlson et al. (2001) comment that the POMS may not be the most appropriate measure for the assessment of benefits of these types of interventions as it largely assesses negative mood states and may have limited usefulness in the assessment of positive outcomes associated with meditation and mindfulness. A worthwhile direction for future research would be to assess these positive effects (see Chapter Five).

4.2.2 Mini-MAC

All Mini-MAC scale scores, with the exception of Fatalism, showed improved coping after the intervention. Paired t-tests showed significant reductions in Anxious Preoccupation and Cognitive Avoidance scores. Scores on the Fatalism scale were not significantly affected (see Table 4-1).

Helplessness-Hopelessness scores were reduced and Fighting Spirit scores increased at program completion (see Table 4-2). This is to be expected as positive thinking, fighting spirit and maintaining realistic optimism and hope in the face of difficult situations are a focus of some of the sessions of the Gawler Foundation program. Studies of meditation interventions suggest that the increased awareness that meditation promotes may bring about improved self-management through different ways of coping with problems (Ramel et al., 2004; Wenk-Sormaz, 2005). Many of the program participants commented that they felt less stressed and less emotionally reactive.

It is possible that some Mini-MAC scale scores are less likely than others to change over time, particularly in a period as short as the 10-days used in this study. Nordin, Berglund, Terje and Glimelius (1999) suggest that some factors of the MAC and Mini-MAC scales, including Helplessness-Hopelessness and Anxious Preoccupation should be interpreted as measures of adjustment which can vary over time, while other factors such as Fatalism and Cognitive Avoidance may be conceptualised in terms of coping strategies and are therefore less likely to change over time. Closer inspection of some of the scale items may support this. The items on the Fatalism subscale such as “At the moment I take one day at a time”, “I’ve put myself in the hands of God” and “Since my cancer diagnosis I now realise how precious life is and I’m making the most of it” may represent more stable ways of coping

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than items on the Helplessness-Hopelessness subscale such as “I feel like giving up”, “I feel completely at a loss about what to do” and “I feel there is nothing I can do to help myself” and those on the Anxious Preoccupation subscale such as “I am apprehensive” and “I suffer great anxiety about it”.

In support of this view, Grassi, Biancosino, Marmai and Righi (2004) found that the antidepressant reboxetine improved Mini-MAC Helplessness-Hopelessness and Anxious Preoccupation scores but not Fighting Spirit, Cognitive Avoidance and Fatalism scores in breast cancer patients. However, other studies have shown changes in Fighting Spirit scores after interventions (Moorey, Greer, Bliss, & Law, 1998). Fukui et al. (2000) showed change in Fighting Spirit as measured by MAC scale after a psychosocial group intervention in Japanese breast cancer patients. Closer comparisons with other studies are limited by the relatively rare use of the Mini-MAC scale compared to the MAC scale. Comparison with the intervention carried out by Targ and Levine (2002) is given in Table 4-6. Changes in the current study are of similar or slightly greater magnitude.

As in section 3.5.2 predominant coping styles were assessed using z scores and these were then compared with baseline values (see Table 4-5). The results showed a greater number of participants reporting coping styles of Cognitive Avoidance (20 at program completion compared to 17 at baseline) and Fatalism (22 at program completion compared to 19 at baseline), while the number of participants reporting a predominant coping style of Fighting Spirit (21 at program completion compared to 25 at baseline) was reduced.

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Table 4-5 Predominant coping styles among participants at baseline and program completion Baseline Program completion

Frequency Percent Frequency Percent

Helplessness-Hopelessness 18 16.1 18 16.1

Anxious Preoccupation 20 17.9 19 17.0

Fighting Spirit 25 22.3 21 18.8

Cognitive Avoidance 17 15.2 20 17.9

Fatalism 19 17.0 22 19.6

None 4 3.6 3 2.7

Missing 9 8.0 9 8.0

Total 112 100.0 112 100. 0

The items of the Fatalism subscale referred to above may seem similar to some of the concepts explored in meditation practice. This may explain the shift towards Fatalism as a more predominant coping style (Astin, Shapiro, Schwartz, & Shapiro, 2001). Similarly, some of the items on the Cognitive Avoidance subscale such as “Not thinking about it helps me cope” and “I make a positive effort not to think about my illness” may also be affected by the lesser focus on rumination and negative thoughts brought about by meditation practice. An attitude of greater acceptance may lead to a shift away from a predominant coping style of Fighting Spirit characterised by items such as “I try to fight the illness” and “I see my illness as a challenge”.

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Table 4-6 Comparisons of changes in Mini-MAC scores in the current study with those seen in other studies Helplessness- Anxious Fighting Cognitive Fatalism Hopelessness Preoccupation Spirit Avoidance Current study 1.75 2.93 0.74 0.65 0.38 increase increase Targ and 0.65 1.65 0.14 0.71 0.19 Levine (2002) increase

4.2.3 FACIT-Sp

All FACIT-Sp quality of life measures (other than social functioning) were significantly improved after program completion. Paired t-tests showed total scores on the FACT-G and FACIT-Sp scales to be increased. Emotional wellbeing, Functional wellbeing and Spiritual wellbeing scores were significantly increased on program completion (see Table 4-1). The changes in QOL measures were largely as hypothesised.

Physical wellbeing scores were significantly greater after program completion. The beneficial effects of meditation on pain, sleep, and fatigue would be expected to impact positively on physical wellbeing. Scores on the Social wellbeing subscale were not significantly altered (see Table 4-2). The latter finding may be explained by the fact that the program is residential. Several participants commented that being away from family and friends made it difficult to answer the questions on this subscale.

Items on the Emotional wellbeing subscale include those such as “I feel nervous”, “I worry about dying” and “I worry that my condition will get worse”. The improvements in Emotional wellbeing scores might be expected to occur as a result of meditation practice for reasons similar to those discussed in Sections 4.2.1 and 4.2.2 above, including less rumination and a greater focus on the positive.

Several items in the Spiritual wellbeing subscale relate to issues of meaning, including “I have a reason for living”, “I feel a sense of purpose in my life” and “My life lacks meaning

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and purpose”. One of the aspects on which The Gawler Foundation program focuses is “Finding meaning and purpose in life”. Thus it might be expected that increases in Spiritual wellbeing scores would be seen after the program. Other studies have also shown increases in spiritual beliefs and experiences after meditation interventions (Astin, 1997; Shapiro et al., 1998).

Comparisons with other studies that have used the FACIT-Sp to measure change in QOL are given in Table 4-7. As with the Mini-MAC scale comparisons with other studies are limited by the relatively rare use of the FACIT-Sp scale compared to the FACT-G scale. A limited number of comparisons suggest that QOL changes after the intervention in the current study are of similar magnitude of greater than those of other studies.

Table 4-7 Comparisons of changes in FACIT-Sp scores in the current study with those seen in other studies FACIT- FACT-G Physical Social Emotional Functional Spiritual Sp wellbeing wellbeing wellbeing wellbeing wellbeing

Current study 11.34 4.41 1.24 0.038 1.74 2.23 5.43

Targ and 4.98 0.88 0.43 1.68 2.17 3.4 Levine (2002)

Cunningham 3.50 -3.49 (2005) (11.36) (13.13)

The FACT-G has been shown to be responsive to change in clinical and observational studies. Researchers have attempted to identify minimally important differences (MIDs) for scores of scales and subscales. These are defined as “ smallest difference in score in the domain of interest that patients perceive as important, either beneficial or harmful, and that would lead the clinician to consider a change in the patient’s management” (Guyatt, Osoba, Wu, Wyrwich, & Norman, 2002) (see Table 4-8).

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Table 4-8 Minimally important differences in wellbeing for FACT-G and subscales Scale MID Source

Physical wellbeing 2-3 (Cella, Hahn, & Dineen, 2002)

Social wellbeing NA

Emotional wellbeing 2 (Cella, Hahn et al., 2002; McCain, Zeller, Cella, Urbanski, & Novak, 1996)

Functional wellbeing 2-3 (Cella, Hahn et al., 2002)

Total FACT-G 3-7 (Cella, Eton, Lai, Peterman, & Merkel, 2002; Cella, Hahn et al., 2002; Patrick, Gagnon, Zagari, Mathijs, & Sweetenham, 2003)

Note: MID – minimally important difference

Thus, it may be possible to conclude that clinically important differences were achieved from baseline to program completion in total FACT-G, Emotional wellbeing and Functional wellbeing scores. The change in Physical wellbeing score of 1.24 is less likely to be clinically significant. Cella, Hahn and Dineen (2002) reported that relatively small gains in QOL have clinical significance but declines in QOL of similar magnitude appear to be less meaningful as patients minimise their personal negative evaluations about their condition. This may be due to adaptation to disease, optimism or to the phenomenon of response shift.

As an individual’s QOL changes over time, so does the basis on which that person makes a QOL judgement. This phenomenon is known as response shift and refers to an apparent separation of physical functioning and psychological wellbeing. Schwartz and Sprangers (1999) define response shift as “a change in meaning of one’s self-evaluation of a target construct as a result of: (a) a change in the respondents internal standards of measurement; (b) change in respondent’s values or (c) a redefinition/reconceptualisation of the target construct” (p. 1532).

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This has important implications for assessing the effects of treatments as a change in QOL may reflect a response shift, a treatment effect, or a complex combination of both. Group intervention participants have reported that meeting people who are worse or better off than themselves led them to change their internal standards of how badly they were doing (Bauman, Gervey, & Siegel, 1992). Group interventions may also help participants reconsider goals that are important to them and people may learn that it is possible to have a better QOL despite a worsening disease condition.

This is, for many people, a desirable outcome and in this sense, many interventions, including those run by The Gawler Foundation, aim to teach response shift. This may be even more likely after an intervention incorporating meditation which focuses on acceptance and having a greater appreciation of positive experiences. It is likely that response shift accounts for some of the QOL improvements seen after the intervention. In a study of Australian community-based self-management programs Hawkins and Osborne (2005) found that response shift occurred in about 50% of participants and positive and negative response shift had profound effects on patient-reported outcomes. No attempt was made to investigate response shift in this study and further investigation is recommended.

4.2.4 Salivary cortisol

Salivary cortisol levels at baseline (M=20.06, SD= 10.41) were significantly reduced after the intervention (M=16.65, SD=8.33; t(76)=2.96, p=0.004) indicating reduced stress levels. However, these results must be interpreted carefully. As mentioned in section 3.6.5, cortisol levels are affected by many factors, including medication, food intake, hours of sleep and awakening time and it was not possible to control for all these. Furthermore, the lack of a consistent picture in regard to the relationship between measures of psychological functioning and cortisol levels and variation in and between individuals also complicates the picture (Kirschbaum, Pirke, & Hellhammer, 1995; Vedhara, Stra, Miles, Sanderman, & Ranchor, 2006). Anecdotally, it has also been observed that on the last morning of the residential program (which was when the saliva samples are collected) participants are preparing to leave and often feel some anxiety associated with this. Thus stress hormone levels may be affected, possibly reducing the effects of the intervention on cortisol levels.

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4.2.5 Effect sizes

One-way repeated measures ANOVAs were conducted to compare scores on several measures at baseline and program completion (where these scores were normally distributed). The results are presented in Table 4-9. There were significant effects for time on all measures.

Table 4-9 ANOVAs to compare baseline and program completion measures Baseline Program N Wilks F statistic Multi-variate mean (SD) completion mean Lambda partial eta (SD) squared

POMS TMD 12.20 -5.16 (18.37) 87 0.64 F(1,86)=48.80, 0.36 (23.04) p<0.001

Tension- 5.53 (5.40) 0.99 (3.77) 96 0.59 F(1,95)=66.38, 0.41 Anxiety p<0.001

FACIT-Sp 115.72 127.06 (13.13) 107 0.62 F(1,106)=63.32, 0.37 (16.37) p<0.001

FACT-G 83.78 88.19 (11.31) 107 0.93 F(1,106)=7.68, 0.07 (11.49) p<0.001

Spiritual 32.25 (8.08) 37.67 (6.70) 106 0.63 F(1,105)=61.7, 0.37 wellbeing p<0.001

Using the commonly used guidelines proposed by Cohen (1988) in which a partial eta squared of 0.01 suggests a small effect size, a value of 0.06 suggests a moderate effect and a value of 0.14 a large effect, it can be seen that there were significant effects for time on all measures. The effect on FACT-G scores was of a moderate size while those for all other measures may be considered large. These results suggest that the effect on Spiritual wellbeing scores is of particular importance in the effect on QOL of this intervention. This may reflect the fact that over 50% of participants in the current study report metastatic 206 Chapter Four: Impact of the Intervention

disease and may be more focused on spiritual and existential issues in the face of increasing disease severity. It may also reflect the possibility that a greater number of participants with an interest in spiritual and existential issues are drawn to this type of intervention.

4.3 Comparisons between those who improved and those who worsened

4.3.1 POMS

In order to further understand the characteristics of those who improved after the intervention and those who did not, the sample was divided into those whose POMS TMD scores showed improved mood after program completion and those whose POMS TMD scores showed worse emotional functioning. Only one person remained the same. Some research suggests that those who are most distressed may obtain greater benefit from interventions (Boesen et al., 2005; Cunningham & Tocco, 1989; Goodwin et al., 1996; Spiegel et al., 1999). It was hypothesized that a similar situation would be seen in the current study.

Sociodemographic characteristics were compared between those whose POMS TMD scores worsened and those in whom these improved. Chi square analyses showed no differences between the groups (see Table 4-10). There was no difference in age between those whose POMS scores worsened and those whose POMS scores improved (Improved M=50.65, SD=10.82; Worsened M=50.48, SD=10.48; t(84)=0.06, p=0.950). Time from diagnosis was also not significantly different between the two groups (Improved M=27.77, SD=40.00; Worsened M=32.60, SD=38.85; t(83)=-0.48, p=0.636).

Baseline POMS TMD scores were significantly different between the two groups. Mean baseline POMS TMD scores were higher in those who improved than in those who worsened. Thus, consistent with other studies those with poorer emotional functioning at baseline showed greater benefit after the intervention (see Table 4-11).

In this study, 21 participants reported poorer emotional functioning after program completion, despite the intervention being designed to relieve mood disturbance. It is speculated that in some people the intervention might increase the ability to express 207 Chapter Four: Impact of the Intervention

negative emotion, leading to a poorer performance on the psychometric test (Cunningham, Edmonds, & Lockwood, 1999). In addition, Speca, Carlson, Goodey and Angen (2000) speculate that as one of the aims of mindfulness types of meditation is to focus attention on the present moment, this may have the effect of making someone more aware of negative feelings. This may be a necessary part of learning to deal directly with negative feelings while maintaining hope and realistic optimism.

Those whose POMS TMD scores showed improved mood also had higher Tension-Anxiety, Depression-Dejection and Confusion-Bewilderment scores than those whose POMS TMD scores worsened. Thus affects on these subscales may be particularly important. Those whose POMS TMD scores reflected lower mood disturbance also had lower Helplessness- Hopelessness scores than those whose POMS TMD scores showed greater mood disturbance.

Table 4-10 Differences in baseline characteristics in those whose POMS TMD improved and those whose POMS TMD worsened after program completion Chi square df p

Gender 0.18 1 0.673

Relationship status 1.95 1 0.266

Education level 0.58 1 0.447

Metastatic disease at baseline 1.80 1 0.180

Current treatment at baseline 0.173 1 0.677

208 Chapter Four: Impact of the Intervention

Table 4-11 Comparisons of baseline measures between those whose POMS TMD improved and those whose POMS TMD worsened Improved POMS Worsened POMS

Mean ranks n Mean ranks n z p

POMS

TMD 48.99 65 26.50 21 -3.59 <0.001

Tension-Anxiety 50.42 65 22.07 21 -4.54 <0.001

Depression-Dejection 48.63 65 27.62 21 -3.34 0.001

Anger-Hostility 45.92 64 34.10 21 -1.91 0.056

Vigor-Activity 40.90 65 51.55 21 -1.70 0.089

Fatigue-Inertia 44.12 64 39.60 21 -0.73 0.465

Confusion-Bewilderment 47.98 64 27.81 21 -3.27 0.001

Mini-MAC

Helplessness-Hopelessness 45.98 64 33.93 21 -1.97 0.049

Anxious preoccupation 44.85 63 33.03 20 -1.92 0.055

Fighting Spirit 39.56 63 51.33 21 -1.95 0.051

Cognitive Avoidance 42.54 62 40.40 21 -0.36 0.723

Fatalism 39.18 62 50.33 21 -1.85 0.065

FACIT-Sp 40.13 63 49.60 21 -1.54 0.124

FACT-G 40.90 63 47.29 21 -1.04 0.299

Physical wellbeing 42.44 63 42.67 21 -0.04 0.971

Social wellbeing 40.68 62 45.90 21 -0.86 0.389

Emotional wellbeing 39.16 61 48.31 21 -1.58 0.127

Functional wellbeing 41.99 63 44.02 21 -0.33 0.740

Spiritual wellbeing 40.69 63 47.93 21 -1.18 0.238

Meaning/Peace 38.64 62 50.38 20 -1.93 0.054

Faith 39.45 62 49.52 21 -1.68 0.094

209 Chapter Four: Impact of the Intervention

4.3.2 FACIT-Sp

The sample was also divided into those whose FACIT-Sp and FACT-G scores improved after program completion and those whose FACIT-Sp and FACT-G scores worsened. For FACIT-Sp four participants’ scores remained unchanged and for FACT-G five peoples’ scores were unchanged.

Sociodemographic characteristics were compared between those whose QOL worsened and those in whom QOL improved. Chi square analyses showed no differences between the groups (see Table 4-12). There was no difference in age between participants whose FACIT-Sp worsened and those whose FACIT-Sp improved (Improved M=51.75, SD=9.48; Worsened M=49.50, SD=12.48; t(105)=-0.93, p=0.353). Time from diagnosis was also not significantly different between the two groups (Improved M=29.70, SD=39.76; Worsened M=18.41, SD=23.95; t(104)=-1.27, p=0.207).

Baseline FACIT-Sp was significantly different between the two groups. Mean baseline FACIT-Sp scores were lower among those who improved than among those who worsened. Thus, those who benefited least had relatively high QOL to begin with (see Table 4-13). In addition, those whose FACIT-Sp scores improved had lower Vigor –Activity scores to begin with than those whose scores worsened. Baseline FACT-G scores were also lower in those whose FACIT-Sp scores improved than in those whose scores worsened. Baseline Functional wellbeing, Social wellbeing and were lower among those whose FACIT-Sp scores improved.

In this study, 20 participants reported poorer QOL after program completion, despite the intervention being designed to relieve mood disturbance. As with the situation with the POMS discussed in section 4.3.1 it is speculated that this may be due to a greater awareness and ability to express negative feelings and opinions.

210 Chapter Four: Impact of the Intervention

Table 4-12 Differences in baseline characteristics in those whose FACIT-Sp improved and those whose FACIT-Sp worsened after program completion Chi square df p

Gender 0.14 1 0.839

Relationship status 0 1 0.978

Education level 0.31 1 0.578

Metastatic disease at baseline 1.36 1 0.551

Current treatment at baseline 0.60 1 0.438

As with FACIT-Sp, those whose QOL as measured by FACT-G was higher benefited less from the intervention. Mean baseline FACT-G scores were 79.34 (SD=10.43) among those who improved and 92.91 (SD=7.50) among those who did not (t(105)=6.87, p<0.001).

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Table 4-13 Comparisons of baseline measures between those whose FACIT-Sp improved and those whose FACIT-Sp worsened Worsened FACIT-Sp Improved FACIT-Sp

Mean ranks n Mean ranks n z p

POMS

TMD 50.53 20 49.24 78 -0.18 0.857

Tension-Anxiety 51.35 20 49.66 79 -0.24 0.813

Depression-Dejection 53.68 20 51.60 83 -0.28 0.779

Anger-Hostility 61.93 20 48.30 81 -1.87 0.062

Vigor-Activity 67.66 22 49.11 83 -2.55 0.011

Fatigue-Inertia 56.29 21 50.90 82 -0.74 0.460

Confusion-Bewilderment 46.65 20 51.46 80 -0.67 0.505

Mini-MAC

Helplessness-Hopelessness 46.75 22 55.88 85 -1.25 0.212

Anxious preoccupation 48.90 20 53.96 85 -0.67 0.502

Fighting Spirit 60.48 20 50.60 84 -1.34 0.181

Cognitive Avoidance 45.45 21 54.89 84 -1.28 0.200

Fatalism 53.74 21 51.55 82 -0.30 0.764

FACIT-Sp 74.70 22 48.64 85 -3.51 <0.001

FACT-G 68.64 22 50.21 85 -2.48 0.013

Physical wellbeing 51.18 22 54.73 85 -0.48 0.631

Social wellbeing 67.45 22 49.85 84 -2.40 0.016

Emotional wellbeing 59.18 22 51.36 83 -1.08 0.282

Functional wellbeing 67.84 22 50.42 85 -2.35 0.019

Spiritual wellbeing 71.61 22 48.76 84 -3.11 0.019

Meaning/Peace 64.50 22 47.93 80 -2.34 0.001

Faith 70.50 22 46.98 81 -3.31 0.002

212 Chapter Four: Impact of the Intervention

4.4 Characteristics affecting change scores

To further explore the factors that predict benefit from The Gawler Foundation program, baseline to program completion change scores were compared across the participant characteristics described in Chapter Three in cases where it was hypothesised that these might play a part in predicting the effects of the intervention. Thus, it was expected that those with higher mood disturbance, poorer coping and lower QOL would experience greater benefit than those with better adjustment. In the context of previously discussed links between coping and adjustment (see section 3.6.14.1 and 3.6.15.1) it was also hypothesised that changes in the Mini-MAC measures of Anxious Preoccupation, Helplessness-Hopelessness and Fighting Spirit might be associated with changes in mood disturbance and QOL.

4.4.1 POMS

It was hypothesised that baseline scores on all measures would be associated with change in the measures. As mentioned in Section 4.3.1 several studies have shown that those with higher levels of mood disturbance or lower QOL are likely to show greater improvement (Boesen et al., 2005; Spiegel et al., 1999). In all cases high scores on a POMS subscale were significantly correlated with change on that measure (see Table 4-14).

In this study those with higher levels of baseline mood disturbance experienced greater reductions in mood disturbance while those with lower overall baseline quality of life and Emotional wellbeing experienced greater reductions in mood disturbance. Vigor-Activity change score was positively correlated only with Vigor-Activity and FACIT-Sp scores at baseline.

Thus, the results of this study show that in the case of POMS TMD and all subscale scores, greater changes are seen in those whose measures of mood disturbance are higher at baseline. Changes in measures are also correlated with improvements in FACIT-Sp and some subscale scores.

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Table 4-14 Correlations between baseline measures and POMS TMD change scores

Baseline measure Correlation with Baseline - Program completion change scores POMS TMD Tension-Anxiety Depression-Dejection Anger-Hostility Vigor-Activity Fatigue-Inertia Confusion-Bewilder-ment POMS TMD 0.684*** a 0.586*** a 0.589*** a 0.510*** a -0.262* a 0.296** a 0.420*** a Tension-Anxiety 0.570*** a 0.760*** a 0.497*** a 0.354*** a -0.154 a 0.231* a 0.281** a Depression-Dejection 0.585*** b 0.502*** b 0.705*** b 0.553*** b -0.127 b 0.203* b 0.375*** b Anger-Hostility 0.313** b 0.266* b 0.278** b 0.731*** b 0.014 b 0.055 b 0.184 b Vigor-Activity -0.456*** a -0.309** -0.336** a -0.116 a -0.509*** a -0.226* a -0.277** a Fatigue-Inertia 0.343** b 0.278** b 0.237* b 0.108 b -0.170 b 0.541*** a 0.266** b Confusion-Bewilderment 0.489*** a 0.398*** a 0.465*** a 0.328** a -0.196 a 0.306** a 0.675*** a Mini-MAC Helplessness-Hopelessness 0.260* 0.181 b -0.264** b 0.241* b -0.163 b 0.034 b 0.234* b Anxious Preoccupation 0.330** a 0.174 a 0.290** a 0.271** a -0.180 a 0.208* a 0.306** a Fighting Spirit -0.187 -0.172 -0.150 b 0.022 b 0.101 b 0.013 b -0.053 b Cognitive Avoidance 0.148 a 0.060 a 0.262* a -0.183 a -0.144 a 0.144 a 0.060 Fatalism -0.011 a -0.194 a 0.066 a 0.057 a 0.015 a 0.132 b 0.120 FACIT-Sp -0.392*** a -0.290** a -0.305** a -0.181 -0.303** a -0.161 b -0.303** a FACT-G -0.372*** a -0.264** a -0.293** a -0.215* a 0.291** a -0.201* a -0.411*** a Physical wellbeing -0.243* b -0.118 b -0.167 b -0.106 b 0.268** b -0.335** b -0.289** b Social wellbeing -0.080 b -0.157 b -0.015 b -0.040 b 0.156 b -0.010 b -0.306** b Emotional wellbeing -0.380*** a -0.264** -0.398*** a -0.344** a 0.195 a -0.107 a -0.317** a Functional wellbeing -0.282** a -0.113 a -0.190 a -0.154 a -0.237* a -0.177 a -0.240* a Spiritual wellbeing -0.272* a -0.273** a -0.206* a -0.065 a 0.209* a -0.079 a -0.174 Note: * p<0.05; ** p<0.01; *** p<0.001 a Pearson product moment correlation coefficient b Spearman rank order correlation coefficient Pairwise deletion of missing data was conducted with ns ranging from 94 to 106 214 Chapter Four: Impact of the Intervention

Analysis of links between emotional distress and coping styles at baseline presented in section 3.6.14 examined the correlations between coping styles as measured by the Mini- MAC and emotional distress. The results showed that Helplessness-Hopelessness and Anxious Preoccupation were associated with POMS TMD whereas Fighting Spirit was less likely to be linked to mood disturbance. In this part of the study, it was hypothesised that changes in the Mini-MAC measures of Anxious Preoccupation, Helplessness-Hopelessness and Fighting Spirit would be associated with changes in mood disturbance. Correlations between these measures are presented in Table 4-15.

Table 4-15 Correlation between changes in coping and changes in mood disturbance Correlation with Correlation with Correlation with Helplessness- Anxious Fighting Spirit Hopelessness Preoccupation change scores change scores change scores

POMS change scores

TMD 0.235* a 0.300** a -0.156 a

Tension-Anxiety 0.246* a 0.209* a -0.200 a

Depression-Dejection 0.337** a 0.189 a -0.025 a

Anger-Hostility 0.222* a 0.121 a -0.020 a

Vigor-Activity -0.128 a -0.283** a 0.198 a

Fatigue-Inertia 0.047 a 0.186 a -0.057 a

Confusion-Bewilderment 0.259** a 0.286** a -0.106 a

Note: * p<0.05; ** p<0.01; *** p<0.001 a Pearson product moment correlation coefficient b Spearman rank order correlation coefficient Pairwise deletion of missing data was conducted with ns ranging from 83 to 102

215 Chapter Four: Impact of the Intervention

Change in Helplessness-Hopelessness scores correlates with change in Depression- Dejection scores but not with other POMS subscale scores consistent with the proposal that these subscales are similar in content (Nordin et al., 1999). Change in Helplessness- Hopelessness scores also weakly correlate with changes in Anger-Hostility and Confusion- Bewilderment scores.

Anxious Preoccupation score change was weakly inversely correlated with change in Vigor and Confusion-Bewilderment scores. It is likely that feeling better physically links to reduced anxiety and helplessness, a hypothesis supported by significant inverse correlations between Helplessness-Hopelessness and Physical wellbeing scores reported in section 3.6.15. No significant correlation was found with changes in Fighting Spirit scores. However, correlations with Mini-MAC subscale scores are complicated by floor and ceiling effects. The majority of the participants in the current study report high scores on the Fighting Spirit subscale and it was therefore not possible for them to improve significantly on this scale. As reported in section 3.5.2, 18 participants reported the maximum score at baseline while 23 participants scored one point below maximum. In the case of the Helplessness-Hopelessness subscale 28 participants reported the minimum score and 13 people reported one point higher than the minimum (see Appendix J).

4.4.1.1 Links between changes in coping and change in mood

In section 3.6.14.1 multiple regression analysis with simultaneous entry of variables was performed to examine the relative contributions of different facets of coping style to emotional distress at baseline. Analysis showed that Helplessness-Hopelessness was the variable most strongly associated with POMS TMD. In order to examine the contributions of change in coping to changes in POMS TMD scores we performed a multiple regression analysis with simultaneous entry of variables.

Change in POMS TMD was the dependent variable and changes in the Mini-MAC subscale measures of Fighting Spirit, Helplessness-Hopelessness and Anxious Preoccupation were the independent variables. Regression diagnostics were conducted on the residuals to make sure the requirements of linearity, normality and equal variance were met. The results indicated that the residuals were normally distributed, with linear function, and equal variance. 216 Chapter Four: Impact of the Intervention

The relationships among the independent variables were examined to determine whether there was multicollinearity. Pearson correlation coefficients were computed for each pair of independent variables and are presented in Table 4-16. The results of these analyses show that none of the correlations between any two variables score above 0.5.

Table 4-16 Change in coping strategies predicting change in TMD Variable Change in Change in Change in Change in POMS Helplessness- Fighting Anxious TMD Hopelessness Spirit Preoccupation

Change in POMS - 0.235* -0.156 0.300** TMD

Change in - -0.254** 0.376*** Helplessness- Hopelessness

Change in Fighting - - - -0.097 Spirit

Change in Anxious - - - - Preoccupation

Note: *p<0.05; **p<0.01; ***p<0.001

The analysis shows that the combination of the variables predicted 11.7% of the variance in change in POMS TMD scores (F (3,79)=3.50, p=0.019). Change in Anxious Preoccupation is the variable most strongly associated with TMD with a beta coefficient of 0.246 (p=0.034). This is to be expected as some researchers consider the Anxious Preoccupation subscale to be similar in content to POMS TMD (Classen, Koopman, Angell, & Spiegel, 1996; Cordova et al., 2003).

217 Chapter Four: Impact of the Intervention

4.4.2 Mini-MAC

Anecdotally, it is known that one of the reasons people are attracted to The Gawler Foundation program is that they are interested in the possibility of recovery from severe disease. Stories of remarkable recoveries are discussed and Ian Gawler’s personal example is often cited as inspiring. Thus it was hypothesised that greater changes in Fighting Spirit and Helplessness-Hopelessness scores might be seen in those with more severe disease.

A significantly greater increase in Fighting Spirit scores were seen in those with metastatic disease (M=-1.16, SD=1.74) than in those with non-metastatic disease (M=-0.12, SD=1.92; t(94)=-2.68, p=0.009). However, change in Helplessness-Hopelessness scores were not significantly different in those with metastatic disease (M=2.07, SD=2.72) than in those with non-metastatic disease (M=1.38, SD=2.44; t(99)=-1.25, p=0.214).

It was hypothesised that the change in each Mini-MAC subscale score would be correlated with baseline levels of that measure. This was found to be the case:

• Helplessness-Hopelessness Baseline - program completion change score was positively correlated with Helplessness-Hopelessness score at baseline (Spearman rho=0.781. p<0.001).

• Anxious preoccupation Baseline - program completion change score was positively correlated with Anxious Preoccupation score at baseline (Pearson r=0.515. p<0.001).

• Fighting Spirit Baseline - program completion change score was positively correlated with Fighting Spirit score at baseline (Spearman rho=0.608, p<0.001).

• Cognitive Avoidance Baseline - program completion change was positively correlated with Cognitive Avoidance score at baseline (Pearson r=0.410, p<0.001).

• Fatalism Baseline - program completion change score was correlated with Fatalism score at baseline (Pearson r=0.521, p<0.001).

As Helplessness-Hopelessness and Anxious Preoccupation scores appear to be associated with mood disturbance measures, the links between changes in these Mini-MAC measures and baseline levels of other measures were explored more thoroughly (see Table 4-17).

218 Chapter Four: Impact of the Intervention

Table 4-17 Correlations between baseline measures and Helplessness-Hopelessness and Anxious Preoccupation change scores Baseline measure Correlation with Correlation with Anxious Helplessness-Hopelessness Preoccupation Baseline - Baseline - program program completion change completion change scores scores POMS TMD 0.327** a 0.187 a Tension-Anxiety 0.276** a 0.098 a Depression-Dejection 0.370*** b 0.106 b Anger-Hostility 0.146 b -0.070 b Vigor-Activity -0.253** a -0.251* a Fatigue-Inertia 0.115 b 0.173 b Confusion-Bewilderment 0.335** a 0.257* a Mini-MAC Helplessness/Hopelessness 0.781*** b 0.245 b Anxious Preoccupation 0.415*** a 0.515*** a Fighting Spirit -0.242* b -0.082 b Cognitive Avoidance 0.165 a 0.325** a Fatalism -0.206 a 0.082 a FACIT-Sp FACIT-Sp -0.434*** a -0.245* a FACT-G -0.345*** a -0.282** a Physical wellbeing -0.082 b -0.075 b Social wellbeing -0.123 b -0.080 b Emotional wellbeing -0.382*** a -0.271** a Functional wellbeing -0.266** a -0.190 a Spiritual wellbeing -0.401*** a -0.085 a Note: * p<0.05; ** p<0.01; *** p<0.001 a Pearson product moment correlation coefficient b Spearman rank order correlation coefficient Pairwise deletion of missing data was conducted with ns ranging from 96 to 105

219 Chapter Four: Impact of the Intervention

The results of these analyses support the hypothesis that those who have poorer coping, higher mood disturbance and QOL at baseline obtain the most benefit in reduction in Helplessness-Hopelessness and Anxious Preoccupation scores from the intervention. This is similar to the results in other studies (Antoni et al., 2001). Carver (2005) found that women who benefited most from a cognitive behavioural stress management intervention were those who were the least optimistic initially.

The more recent studies of the links between coping style and disease progression suggest that it is not what is given by fighting spirit that is important but what is taken away by helplessness (Watson, Haviland, Greer, Davidson, & Bliss, 1999; Watson, Homewood, Haviland, & Bliss, 2005). Effects on Helplessness-Hopelessness scores may be therefore more important to overall wellbeing than effects on Fighting Spirit scores. Data presented in section 3.4.7 suggest those people who come to The Foundation are likely to be highly motivated to change their lifestyles and report high levels of Fighting Spirit. Their learning of helpful strategies to manage difficulties may help reduce Helplessness-Hopelessness scores.

4.4.3 FACIT-Sp

It was hypothesised that changes in QOL measures would be correlated with baseline levels of these measures. Correlations between changes and baseline measures for FACIT-Sp are given in Table 4-18.

220 Chapter Four: Impact of the Intervention

Table 4-18 Correlations between baseline measures and FACIT-Sp change scores Correlation with Baseline - program completion change scores

Baseline FACIT-Sp FACT-G Physical Social Emotional Functional Spiritual measure wellbeing wellbeing wellbeing wellbeing wellbeing

FACIT-Sp 0.649*** a 0.645*** a 0.291** a 0.333*** a 0.421*** a 0.474*** a 0.517*** a

FACT-G 0.531*** a 0.727*** a 0.338*** a 0.358*** a 0.418*** a 0.509*** a 0.301** a

Physical 0.273** b 0.450*** b 0.490*** b 0.259** b 0.132 b 0.300** b 0.051 b wellbeing

Social 0.358*** b 0.376*** b 0.134 b 0.371*** b 0.198* b 0.275** b 0.281** b wellbeing

Emotional 0.340*** a 0.410*** a 0.187 a 0.133 a 0.553*** a 0.326** a 0.230* a wellbeing

Functional 0.463*** a 0.646*** a 0.225* a 0.224* a 0.340*** a 0.560*** a 0.281** a wellbeing

Spiritual 0.489*** a 0.276** a 0.091 a 0.173 a 0.269** a 0.249** a 0.617*** a wellbeing

Note: * p<0.05 ; ** p<0.01; *** p<0.001 a Pearson product moment correlation coefficient b Spearman rank order correlation coefficient Pairwise deletion of missing data was conducted with ns ranging from 96 to 105

Thus, the results of this study support the hypothesis that greater improvements would be seen in those who had lower QOL at baseline. In the case of all subscales, greater changes in measures are seen in those whose measures of QOL were lower at baseline.

It was hypothesised that changes in the Mini-MAC measures of Anxious Preoccupation, Helplessness-Hopelessness and Fighting Spirit might be associated with changes in QOL. Correlations between these measures are presented in Table 4-19.

221 Chapter Four: Impact of the Intervention

Table 4-19 Correlation between changes in coping and changes in FACIT -Sp Correlation with Correlation with Correlation with Helplessness- Anxious Preoccupation Fighting Spirit Hopelessness change change scores change scores scores

FACIT-Sp change scores

FACIT-Sp -0.363***a -0.410*** a 0.278** a

FACT-G -0.267** a -0.251* a 0.164 a

Physical -0.277** a 0.281** a 0.178 a wellbeing

Social -0.168 a -0.122 a 0.166 a wellbeing

Emotional -0.318** a 0.430*** a -0.247* a wellbeing

Functional -0.219* a -0.330** a -0.254* a wellbeing

Spiritual -0.270** a -0.237* a 0.187 a wellbeing

Note: * p<0.05 ; ** p<0.01; *** p<0.001 a Pearson product moment correlation coefficient b Spearman rank order correlation coefficient Pairwise deletion of missing data was conducted with ns ranging from 96 to 107

Table 4-19 shows that decreases in Helplessness-Hopelessness scores were correlated with an increase in overall quality of life as measured by FACIT-Sp and also with an increase in Emotional wellbeing scores. Decreases in Anxious Preoccupation scores were correlated with increases in FACIT-Sp, Emotional wellbeing, and Functional wellbeing. In the case of 222 Chapter Four: Impact of the Intervention

Fighting Spirit no correlations above 0.30 were observed. Thus, as with the POMS, it seems that those who had poorer QOL at baseline benefit most from the reduction in helplessness and anxious coping styles after the intervention.

4.4.3.1 Links between changes in coping and changes in QOL

In section 3.6.15.1 multiple regression analysis was carried out to examine the relative contributions of different facets of coping style to FACIT-Sp at baseline. Analysis showed that the coping style of Anxious Preoccupation was the variable most strongly associated with overall quality of life as measured by FACIT-Sp.

A multiple regression analysis with simultaneous entry of variables was performed to examine the relative contributions of changes in different facets of coping style to change in FACIT-Sp. Change in FACIT-Sp was the dependent variable and changes in the Mini- MAC subscale measures of Anxious Preoccupation, Fighting Spirit, and Helplessness- Hopelessness. Regression diagnostics were conducted on the residuals to make sure the requirements of linearity, normality and equal variance were met. The results indicated that the residuals were normally distributed, with linear function, and equal variance.

The relationships among the independent variables were examined to determine whether there was multicollinearity. Pearson correlation coefficients were computed for each pair of independent variables and are presented in Table 4-20. The results of these analyses show that none of the correlations between any two variables score above 0.5.

223 Chapter Four: Impact of the Intervention

Table 4-20 Coping strategies predicting FACIT-Sp Variable Change in Change in Change in Change in FACIT-Sp Helplessness- Fighting Anxious on entry Hopelessness Spirit Preoccupation

Change in FACIT- - -0.369*** 0.309** -0.440*** Sp on entry

Change in - -0.247** 0.353*** Helplessness- Hopelessness

Change in Fighting - -0.082 Spirit

Change in Anxious - Preoccupation

Note: *p<0.05; **p<0.01; ***p<0.001

The results of the analysis show that the combination of the variables predicted 29.7% of the variance in change in FACIT-Sp scores (F (3,97)=13.66, p<0.001). Change in Anxious Preoccupation was the variable most strongly associated with FACIT-Sp with a beta coefficient of -0.355 (p<0.001). However, change in Helplessness-Hopelessness (beta coefficient = -0.186, p=0.049), and change in Fighting Spirit (beta coefficient = 0.233, p=0.009) were also uniquely associated with change in FACIT-Sp. Thus, it appears that reducing Anxious Preoccupation coping in program participants is most important for improving QOL but reducing Helplessness-Hopelessness and increasing Fighting Spirit are also important. As discussed in section 4.4.1.1 learning strategies to deal with difficult situation, which might have led to feelings of anxiety and helplessness is likely to have positive effects on several QOL domains including emotional, social and functional wellbeing.

224 Chapter Four: Impact of the Intervention

4.5 Summary

These results suggest that the 10-day residential program run by The Gawler Foundation has significant beneficial effects on mood, mental adjustment to cancer and QOL in cancer patients. Comparison with other studies and calculation of effect sizes suggests that these effects are relatively large. However, the obvious limitation of a lack of control group means that the possibility that such changes would have happened over time without the intervention cannot be excluded. Further research, involving a group of control patients is necessary to clarify this. It is also difficult in interventions such as the current one which have multiple components, to identify which components are likely to be effective.

The generalisability of the results is also limited by the fact that study participants are self- selected. Those who choose to participate in an intervention such as this may differ from those who participate in other support groups and also from those in the general population who choose not to participate in any groups. Further research in this area would be useful.

Improvements in all measures were found at program completion, with analysis of effect sizes suggesting that Spiritual wellbeing has a significant part to play in the improvement in QOL. The shift towards a predominant coping style of Fatalism also supports this, as the way this is conceptualised in the Mini-MAC is similar to the way Spiritual wellbeing is conceptualised in the FACIT-Sp. One of the key components of The Gawler Foundation program is meditation and while meditation for health purposes is not explicitly linked to religious beliefs, meditation attracts many with a relatively strong interest in spiritual issues. This may apply to participants in the current study, possibly as a result of greater disease severity (as over 50% of participants report metastatic disease). It may also reflect that fact that an intervention such as this one which incorporates a significant meditation component attracts people interested in such issues regardless of state of health. Changes in measures were not different according to the sociodemographic variables of age, gender, marital status, educational status, disease severity and current treatment.

The results also suggest that those with higher levels of mood disturbance, poorer coping and lower QOL experience greater benefits than those with less mood disturbance, better coping and higher QOL. Changes in those coping strategies of Anxious Preoccupation and Helplessness-Hopelessness which predict higher mood disturbance and lower quality of life 225 Chapter Four: Impact of the Intervention

at baseline were correlated with changes in these measures after the intervention. Thus it seems that reducing feelings of hopelessness and anxiety are particularly important for participants to experience improved QOL and lower overall mood disturbance.

However, discussion of the results of analyses using the Mini-MAC subscales is complicated by the limitations of the measuring tools used. The majority of the participants in the current study report high scores on the Fighting Spirit subscale and low scores on the Helplessness-Hopelessness subscale and it is therefore not possible for them to improve significantly on either scale.

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CHAPTER FIVE 5

Evaluation of the Gawler Meditation Questionnaire

5.1 Introduction

The purpose of this chapter is to provide details of the analysis of the Gawler Foundation questionnaire assessing meditation, which is a key part of The Gawler Foundation program. The questionnaire was developed by Ian Gawler and The Foundation staff with items drawn both from personal meditation experience and that of program participants. It was considered that an exploration of the meditation experience would be of value in assessing the impact of the intervention, particularly in the light of the results presented in Section 3.6.12 suggesting that the positive effects of meditation are linked to effects in everyday life and self-rated proficiency rather than the actual time spent in meditation. The questionnaire described in this chapter has been used as a descriptive tool by the staff at The Gawler Foundation but has not yet been subjected to psychometric analysis.

5.2 Scale development

A central part of health, medical and social science and related research involves the development of reliable and valid scales to measure particular constructs of interest. As many such constructs cannot be directly measured, one of the ways in which they may be assessed is through the use of scales. In classical measurement theory, it is assumed that the variable of interest is the cause of an individual’s response to scale items. Thus, the scores on a scale measure the construct in a way that allows the researcher to make inferences similar to those which could be made if the variable was measured directly. A scale consists of a number of items which tap the underlying construct of interest. A number of statistical assumptions are used to infer the degree to which the set of items is related to the underlying variable. This relationship forms the basis of understanding the reliability of a scale. A number of publications have outlined the various steps involved in scale development (DeVellis, 1991; Gable & Wolf, 1993; Kline, 1986; Nunnally, 1978). 227 Chapter Five: Evaluation of the Gawler Meditation Questionnaire

5.2.1 Creation of item pool

5.2.2 Administration and testing

Most authors recommend pilot testing of the scale on a small number of subjects. This helps to check whether the respondents are able to clearly understand and follow the instructions. It also provides an opportunity to identify any other potential problems and to assess the amount of time taken to complete the scale.

The next stage involves administration to a development sample, along with validation scales of related constricts. The size and representativeness of sample are important considerations here. DeVellis (1991) recommends 300 people but notes that scales have been developed with smaller sample sizes. Gable and Wolf (1993) recommend six to ten times as many subjects as there are items in the scale.

5.2.3 Scale refinement

Scales are typically subject to a number of analyses which aid in scale refinement and evaluation. Refinement involves the assessment of each of the individual scale items to determine their suitability for retention in the final scale. Once these are removed, the remaining items are evaluated in terms of reliability, factor structure and validity.

This process involves calculation of response frequencies, means and standard deviations for each of the scale items (Gable & Wolf, 1993). Items removed may include those with low variance. This usually includes those items for which respondents all give the same response and those with very skewed mean scores, which may indicate that the item wording is either too strong or not strong enough. As the reliability of a scale is determined by its intercorrelation among each of its items an item with little variability is not likely to be useful (DeVellis, 1991). These items are typically removed unless there are important conceptual reasons for retention (Gable & Wolf, 1993). Clark and Watson (1995) comment that many items show different

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response distributions in clinical and non-clinical samples and an item which shows unbalanced distribution in one sample might provide useful information in another.

Individual items should show correlations with other scale items and with the scale total, with higher correlations suggesting more reliable items and a closer relationship with the true score of the construct of interest. The strength of the intercorrelations among scale items is particularly important as the reliability of the scale as a whole is based on the strength of the average inter-item correlation (Gable & Wolf, 1993). Thus, items with very low or negative correlations with other items should be deleted as the do not contribute to reliability and may reduce internal consistency as indicated by the Cronbach alpha coefficient.

It is also necessary to consider the correlation between each item of the scale and the total scale score (item-scale or item-total correlation (DeVellis, 1991) Typically, the correlation between item and total score without including the item is calculated as this allows a clearer picture of the relationship with the remaining scale items. Items with low corrected item-total scale correlations do not contribute to overall reliability of the scale and should be considered for removal.

5.2.4 Scale evaluation

After removal of unsatisfactory items, the psychometric properties of the scale are evaluated. This involves an exploration of a scale’s factor structure and assessments of reliability and validity.

5.2.4.1 Factor analysis

Factor analysis is the term given to a number of statistical techniques, the overall aim of which is to reduce a large number to interrelated variables to a small number of factors that are thought to reflect underlying processes that have created correlations among the variables. In psychology, factor analysis is commonly used in development and evaluation of objective tests as it is useful in determining the number of variables that underlie a set of scale items (DeVellis, 1991) and some authors believe that all new scales should be subjected to factor analysis following their development (Briggs & Cheek, 1986). Factor analysis also assists in interpretation of underlying variables by clumping together items and also allows the condensation of a larger number of items into a smaller number of total scores.

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Factor analysis involves several steps:

1. Assessment of the suitability of the data for factor analysis

2. The choice of a technique to extract a set of factors from the correlation matrix

3. The selection of factors for rotation

4. The choice of rotation strategy to be used to improve the interpretability of the factors

5. The interpretation of the resulting factors

5.2.4.1.1 Assessing the suitability of the data for factor analysis

Assessing the suitability of data for factor analysis involves a consideration of both sample size and the strength of the relationship among the items. In general, the larger the sample size, the better. In small samples the correlation coefficients among individual items are less reliable. They vary from sample to sample and it is less easy to be sure that they accurately reflect reality (Tabachnick & Fidell, 2001). Comrey and Lee (1992) quote sample sizes of 50 as very poor, 100 as poor, 200 as fair, 300 as good, 500 as very good and 1000 as excellent. Other authors place emphasis on the ratio of subjects to items, with most recommending ratios of at least 5 subjects to each item (Gable & Wolf, 1993).

The strength of the relationship among the items is also assessed in order to determine if factor analysis is appropriate. Correlation coefficients between each pair of variables are calculated and displayed in a correlation matrix. Tabachnick and Fidell (2001) recommend an inspection of this to determine if there are coefficients greater than 0.3. If no correlations of this size are found, the data may not be suitable for factor analysis.

There are two main tests to assess whether data is suitable for factor analysis: Bartlett’s Test of Sphericity (Bartlett, 1954) and the Kaiser-Meyer-Olkin (KMO) measure of sampling adequacy (Kaiser, 1970, 1974). The former provides a test of the null hypothesis that there are no correlations between the variables. The value of this statistic must reach significance for factor analysis to be considered suitable. KMO values range between zero and one and small values suggest that factor analysis is not appropriate. Tabachnick and Fidell (2001) recommend KMO values of 0.6 and above for good factor analysis.

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5.2.4.1.2 Methods of extraction

There are several different methods of factor extraction. These include principal components analysis, maximum likelihood factor extraction and principal axis factoring. Principal components analysis (PCA) is the most common extraction technique used by scale developers to explore the underlying structure of a scale and is ideally suited to researchers who wish to reduce a large number of items down to a smaller number of factors (Tabachnick & Fidell, 2001). This procedure involves standardising each variable so that it has a mean of zero and a standard deviation of one. The principal components are linear combinations of the original variables. The first factor extracted is the one that explains the greatest possible percentage of total variability. The second factor does the same thing with the remaining pool of variance and this process continues until there are many factors as there are variables.

5.2.4.1.3 Selection of factors for rotation

In the PCA process, some of the factors extracted will explain very little variance and will be of little importance. It is thus necessary to omit some factors while retaining others for further investigation. While the conceptual theory behind the measurement and analysis may help to determine how many factors to extract there are also other common methods that may aid the decision. There is no single correct answer.

One of the most commonly used techniques is known as Kaiser’s criterion or the eigenvalue rule (DeVellis, 1991). The eigenvalue refers to the amount of the total variance explained by that factor. Using this criterion, only factors with an eigenvalue of 1.0 or greater are retained.

Another commonly used approach involves plotting the eigenvalues versus the factor number on what is known as a scree plot. Typically the plot shows a steep slope for the large factors and tails off for the rest. Catell (1966) recommends retaining all factors above the elbow or break in the plot, that is, the point at which it becomes horizontal, as these factors contribute most to the explanation of the variance in the data set.

Another technique involves the use of the ‘Parallel Analysis’ technique in which a random datafile of the same sample size is generated and provides eigenvalues for comparison. Only factors from the original analysis with eigenvalues that exceed the randomly generated criterion values are retained. It is then possible to produce a table of

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factor loadings with the coefficients expressing each standardised variable in terms of the number of factors retained. They indicate how important each factor is for a given variable.

5.2.4.1.4 Rotation of factors

PCA provides information about the number of factors needed to adequately describe the data. However, these factors cannot usually be easily interpreted from an inspection of the factor loadings. A process known as rotation is used to improve the interpretability of the factors without changing the underlying mathematical properties (Tabachnick & Fidell, 2001). This process helps to separate the factors into what is known as simple structure, in which separate groups of variables are associated with each factor. Ideally, each factor should load significantly on only some variables and each variable should load significantly (with a correlation above 0.30) on only one factor (Thurstone, 1947).

There are two main types of rotation: orthogonal and oblique. Orthogonal rotation techniques provide factors that are independent and oblique rotation techniques allow for factors to be correlated. Thus, oblique rotation is used where it is suspected that the factors may be related or it is not known whether or not they are related. This is more common in social science research.

5.2.4.1.5 Interpretation of the factors

Once the factors have been extracted and rotated they are interpreted and labelled. This process involves grouping together the variables showing substantial loadings with each of the factors and using these to identify the underlying construct. The criteria for a ‘substantial loading’ varies according to author but is typically between 0.3 and 0.5 (DeVellis, 1991; Gable & Wolf, 1993; Tinsley & Tinsley, 1987). Typically the higher the loading of a variable the more weight it should be given in the interpretation and labelling. If oblique rotation is used two matrices will be produced: a structure matrix and a pattern matrix. Most authors recommend the use of the pattern matrix loadings for interpretation of factors (Tabachnick & Fidell, 2001).

As there is no one correct factor solution Tabachnick and Fidell (2001) recommend using different extraction techniques, varying the number of factors and using different rotation techniques until the best solution is obtained. They comment that a good factor

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analysis “makes sense” while a bad one does not (p583). The final solution depends on a subjective assessment of interpretability and scientific utility and it is often the case that researchers differ regarding which is best.

In addition to interpretability, it is also necessary to assess a scale’s replicability. This involves assessing whether the scale is replicable, both with different groups of subjects and over time. Thus further testing of the scale with different groups and using repeat administration is necessary before the factor structure of a scale can be clearly established.

5.2.5 Reliability

In order for a scale to be useful, it must be reliable and one of the most important assessments of a newly developed scale is an investigation of its reliability. Psychometrically the term reliability refers to both the scale’s internal consistency and its stability over time or test-retest reliability (Kline, 1986). The “higher the reliability, the smaller the error and the greater the relation of the test score to the true score” (Kline, 1986 , p. 118).

Internal consistency refers to the overall degree to which the items that make up the scale are intercorrelated. The most commonly used measure of this is Cronbach’s (1951) coefficient alpha. This ranges from 0 to 1 with higher levels indicating higher levels of internal consistency. Nunnally (1978) recommends a minimum level of 0.7 while DeVellis (1991)considers values below 0.6 unacceptable, 0.6 to 0.65 undesirable, 0.65 to 0.70 minimally acceptable, 0.60 to 0.80 respectable, 0.80 to 0.90 very good, above 0.9 shortening the scale should be considered.

Another value, the mean inter-item correlation gives an indication of a scale’s homogeneity or unidimensionality, that is, the degree to which the scale items assess a single underlying factor or construct. Briggs and Cheek (1986) recommend an optimal value of between 0.2 and 0.4. Values of lower than 0.2 may be too low for the items to be measuring a single construct while values above 0.5 suggest that the construct measured is too specific or that the scale contains a number of redundant items. In scales with a larger number of items the mean inter-item correlation may be a more useful measure than Cronbach’s alpha coefficient (Cortina, 1993). In addition, the individual iter-item correlations should fall somewhere in the range of 0.15 to 0.50 (Clark & Watson, 1995) 233 Chapter Five: Evaluation of the Gawler Meditation Questionnaire

Test-retest reliability or temporal stability refers to the consistency of scores on repeated administrations of the scale. If the scale is assessing a construct which is believed to remain stable over a period of time, the two sets of scores should correlate strongly. However, changes in scale scores may be due to changes in the construct itself (DeVellis, 1991).

5.2.6 Validity

The most important consideration in the evaluation of a measure or test is its validity. An assessment of validity is an assessment of whether the scale measures what it is supposed to measure. The Standards for Educational and Psychological Tests (American Psychological American Psychological Association, 1999, p. 9) refer to validity as the “appropriateness, meaningfulness and usefulness of the specific inferences made from test scores”.

The three main types of validity are: content validity, construct validity and criterion validity. Content validity refers to the adequacy with which a measure or scale has sampled from the intended universe of content (Gable & Wolf, 1993). There is no criterion or test by which to assess this and it is generally done by careful development and by considering the available literature an views of experts in the field (Crocker & Algina, 1986). Criterion-related validity concerns that relationship that exists between scale scores and a measurable criterion. However, while suitable criteria are available for some types of scales this is not always the case.

Construct validity, which is central to psychological assessment, involves testing the scale’s performance in terms of theoretically derived hypotheses concerning the nature of the underlying variable or construct. It involves testing a scale in terms of a range of results from a number of studies. It cannot be proven but is an ongoing process of demonstrating that the scale performs in a way that is consistent with the conceptual definition. Assessment is based on an accumulation of research results.

A scale’s construct validity is assessed by exploring its relationship with other constructs, both related (convergent validity) and unrelated (discriminant validity). This involves assessing the pattern of correlations between the new scale and other existing measures, both related and unrelated. Gable and Wolf (1993) note that it is the direction and magnitude of the relationships in the light of theoretical expectations that is important. 234 Chapter Five: Evaluation of the Gawler Meditation Questionnaire

Specific hypotheses must be specified prior to data collection (Gable & Wolf, 1993). The data are then analysed to assess the degree of support for each of the hypothesised relationships. The construct validity of a scale is supported if it is found to correlate as predicted with other measures of similar or related constructs.

5.3 Evaluation of the Gawler meditation questionnaire

In order to assess meditation experience the post-program and follow-up questionnaires described in Section 2.4.1 included a number of questions aimed at assessing the depth and quality of the meditation practice (see Table 5-1). The questionnaire was developed by Ian Gawler and others working at The Foundation in response to a perceived need for a way to assess the depth and quality of the meditation experience. Items were included if it was felt that they reflected both the personal experience of the meditation teachers and the common experiences of those practicing meditation. The questionnaire has been used as a descriptive tool in the program but not yet been subjected to reliability analysis. The questionnaire was used to assess the effects of meditation on adjustment to cancer at three, six and twelve month follow-up, necessitating an assessment of its’ psychometric properties and refinement where necessary.

On inspection of the items in the questionnaire it was theorised that there would be three main categories – physical effects, cognitive/emotional effects and a third category, which was termed ‘expanded consciousness effects’. It is acknowledged that there is an inherent bias in using a questionnaire to assess meditation which has been developed by a proponent of the practice. However, exploration of the scale was felt to be worthwhile.

The 25 items of the Gawler meditation scale were examined by running descriptive statistics in SPSS. These included response frequencies, means and standard deviations for each of the scale items (see Table 5-1). Item 11 “I felt a decrease in pain” was excluded as there were only 69 (62.7%) valid answers to the question. It was also felt that this item was irrelevant for those who did not experience any pain, thus limiting its usefulness. There were no variables with very skewed mean scores or for which all the respondents gave the same response. The data was also checked for the presence of outliers and none were found.

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Table 5-1 Gawler meditation questionnaire

% response frequencies Item Never Occas- Frequently Mean Std. ionally Deviation 1 Felt self-conscious or frustrated 44.5 35.5 1.8 1.48 0.55 2 Felt my body becoming heavy 20.9 32.7 29.1 2.10 0.78 3 Felt my temperature become warmer or cooler 20.0 40.0 22.7 2.03 0.72 4 Felt my body becoming soft and loose 1.8 18.2 63.6 2.74 0.49 5 Was aware of concentrating on my meditation 1.8 31.8 49.1 2.57 0.54 ‘technique’ 6 Was aware of a stream of distracting thoughts 1.8 43.6 38.2 2.43 0.54

7 Felt calm and tranquil 0.9 21.8 60.9 2.72 0.48 8 Felt like I was observing my thoughts as an 9.1 51.8 20.9 2.14 0.59 impartial observer 9 Felt like my body was light/floating 18.2 49.1 16.4 1.98 0.65 10 Felt my body awareness was changing – as it parts 34.5 30.9 18.2 1.80 0.77 of it were ‘missing’ or it was expanding a little in size 11 Felt a decrease in pain 27.3 21.8 13.6 1.78 0.78 12 Was aware of short moments of stillness with no 2.7 46.4 34.5 2.38 0.55 thoughts 13 Lost awareness of my body 15.5 48.2 19.1 2.04 0.65 14 Had memories surface bringing and emotional 24.5 54.5 4.5 1.76 0.54 response 15 Had creative ideas/solutions/insights come to my 24.5 50.9 8.2 1.80 0.60 awareness 16 Felt like I was on a the threshold of a deeper 10.0 59.1 13.6 2.04 0.54 experience 17 Inner colours, sounds or visions were seen and/or 15.5 44.5 22.7 2.09 0.68 heard 18 Felt confident of a healing taking place in my body 1.8 51.8 30.0 2.34 0.52 19 Experienced a sense of being in infinite space 25.5 43.6 14.5 1.87 0.68 20 Was aware of long periods of stillness, but recall 16.4 56.4 10.9 1.93 0.57 was poor - not sure if awake or asleep but it felt different from sleep 21 Was aware of periods of stillness with a sense of 13.6 53.6 16.4 2.03 0.60 expanded consciousness 22 Experienced what I describe as a mystical 48.2 29.1 5.5 1.48 0.62 experience 23 Have been left feeling a very assured, satisfied 3.6 40.0 39.1 2.43 0.58 24 Have a developed a pervading sense of order within 12.7 47.3 20.9 2.10 0.64 my world 25 Have felt I had contact with a higher power 40.0 27.3 16.4 1.72 0.78 Note: Items were scored on the following basis: 1=never, 2=occasionally and 3=frequently

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5.3.1 Assessing the suitability of the data for factor analysis and extraction of factors

The remaining 24 items were subjected to principal components analysis (PCA) using SPSS v13. PCA was chosen as the method of extraction as the aim was to summarise from a large number of variables to a smaller number of factors (Tabachnick & Fidell, 2001). Prior to performing PCA the suitability of data for factor analysis was assessed. Inspection of the correlation matrix (see Appendix K-1) revealed the presence of many coefficients with values of 0.3 and above. The Kaiser-Meyer-Olkin (KMO) measure of sampling adequacy was 0.73, exceeding the recommended value of 0.6 (Kaiser, 1970, 1974) and the Bartlett’s Test of Sphericity (Bartlett, 1954) reached statistical significance, supporting the factorability of the correlation matrix. The initial component matrix is given in Appendix K-2.

PCA revealed the presence of seven components with eigenvalues exceeding one. An inspection of Catell’s scree plot revealed a clear break after the third component (see Figure 5-1).

Figure 5-1 Fig 1: Scree Plot Catell’s scree plot for Gawler meditation questionnaire

3 Eigenvalue

242322212019181716151413121110987654321 Component Number

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Parallel analysis was performed using Monte Carlo PCA for Parallel Analysis (Horn, 1965; Watkins, 2000). Average eigenvalues for 100 randomly generated samples were calculated and compared with those from PCA (see Table 5-2).

Table 5-2 Comparison of values from PCA with those of Monte Carlo PCS Component number Actual eigenvalue Criterion value Decision from PCA from parallel analysis 1 5.785 2.0293 accept 2 2.021 1.8355 accept 3 1.856 1.7008 accept 4 1.492 1.5888 reject

Only components that exceeded the criterion value obtained from the random sample in parallel analysis were retained for further investigation. Thus, the results of parallel analysis support the decision to retain three factors for further investigation.

5.3.2 Rotation of factors

5.3.2.1 Three-factor solution

The analysis was repeated forcing three factors, with the first three factors accounting for 24.1%, 8.4% and 7.7% of the variance respectively (40.2% in total). Examination of the unrotated component matrix (see Appendix K-3), revealed that not all items loaded substantially on one major underlying component. Therefore, to aid interpretability, the three-factor solution was rotated using Oblimin rotation as it was hypothesised that the factors would correlate with each other. See Table 5-3 for the pattern matrix and Appendix K-4 for the structure matrix.

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Table 5-3 Pattern matrix after Oblimin rotation Component

1 2 3

19 Experienced a sense of being in infinite space 0.724 24 Have a developed a pervading sense of order within my 0.711 world 16 Felt like I was on a the threshold of a deeper experience 0.710 22 Experienced what I describe as a mystical experience 0.672 21 Was aware of periods of stillness with a sense of expanded 0.669 consciousness 23 Have been left feeling a very assured, satisfied 0.632 sense of inner peace 18 Felt confident of a healing taking place in my body 0.573 15 Had creative ideas/solutions/insights come to my 0.559 awareness 9 Felt like my body was light/floating 0.505 8 Felt like I was observing my thoughts as a impartial 0.472 observer 25 Have felt I had contact with a higher power 0.462 13 Lost awareness of my body 0.438 0.344 17 Inner colours, sounds or visions were seen and/or heard 0.397 0.343 14 Had memories surface bringing and emotional response 0.346 0.309 2 Felt my body becoming heavy 0.753 10 Felt my body awareness was changing – as it parts of it 0.699 were ‘missing’ or it was expanding a little in size 3 Felt my temperature become warmer or cooler 0.607 0.334 4 Felt my body becoming soft and loose 0.575 20 Was aware of long periods of stillness, but recall was poor - not sure if awake or asleep but it felt different from sleep 6 Was aware of a stream of distracting thoughts 0.673 7 Felt calm and tranquil 0.312 -0.512 1 Felt self-conscious or frustrated 0.508 12 Was aware of short moments of stillness with no thoughts 0.306 -0.448 5 Was aware of concentrating on my meditation ‘technique’ 0.417

Note: Only loadings above 0.3 are displayed.

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5.3.3 Interpretation of the factors

During development of the questionnaire it was theorised that there would be three main categories of items: physical effects, cognitive/emotional effects and ‘expanded consciousness’ effects. The analysis carried out here supports a clearly interpretable solution using three factors when items loading below 0.30 and items showing cross loading were removed. Items loading on component one include those that may be termed ‘expanded consciousness’ effects. Items loading on component two include those referring to physical effects and those loading on component three refer to cognitive effects.

Tabachnick and Fidell (2001)recommend trying a solution with one more factor so a four-factor solution was attempted. However, this was not as interpretable (see Appendices K-5, K-6 and K-7).

Inspection of the items in Table 5-3 revealed that items 19, 24, 16, 22, 21, 23, 18, 15, 9, 8 and 25 loaded onto one component, items 2, 3, 4 and 10 loaded onto another and items 1, 5, 6, 7 and 12 onto another. The following items were removed in an effort to achieve simple structure: 13, 14, 17 and 20. Items were removed one at a time and the resulting solution checked each time (see Appendices K-8, K-9 and K-10). Item 13 was removed due to weak loading and lack of essential conceptual relevance to any particular factor. Items 14, 17, and 20 were removed due to weak loading, that is, values less than 0.4 (Tabachnick & Fidell, 2001).

The analysis was repeated with the items removed as reported above. The questionnaire containing the remaining 20 items is referred to as the Gawler Meditation Questionnaire-20 (GMQ-20). See Table 5-4 for the pattern matrix and Appendix K-11 for the structure matrix. These analyses appear to support the decision to retain three factors as the solution approaches simple structure, in which each factor is represented by only some variables and each variable loads significantly (with a correlation above 0.3) on only one factor (Thurstone, 1947).

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Table 5-4 Pattern matrix with20 items remaining (GMQ-20) Component

1 2 3

24 Have a developed a pervading sense of order within my 0.744 world 19 Experienced a sense of being in infinite space 0.705 21 Was aware of periods of stillness with a sense of expanded 0.665 consciousness 16 Felt like I was on a the threshold of a deeper experience 0.663 23 Have been left feeling a very assured, satisfied 0.644 sense of inner peace 22 Experienced what I describe as a mystical experience 0.649 9 Felt like my body was light/floating 0.555 8 Felt like I was observing my thoughts as a impartial 0.542 observer 15 Had creative ideas/solutions/insights come to my 0.541 awareness 25 Have felt I had contact with a higher power 0.540 18 Felt confident of a healing taking place in my body 0.538 2 Felt my body becoming heavy 0.762 10 Felt my body awareness was changing – as it parts of it 0.695 were ‘missing’ or it was expanding a little in size 3 Felt my temperature become warmer or cooler 0.630 0.438 4 Felt my body becoming soft and loose 0.573 6 Was aware of a stream of distracting thoughts 0.670 7 Felt calm and tranquil -0.566 5 Was aware of concentrating on my meditation ‘technique’ 0.526 1 Felt self-conscious or frustrated 0.470 12 Was aware of short moments of stillness with no thoughts -0.411

The results of the Oblimin rotation component correlation matrix showed low intercorrelations (0.261 for components one and two; -0.094 for components one and three; and -0.027 for components two and three) suggesting that the subscales should not be combined into one scale.

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5.3.4 Formation of subscales of GMQ-20

The items contained in the three subscales of the GMQ-20: Physical effects of meditation, Cognitive effects of meditation and Expanded consciousness effects of meditation are given in Table 5-5.

Table 5-5 GMQ-20 subscales Item number Physical effects of meditation 2 Felt my body becoming heavy 3 Felt my temperature become warmer or cooler 4 Felt my body becoming soft and loose 10 Felt my body awareness was changing – as it parts of it were ‘missing’ or it was expanding a little in size Cognitive effects of meditation 1 Felt self-conscious or frustrated 5 Was aware of concentrating on my meditation ‘technique’ 6 Was aware of a stream of distracting thoughts 7 Felt calm and tranquil 12 Was aware of short moments of stillness with no thoughts Expanded consciousness effects of meditation 8 Felt like I was observing my thoughts as a impartial observer 9 Felt like my body was light/floating 15 Had creative ideas/solutions/insights come to my awareness 16 Felt like I was on a the threshold of a deeper experience 18 Felt confident of a healing taking place in my body 19 Experienced a sense of being in infinite space 21 Was aware of periods of stillness with a sense of expanded consciousness 22 Experienced what I describe as a mystical experience 23 Have been left feeling a very assured, satisfied sense of inner peace 24 Have a developed a pervading sense of order within my world 25 Have felt I had contact with a higher power

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Item scores were summed to produce total values for each subscale. Items 1, 5, 6 were reversed in order to compute the Cognitive effects of meditation subscale with the resulting higher scores indicating greater cognitive effects and lower scores indicating lesser cognitive effects. Descriptive statistics for each subscale are presented in Table 5-6.

Table 5-6 Descriptive statistics for each subscale Number N Mean Median SD Min Max Cronbach’s Mean of items alpha inter-item in scale correlation Physical 4 90 2.17 2.25 0.47 1.00 3.00 0.61 0.29 effects of meditation Cognitive 5 89 2.12 2.20 0.32 1.4 3.00 0.57 0.22 effects of meditation Expanded 11 87 2 2 0.39 1.18 2.82 0.84 0.34 Conscious- ness effects of meditation Note: The scores in the table represent the summed item scores divided by the number of items.

Cronbach’s (1951) coefficient alpha values were calculated for the subscales and are given in Table 5-6. The value for the Physical effects of meditation subscale is 0.61, that for the Cognitive effects of meditation subscale is 0.57 and that for the Expanded Consciousness effects of meditation is 0.84. Thus only the Expanded consciousness effects of meditation subscale has good internal consistency, defined as a Cronbach alpha value above 0.7, while the mean inter-item correlations for all subscales fall within acceptable levels, that is, between 0.2 and 0.4. This is likely to be due to the small number of items in the other subscales, making adequate assessment difficult. It is suggested that while the scale has potential in the assessment of the effects of meditation it currently lacks sufficient psychometric rigour. In addition, the questionnaire used a Likert scale with only three response points. Gable and Wolf (1993) recommend a 5 or 6 point response format as most appropriate as fewer results 243 Chapter Five: Evaluation of the Gawler Meditation Questionnaire

in loss of response discrimination. In order for the scale to be used for clinical and research purposes it will be necessary to expand the number of items and trial the questionnaire on a larger number of people.

5.3.4.1 Subscale intercorrelations

In order to investigate the overlap between the subscales, a Spearman correlation matrix was generated for the subscales. This is given in Table 5-7.

Table 5-7 Spearman correlation coefficients between subscales at program completion Physical effects Cognitive Expanded of meditation effects of consciousness effects meditation of meditation Physical effects of 1.000 0.116 0.151 meditation

Cognitive effects of - 1.000 0.328** meditation

Expanded - - 1.000 Consciousness effects of meditation Note: **p<0.01 Pairwise deletion of missing data was conducted with ns ranging from 84 to 90.

A low correlation was observed between the Cognitive effects of meditation and Expanded consciousness effects of meditation subscales. This suggests that the three subscales are tapping different aspects of meditation and should be considered separately. The combination of subscales into one measure is not supported by this data.

5.3.5 Correlations with other measures

An important part of exploring a scale’s construct validity involves assessing the pattern of correlations between the new scale and other existing measures. Gable and Wolf (1993) note that it is the direction and magnitude of the relationships in the light of theoretical expectations that is important.

244 Chapter Five: Evaluation of the Gawler Meditation Questionnaire

Beneficial effects of meditation on anxiety, depression and general wellbeing have been reported in the literature (see Section 1.8.5). We hypothesised that those with higher scores on the individual meditation subscales, pointing to greater effects of meditation and therefore potentially better “quality” meditation would show better mood, coping and quality of life. Spearman rank correlation coefficients were calculated to examine the links between meditation subscale scores and scores on the measures collected at program completion.

5.3.5.1 Physical effects of meditation subscale

In the context of research supporting the effects of meditation on physical wellbeing (Jevning, Wallace, & Beidebach, 1992; Smith, 2001) it was hypothesised that scores on the Physical effects of meditation subscale would be correlated with POMS Vigor- Activity, Fatigue-Inertia and FACIT-Sp Physical wellbeing. However, scores on the Physical effects of meditation subscale correlated only very weakly with POMS Vigor- Activity and also with salivary cortisol levels. No other substantial correlations were observed (see Table 5-8). This may be because there are too few items in this subscale and they tap only a narrow range of experience within meditation. It is proposed that broadening the range of items and including everyday life experiences would contribute to greater construct validity.

5.3.5.2 Cognitive effects of meditation subscale

As some evidence suggests that meditation is linked to lower anxiety (Kabat-Zinn et al., 1992; Krisanaprakornkit, Krisanaprakornkit, Piyavhatkul, & Laopaiboon, 2006) it was hypothesised that greater cognitive effects as measured by the Cognitive effects of meditation subscale would be associated with lower levels of anxiety as measured by POMS Tension-Anxiety, Mini-MAC Anxious Preoccupation and FACIT-Sp Emotional wellbeing. In addition, item 7 in the subscale “I felt calm and tranquil” might be expected to be correlated negatively with anxiety and positively with emotional wellbeing.

In the context of research suggesting that meditation has been linked to improved mood, less rumination and an improved ability to view the mind’s operations with non- judgemental acceptance (Ramel, Goldin, Carmona, & McQuaid, 2004; Teasdale, Segal, & Williams, 1995) it was hypothesised that scores on the Cognitive effects of meditation

245 Chapter Five: Evaluation of the Gawler Meditation Questionnaire

subscale would be correlated with lower scores on POMS Depression-Dejection, Anger- Hostility and Confusion Bewilderment. Spearman correlation coefficients were calculated and are shown in Table 5-8. Scores on items on the Cognitive effects of meditation subscale correlated significantly negatively with the following subscales: POMS Tension-Anxiety, POMS Confusion-Bewilderment and Mini-MAC Anxious Preoccupation, and significantly positively with FACIT-Sp Emotional wellbeing and Spiritual wellbeing (See Table 5-8). Very weak correlations were found with POMS TMD and overall FACIT-Sp. The pattern of correlations shown provides some support for the validity of the Cognitive effects of meditation subscale. Participants who experience greater cognitive effects of meditation have lower scores on the measures tapping the cognitive aspects of mood disturbance and higher scores on the measures tapping greater emotional wellbeing.

246 Chapter Five: Evaluation of the Gawler Meditation Questionnaire

Table 5-8 Spearman rank order correlation coefficients between meditation questionnaire subscales and program completion measures Physical Cognitive Expanded effects of effects of consciousness effects meditation meditation of meditation POMS TMD -0.213 -0.277* -0.246* Tension-Anxiety -0.130 -0.402*** -0.264* Depression-Dejection 0.117 -0.178 -0.176 Anger-Hostility -0.138 -0.054 -0.018 Vigor-Activity 0.257* 0.124 0.216 Fatigue-Inertia 0.056 -0.204 -0.201 Confusion-Bewilderment -0.059 -0.446** -0.289** Mini-MAC Helplessness-Hopelessness 0.028 -0.096 0.083 Anxious Preoccupation -0.021 -0.318** -0.143 Fighting Spirit 0.083 -0.019 -0.058 Cognitive Avoidance 0.109 -0.182 -0.047 Fatalism 0.118 0.116 0.038 FACIT-Sp -0.008 0.247* 0.305** FACT-G -0.031 -0.179 -0.199 Physical wellbeing -0.076 0.050 0.186 Social wellbeing 0.079 -0.007 -0.036 Emotional wellbeing -0.037 0.374** 0.201 Functional wellbeing -0.122 0.060 0.191 Spiritual wellbeing 0.057 0.311** 0.347** Cortisol -0.244* -0.005 0.016 * p<0.05; ** p<0.01; *** p<0.001 Pairwise deletion of missing data was conducted with ns ranging from 69 to 90.

5.3.5.3 Expanded consciousness subscale

As the items in the Expanded consciousness effects of meditation subscale tap some of the more unusual experiences of meditation, which are described using spiritual terms, we hypothesised that higher scores on the Expanded Consciousness effects of meditation 247 Chapter Five: Evaluation of the Gawler Meditation Questionnaire

subscale would correlate with greater Spiritual wellbeing. It was observed that scores on items on this subscale correlated with overall FACIT-Sp and Spiritual wellbeing (see Table 5-8). Weak correlations with POMS TMD, POMS Tension-Anxiety and Confusion-Bewilderment were also observed. The pattern of correlations here are expected in the context of some of the language used to describe items on the Expanded consciousness effects of meditation subscale, such as, “Have felt I had contact with a higher power” and “Experienced what I describe as a mystical experience”. Participants who have experienced and are more drawn to the spiritual aspects of meditation are likely to score more highly on the Spiritual wellbeing subscale. In these people, such experiences appear to make an important contribution to QOL, with those who score more highly on the Expanded consciousness effects of meditation subscale reported higher overall QOL as measured by the FACIT-Sp.

5.4 Summary

In the light of results presented in previous chapters suggesting that the quality of the meditation experience is linked to greater wellbeing it was considered useful to explore more deeply the experience of meditation. The purpose of this chapter was to report the scale evaluation of the Gawler meditation questionnaire. It also covers a review of the steps involved in the development of a psychometric instrument and a discussion of some of the theoretical, practical and statistical issues involved in this process including factor analysis, formation of subscales and an investigation of reliability and validity of the resulting GMQ-20.

Both visual inspection of the items and the process of factor analysis suggested that the Gawler meditation questionnaire be divided into 3 subscales, namely the Physical effects of meditation, the Cognitive effects of meditation and the Expanded Consciousness effects of meditation subscales. However, only the Expanded consciousness effects of meditation subscale showed good internal consistency, defined as a Cronbach alpha value above 0.7. This is likely to be due to the small number of items in the other subscales, making adequate assessment difficult. An examination of the correlations between Effects of Meditation subscale scores and scores on the POMS, Mini-MAC and FACIT-Sp revealed that scores on the Cognitive effects of meditation subscale correlated significantly (above 0.30) with the following subscales: POMS Tension-Anxiety, POMS Confusion-Bewilderment, Mini-MAC Anxious Preoccupation,

248 Chapter Five: Evaluation of the Gawler Meditation Questionnaire

FACIT-Sp Emotional wellbeing and Spiritual wellbeing. Scores on the Expanded Consciousness effects of meditation subscale correlated with overall FACIT-Sp and Spiritual wellbeing. These analyses suggest that while the scale has potential in the assessment of the effects of meditation it currently lacks sufficient psychometric rigour due to low Cronbach alpha values for the Cognitive effects of meditation and Physical effects of meditation subscales and the small number of items in these subscales.

Evaluation of the Gawler Meditation Questionnaire was carried out in order to use the instrument as a tool to investigate the links between the meditation experience and adjustment in those participating in the three, six and twelve-month follow-up parts of the study described in Chapters Six and Seven.

A further limitation of the Gawler meditation questionnaire is that it is restricted to the experiences within meditation. It is proposed that, if meditation is to have beneficial effects, the impact of the practice on everyday life will be important. Thus, in order for the scale to be used for clinical and research purposes it will be necessary to expand the number of items to include everyday life effects and trial the questionnaire on a larger number of people. A further limitation is that there is an inherent bias in using a questionnaire to assess meditation which has been developed by a proponent of the practice. Further development of a questionnaire assessing the effects of meditation is discussed in Chapter Eight.

249 Chapter Six: Three-month follow-up

6 CHAPTER SIX

Three-month follow-up

6.1 Introduction

The data presented in Chapter Four suggest that participation in the program conducted by The Gawler Foundation has beneficial effects on mood, quality of life and stress hormone levels. An important component of the program is meditation and a deeper exploration of the meditation experience presented in Chapter Five provides some support for the hypothesis that the quality of the meditation experience is linked to greater wellbeing.

However, a program such as the one in the current study is most likely to bring real benefits if participants learn skills and techniques that can subsequently be of use in their everyday lives. Thus, three months after participants had left the program, follow-up data was collected by post in order to address the following research questions:

• To what extent are people complying with The Gawler Foundation program recommendations at three-month follow-up?

• Are the improvements seen after program completion maintained?

• Does compliance with the recommendations of program affect mood, coping and quality of life?

• Are links between meditation experience and adjustment seen at follow-up?

Within the scope of the study it was not possible to systematically identify all those participants who died since leaving the program. This information was only available if family directly contacted either the researcher or The Gawler Foundation (who then passed the information to the researcher). Similarly, with withdrawal, only those who directly informed the researcher were known to have withdrawn. While it would have been useful to follow-up participants further when they did not return follow-up questionnaires this was not permitted by the Ethics Committee of the University. 250 Chapter Six: Three-month follow-up

Thus, it is probable that follow-up data is biased in the sense that it is more likely to have been obtained from those who found the program beneficial. We hypothesised that someone who did not find the program useful and did not therefore comply with the recommendation would be less likely to participate in follow-up.

Figure 6-1 Participation data for study

Time 1 (Baseline) data

(n=112)

Time 2 (10-day program completion) data

(n=112)

Time 3 (three-month follow-up) Dropped out (n=31)

(n=69) Deceased (n=12)

Time 4 (six-month follow-up) Dropped out (n=16)

(n=51) Deceased (n=2)

Time 5 (12 month follow- up) Dropped out (n=16)

(n=33) Deceased (n=2)

251 Chapter Six: Three-month follow-up

6.2 Comparison of follow-up respondents and non- respondents at three-month follow-up

Follow-up questionnaires were sent to all participants three months after program completion. At this time, 69 responses were received, 26 from men and 43 from women. At three-month follow-up, 12 participants were reported as having died and four had formally withdrawn from the study.

In order to investigate how representative of the original sample three-month follow-up respondents were, baseline characteristics of respondents and non-respondents were analysed. Chi square tests were used for the categorical variables of gender, relationship status, education level, metastatic disease and current treatment at baseline (see Table 6-1). T-tests and Mann-Whitney U tests were used for continuous variables where appropriate.

Table 6-1 Differences in baseline characteristics in respondents and non-respondents at three- month follow-up (categorical variables) Chi square df p

Gender 1.36 1 0.24

Relationship status 1.25 1 0.26

Education level 0.08 1 0.782

Metastatic disease at baseline 0 1 0.987

Current treatment at baseline 1.48 1 0.22

No differences in baseline characteristics were found between respondents and non- respondents at three months. However, age was significantly higher among respondents (M=53.30, SD=9.35) than among non-respondents (M=48.6, SD=11.0; t(108)= -2.39, p=0.019). Comparisons of respondents and non-respondents in the program completion Profile of Mood States (POMS), Mini-Mental Adjustment to Cancer (Mini-MAC) and 252 Chapter Six: Three-month follow-up

Functional Assessment of Chronic Illness Therapy (FACIT-Sp) measures are given in Table 6-2 and Table 6-3.

Table 6-2 Comparisons of normally distributed program completion measures in respondents and non-respondents to three-month follow-up Respondents Non-respondents M SD n M SD n t df p POMS Total mood -7.40 17.04 55 -1.31 20.15 32 1.50 85 0.137 disturbance (TMD) Tension- 0.84 3.49 61 1.50 4.43 36 0.77 60.57 0.445 Anxiety Anger-Hostility 3.21 2.78 62 4.50 4.44 38 1.78 98 0.077 Vigor-Activity 20.83 5.73 65 20.62 7.27 39 -0.17 102 0.867 Mini-MAC Anxious 15.00 4.23 66 16.56 3.95 39 1.88 103 0.063 Preoccupation Cognitive 7.79 2.53 67 8.25 2.80 40 0.87 105 0.385 Avoidance Fatalism 14.62 2.61 66 14.33 2.41 40 -0.58 104 0.562 FACIT-Sp 127.20 13.45 68 125.82 14.03 40 -0.51 106 0.614 FACT-G 86.57 11.98 68 91.16 9.45 40 2.07 106 0.041 Emotional 20.31 3.15 68 20.23 2.71 40 -0.14 106 0.889 wellbeing Functional 22.56 4.26 68 20.89 4.93 41 -1.86 107 0.066 wellbeing Spiritual 36.81 7.11 68 39.13 5.57 40 1.76 106 0.081 wellbeing

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Table 6-3 Differences in non-normally distributed program completion measures in respondents and non-respondents to three-month follow-up Respondents Non-respondents

Mean ranks n Mean ranks n z p

POMS

Depression-Dejection 47.53 61 53.96 38 -1.09 0.276

Anger-Hostility 47.65 62 55.14 38 -1.27 0.206

Fatigue-Inertia 44.80 64 63.82 39 -3.15 0.002

Mini-MAC

Helplessness-Hopelessness 53.75 68 57.07 41 -0.58 0.561

Fighting Spirit 48.06 65 59.90 39 -2.01 0.045

FACIT-Sp

Physical wellbeing 61.00 68 45.05 41 -2.57 0.010

Social wellbeing 53.97 68 55.40 40 0.56 0.818

These analyses showed that respondents and non-respondents did not differ in the scores recorded on program completion for the POMS TMD, Depression-Dejection, Tension Anxiety and Vigor-Activity, Mini-MAC Anxious Preoccupation, Helplessness-Hopelessness and Fighting Spirit and FACIT-Sp. However, FACT G on program completion was lower among respondents than among non-respondents. POMS Fatigue-Inertia and FACIT-Sp Physical wellbeing at program completion was significantly higher in the non-respondents at program completion. Thus, those with poorer physical wellbeing at program completion were less likely to respond to the three-month follow-up questionnaire.

254 Chapter Six: Three-month follow-up

Table 6-4 Differences in change scores in respondents and non-respondents at three months Respondents Non-respondents M SD n M SD n t df p POMS TMD 18.87 20.67 55 14.75 27.11 32 -0.80 85 0.427 Tension-Anxiety 4.44 5.47 61 4.71 5.52 35 0.23 94 0.816 Depression- 2.62 6.61 61 2.83 6.48 37 0.16 96 0.875 Dejection Anger-Hostility 3.85 4.99 62 3.86 6.34 37 0.01 97 0.993 Vigor-Activity -3.51 6.45 65 -2.08 7.17 38 1.04 101 0.301 Fatigue-Inertia 2.67 5.37 63 1.03 5.99 38 -1.43 99 0.158 Confusion- 1.81 4.39 62 2.38 3.91 37 0.65 97 0.516 Bewilderment Mini-MAC Anxious 3.08 3.37 66 2.69 4.55 39 -0.49 103 0.623 Preoccupation Helplessness- 1.91 2.79 68 1.49 2.38 41 -0.81 107 0.42 Hopelessness Fighting Spirit -0.52 1.81 65 -1.10 1.86 39 -1.56 102 0.121 Cognitive 0.85 2.07 67 0.51 2.65 39 -0.73 104 0.467 Avoidance Fatalism -0.38 1.97 44 -0.39 2.31 38 -0.04 102 0.970 FACIT-Sp -11.52 15.11 68 -11.02 14.25 39 0.17 105 0.864 FACT-G -1.82 16.14 68 -8.92 16.22 39 -2.18 105 0.031 Physical wellbeing -1.57 3.25 68 -0.66 3.03 39 1.43 105 0.156 Social wellbeing 0.09 3.34 68 -0.26 2.59 38 -0.56 104 0.580 Emotional wellbeing -1.68 2.77 67 -1.84 2.58 38 -0.28 103 0.778 Functional -2.27 4.32 68 -2.13 4.22 39 0.17 105 0.866 wellbeing Spiritual wellbeing -5.37 7.15 67 -5.52 7.14 39 -0.102 104 0.919

255 Chapter Six: Three-month follow-up

Analysis of the change scores from baseline to program completion (see Table 6-4) showed that those whose change in FACT-G showed reduction in QOL after the program were less likely to continue participation in the study. Overall, it is likely that those with poorer health status and those who experienced a decrease in QOL after the intervention were less likely to continue to participate in the study. This may reflect worsening disease or lack of effectiveness of the program.

6.3 Compliance with program recommendations at 3- month follow-up

6.3.1 Meditation

At 3 months 58 (84.1%) people reported a current meditation practice while 7 (10.1%) did not. For 56 people (96.6% of those meditating) this included the stillness and visualization meditation methods taught at The Gawler Foundation and 48 (85.7%) reported benefits in everyday life. For the 31 participants who gave details of the minutes per week spent in meditation, the mean (SD) time spent meditating was 482 (269) minutes per week, the median time was 420 minutes, the minimum time was 75 minutes and the maximum time was 1260 minutes. Table 6-5 shows the self-rated proficiency at meditation on a scale of 1 (minimum) to 10 (maximum) for the 55 participants who gave this information.

256 Chapter Six: Three-month follow-up

Table 6-5 Self-rated proficiency at meditation at three-month follow-up Self-rated proficiency N Percent

1 1 1.8

2 1 1.8

3 1 1.8

4 5 9.1

5 10 18.1

6 11 20.0

7 14 25.5

8 10 18.1

9 2 3.6

Total 55 100.0

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6.3.2 Diet

Table 6-6 shows the number of days participants reported following dietary measures in the days prior to answering the questionnaire.

Table 6-6 Number of participants who comply with dietary recommendations at three-months Dietary measure Every Most Few No day days days days

Avoid foods high in fat 49 15 1 0

Avoid foods high in sugar 48 17 0 0

Avoid foods high in salt 50 15 0 0

Avoid meat 36 17 9 3

Avoid alcohol 45 13 5 2

Avoid caffeine 55 7 1 2

Avoid cooking techniques such as smoking and 60 5 0 0 barbecuing

Avoid processed foods containing 46 19 0 0 sweeteners and additives

Include fresh vegetable and fruit juices 58 4 1 2

Include high fibre foods 52 9 3 1

Include organic foods 45 8 9 3

All those who responded to this section of the questionnaire at three-month follow-up were in the high compliance with dietary recommendations category, that is, complied with dietary recommendation on all or most days (see Section 3.4.6). 258 Chapter Six: Three-month follow-up

6.3.3 Exercise

Information about exercise participation is given in Table 6-7. At three months, only 17 (25.4%) and 14 (20.9%) of people reported participating in hard or very hard exercise respectively. As cancer and treatment might be expected to affect ability to exercise participants were asked if their level of exercise was typical, which it was for 29 (43.3%) participants (See Table 6-8).

Table 6-7 Exercise participation at 3-month follow-up n Mean Std. Deviation Median Minimum Maximum

Moderate hours 55 8.5 9.6 6.0 1 40

Hard hours 17 9.4 8.6 7.0 1 30

Very hard hours 14 5.0 3.2 4.8 1 14

Table 6-8 Typical level of exercise at 3-month follow-up Typical level of exercise N Percent

Less 22 32.8

More 9 13.4

Same 29 43.3

Unknown 7 10.4

In summary, analysis of follow-up data showed high compliance with program recommendations. However, it is likely that those who are complying less well are also less likely to participate in follow-up.

259 Chapter Six: Three-month follow-up

6.4 Mood, coping and QOL at three-month follow-up

In order to assess mood, coping and QOL at three-month follow-up and to investigate whether the improvements seen in these measures at program completion were maintained, participants were asked to complete the POMS, Mini-MAC and FACIT-Sp measures. These are given in Appendix L. Changes in scores from program completion to three- month follow-up were calculated for all measures and are in Appendix L. In all cases, scores at three-month follow-up were subtracted from program completion scores.

6.4.1 Comparison of program completion and 3-month change scores

As mentioned in section 3.6.6, the scores of the POMS Depression-Dejection, Anger- Hostility and Fatigue; Mini-MAC Helplessness-Hopelessness and Fighting Spirit and FACIT-Sp, Physical wellbeing and Social wellbeing subscales were not normally distributed and non-parametric statistics were used for these variables. Paired sample t-tests and Wilcoxon-signed rank tests were carried out where appropriate to compare scores at program completion and three months (see Table 6-9 and Table 6-10).

260 Chapter Six: Three-month follow-up

Table 6-9 Program completion and three-month follow-up comparisons for normally distributed measures Program 3-month follow- completion up

M SD M SD n t df p

POMS

TMD -8.06 16.60 2.45 25.51 53 3.00 52 0.004*

Tension-Anxiety 0.71 3.47 2.17 5.13 59 -2.15 58 0.036*

Vigor-Activity 20.80 5.77 17.23 6.29 64 -3.79 63 <0.001*

Confusion- 1.16 3.64 1.87 3.69 63 -1.44 62 0.156 Bewilderment

Mini-MAC

Anxious 14.94 4.26 15.88 4.49 64 -2.15 63 0.036* preoccupation

Cognitive 7.80 2.51 7.87 2.58 64 -0.35 63 0.726 Avoidance

Fatalism 14.72 2.58 14.96 2.73 64 0.90 63 0.371

FACIT-Sp

FACIT-Sp 127.17 13.54 123.96 16.04 66 1.74 66 0.087

FACT-G 86.31 12.03 87.64 11.73 66 0.66 65 0.514

Emotional wellbeing 20.23 3.16 20.43 2.72 66 0.53 65 0.602

Functional 22.55 4.29 21.52 5.18 67 2.06 66 0.043* wellbeing

Spiritual wellbeing 36.81, 7.11 36.22 7.43 68 0.84 67 0.405

Note: * Significant at p<0.05 or greater

261 Chapter Six: Three-month follow-up

Table 6-10 Program completion and three-month follow-up comparisons for non-normally distributed measures Negative ranks (3-month Positive ranks (3- follow-up completion) program completion)

Mean ranks n Mean ranks n z p

POMS

Depression- 26.44 26 24.48 24 -0.485 0.628 Dejection

Anger-Hostility 21.65 17 27.48 33 -2.610 0.009*

Fatigue-Inertia 24.25 16 25.36 33 -2.25 0.025*

Mini-MAC

Helplessness- 14.94 9 18.42 25 -2.814 0.005* Hopelessness

Fighting Spirit 22.25 34 28.58 13 -2.071 0.038*

FACIT-Sp

Physical 29.10 34 17.84 16 -3.426 0.001* wellbeing

Social 30.28 30 29.71 29 -0.178 0.859 wellbeing

Note: * Significant at p<0.05 or greater

Scores on the POMS subscales of Confusion-Bewilderment and Depression-Dejection were not significantly different three months after program completion whereas mean POMS TMD, Tension-Anxiety, Anger-Hostility and Fatigue –Inertia were significantly higher after 3 months. The score on the Vigor-Activity subscale was significantly reduced after three months (see Table 6-9 and Table 6-10). 262 Chapter Six: Three-month follow-up

Analysis showed a significant increase in Mini-MAC Anxious Preoccupation and Helplessness-Hopelessness three months after program completion. Scores on the Cognitive Avoidance and Fatalism subscales were not significantly different after three months. Scores on the Fighting Spirit subscale were reduced after three months (see Table 6-9 and Table 6-10). FACIT-Sp, FACT-G, Emotional and Spiritual dimensions of QOL improvements were unchanged from program completion to three-month follow-up. Physical and Functional wellbeing was reduced and Social wellbeing unchanged (see Table 6-9 and Table 6-10).

Overall it seems that improvements in mood disturbance and anxiety after the program are not maintained at three-month follow-up. However, QOL improvements are mostly maintained even though Physical wellbeing and Functional wellbeing appeared to decline after program completion. However, analysis of this data is considerably limited by dropouts and lack of accurate medical data. In addition, many participants enter the program a considerable time after diagnosis and are likely to have undergone marked changes in adjustment and coping before attendance at The Gawler Foundation.

Mullens, McCaul, Erickson and Sandgren (2004) found that cancer patients with greater distress levels were more likely to make behavioural changes. They concluded that distress generates coping behaviours rather than mediating the stressor/distress relationship. Some research suggests that those with higher levels of distress are more likely to complete psychosocial treatment programs (Everson, 1999; Worden & Weisman, 1984). Gilbar and Neuman (2002) examined the similarities and differences in patterns of psychological distress, coping strategies and social support of cancer patients who dropped out of a psychosocial support program with those who completed the program. They reported that patients with higher levels of depression and acceptance coping tended to complete the program. However this study involved newly diagnosed patients and they comment that the timing of the therapy may have played a part in the high dropout rate due to side-effects of treatment and preoccupation with treatment and other life decisions. Thus, it is possible that distress and worsening disease may motivate people to maintain compliance with program recommendations and an attitude of Fighting Spirit. Brown et al. (2000) found that in patients with metastatic melanoma in their last year of life, active coping strategies

263 Chapter Six: Three-month follow-up

increased. While patients worked hard to actively cope with their disease, they experienced increasing levels of tiredness and decreased physical and functional wellbeing. In that study, avoidant coping was not associated with psychological adjustment.

However, in the present study, there was no significant correlation between Fighting Spirit and POMS TMD at three-month follow-up (Spearman rho=-0.076, p=0.555) or between Fighting Spirit and FACIT-Sp (Spearman rho=0.132, p=0.291).

6.4.2 Changes in mood, coping and QOL over time

In order to further explore changes in mood, coping and QOL over time, graphs were plotted of mean scores of POMS TMD, FACIT-Sp and FACT-G. Previous analyses have shown Helplessness-Hopelessness, Anxious Preoccupation and Spiritual wellbeing to be linked to mood disturbance and QOL. Thus, graphs of changes in these measures are also given (see Figure 6-2 to Figure 6-7).

Figure 6-2 Change in mean POMS TMD scores over three months

264 Chapter Six: Three-month follow-up

Figure 6-3 Change in mean FACIT-Sp scores over three months

Figure 6-4 Change in mean FACT-G scores over three months

265 Chapter Six: Three-month follow-up

Figure 6-5 Change in mean Helplessness-Hopelessness scores over three months

Figure 6-6 Change in mean Anxious Preoccupation scores over three months

266 Chapter Six: Three-month follow-up

Figure 6-7 Change in mean Spiritual wellbeing scores over three months

The graphs presented in Figure 6-2 to Figure 6-7 show that even while the improvements seen in POMS TMD, FACIT-Sp, Helplessness-Hopelessness, Anxious Preoccupation and Spiritual wellbeing after program completion are not maintained at three-month follow-up, mean scores are still higher than when participants entered the program. This fits with anecdotal reports of participants, some of whom have described being on a “high” after the program finishes, something which lessens as they re-enter normal lives, with all the demands and challenges that this entails. Inevitably, participants report that complying with program recommendation is not always easy. However, these analyses suggest that some of the benefits remain at follow-up.

Results presented in Section 6.4.1 and Figure 6-4, which shows changes in FACT-G over three months, suggest that the QOL improvements seen after program completion are mostly maintained even though physical health appeared to decline at three-month follow- up. In order to further explore the effects on these measures graphs of mean scores of Physical wellbeing and POMS Vigor-Activity were plotted (see Figure 6-8 and Figure 6-9).

267 Chapter Six: Three-month follow-up

Figure 6-8 Change in mean Physical wellbeing scores over three months

Figure 6-9 Change in mean Vigor-Activity scores over three months

268 Chapter Six: Three-month follow-up

The graphs presented above suggest that measures of physical health are largely unchanged from baseline whereas those assessing emotional health and overall QOL are significantly increased from baseline. This may well reflect the phenomenon of response shift discussed in section 4.2.3, in which a modification of criteria for satisfactory QOL as health status changes (Rapkin & Schwartz, 2004; Schwartz & Sprangers, 1999). This is likely to be a reflection of adaptive coping. As mentioned in section 4.2.3, this is for many people, a desirable outcome of an intervention such as this one.

However, lack of a control group is a methodological weakness making it difficult to draw conclusions in the follow-up part of the study with regression towards the mean, maturation and natural history of the illness complicating the picture.

6.4.3 Predominant coping styles at three-month follow-up

As in section 3.5.2 predominant coping styles were assessed using z scores and these were then compared with baseline and program completion values (see Table 6-11). The results showed the most predominant coping style at three months was Fighting Spirit, with Anxious Preoccupation the next most common. This can be compared with program completion when Fatalism was the most predominant style, closely followed by Fighting Spirit.

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Table 6-11 Predominant coping styles among participants at baseline and program completion Baseline Program completion Three-month follow-up

Frequency Percent (of Frequency Percent (of Frequency Percent (of total total total respondents at respondents at respondents at time point) time point ) time point)

Helplessness- 18 17.5 18 17.5 9 13.6 Hopelessness

Anxious 20 19.4 19 18.4 15 22.7 Preoccupation

Fighting Spirit 25 24.3 21 20.4 19 28.8

Cognitive 17 16.5 20 19.4 11 16.7 Avoidance

Fatalism 19 18.4 22 21.4 10 15.1

None 4 3.9 3 2.9 2 3.0

Missing 9 9 46

Total 103 100.0 112 100. 0 66 100.0

At three-month follow-up a greater proportion of participants reported predominant coping styles of Anxious Preoccupation and Fighting Spirit and a lesser number reported predominant styles of Helplessness-Hopelessness, Cognitive Avoidance and Fatalism. This may provide some further support for the proposal mentioned above that higher distress motivates coping behaviours and possibly compliance with program recommendations. Nordin and Glimelius (1998) point out that most studies do not analyse changes in coping in individual participants. It may be that some coping styles are more likely to vary in individuals over time while others remain relatively stable. They reported that the majority of patients who reported a Helpless-Hopeless coping style at baseline did not report this at follow-up whereas individuals reporting Fighting Spirit at baseline were also likely to report this at follow-up. In this sample only 13 participants reported the same predominant coping style at baseline, program completion and three-month follow-up. 270 Chapter Six: Three-month follow-up

A Kruskal-Wallis analysis was carried out to assess links between POMS TMD according to predominant coping style. The results showed significant differences (chi square=16.53, df=5, p=0.005). Inspection of the mean ranks for the groups showed that those with a predominant coping style of Fatalism had the lowest POMS TMD scores while those with a coping style of Anxious Preoccupation showed the highest POMS TMD scores. The results are presented in Table 6-12.

Table 6-12 Comparison of POMS TMD according to predominant coping style Predominant coping style N Mean rank

Helplessness-Hopelessness 8 40.81

Anxious Preoccupation 13 45.50

Fighting Spirit 18 25.86

Cognitive Avoidance 11 27.14

Fatalism 10 25.15

FACIT-Sp also varied according to predominant coping style (chi square=22.16, df=5, p<0.001). Inspection of the mean ranks for the groups showed that those with a predominant coping style of Fatalism had the highest FACIT-Sp scores while those with a coping style of Anxious Preoccupation showed the lowest FACIT-Sp scores. The results are presented in Table 6-13.

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Table 6-13 Comparison of FACIT-Sp scores according to predominant coping style Predominant coping style N Mean rank

Helplessness-Hopelessness 9 27.72

Anxious Preoccupation 15 15.80

Fighting Spirit 18 39.14

Cognitive Avoidance 11 35.18

Fatalism 10 48.25

Thus, it is possible that a coping style of Fatalism which in the Mini-MAC is measured by items such as “I’ve put myself in the hands of God”, “I count my blessings” and “At the moment I take one day at a time” may reflect a greater acceptance of a situation and a greater ability to focus on the present, aspects of coping that might be expected to be affected by meditation and to be associated with reductions in anxiety and greater subjective QOL.

6.4.4 Correlations between coping and mood and QOL

In Sections 3.6.14 and 3.6.15 the coping styles of Helplessness-Hopelessness and Anxious Preoccupation and Fighting Spirit were linked to mood disturbance and QOL. It was hypothesised that this would be the same at three-month follow-up. Spearman rank-order correlation coefficients were used in all analyses reported below.

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Table 6-14 Correlation between coping and mood disturbance at three-month follow-up Helplessness- Anxious Fighting Hopelessness Preoccupation Spirit POMS TMD 0.370** 0.420** -0.076 Tension-Anxiety 0.352** 0.348** -0.062 Depression-Dejection 0.391** 0.471*** -0.052 Anger-Hostility 0.235 0.299* 0.078 Vigor-Activity -0.265 -0.288* 0.113 Fatigue-Inertia 0.247* 0.315** 0.041 Confusion- 0.442*** 0.443*** -0.002 Bewilderment Note: * p<0.05; ** p<0.01; *** p<0.001 Pairwise deletion of missing data was conducted with ns ranging from 61 to 68

Table 6-15 Correlation between coping and FACIT-Sp at three-month follow-up Helplessness- Anxious Fighting Hopelessness Preoccupation Spirit FACIT-Sp FACIT-Sp -0.495*** -0.462*** 0.132 FACT-G -0.452*** -0.452*** 0.088 Physical wellbeing -0.306* -0.301* -0.071 Social wellbeing -0.049 -0.033 0.057 Emotional -0.666*** -0.722*** 0.254* wellbeing Functional -0.414** -0.358** 0.178 wellbeing Spiritual wellbeing -0.389** -0.304* 0.171 Note: * p<0.05; ** p<0.01; *** p<0.001 Pairwise deletion of missing data was conducted with ns ranging from 64 to 68

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Analyses of the results presented in Table 6-14 and Table 6-15 suggest that, as at baseline, the coping styles of Anxious Preoccupation and Helplessness-Hopelessness appear to be particularly linked to mood disturbance and QOL. Fighting Spirit seems to play less of a role. This provides further support for the hypothesis that Helplessness-Hopelessness and Anxious Preoccupation may represent measures of adjustment or state coping rather than trait coping which may be represented by the other Mini-MAC measures (Grassi et al., 2005; Nordin & Glimelius, 1998). In a study of European cancer patients, Grassi et al. (2005) found links between psychological distress and Anxious Preoccupation and Helplessness-Hopelessness but not Cognitive Avoidance, Fatalism and Fighting Spirit.

In section 3.6.15 it was found that Fatalism and Spiritual wellbeing were significantly correlated and it has been pointed out that the mini-MAC Fatalism subscale may measure coping functions such as religious coping and faith, positive reappraisal and acceptance and may be correlated with spirituality (Fitzpatrick, 2000; Ho, Fung, Chan, Watson, & Tsui, 2003). In light of this, we hypothesized that Fatalism would be linked to Spiritual wellbeing and this was found to be the case (Spearman rho=0.529, p<0.001).

Similarly to baseline, at three-month follow-up those participants who scored more highly on the Spiritual wellbeing subscale of the FACIT-Sp were more likely to score lower on the Helplessness-Hopelessness subscale of the Mini-MAC. Thus, unlike some other studies which have concluded that women low in hope find comfort in religion (Stanton et al., 2000), in the current study Spiritual wellbeing seems to be linked to lower hopelessness.

6.4.5 Comparisons between those who worsen and those who improve

In order to explore factors that might be linked to improvements or deteriorations in mood and quality of life the sample was divided into those who improved from program completion to three-month follow-up and those who worsened. Analysis showed that from program completion to three-month follow-up, POMS showed greater mood disturbance in 34 people and lower mood disturbance in 19. Baseline characteristics of those whose POMS TMD improved from program completion to three-month follow-up and those whose POMS had worsened were compared using chi square tests for the categorical

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variables of gender, relationship status, education level, metastatic disease and current treatment at baseline (see Table 6-16). T-tests and Mann-Whitney U tests were used for continuous variables where appropriate.

Table 6-16 Differences in baseline characteristics in those whose POMS TMD improved and those whose POMS TMD worsened at three-month follow-up (categorical variables) Chi square df p

Gender 0.52 1 0.472

Relationship status 0 1 0.989

Education level 0.08 1 0.784

Metastatic disease at baseline 0 1 0.990

Current treatment at baseline 0.15 1 0.700

There was no difference in age between those whose POMS worsened and those whose POMS improved (Improve M=53.21, SD=7.93; Worsen M=52.29, SD=10.75; t(51)=-0.33, p=0.747). Time from diagnosis was also not significantly different between the two groups (Improve M=35.89, SD=48.22; Worsen M=27.65, SD=41.88; t(51)=-0.65, p=0.518).

Baseline characteristics of those whose FACIT-Sp improved from program completion to 3-month follow-up and those whose FACIT-Sp had worsened were also compared using chi square tests for the categorical variables of gender, relationship status, education level, metastatic disease and current treatment at baseline (see Table 6-17). T-tests and Mann- Whitney U tests were used for continuous variables where appropriate.

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Table 6-17 Differences in baseline characteristics in those whose FACIT-Sp improved and those whose FACIT-Sp worsened at three-month follow-up (categorical variables) Chi square df p

Gender 0.84 1 0.358

Relationship status 2.42 1 0.120

Education level 0.08 1 0.785

Metastatic disease at baseline 0.48 1 0.491

Current treatment at baseline 3.37 1 0.066

There was no difference in age between those whose FACIT-Sp worsened and those whose FACIT-Sp improved (Improve M=51.63, SD=9.51; Worsen M=53.81, SD=9.10; t(64)=- 0.92, p=0.359). Time from diagnosis was also not significantly different between the two groups (Improve M=29.71, SD=38.81; Worsen M=27.88, SD=41.64; t(64)=-0.18, p=0.861). These analyses suggest that improvements and worsening in POMS TMD and QOL are not affected by the above categorical variables.

It was hypothesised that POMS and FACIT-Sp exit scores would be correlated with change in each measure, with those with the highest scores showing the greatest changes (see Table 6-18).

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Table 6-18 Spearman correlations between POMS and FACIT-Sp and subscale scores on exit and change in measure at three-month follow-up Correlation with program completion to three-month change scores POMS at exit

TMD 0.348*

Tension-Anxiety 0.370*

Depression-Dejection 0.419**

Anger-Hostility 0.342*

Vigor-Activity 0.536**

Fatigue-Inertia 0.453**

Confusion-Bewilderment 0.419**

FACIT-Sp at exit

FACIT-Sp 0.304*

FACT-G 0.721**

Physical wellbeing 0.049

Social wellbeing 0.406**

Emotional wellbeing 0.453**

Functional wellbeing 0.303**

Spiritual wellbeing 0.718**

Note: * p<0.05; ** p<0.01; *** p<0.001 Pairwise deletion of data was conducted with ns ranging from 48 to 55

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The results given in Table 6-18 show that those with the higher levels of mood disturbance, as measured by POMS TMD and all subscales showed greater changes in these measures at three months. Anecdotally, some participants report that they may become aware of difficult issues in their lives which may need to be faced on their return home. Others report anxiety about the return to normal life and the demands and challenges they will face. This may lead to higher levels of mood disturbance which lessen over the three-month follow-up period. The results given in Table 6-18 show that those with higher FACIT-Sp and all subscale scores at exit, with the exception of Physical wellbeing scores showed greater changes in these measures at three months. Thus, those with low Physical wellbeing at program exit still had low Physical wellbeing at three-month follow-up and those with higher Physical wellbeing on program exit also did not change significantly on this measure. This may reflect lack of meaningful change in disease state over the follow-up period.

Analyses presented in Chapters 3.6.14 and 3.6.15 suggest that changes in coping are correlated with changes in mood and QOL. We analysed the correlations between changes in POMS and subscales and Mini-MAC subscales (see Table 6-19) and FACIT-Sp and Mini-MAC subscales. (see Table 6-20).

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Table 6-19 Correlation between changes in coping and changes in mood disturbance from program completion to three-month follow-up Helplessness- Anxious Fighting Cognitive Fatalism Hopelessness Preoccupation Spirit Avoidance change change scores change scores change change scores scores scores POMS change scores TMD 0.256 0.551** -0.137 0.023 -0.404** Tension- 0.207 0.454** -0.195 -0.081 -0.366** Anxiety Depression- 0.336** 0.376** -0.021 -0.026 -0.437** Dejection Anger- 0.301* 0.338** -0.087 -0.079 -0.311* Hostility Vigor-Activity -0.024 -0.291* 0.201 -0.086 0.247 Fatigue-Inertia 0.086 0.143 0.026 0.195 -0.269* Confusion- 0.195 0.325* -0.051 0.025 -0.256 Bewilderment * p<0.05; ** p<0.01; *** p<0.001 Pairwise deletion of data was conducted with ns ranging from 48 to 60

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Table 6-20 Correlation between changes in coping and changes in FACIT-Sp from program completion to three-month follow-up Helplessness- Anxious Fighting Cognitive Fatalism Hopelessness Preoccupation Spirit Avoidance change change scores change scores change change scores scores scores

FACIT-Sp change scores

FACIT-Sp -0.421** -0.422** 0.405 -0.093 -0.431**

FACT-G 0.272* -0.230** -0.282* -0.114 -0.167

Physical -0.207 -0.285* -0.026 -0.112 -0.067 wellbeing

Social -0.208 -0.222 0.293 -0.032 -0.306* wellbeing

Emotional -0.250 -0.483** 0.261* -0.056 0.353** wellbeing

Functional -0.320* -0.316* 0.348** -0.091 -0.304* wellbeing

Spiritual -0.383** -0.272* -0.201 0.021 -0.292* wellbeing

* p<0.05; ** p<0.01;*** p<0.001 Pairwise deletion of data was conducted with ns ranging from 61 to 64

These analyses suggest that changes in the coping styles of Anxious Preoccupation and Fatalism are most strongly linked to changes in mood disturbance and QOL. Analyses presented in section 3.6.15 suggest that a coping style of Fatalism is linked to Spiritual 280 Chapter Six: Three-month follow-up

wellbeing and it seems that the spiritual component of QOL plays a significant part in the benefits of this intervention. It might therefore be expected that changes in Fatalism would be linked to changes in QOL.

This may be illustrated in comments from participants who responded to 3-month follow- up questionnaires.

“I have recommitted to God after many years of being away. This is what has given me most peace and happiness. Whatever has happened recently I can honestly say I have felt no stress whatsoever”

“I have found a much deeper level of spirituality and feel that God is on my journey with me. I need his support and presence and I found it. I am so happy and so humble and thankful.

6.4.6 Links between compliance with program recommendations and measures

Anecdotal reports and the data presented in Chapter Four suggest that benefits can occur in a short time period as a result of an intervention such as that described in the current study. However, changes in diet and meditation are only likely to lead to significant benefits if participants make changes and practise skills and techniques in their everyday lives. Meditation in particular, is traditionally thought of as a practice that takes an amount to time to develop. However, as mentioned Section 1.8.9 the nature of the learning curve is unclear. In order to explore the links between compliance with program recommendations and wellbeing, correlations between compliance and POMS, Mini-MAC, and FACIT-Sp were explored.

6.4.6.1 Meditation

Correlations between measures at three-month follow-up and time spent meditating, self- rated proficiency and scores on the Physical effects of meditation, Cognitive effects of meditation and Expanded consciousness effects of meditation subscales of the GMQ-20 questionnaire discussed in Chapter Five were examined (see Table 6-21). In Chapter Five it was reported that scores on the Cognitive Effects of Meditation subscale correlated 281 Chapter Six: Three-month follow-up

significantly (above 0.30) with the following subscales: POMS Tension-Anxiety, POMS Confusion-Bewilderment, Mini-MAC Anxious Preoccupation, FACIT-Sp Emotional wellbeing and Spiritual wellbeing. Scores on the Expanded Consciousness effects of meditation subscale correlated with overall FACIT-Sp and Spiritual wellbeing. However, it was also concluded that while the scale has potential in the assessment of the effects of meditation it currently lacks sufficient psychometric rigour. Thus the assessment of the links between the scores on the GMQ-20 subscales and measures of adjustment provide a further opportunity to examine the links between the quality of meditation and adjustment.

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Table 6-21 Spearman correlations between meditation practice and measures at three months Time spent Self-rated Physical Cognitive Expanded meditating proficiency effects of effects of consciousness (minutes per meditation meditation effects of week) meditation POMS TMD -0.080 -0.240 -0.098 -0.419*** -0.282* Tension-Anxiety -0.137 -0.365** -0.132 -0.471*** -0.197 Depression- -0.111 -0.292* -0.109 -0.366** -0.230 Dejection Anger-Hostility -0.117 -0.152 -0.114 -0.227 -0.160 Vigor-Activity 0.020 0.048 -0.001 0.177 0.187 Fatigue-Inertia -0.011 -0.089 -0.090 -0.277* -0.370** Confusion- -0.153 -0.243 -0.106 -0.391** -0.319* Bewilderment Mini-MAC Helplessness- 0.008 0.055 0.032 -0.029 -0.133 Hopelessness Anxious -0.249 -0.212 -0.036 -0.176 -0.226 Preoccupation Fighting Spirit 0.139 -0.089 -0.149 -0.017 -0.295* Cognitive -0.174 0.010 -0.017 -0.144 -0.129 Avoidance Fatalism 0.270 -0.041 0.010 0.137 0.043 FACIT-Sp FACIT-Sp 0.231 0.235 0.172 0.304* 0.381** FACT-G 0.069 0.080 -0.126 0.143 0.281* Physical wellbeing -0.175 0.101 0.058 0.153 0.233 Social wellbeing 0.337 -0.131 0.033 -0.014 -0.035 Emotional wellbeing 0.201 0.253 0.119 0.185 0.168 Functional -0.083 0.070 -0.001 0.051 0.209 wellbeing Spiritual wellbeing 0.457** 0.405** 0.235 0.384** 0.358** * p<0.05; ** p<0.01; *** p<0.001 Pairwise deletion of missing data was conducted with ns ranging from 30 to 59

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Thus it seems that time spent meditating is correlated only with Spiritual wellbeing and appears not to be significantly linked to other dimensions of QOL and mood disturbance. Self-rated proficiency of meditation is significantly correlated with lower POMS Tension- Anxiety and very weakly with lower Depression-Dejection. The Physical effects subscale of the meditation questionnaire does not appear to be correlated with mood and QOL whereas the Cognitive effects subscale is linked to lower TMD, Tension-Anxiety Depression- Dejection and Confusion-Bewilderment, overall FACIT-Sp and Spiritual wellbeing and weakly with lower Fatigue-Inertia. The Expanded Consciousness subscale is weakly correlated with lower TMD and FACT-G and also with Fatigue-Inertia, Confusion- Bewilderment, overall FACIT-Sp, and Spiritual wellbeing. These results provide further support for hypothesis that the experiences within and the quality of meditation are linked to better mood and QOL while the time spent is not.

Someone who learns to meditate properly may find that they are able to observe the mind’s operations non-judgmentally. This may lead to the development of more realistic perceptions, greater appreciation of positive as well as negative experiences. This may help to reduce the emotional reactivity usually linked to anxiety symptoms (Kabat-Zinn, 1982; Kabat-Zinn et al., 1992) and the increased awareness may bring changes in habitual cognition and patterns of responding, including ruminative thinking (Ramel, Goldin, Carmona, & McQuaid, 2004).

This may be illustrated in comments from participants such as:

“It enables me to change learnt behaviour patterns.…. I find it easier to change worry to letting go. I enjoy life more, particularly simple things. In fact the Gawler experience changed my life profoundly”

“I don’t react automatically but assess the situation and take time for doing it. I also enjoy what I am doing - even housework!”

“Spontaneously I have had important images arise in my mind about the difficult personal situation I am in. They have helped me very much.”

“Even when diagnosed with new tumour growth I have been able to remain positive and optimistic” and “I accept that I may not be able to heal this thing but I can face

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the things I need to do in order to make it easier for my family I am calm though I do not want to leave a good life if I must I accept it”

Such shifts may help to explain links between meditation and reduced mood disturbance reported in other studies (Astin, 1997; Shapiro, Schwartz, & Bonner, 1998). However, coping as measured by the Mini-MAC does not appear to be significantly linked to the meditation experience (other than Fighting Spirit which is weakly correlated with Expanded Consciousness effects of meditation subscale).

6.5 Summary

Three months after participants had left the program, follow-up data was collected by post in order to assess the extent to which participants were complying with The Gawler Foundation program recommendations, the extent to which the improvements seen after program completion were maintained and the links between compliance with the recommendations of program and mood, coping and quality of life. The questionnaire described in Chapter Five was used to assess the links between the meditation experience and adjustment at three-month follow-up.

Comparison of those who responded to the three-month follow-up questionnaire with those who did not, showed that respondents and non-respondents did not differ according to their gender, relationship status, education level, whether or not they had metastatic disease or whether or not they were receiving treatment at baseline. However, analysis of selected measures on exit and change scores suggest that overall, those with poorer health status and those who experienced a decrease in QOL immediately after the intervention were less likely to continue to participation in the study. As over 50% of participants in the program reported metastatic disease these results may reflect worsening disease in some participants. Participants who did not feel the program to be beneficial would be less likely to be less interested in participating in the follow-up part of the study.

Analysis of follow-up data showed high compliance with program recommendations. However, it is probable that those who were complying less well with program recommendations were also less likely to participate in follow-up. Participants often report that it requires effort to learn new skills and examine life patters and this may be too

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demanding for some people who are dealing with metastatic disease once they return to their home environments. A participant who feels that they have failed in some way may be less likely to participate in a study assessing this aspect. Such results may point to the need for more support for patients to maintain compliance with program recommendations after shorter-term interventions such as the program described here.

Overall it seems that improvements in mood disturbance and anxiety after the program were not maintained at three-month follow-up. However, QOL improvements were mostly maintained even though Physical wellbeing and Functional wellbeing appeared to decline after program completion. In addition, on many measures participants still showed improvements from baseline. However, the measures assessing physical health appear largely unchanged from baseline whereas those assessing emotional health and overall QOL are significantly increased from baseline. Thus, it seems that the program has beneficial effects despite worsening disease state with the Spiritual wellbeing aspect of QOL likely to be a particularly important factor. This may reflect the phenomenon of response shift and a growing emphasis on existential issues as disease state worsens.

An investigation into the links between coping styles and mood disturbance and QOL suggested that those participants who score highly on the scales assessing the coping styles of Anxious Preoccupation and Helplessness-Hopelessness had higher levels of mood disturbance and lower QOL. Fighting Spirit seemed to play less of a role. This is likely to reflect the fact that the Anxious Preoccupation and Helplessness-Hopelessness subscales are measuring similar constructs to those tapped in the POMS Tension-Anxiety and Depression-Dejection subscales. Measurement problems also complicate discussion of links between coping and adjustment as most participants in the current study score highly on the Fighting Spirit subscale and low on the Helplessness-Hopelessness subscale, leaving little room for improvement.

Comparisons of those whose mood and QOL worsened over the 3-month follow-up period with those in whom it improved suggest that gender, relationship status, education level, metastatic disease and treatment at baseline did not play a significant role. Links between exit scores and the change over three months were examined for each measure. Those with the highest scores on exit showed the greatest changes in scores over the time period for all

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measures except Physical wellbeing. High exit scores may reflect anxiety about returning to normal life and facing difficult situations, which may decrease over time.

Changes in the coping styles of Anxious Preoccupation and Fatalism were most strongly linked to changes in mood disturbance and QOL over the three-month follow-up period. This may reflect the conceptual similarity of Fatalism as measured by the Mini-MAC and Spiritual wellbeing, which contributes significantly to QOL.

An investigation of the links between the meditation experience and adjustment to cancer showed that time spent meditating was correlated only with Spiritual wellbeing and appeared not to be significantly linked to other dimensions of QOL and mood disturbance. Self-rated proficiency of meditation was significantly correlated with lower POMS Tension-Anxiety and very weakly with lower Depression-Dejection. The Physical effects of meditation subscale of the GMQ-20 meditation questionnaire did not appear to be correlated with mood and QOL whereas the Cognitive effects of meditation subscale is linked to lower TMD, Tension-Anxiety Depression-Dejection and Confusion-Bewilderment, overall FACIT-Sp and Spiritual wellbeing. The Expanded Consciousness effects of meditation subscale is weakly correlated with lower TMD and FACT-G and also with Fatigue-Inertia, Confusion-Bewilderment, overall FACIT-Sp, and Spiritual wellbeing.

These results provide some support for hypothesis that the experiences within and the quality of meditation practices are linked to better mood and QOL, rather than the time spent. However, coping as measured by the Mini-MAC does not appear to be significantly linked to the meditation experience (other than Fighting Spirit which is weakly correlated with the Expanded Consciousness effects of meditation subscale). Thus, it may be that the positive effects of meditation seem not to affect coping as conceptualized and measured in this study, pointing to the need for further investigation.

The main limitations of this part of the study include lack of a control group, inadequate data on disease state and significant loss to follow-up. It is also possible that the pacing and timing of questionnaires may mean information about subtle changes is lost. It is also difficult in interventions with multiple components, such as diet and meditation, to identify which components are likely to be effective.

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7 CHAPTER SEVEN

Six and 12-month follow-up

7.1 Introduction

At six and twelve months after participants had left the program, follow-up data was collected by post in order to address the following research questions:

• To what extent are people complying with The Gawler Foundation program recommendations at six and 12-month follow-up?

• Are the improvements seen after program completion maintained?

• Does compliance with the recommendations of program affect mood, coping and quality of life?

7.2 Compliance with program recommendations at six- month follow-up

At six-month follow-up, 51 responses were received (19 men and 32 women). A further two people were reported as having died, bringing the total at six months to 14 people.

7.2.1 Meditation practice

Participants were asked about their meditation practice. Of those who responded to this section (43) 84.3% people reported a current meditation practice while eight (15.7%) did not. For 40 (93% of those meditating) people this included the stillness and visualization meditation methods taught at The Gawler Foundation. Thirty nine (90.7%) of participants reported benefits in everyday life. For the 35 participants who gave this information, the mean (SD) minutes per week spent in meditation was 436 (273), the median was 420 minutes per week, the minimum was 45 minutes and the maximum 1050 minutes.

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Table 7-1 shows the self-rated proficiency at meditation on a scale of 1 (minimum) to 10 (maximum) for the 42 participants who gave this information.

Table 7-1 Self-rated proficiency of meditation at six-month follow-up Self-rated proficiency Frequency Percent

1 2 4.8

4 3 7.1

5 9 21.4

6 9 21.4

7 10 23.8

8 9 21.4

Total 42 100

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7.2.2 Diet

Table 7-2 shows the number of days participants reported following the recommended dietary measures in the week prior to answering the questionnaire.

Table 7-2 Compliance with dietary recommendations at six-month follow-up Dietary measure Every Most Few No day days days days

Avoid foods high in fat 32 18 1 0

Avoid foods high in sugar 31 18 1 1

Avoid foods high in salt 32 19 0 0

Avoid meat 27 16 8 0

Avoid alcohol 30 14 5 2

Avoid caffeine 38 11 2 0

Avoid cooking techniques such as smoking and 46 5 0 0 barbecuing

Avoid processed foods containing 36 12 3 0 sweeteners and additives

Include fresh vegetable and fruit juices 39 8 4 0

Include high fibre foods 41 9 1 0

Include organic foods 27 13 6 5

All those who responded to this section of the questionnaire at six-month follow-up were in the high compliance with dietary recommendations category, that is, complied with dietary recommendation on all or most days (See section 3.4.6). 290 Chapter Seven: Six and 12-month follow-up

7.2.3 Exercise

At six months, only 15 (29.4%) and 10 (19.6%) of the sample reported participating in hard or very hard exercise respectively (see section 3.4.2). As cancer may affect a person’s ability to exercise participants were asked if the level of exercise reported in the questionnaire was typical for them. The level was typical for 29 (43.3%) participants (see Table 7-4).

Table 7-3 Exercise participation at six-month follow-up n Mean Std. Deviation Median Minimum Maximum

Moderate hours 47 8.7 5.0 9.5 0 50

Hard hours 15 7.3 3.0 11.0 1 40

Very hard hours 10 4.9 3.0 6.1 1 20

Table 7-4 Typical level of exercise at six-month follow-up Typical level of exercise Frequency Percent

Less 20 39.2

More 8 15.7

Same 22 43.1

Unknown 1 2.0

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7.3 Mood, coping and QOL at six-month follow-up

In order to assess mood, coping and QOL at six-month follow-up and to investigate whether the improvements seen in these measures at program completion were maintained, participants were asked to complete the POMS, Mini-MAC and FACIT-Sp measures. These are given in Appendix M. As some patients returned questionnaires at six-month follow-up but not at three-month follow-up, it was decided that in order to maximise numbers, changes from program completion would be calculated, rather than changes from three-month follow-up to six-month follow-up. Thus, changes in scores from program completion to six-month follow-up were calculated for all measures and are in Appendix M. In all cases, scores at six-month follow-up were subtracted from program completion scores.

7.3.1 Comparison of program completion to six-month change scores

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Table 7-5 Program completion and six-month follow-up comparisons for normally distributed measures Program Six-month follow- completion up M SD M SD n t df p POMS TMD -6.92 17.52 9.31 23.26 39 -3.48 38 0.001* Tension-Anxiety 0.82 3.51 2.34 5.10 44 -1.77 43 0.084 Vigor-Activity 21.10 6.34 16.42 6.04 48 3.80 47 <0.001* Confusion- 0.91 2.98 1.54 3.36 46 -1.23 45 0.225 Bewilderment Mini-MAC Anxious 15.33 4.74 16.06 5.33 49 -1.38 48 0.174 preoccupation Cognitive 7.56 2.63 7.92 2.81 50 -1.07 49 0.288 Avoidance Fatalism 14.56 2.53 14.72 2.77 50 -0.52 49 0.603 FACIT-Sp FACIT-Sp 127.41 13.87 121.64 17.45 50 2.82 49 0.007* FACT-G 86.03 13.32 83.70 17.18 51 0.84 50 0.405 Emotional 20.06 3.53 19.71 3.47 51 0.74 50 0.466 wellbeing Functional 22.53 4.36 20.45 5.51 51 2.90 50 0.005* wellbeing Spiritual wellbeing 37.21 6.90 35.64 7.29 50 2.05 49 0.046 Note: * Significant at p<0.05 or greater

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Table 7-6 Program completion and six-month follow-up comparisons for non-normally distributed measures Negative ranks (six- Positive ranks (six-month month follow- follow-up> program up

Mean ranks n Mean ranks n z p

POMS

Depression- 21.53 16 23.05 28 -1.76 0.079 Dejection

Anger- 20.92 12 21.03 29 -2.331 0.020* Hostility

Fatigue-Inertia 16.42 13 23.78 29 -2.99 0.003*

Mini-MAC

Helplessness- 13.30 10 18.61 23 2.658 0.008* Hopelessness

Fighting Spirit 19.92 32 20.36 7 -3.509 <0.001*

FACIT-Sp

Physical 23.27 31 13.95 10 -3.788 <0.001* wellbeing

Social 19.89 23 21.32 17 -0.640 0.522 wellbeing

Note: * Significant at p<0.05 or greater

The mean POMS TMD scores were significantly increased from program completion to six-month follow-up. Scores on the subscale of Tension-Anxiety, Depression-Dejection and Confusion-Bewilderment were not significantly different at six months. Scores on the subscales of Anger-Hostility and Fatigue–Inertia were significantly higher after six months. 294 Chapter Seven: Six and 12-month follow-up

The score on the Vigor-Activity subscale was significantly lower after six months. Scores on the Helplessness/Hopelessness scale were increased and scores on the Fighting Spirit scale were reduced after six months. Scores on the Anxious Preoccupation, Cognitive Avoidance and Fatalism scales were not significantly different after six months. Paired t- tests showed that total scores on the FACIT-Sp, Physical wellbeing, Functional wellbeing and Spiritual wellbeing were significantly reduced after six months. FACT-G, Social wellbeing and Emotional wellbeing were not significantly different after six months.

Thus it appears that overall mood disturbance in participants was higher six months after program completion while some of the benefits of the intervention on levels of anxiety, depression and confusion remained. The maintenance of beneficial effects on anxiety was also reflected in the unchanged levels of anxiety assessed by the Mini-MAC and the unchanged levels of FACIT-Sp Emotional wellbeing. Participants’ scores on measures reflecting physical health also seemed to decline from program completion. These results may be cautiously interpreted to suggest that while in general, most benefits were not fully maintained after program completion, reductions in emotional wellbeing were to some extent maintained despite worsening physical condition.

7.3.2 Predominant coping styles at six-month follow-up

As in section 3.5.2 predominant coping styles were assessed using z scores and these were then compared with baseline, program completion and three-month values (see Table 7-7). The results showed the most predominant coping style at six-month follow-up was Fighting Spirit followed by Anxious Preoccupation. This is similar to three-month follow-up.

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Table 7-7 Predominant coping styles among participants Baseline Program completion 3-month follow-up 6-month follow-up

n Percent (of n Percent (of n Percent (of n Percent (of total total total total respondents at respondents at respondents at respondents at time point) time point) time point) time point)

Helplessness- 18 17.5 18 17.5 9 13.6 11 18.6 Hopelessness

Anxious 20 19.4 19 18.4 15 22.7 10 19.6 Preoccupation

Fighting Spirit 25 24.3 21 20.4 19 28.8 13 25.5

Cognitive 17 16.5 20 19.4 11 16.7 9 17.6 Avoidance

Fatalism 19 18.4 22 21.4 10 15.1 6 11.8

None 4 3.9 3 2.9 2 3.0 2 3.9

Missing 9 9 46 59

Total 103 100.0 112 100. 0 66 100 51 100.0

7.3.3 Links between compliance and measures at six months

In order to explore links between compliance and program recommendations and wellbeing at six-month follow-up, correlations between compliance and scores on the POMS, Mini- MAC, and FACIT-Sp were explored (see Table 7-8). As mentioned in Section 6.4.6, it is likely that benefits of meditation practice and leading a healthy lifestyles increase over time. It was therefore hypothesised that those who were complying with program recommendations would experience greater QOL and less mood disturbance.

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Table 7-8 Correlations between meditation practice and measures at 6-month follow-up Time spent Self-rated Physical Cognitive Expanded meditating proficiency effects of effects of consciousness (minutes per meditation meditation effects of week) meditation POMS TMD -0.155 -0.243 -0.030 -0.087 0.035 Tension- -0.239 -0.181 -0.095 -0.097 0.219 Anxiety Depression- -0.086 -0.272 -0.052 -0.239 0.084 Dejection Anger-Hostility -0.021 -0.024 -0.044 -0.009 0.206 Vigor-Activity 0.228 0.165 -0.133 0.063 0.177 Fatigue-Inertia -0.248 -0.126 -0.079 -0.050 -0.065 Confusion- 0.032 -0.090 -0.135 -0.126 -0.212 Bewilderment Mini-MAC Helplessness- -0.357* -0.293 -0.148 -0.079 -0.142 Hopelessness Anxious 0.101 -0.119 -0.038 -0.285 0.109 Preoccupation Fighting Spirit 0.056 -0.120 -0.027 0.204 -0.078 Cognitive -0.016 -0.223 -0.094 -0.087 0.173 Avoidance Fatalism 0.125 0.197 0.090 0.252 0.299 FACIT-Sp 0.027 0.329* 0.260 0.356* 0.300 FACT-G -0.021 0.077 -0.070 0.189 -0.017 Physical 0.085 0.146 0.194 0.087 0.124 wellbeing Social 0.027 0.162 0.164 0.210 0.233 wellbeing Emotional -0.110 0.136 -0.102 0.287 -0.038 wellbeing Functional -0.038 0.028 -0.073 0.176 0.008 wellbeing Spiritual 0.108 0.394* 0.193 0.401** 0.460** wellbeing * p<0.05; ** p<0.01;*** p<0.001 Pairwise deletion of data was conducted with ns ranging from 33 to 43

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At 6-month follow-up, time spent meditating was only correlated with Mini-MAC Helplessness-Hopelessness measure, suggesting perhaps that participants felt that meditation was something that could be used to reduce feelings of helplessness in the face of difficulty. This may support the findings of Mullens, McCaul, Erickson and Sandgren (2004) who concluded that cancer patients with greater distress levels were more likely to make behavioural changes. Proficiency of meditation was correlated with overall FACIT- Sp and Spiritual wellbeing. Thus, someone who feels that they are meditating ‘well’ may experience greater overall QOL, mostly as a result of greater spiritual wellbeing. These results support the hypothesis that quality of meditation, which may be reflected in self- reported proficiency, is more important in effects on QOL than simply time spent. However, in their report of 6-month follow-up after a meditation intervention study Carlson, Ursuliak, Goodey, Angen and Speca (2001), found that minutes spent meditating at follow-up was associated with a greater POMS TMD change score, with more home practice associated with greater magnitude of improvement in mood. They also comment on the need for measures which help to understand the positive effects of such interventions.

The results of links between the subscales and other measures also provide some support for the hypothesis that quality of meditation is more important than time spent. Scores on the Physical effects of meditation subscale do not appear to be correlated with scores on any measure; scores on the Cognitive effects of meditation subscale correlated with overall FACIT-Sp and Spiritual wellbeing scores; scores on the Expanded Consciousness effects of meditation subscale correlate only with Spiritual wellbeing scores. Thus it may be that the effects measured by the latter two subscales are particularly important for QOL improvement. However as mentioned in Section 5.3.5 there is a need for a measure with improved psychometric properties to more fully investigate this.

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7.4 12-month follow-up

At 12-month follow-up, 33 responses were received (15 men and 18 women). A further 2 people were reported as having died, bringing the total at 12 months to 16 people.

7.4.1 Compliance with program recommendations at 12-month follow-up

7.4.1.1 Meditation practice

Participants were asked about their meditation practice. Of those who responded to this section 28 (84.8%) people reported a current meditation practice while 5 (15.2%) did not. For 25 (89.3% of those meditating) people this included the stillness and visualization meditation methods taught at The Gawler Foundation. All those reporting a current meditation practice reported benefits in everyday life. For the 31 participants who gave this information, the mean (SD) minutes per week spent in meditation was 410 (367), the median was 225 minutes per week, the minimum was 175 minutes and the maximum 1050 minutes. Table 7-9 shows the self-rated proficiency at meditation on a scale of 1 to 10 for the 28 participants who gave this information.

Table 7-9 Self-rated proficiency of meditation at 12-month follow-up Self-rated proficiency Frequency Percent

3 1 3.6

4 4 14.3

5 5 17.9

6 5 17.9

7 5 17.9

8 8 28.6

Total 28 100

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7.4.1.2 Diet

Table 7-10 shows the number of days participants reported following the recommended dietary measures in the week prior to answering the questionnaire.

Table 7-10 Compliance with dietary recommendations at 12-month follow-up Dietary measure Every Most Few No day days days days

Avoid foods high in fat 20 13 0 0

Avoid foods high in sugar 17 12 4 0

Avoid foods high in salt 18 14 1 0

Avoid meat 15 11 5 2

Avoid alcohol 17 13 3 0

Avoid caffeine 25 6 1 1

Avoid cooking techniques such as smoking and 26 7 0 0 barbecuing

Avoid processed foods containing 22 10 0 1 sweeteners and additives

Include fresh vegetable and fruit juices 26 5 1 1

Include high fibre foods 27 6 0 0

Include organic foods 14 13 4 2

All those who responded at 12-month follow-up were in the high compliance with dietary recommendations category (See section 3.4.6).

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7.4.1.3 Exercise

At 12-month follow-up, only 10 (30.3%) and 7 (21.2%) of the sample reported participating in hard or very hard exercise respectively (see Table 7-11). As cancer may affect a person’s ability to exercise participants were asked if the level of exercise reported in the questionnaire was typical for them. The level was typical for 21 (63.6%) participants (see Table 7-12).

Table 7-11 Exercise participation at 12-month follow-up n Mean Std. Deviation Median Minimum Maximum

Moderate hours 30 7.55 7.00 5.00 1.00 30.00

Hard hours 10 4.70 4.50 3.00 1.00 15.00

Very hard hours 7 4.36 3.00 3.00 1.00 10.00

Table 7-12 Typical level of exercise at 12-month follow-up Typical level of exercise Frequency Percent

Less 7 22.6

More 4 12.9

Same 21 63.6

Unknown 1 3.0

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7.5 Mood, coping and QOL at 12-month follow-up

In order to assess mood, coping and QOL at 12-month follow-up and to investigate whether the improvements seen in these measures at program completion were maintained, participants were asked to complete the POMS, Mini-MAC and FACIT-Sp measures. Scores for these are given in Appendix M Changes in scores from program completion to 12-month follow-up were calculated for all measures and are in Appendix M. In all cases, scores at 12-month follow-up were subtracted from program completion scores.

7.5.1 Comparison of program completion to 12-month change scores

Program completion and 12-month follow-up scores were compared using Wilcoxon signed-rank tests (see Table 7-13).

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Table 7-13 Program completion and 12-month follow-up comparisons for all measures Negative ranks (12- Positive ranks (12-month month follow- follow-up> program up

When 12-month follow-up scores were compared with those at program completion, the only POMS measure to show a significant difference was Anger-Hostility, which was significantly higher than program completion. There were no significant differences in mini-MAC and FACIT-Sp subscales at 12-month follow-up compared to program completion. While the high drop-out rate and lack of control group make interpreting these results difficult it is suggested that those still participating in the study are those with less severe disease in whom adjustment would be expected to improve over time anyway, possibly returning to pre-disease levels in some, although trajectories of change in adjustment do vary between individuals (Helgeson, Snyder, & Seltman, 2004). It is also possible that in those maintaining participation in the study, the benefits of complying with the intervention play a part in wellbeing and this is further explored in Section 7.5.4.

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7.5.2 Change over mood, coping and QOL over time

In order to further explore changes in mood, coping and QOL over the 12-month period of the study, graphs of mean scores on all measures were plotted (see Figs 7-1 to 7-19).

Figure 7-1 Change in POMS TMD score over 12 months

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Figure 7-2 Change in Tension-Anxiety score over 12 months

Figure 7-3 Change in Depression-Dejection score over 12 months

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Figure 7-4 Change in Anger-Hostility score over 12 months

Figure 7-5 Change in Vigor-Activity score over 12 months

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Figure 7-6 Change in Fatigue-Inertia score over 12 months

Figure 7-7 Change in Confusion-Bewilderment score over 12 months

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Figure 7-8 Change in Helplessness-Hopelessness score over 12 months

Figure 7-9 Change in Anxious Preoccupation score over 12 months

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Figure 7-10 Change in Fighting Spirit score over 12 months

Figure 7-11 Change in Cognitive Avoidance score over 12 months

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Figure 7-12 Change in Fatalism score over 12 months

Figure 7-13 Change in FACIT-Sp score over 12 months

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Figure 7-14 Change in FACT-G score over 12 months

Figure 7-15 Change in Physical wellbeing score over 12 months

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Figure 7-16 Change in Social wellbeing score over 12 months

Figure 7-17 Change in Emotional wellbeing score over 12 months

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Figure 7-18 Change in Functional wellbeing score over 12 months

Figure 7-19 Change in Spiritual wellbeing score over 12 months

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It can be seen from the above graphs that in most cases, as hypothesised and explored more fully in Chapter Four, scores of the various measures show reductions in mood disturbance and improvements in coping and QOL after the program. As discussed in Chapter Six, these improvements typically fade out at three and six-month follow-up, possibly due to greater disease severity in some participants and the difficulties of maintaining compliance with program recommendations after returning to normal life. As Edmonds, Lockwood and Cunningham (1999) comment, “short-term interventions often instil a rush of enthusiasm and hope while longer term interventions cannot support the same level of excitement as subjects encounter the often difficult and frustrating task of incorporating newly learned skills into their lifestyle” (p. 87). It is also the case that longer term follow-up exposes participants to the reality of dying from the disease, something which only becomes evident over a longer period of time.

However, POMS TMD, Tension-Anxiety, Depression-Dejection, Fatigue-Inertia, Confusion-Bewilderment, Helplessness-Hopelessness, Anxious Preoccupation, Social wellbeing were greater at 12-month follow-up than at baseline whereas Anger-Hostility, Fighting Spirit and Physical wellbeing were at similar levels. Vigor-Activity, Cognitive Avoidance, Fatalism, FACIT-Sp, FACT-G, Emotional wellbeing, Functional wellbeing and Spiritual wellbeing were greater than at baseline. Scores on the Tension-Anxiety and Spiritual wellbeing subscales showed less difference between program completion and three and six-month follow-up than the other measures, suggesting that the benefits tapped by these measures remained relatively consistent.

Discussion of these results is limited due to high drop-out rates and the lack of a control group with which to compare the intervention group. While these improvements may occur as a result of the intervention they may also be due to the natural course of adjustment in those patients that survive for the 12-month period, something which is more likely in those with less severe disease. It is obviously likely that patients with more serious disease are no longer participating in the study and the improvements seen are a result of a return to health in those still participating in the study. However, some of the improvements over time may be due to the benefits of the intervention and further research involving a control group and patients more homogeneous in terms of disease severity would be useful to help clarify this.

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7.5.3 Predominant coping styles at 12-month follow-up

As in section 3.5.2 predominant coping styles were assessed using z scores and these were then compared with three and six-month values (see Table 7-14). The results showed the most predominant coping style at 12-month follow-up was Cognitive Avoidance followed by Fighting Spirit. This is different to three and six-month follow-up when Fighting Spirit was the most predominant coping style. This may reflect the fact that some of those who participate in 12-month follow-up may be improving in health and are less likely to be thinking about their disease. In support of this, in section 7.5.2, it is reported that scores on the Physical wellbeing subscale are not significantly different to baseline suggesting that physical health is not necessarily worse in those participating in 12-month follow-up.

Table 7-14 Predominant coping styles among participants 3-month follow-up 6-month follow-up 12-month follow-up

n Percent (of total n Percent (of total n Percent (of total respondents at time respondents at time respondents at time point) point) point)

Helplessness- 9 13.6 11 18.6 6 18.2 Hopelessness

Anxious 15 22.7 10 19.6 6 18.2 Preoccupation

Fighting Spirit 19 28.8 13 25.5 7 21.2

Cognitive 11 16.7 9 17.6 8 24.2 Avoidance

Fatalism 10 15.1 6 11.8 5 15.2

None 2 3.0 2 3.9 1 3.0

Missing 46 59 77

Total 66 100.0 51 100.0 33 100.0

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7.5.4 Links between compliance and measures

Similarly to the analyses carried out in section 7.3.3 to explore links between compliance with program recommendations and wellbeing, correlations between compliance and scores on the POMS, Mini-MAC, and FACIT-Sp were explored (see Table 7-15).

Table 7-15 Correlations between meditation questionnaire subscales and 12-month measures Time spent Self-rated Physical effects Cognitive Expanded meditating proficiency of meditation effects of consciousness effects (minutes per week) meditation of meditation POMS TMD -0.017 -0.227 0.454* -0.384 -0.006 Tension-Anxiety -0.039 -0.319 0.416* -0.420 0.186 Depression- 0.034 -0.357 -0.390 -0.485* -0.108 Dejection Anger-Hostility 0.223 -0.087 0.418* -0.319 0.177 Vigor 0.077 0.173 -0.341 0.296 0.142 Fatigue -0.243 0.017 0.088 -0.058 -0.065 Confusion -0.020 -0.155 0.170 -0.215 0.124 Mini-MAC Helplessness- 0.161 -0.319 0.288 -0.053 0.150 Hopelessness Anxious 0.034 -0.542** 0.325 -0.128 -0.078 Preoccupation Fighting Spirit 0.355 -0.074 0.138 0.165 -0.200 Cognitive 0.050 -0.237 -0.019 -0.083 0.008 Avoidance Fatalism 0.153 0.131 0.086 0.327 0.241 FACIT-Sp -0.161 0.435* -0.251 0.527* 0.334 FACT-G -0.056 0.399* -0.414* 0.300 0.292 Physical 0.107 -0.071 -0.122 -0.205 0.142 wellbeing Social wellbeing -0.320 0.379* -0.340 -0.403 0.051 Emotional -0.102 0.457* -0.227 0.449* -0.161 wellbeing Functional -0.061 0.290 -0.383 0.201 0.342 wellbeing Spiritual -0.104 0.370 0.105 0.681** 0.451 wellbeing Note: * p<0.05; ** p<0.01; *** p<0.001 Pairwise deletion of data was conducted with ns ranging from 19 to 28 317 Chapter Seven: Six and 12-month follow-up

At 12-month follow-up, time spent meditating was not correlated with any measures. Self- rated proficiency was correlated with scores on the Mini-MAC Anxious Preoccupation overall FACIT-Sp, FACT-G, Social wellbeing and Emotional wellbeing. Scores on the Physical effects of meditation subscale were positively correlated with scores on the POMS TMD, Tension-Anxiety, and Anger-Hostility and negatively with scores on the FACT-G. Scores on the Cognitive effects of meditation subscale correlated with scores on the POMS Depression-Dejection, overall FACIT-Sp, Emotional wellbeing and Spiritual wellbeing, while scores on the Expanded Consciousness effects of meditation subscale did not correlate significantly with scores on any measures. Thus, at 12-month follow-up the benefits appear to be linked to physical and cognitive effects of meditation. These results again support the hypothesis that quality rather than quantity of meditation is more important for wellbeing. However in order to more clearly understand the benefits of meditation there is a need for further research using a measure with improved psychometric properties.

7.6 Comparisons with other studies

Comparisons of the POMS TMD in follow-up questionnaires in the current study with other studies are given in Table 7-16. While these are difficult, due to considerable differences in the nature and time of the various interventions a limited comparison of changes in measures of mood disturbance may be useful.

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Table 7-16 Comparisons of follow-up POMS scores with those of other studies Change scores Type of intervention Disease type TMD Tension- Depression- Anger- Vigor- Fatigue- Confusion- Anxiety Dejection Hostility Activity Inertia Bewilderment Current study (baseline to 3- Meditation/ relaxation/diet/ Mixed cancers 9.35 3.19 2.51 1.88 -0.03 0.17 1.12 month FU) group support/positive thinking Edelman et al. 1999 (3-month Cognitive behavioural Metastatic -2.03 0.78 -0.42 (8.41) 0.28 1.19 -1.75 0.335 (4.06) FU) therapy breast cancer (27.86) (5.05) (4.65) (7.14) (7.90) Cunningham and Tocco 1989 Psycho-educational therapy Mixed cancers 18.7 3.6 4.5 (6-month FU) Current study (baseline to 6- As above Mixed cancers 1.12 2.73(5.98) 0.06(7.74) 1.77(4.87) 1.88 -0.3(2.1) 1(3.23) month FU) (29.65) (7.6) Current study (baseline to 12- As above Mixed cancers 9.34 3.63 1.19 (8.19) 0.32 -1.38 -0.45 2.03 (4.36) month FU) (31.45) (7.06) (6.78) (6.47) (2.37) Cunningham et al. 2005 (6- Psychological therapy with Mixed cancers 4.27 month FU) spiritual themes (20.95) Edelman et al.1999 Psycho-educational therapy Mixed cancers -1.87 0.39 -1.00 (7.93) 1.27 0.47 -1.23 -0.80 (4.16) intervention group (baseline (30.36) (5.56) (7.06) (6.61) (9.00) to 6-month FU) Speca et al.2001 (post- Meditation-based stress Mixed cancers -6.7 -0.1 (4.8) -1.1 (7.4) -0.7 (6.1) 1.9 -1.3 (6.0) -0.1 (4.1) intervention to 6-month FU) reduction program (33.5) (10.3) Boesen et al 2005 (baseline Psychoeducational group Malignant -8.43 -1.78 (5.3) -1.45 (7.2) -1.20 (5.9) 2.36 -0.80 -1.09 (3.9) to 6-month FU) intervention melanoma (24.3) (6.6) (4.3) Boesen et al. 2005 (baseline Psycho-educational group Malignant -5.01 -1.57 (5.0) -0.52 (6.8) 0.14 (5.9) 1.38 -0.80 -0.87 (3.7) to 12-month FU) intervention melanoma (21.5) (5.0) (4.0) Spiegel et al. 1999 (6-month Supportive expressive Women with -8.3 FU) therapy breast cancer Spiegel et al. 1999 (12-month Supportive expressive Women with -10.1 FU) therapy breast cancer Note: FU – follow-up, negative values refer to reductions

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Comparisons with other studies shown in Table 7-16 suggest that the other studies show a greater likelihood of benefits being maintained at follow-up. Cain, Kohorn, Quinlan, Latimer and Schwartz (1986) found that the benefits of an individual and group education intervention were maintained for six months and Fawzy et al. (1990) found improvements to be maintained six-months after a structured psychiatric intervention. In a replication of this study, Boesen et al. (2005) also found improvements only to be significant at six- month follow-up but not at 12-month follow-up. Fukui et al. (2000) found that improvement brought about by a six-week, structured, psychosocial group intervention were sustained over six months of follow-up. In another Japanese study Chujo et al. (2004) reported benefits of a psychosocial group intervention were maintained at 3-month follow- up but not at six months.

Cunningham (2005) found that at six-month follow-up after an eight-week psycho-spiritual intervention, improvements in mood had declined to about half the eight-week level. After a randomized trial of a three-month cognitive behavioural intervention Edelman Bell and Kidman (1999) reported that there were no between group differences at both three and six- month follow-up assessments. Cunningham and Tocco (1989) found that the benefits of their psychoeducational intervention began to dissipate two to three weeks after completion and Berglund, Bolund, Gustafsson and Sjoden (1994) also found that the benefits of their education-based intervention were not maintained at six and 12-month follow-up. Helgeson, Cohen, Schulz and Yasko (1999; , 2001) compared the long-term effects of educational and peer discussion group interventions on adjustment to breast cancer. Their results showed that some of the benefits of the education intervention were maintained at six-month follow-up and also over a three-year period while the benefits of the peer discussion intervention were not.

In their 6-month follow-up of the participants in a meditation intervention Carlson, Ursuliak, Goodey, Angen and Speca (2001) found that post intervention to six-month improvements in POMS were not significantly different. However, they noted that there was no decline either, thus benefits appeared to be maintained. This is similar to the results of the current study in which overall mood disturbance in participants was higher six months after program completion but some of the benefits of the intervention on levels of

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anxiety, depression and confusion remained. It is also similar to the 12-month follow-up results of the current study in which the majority of the measures at 12-month follow-up showed little change from program completion.

7.7 Summary

At six-month follow-up, 51 responses were received, with the majority of respondents meditating and following dietary recommendations. Comparisons of program completion and six-month follow-up scores showed that overall mood disturbance in participants was higher six months after program completion while some of the benefits of the intervention on levels of anxiety, depression and confusion remained. Participants’ scores on measures reflecting physical health also seem to have declined from program completion. These results may be cautiously interpreted to suggest that while in general, most benefits were not fully maintained six months after program completion, reductions in emotional wellbeing were to some extent maintained despite worsening physical condition.

Assessment of the links between compliance with program recommendations and adjustment, showed that at six-month follow-up, time spent meditating was only correlated with Mini-MAC Helplessness-Hopelessness measure, suggesting perhaps that participants felt that meditation was useful in reducing feelings of helplessness. Proficiency of meditation was correlated with overall FACIT-Sp and Spiritual wellbeing possibly because someone who feels that they are meditating ‘well’ experiences greater overall QOL, mostly as a result of greater spiritual wellbeing. These results support the hypothesis that quality of meditation, which may be reflected in self-reported proficiency, is more important in effects on QOL than simply time spent. The results of links between the subscales and other measures also provide some support for the hypothesis that quality of meditation is more important than time spent, with the effects measured by the Cognitive effects of meditation and the Expanded consciousness effects of meditation appearing to be particularly important for QOL improvement.

At 12-month follow-up, 33 responses were received, again with the majority of respondents complying with program recommendations. At 12-month follow-up scores on all measures were similar to those at program completion (other than POMS Anger-Hostility). While the

321 Chapter Seven: Six and 12-month follow-up

high drop-out rate and lack of control group make interpreting these results difficult it is suggested that those still participating in the study are those with less severe disease in whom adjustment would be expected to improve over time anyway, possibly returning to pre-disease levels in some. It is also possible that in those maintaining participation in the study, the benefits of complying with the intervention play a part in wellbeing. In an effort to explore this, the links between compliance and adjustment were assessed. At 12-month follow-up, time spent meditating was not correlated with any measure Self-rated proficiency was correlated with Mini-MAC Anxious Preoccupation overall FACIT-Sp, FACT-G, Social wellbeing and Emotional wellbeing. At this time the effects measured by the Cognitive effects of meditation and the Physical effects of meditation appeared to be particularly important to wellbeing. However there is a need for a measure with improved psychometric properties to more fully investigate these links.

Over the 12-month study period, in comparison with baseline, most measures showed reductions in mood disturbance and improvements in coping and QOL after the program. These improvements typically fade out at three and six-month follow-up, possibly due to greater disease severity in some participants and the difficulties of maintaining compliance with program recommendations after returning to normal life. At 12-month follow-up, most measures showed improvements from baseline. However, discussion of these results is limited due to high drop-out rates and the lack of a control group with which to compare the intervention group. While these improvements may occur as a result of the intervention they may also be due to natural course of adjustment in those patients that survive for the 12-month period, something which is more likely in those with less severe disease. However, some of the improvements over time may be due to the benefits of the intervention and further research involving a control group and patients more homogeneous in terms of disease severity would be useful to help clarify this.

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CHAPTER EIGHT

8 Effects of Meditation Scale Development

8.1 Introduction

Literature discussed in Section 1.8 and the results of the current study presented in previous chapters point to the need to further explore the psychological and phenomenological changes that occur in meditation and develop tools which aid in the assessment of the experience of meditation and how it might impact in everyday life. Such tools may help clinicians and researchers working in the field of health-related meditation assess several parameters including quality of meditation, change over time and the links between individual differences and outcomes.

The purpose of this chapter is to describe the development of the Effects of Meditation scale. It describes the creation of the item pool, administration and testing, the other measures used for validation, scale refinement and scale evaluation including factor analysis, reliability and validity analysis.

8.2 Defining and assessing meditation

In a research context, it is desirable to standardise and define a meditation technique. This facilitates comparisons across studies and between different types of interventions. This may also be useful in explaining meditation to those that are learning the technique and may also be of value in assessing change over time. At this stage, the nature of learning curve is unclear although almost all meditators report that effects get greater with increased practice (Kornfield, 1979). However, even first timers might show detectable effects (Goleman & Schwartz, 1976). It is also unknown what session length and frequency of meditation practice are necessary to achieve effects, how long practice needs to be in terms of weeks, months or years, and whether the effects are cumulative or linear.

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8.2.1 Incorporating other concepts

Some authors have criticised the mindfulness scales discussed in Section 1.8.9.1 for failing to cover all facets of the mindfulness construct (Walach, Buchheld, Buttenmuller, Kleinknecht, & Schmidt, 2006). They are also not designed to assess other aspects of the meditation experience, including the physical and the spiritual. While modern techniques such as MBSR are not affiliated with religious beliefs, the history of meditative practice traditionally links meditation with religion and incorporates the concept of a spiritual reality larger and more valuable but inclusive of the personal self. Such traditions emphasise the assumption that man is capable of some kind of reality over and above his sensorimotor capabilities. This may be expressed as a feeling of oneness or unity and may result in unusual experiences.

Kabat-Zinn (2003) comments that mindfulness should not be “seized upon as the next promising cognitive-behavioural technique or exercise, decontextualised, and “plugged” into a behaviourist paradigm with the aim of driving desirable change, or of fixing what is broken” (p. 145). Kabat-Zinn (2000) also notes that meditation is concerned with cultivation of awareness, insight, wisdom and compassion. These qualities and concepts are highly valued by many people and yet are not necessarily easy to evaluate or are not the focus of evaluation in cognitive psychology. In their study of the effects of meditation, Carlson, Ursuliak, Goodey, Angen and Speca (2001) also comment that the POMS may not be the most appropriate measure for the assessment of benefits of these types of interventions as it largely assesses negative mood states and may have limited usefulness in the assessment of positive outcomes associated with meditation and mindfulness. A worthwhile direction for future research would be to assess these positive effects.

There is a need to find ways to incorporate other concepts in the assessment of meditation by examining the psychological and phenomenological changes that occur in meditation and how these might impact in everyday life. This may help to understand processes, benefits and links to psychological symptoms and general wellbeing. It may also help to reveal the importance of particular experiences. Baer (2003) notes that “additional research could investigate the effects of mindfulness practice on a broader range of outcomes, such as subjective well-being and quality of life, as well as symptom reduction. The mechanisms through which mindfulness training may create clinical change, such as exposure, relaxation, and cognitive change, also should be examined” 324 Chapter Eight: Effects of Meditation Scale Development

(p. 139). Roemer and Orsillo (2003) note that it is important to see if meditation alters one’s relationship to one’s thoughts, feelings and symptoms.

8.2.2 Assessing quality of meditation

Another complexity arises with the issue that compliance with meditation practice does not necessarily mean quality meditation (Caspi & Burleson, 2005). There are currently no physiological measures that serve as a measure of quality meditation. EEG changes etc so seem to occur but causal links with outcomes are not known. It is possible that years of meditation and time spent do not necessarily relate to competence and that compliance may merely measure motivation not quality.

It is possible that quality of meditation is more important than quantity in terms of achieving beneficial effects. This points to the need for monitoring which includes some way of assessing quality of meditation and personal mastery, rather than just the descriptive level of compliance. It may also be useful to establish dose-response curves and ways of quantifying the strength of interventions so they can be related to outcome.

8.2.3 Links between individual characteristics and outcomes

It is also possible that different people are drawn to and better suited to different types of meditation, which complicates assessment of standardised protocols. There is therefore a need for more research on major meditation practices and how those practices interact with individual characteristics. As Cunningham et al. (2000) comment when discussing psychosocial support and cancer, issues of efficacy involve not just the therapy but the use the person makes of the therapy (see Section 1.6.4.2). This may mean that randomised trials, particularly double-blind trials are nearly impossible to do in this area. This is further complicated by the difficulty in comparing meditation and “not meditation”. Assessment tools which help to elucidate the processes of meditation may be useful in such research.

8.3 Methods

The procedures and principles of the scale development process are outlined in detail in Section 5.2, which focused on evaluation of the Gawler meditation questionnaire. These procedures were followed during the development of the Effects of Meditation scale described in this chapter.

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Typically, the first step in scale development involves a precise and detailed conception of the target construct and its theoretical context (L. A. Clark & Watson, 1995). During this phase of the project we attempted to encompass as wide a view of the subject of meditation as possible (L. A. Clark & Watson, 1995). For the purposes of this study it is assumed that the similarities in meditation techniques are greater than the differences.

8.3.1 Creation of item pool

The creation of an item pool is a critical part of scale development. It is essential to systematically sample all the content that is potentially relevant to the phenomenon of interest. L.A. Clark and Watson (1995) emphasise that the initial item pool should encompass all known theoretical views of the target construct and should also include items that may ultimately be shown to be unrelated to the core construct. It is also important to include an adequate sample of items tapping the same underlying trait variable. Including many more items than are needed for the final scale guards or insures against poor internal consistency as internal consistency is in part determined by the number of items in the scale. Items which prove unsatisfactory can be easily removed from the scale without shortening it too much and compromising its reliability.

When writing items it is important to use simple, straightforward and appropriate language. Typically, scales for use in general clinical samples should be understandable by those with only a modest education. Items with which the majority of people would agree or disagree should also be avoided and should be written to ensure variability in responding. Items covering more than one characteristic or concept should also be avoided. Positive and negative items should also be included in order to reduce acquiescence response bias (DeVellis, 1991), which refers to the tendency of some respondents to agree with items regardless of content.

The most commonly used response format in scale development is the Likert scale, in which possible responses cover varying degrees of agreement from agree to strongly disagree. Gable and Wolf (1993) conclude that a five or six point response format is most appropriate as fewer results in loss of response discrimination.

In the initial construction of the Effects of Meditation scale, ideas concerning the types of items to be included were drawn from four main sources:

(a) the initial questionnaire described in Chapter Five

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(b) a review of the literature (both traditional and scientific) of a number of different meditation traditions

(d) a series of interviews and discussions with expert meditators and teachers. The experts had long-term experience of meditation and good knowledge of the issues encountered by the beginning meditators.

(e) the open-ended questionnaire given in Appendix O. This questionnaire was distributed at a one-day meditation and mindfulness forum hosted by The Gawler Foundation (see Appendix N for Ethics approval).

The proposed scale was divided into two main sections: Experiences During Meditation and Effects of Meditation in Everyday Life. Each of these sections was further divided into four domains: physical effects, cognitive effects, emotional effects and ‘expanded consciousness’ effects. Two separate initial pools of items covering both experiences within meditation and effects in everyday life were generated. The Experiences During Meditation section consisted of 69 items while the Effects of Meditation in Everyday Life section consisted of 68 items. As suggested by DeVellis (1991), many of the items were verbatim quotations obtained during an earlier series of interviews. Each item consisted of a statement written in the first person, for example, “I lose awareness of my body.”

In the initial section covering the experiences within meditation, items were included from each of four domains: (a) Physical effects (“I experience my body as light or floating”), (b) Cognitive effects (“I am aware of a constant stream of distracting thoughts”), (c) Emotional effects (“I experience intense emotions”) and (d) Expanded consciousness effects (“I am aware of being on the threshold of a deeper experience”)

In the section covering effects in everyday life, items were included from each of four domains: (a) Physical effects (“I experience fewer physical symptoms of stress”), (b) Cognitive/behavioural effects (“I am generally more relaxed”), (c) Emotional effects (“I am less emotionally reactive”) and (d) Expanded consciousness effects (“I feel a sense of inner peace and strength”)

Where possible, a mix of both positively and negatively worded items was included within each domain. This was done in order to reduce acquiescence response bias

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(DeVellis, 1991), which refers to the tendency of some respondents to agree with items regardless of content.. Attempts were made to use simple, straightforward and appropriate language in order that items were understandable by those with only a modest education. Items with which the majority of people would agree or disagree were also avoided as were items covering more than one characteristic or concept.

In the section covering experiences during meditation, participants were required to rate their agreement or disagreement with each statement using a six-point Likert-type scale ranging from 1 (almost never) to 6 (almost always). In the section covering experiences in everyday life, participants were required to rate their agreement or disagreement with each statement using a six-point Likert-type scale ranging from 1 (not true for me) to 6 (true for me). This is in line with the recommendation of Gable and Wolf (1993) who conclude that a five or six point response format is most appropriate as fewer options results in loss of response discrimination.

8.3.2 Administration and testing

The questionnaire was then pilot tested on six people, both with and without significant meditation experience to assess whether the respondents were able to clearly understand and follow the instructions. It also provided an opportunity to identify any other potential problems and to assess the amount of time taken to complete the scale, which was found to be around 20 to 30 minutes. After adjustments the resulting scale was administered to a development sample, along with validation scales of related constructs (See Appendix Q).

Initially, participants included those who had participated in meditation sessions conducted by some of the experts consulted in the initial scale development process. The scale was also made available online and emails asking for participants were sent to personal contacts, institutions teaching meditation and internet newsgroups.

Individuals within each of these settings who expressed an interest in participating in the study were directed to the online site or provided with packages, each of which contained the questionnaires and a paid reply envelope. In the latter case, participants were instructed to complete the questionnaire booklet at home and to return it to the university in the paid reply envelope provided. All questionnaires were completed anonymously. A total of 236 questionnaires were completed and returned within the allocated time period. 328 Chapter Eight: Effects of Meditation Scale Development

8.3.3 Participants

The sample comprised 236 adults (93 men, 39%; 143 women, 61%). The mean (SD) age of the sample was 45.24 (12.10) and the median age was 47. Other sociodemographic characteristics are given in Table 8-1 and Table 8-2.

Table 8-1 Sociodemographic characteristics of sample (1) Relationship status n Percent

Single 67 28.4

De Facto 36 15.3

Married 91 38.6

Separated 5 2.1

Divorced 34 14.4

Widowed 3 1.3

Total 236 100.0

Employment status

Full time 118 50.0

Part time 58 24.6

Casual 20 8.5

Volunteer 8 3.4

Retired 11 4.7

Caring for home/family 21 8.9

Total 236 100.0

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Table 8-2 Sociodemographic characteristics of sample (2) Educational status

Primary 2 0.8

Secondary 29 12.3

Trade training 22 9.3

University 183 77.5

Total 236 100.0

Employment status

Full time 118 50.0

Part time 58 24.6

Casual 20 8.5

Volunteer 8 3.4

Retired 11 4.7

Caring for home/family 21 8.9

Total 236 100.0

8.3.4 Materials

Each participant received a questionnaire booklet that included demographic questions (gender, age, education level, relationship status and employment status), a number of questions assessing meditation experience and current practice, the meditation questionnaires described above and a number of standardized measures (See Appendix Q). In particular, the questionnaires allowed for an exploration of the relationship between the meditation questionnaire and mindfulness, perceived control of internal states, spiritual wellbeing, mood and general physical symptoms. These scales are briefly described in the following section.

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8.3.4.1 The Mindful Attention Awareness Scale

The Mindful Attention Awareness Scale (MAAS), which was developed by Brown and Ryan (2003), is a 15-item questionnaire which focuses on the presence or absence of attention to and awareness of what is occurring in the present moment. It has a single factor structure, yields a total score and uses a six-point Likert scale with ratings ranging between almost always to almost never. Respondents rate how often they have experiences of not paying attention to the present moment. Items include “It seems I am “running on automatic”, without much awareness of what I am doing”, “I could be experiencing some emotion and not be conscious of it until some time later” and I rush through activities without being really attentive to them”. The authors report a Cronbach’s alpha coefficient of 0.82 for the scale. In the current study the Cronbach’s alpha coefficient was found to be 0.90.

Brown and Ryan (2003) report that MAAS scores are higher in mindfulness practitioners than in matched community controls. They also found that in a group of cancer patients who participated in an MBSR course, increases in MAAS scores were associated with decreases in mood disturbance and symptoms of stress. However, the scale has been criticized for omitting other aspects of mindfulness such as a non- judgmental, accepting attitude, dis-identification, insightful understanding, or an attitude of having no specific goals (Walach, Buchheld, Buttenmuller, Kleinknecht, & Schmidt, 2006).

8.3.4.2 Perceived control of internal states

The Perceived Control of Internal States Scale (PCOISS) was designed to provide a measure of participants’ perceptions of their ability to influence their internal states and moderate the impact of aversive events on their emotions, thoughts, and physical wellbeing (Pallant, 2000). Items include “I don't have much control over my emotional reactions to stressful situations”, “When I'm in a bad mood I find it hard to snap myself out of it” and “My feelings are usually fairly stable”. Two studies (N= 689) have been published supporting the reliability, construct, and incremental validity of the scale. Higher levels of perceived control are associated with less physical and psychological symptoms of strain. The scale has good internal consistency, with a Cronbach’s alpha coefficient of 0.92 and a mean inter-item correlation of 0.41. In the current study the Cronbach’s alpha coefficient was found to be 0.91. 331 Chapter Eight: Effects of Meditation Scale Development

8.3.4.3 Physical Symptom Checklist

The measure of the physical symptoms of stress used in this study was adapted from items drawn from the somatization factor of the Symptom Checklist–90 (A. Clark & Friedman, 1983; Derogatis, 1994). The scale used here consists of 16 items which describe a variety of common symptoms, for example, headaches; nausea; upset stomach; tension in jaw, neck, or shoulders. Respondents are required to indicate how much each symptom has bothered them during the past few weeks using a five-point scale ranging from 1 (not at all) to 5 (extremely). Scores range from 16 to 80. In the current study the Cronbach’s alpha coefficient was found to be 0.80.

8.3.4.4 Spiritual wellbeing scale

The Spiritual wellbeing scale of the Functional Assessment of Chronic Illness Therapy (FACIT), which is described in Section 2.4.2.2, focuses on the existential aspects of spirituality and faith. It has 12 items and attempts to tap into the dimensions of religiosity (faith factor) and spirituality (meaning and peace factor). The wording of items does not assume a belief in God. Two items referring to illness (“My illness has strengthened my faith or spiritual beliefs” and “I know that whatever happens with my illness, things will be okay”) were removed for this part of the study as these items would not necessarily be relevant for participants. Items cover issues such as: having a reason to live, finding purpose or meaning in one’s life, finding strength or comfort in one’s faith, and the effect the illness has on one’s faith. The internal consistency for this measure was 0.87 (Cella, 1997). In the current study the Cronbach’s alpha coefficient was found to be 0.76.

8.3.4.5 POMS Short Form

The 37-item Profile of Mood States Short Form (POMS-SF) (Shacham, 1983) was developed with items drawn from the POMS described in more detail in Section 2.4.2.1. Shacham (1983) retained the original six subscales and reduced each by two to seven items. Internal consistency was maintained, while cutting the time for completing the scale by half. The validity was examined by correlating the shortened scales with the original ones; all correlations were above 0.95. Baker, Denniston, Zabora, Polland and Dudley (2002) carried out a further psychometric and structural evaluation of the POMS-SF and found Cronbach’s alpha coefficients ranging from 0.78 to 0.91 for each

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of the six subscales. They also reported that confirmatory factor analysis supported the six-factor interpretation of the POMS-SF. In the current study the Cronbach’s alpha coefficient was found to be 0.95. Cronbach’s alpha coefficients for the subscales were as follows: Tension 0.90; Depression 0.92; Vigor 0.91; Anger 0.91; Confusion 0.83; and

Fatigue 0.92.

8.4 Scale refinement

As recommended by various authors, a number of data checks were undertaken before major analyses were carried out in order to ensure the quality and accuracy of the data and to check that the data is suitable for the planned analyses (Tabachnick & Fidell, 2001). These included:

1. Inspection of univariate descriptive statistics for accuracy of input

a. Out-of-range values

b. Plausible means and standard deviations

2. Evaluation of amount and distribution of missing data

3. Identification and dealing with non-normal variables

a. Checking skewness and kurtosis, probability plots

4. Identification and dealing with outliers

a. Univariate outliers

b. Multivariate outliers

The majority (207: 88%) of the questionnaires in the present study were completed online. The program was set up so that it was compulsory to provide an answer to each question before moving on to the next question, thus reducing the likelihood of missing items. However, some respondents failed to complete the whole questionnaire, stopping at various points. While the whole of the initial meditation scale was completed by 236 respondents, only 185 respondents completed the entire set of questionnaires. No respondent put the same answer for every item.

Once the data was all entered into the computer, accuracy checks were carried out. Frequency distributions were obtained for each item to check for out-of-range responses. Mean scores and standard deviations for each item and scale were also

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obtained and checked for plausibility. Formulae for the reversal of items and the calculation of scale total scores were also checked for accuracy.

A number of graphical and statistical procedures were used to check the distribution of the scores on the scales included in the questionnaire. These included the generation of histograms, box-and-whisker plots and the calculation of statistics such as skewness and kurtosis.

These procedures provide information on overall distribution of the scores and allow detection of extreme scores at either end of the distribution. The influence of outliers was tested by examination of the ‘trimmed mean’ which is obtained by recalculating the mean after the top 5% and bottom 5% of the scores are removed. This has the effect of removing the influence of outliers on the mean score. This is then compared with the mean score of the sample as a whole. If the two values are markedly different, this suggests that the outlying points have a large influence and consideration should be given to their removal. Negatively worded items were reverse scored so that high scores on the scale were indicative of greater effects of meditation.

To enhance the reliability and efficiency of the scales, unsatisfactory items were identified and removed from the scale (DeVellis, 1991; Kline, 1986). These included those with extreme mean scores (less than two or higher than five on the six-point scale, high skewness values (above 1) or a restricted range of responses were removed from the scale. These items do not discriminate among individuals, do not contribute to the scale as whole and may compromise the overall reliability of the scale. However, care was taken to ensure that items considered conceptually important to the scale were not removed.

8.5 Experiences During Meditation scale evaluation

Items which did not meet the above criteria were removed from the scale. The original questionnaire is presented in Appendix Q with markings to indicate which items were removed from the scale at this stage. These items were 11, 14, 33 and 34. This reduced the initial pool of 69 items in this part of the questionnaire to 65. After removal of unsatisfactory items, the psychometric properties of the Experiences During Meditation scale were evaluated, using statistical techniques which included factor analysis.

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8.5.1 Assessing the suitability of the data for factor analysis

Assessing the suitability of data for factor analysis involves a consideration of both sample size and the strength of the relationship among the items. Gable and Wolf (1993) recommend six to ten times as many subjects as there are items in the scale. DeVellis (1991) recommends 300 people but notes that scales have been developed with smaller sample sizes. Thus, while the numbers may be less than ideal, in this initial development phase of the scale, the number of 236 may be considered adequate. Further verification on larger samples is needed.

The strength of the relationship among the items was also assessed in order to determine if factor analysis is appropriate. Correlation coefficients between each pair of variables were calculated and displayed in a correlation matrix. Tabachnick and Fidell (2001) recommend an inspection of this to determine if there are coefficients greater than 0.3. In this case many correlations above 0.3 were found (See Appendix R-1).

There are two main tests to assess whether data is suitable for factor analysis: Bartlett’s Test of Sphericity (Bartlett, 1954) and the Kaiser-Meyer-Olkin (KMO) measure of sampling adequacy (Kaiser, 1970, 1974). The former provides a test of the null hypothesis that there are no correlations between the variables. The value of this statistic must reach significance for factor analysis to be considered suitable. KMO values range between zero and one and small values suggest that factor analysis is not appropriate. Tabachnick and Fidell (2001) recommended KMO values of 0.6 and above for good factor analysis.

The KMO for the Experiences During meditation scale was 0.85 and Bartlett’s test of sphericity reached statistical significance. Thus it can be concluded that the data is suitable for factor analysis.

8.5.2 Methods of extraction

As discussed in section 5.2.4.1, there are several different methods of factor extraction. Principal components analysis (PCA) is used here as it is the most common extraction technique used by scale developers to explore the underlying structure of a scale and is ideally suited to researchers who wish to reduce a large number of items down to a smaller number of factors (Tabachnick & Fidell, 2001).

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8.5.3 Selection of factors for rotation

Following extraction of factors, the number of factors for rotation and further investigation was determined. As discussed in Section 5.2.4.1.1 a number of guidelines may be used for this, including Kaiser’s criterion, in which only factors with an eigenvalue of 1.0 or greater are retained. Catell’s (1966) scree plot was also used in the decision making process, with the number factors indicated by a ‘break’ or ‘elbow’ in the plot.

Another technique involves the use of parallel analysis, in which a random datafile of the same sample size is generated and provides eigenvalues for comparison. Only factors from the original analysis with eigenvalues that exceed the randomly generated criterion values are retained (Horn, 1965; Watkins, 2000). It is then possible to produce a table of factor loadings: the coefficients expressing each standardised variable in terms of the number of factors retained. They indicate how important each factor is for a given variable. Average eigenvalues for 100 randomly generated samples were calculated and compared with those from PCA (see Table 8-3).

Table 8-3 Monte Carlo parallel analysis for Experiences During meditation scale Component number Actual eigenvalue Criterion value Decision

from PCA from parallel analysis

1 15.438 1.9013 accept

2 2.385 1.8216 accept

3 1.953 1.7220 accept

4 1.391 1.6757 reject

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Figure 8-1 Scree plot for Experiences During Meditation scale

The table of eigenvalues in PCA (see Appendix R-1) suggests retaining 16 factors, while inspection of the scree plot suggested a break after four factors (see Figure 8-1) and the results of Monte Carlo parallel analysis suggest retaining three factors. Given the exploratory nature of the analysis these criteria were applied loosely. An exploratory approach was taken appropriate to the early stages of scale development as recommended by Tabachnick and Fidell (2001). Thus, a number of solutions and rotation techniques were attempted, including those forcing three, four, five and six factors. It was decided to initially explore a five-factor solution as this was most interpretable. The first five factors account for 46.5% of the variance.

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8.5.4 Rotation of factors

As mentioned in section 5.2.4.1.4 a process known as rotation is used to improve the interpretability of the factors without changing the underlying mathematical properties (Tabachnick & Fidell, 2001). This process aims to separate the factors into what is known as simple structure, in which separate groups of variables are associated with each factor. Ideally, each factor should load significantly on only some variables and each variable should load significantly (with a correlation above 0.3) on only one factor (Thurstone, 1947).

Examination of the unrotated component matrix for the Experiences During Meditation scale (see Appendix R-2), revealed that not all items loaded substantially on one major underlying component. Therefore, to aid interpretability, the five factor solution was rotated using Oblimin rotation as it was hypothesised that the factors would correlate with each other. See Appendix R-3 for the component matrix, Appendix R-4 for the pattern matrix and Appendix R-5 for the structure matrix.

On inspection of the rotated component matrix given in Appendix R-3 it was decided to carry out a sequence of procedures to remove 34 items. Items were removed if they showed weak loading, did not loading clearly onto one factor and had limited essential conceptual relevance to any particular factor (Tabachnick & Fidell, 2001). The items were removed sequentially and rotated component matrix generated after each removal. In the interests of brevity these are not presented here. At the end of this process items 2, 5, 6, 7, 8, 9, 13, 18, 19, 22, 24, 25, 26, 27, 29, 30, 31, 35, 39, 40, 41, 43, 46, 52, 53, 55, 56, 57, 58, 60, 62, 65, 66 and 67 were removed. Thirty one items remained. Table 8-4 gives the pattern matrix for the five-factor solution with these remaining 31 items. See Appendix R-6 for the structure matrix. While many items were removed at this stage, this was considered necessary for generation of a coherent and usable scale.

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Table 8-4 Pattern matrix for five- factor solution for Experiences During meditation scale

Component 1 2 3 4 5 37 I observe without judgement any positive thoughts or emotions 0.829 that arise 36 I observe without judgement any negative thoughts or emotions 0.802 that arise 32 I observe my thoughts as an impartial observer 0.770 38 I accept my meditation practice however it is going 0.659 54 I experience feelings of gratitude and contentment 0.627 28 I am able to let my thoughts go and not get caught up in them 0.618 42 My mind is alert but still 0.555 23 My perceptions are clearer 0.541 48 I experience fluctuating emotions 0.855 49 I experience feelings of sadness and depression 0.836 50 I experience feelings of anger 0.831 47 I experience intense emotions 0.733 45 I have thoughts or memories which bring an emotional response 0.646 51 I experience feelings of tension and anxiety 0.644 0.315 63 I have an experience of contact with a higher power -0.847 61 I have what I describe as a mystical experience -0.792 68 I experience what are sometimes described as 'psychic -0.737 phenomena' 69 I have a new awareness of order in the universe -0.636 64 I feel a sense of awe and wonder 0.301 -0.604 44 I observe inner colours, sounds or visions -0.602 59 I experience a sense of timeless, boundless, infinite space -0.524 21 I feel my breathing slow down 0.744 1 My body becomes heavy 0.691 20 I feel my heart rate slow down 0.639 3 My body becomes soft and loose 0.608 4 My body awareness changes - as if parts of it were 'missing' or -0.308 0.465 expanding in size or becoming distorted 15 I am aware of physical discomfort 0.814 10 I feel restlessness or twitching of parts of my body 0.786 16 I feel the desire to cough, sneeze, scratch or swallow 0.731 12 I become aware of tightness in parts of my body 0.642 17 I feel the desire to smile or laugh 0.441 Note: only factor loadings above 0.3 are displayed

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8.5.5 Interpretation of factors

Following extraction and rotation of the selected factor solution, attempts were made to label each of the factors obtained. As mentioned in section 5.2.4.1.5, this involves grouping together the variables showing substantial loadings with each of the factors and using these to identify the underlying construct. Most authors suggest minimum loadings of between 0.3 and 0.5 (DeVellis, 1991; Gable & Wolf, 1993) and Tabachnick and Fidell (2001) recommend inspection of the pattern matrix for naturally occurring gaps or breaks. Both these methods were used in this part of the study.

After inspection of the pattern matrix, the five factors were identified and labelled as:

1. Experiences During Meditation Cognitive effects (EDM- Cognitive effects)

2. Experiences During Meditation Emotional effects (EDM-Emotional effects)

3. Experiences During Meditation Mystical experiences (EDM-Mystical experiences)

4. Experiences During Meditation Relaxation (EDM-Relaxation)

5. Experiences During Meditation Physical discomfort (EDM-Physical discomfort)

An Oblimin rotation component correlation matrix (which allows the components to be correlated with one another) was generated for the five subscales of the Experiences During Meditation scale. The results showed low intercorrelations suggesting that the subscales measure different aspects of the medication experience and therefore should not be combined into one scale (see Table 8-5).

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Table 8-5 Component correlation matrix Component EDM- EDM- EDM- EDM- EDM- Cognitive Emotional Mystical Relaxation Physical effects effects experiences discomfort

Cognitive - - - - - effects

Emotional 0.030 - - - - effects

Mystical -0.316 -0.118 - - - experiences

Relaxation 0.201 0.064 -0.228 - -

Physical -0.031 0.286 0.082 0.008 - discomfort

8.5.6 Formation of subscales

The results of the factor analysis suggest the presence of 5 independent sets of items. These items were formed into subscales are listed in Table 8-6.

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Table 8-6 Subscales of the Experiences During Meditation scale Item EDM-Cognitive effects subscale

23 My perceptions are clearer

28 I am able to let my thoughts go and not get caught up in them

32 I observe my thoughts as an impartial observer

36 I observe without judgement any negative thoughts or emotions that arise

37 I observe without judgement any positive thoughts or emotions that arise

38 I accept my meditation practice however it is going

42 My mind is alert but still

54 I experience feelings of gratitude and contentment

EDM-Emotional effects subscale

45 I have thoughts or memories which bring an emotional response

47 I experience intense emotions

48 I experience fluctuating emotions

49 I experience feelings of sadness and depression

50 I experience feelings of anger

51 I experience feelings of tension and anxiety

EDM-Mystical experiences subscale

61 I have what I describe as a mystical experience

63 I have an experience of contact with a higher power

64 I feel a sense of awe and wonder

68 I experience what are sometimes described as 'psychic phenomena'

69 I have a new awareness of order in the universe

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EDM-Relaxation subscale

1 My body becomes heavy

3 My body becomes soft and loose

4 My body awareness changes - as if parts of it were 'missing' or expanding in size or becoming distorted

20 I feel my heart rate slow down

21 I feel my breathing slow down

EDM-Physical discomfort subscale

10 I feel restlessness or twitching of parts of my body

15 I am aware of physical discomfort

16 I feel the desire to cough, sneeze, scratch or swallow

12 I become aware of tightness in parts of my body

17 I feel the desire to smile or laugh

Item scores were summed to produce total values for each subscale. Higher scores represent greater effects and lower scores represent lesser effects. The final scale is given in Appendix S.

8.5.6.1 Subscale intercorrelations

In order to investigate the overlap between the subscales, a Spearman correlation matrix was generated for the subscales (see Table 8-7).

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Table 8-7 Spearman correlation coefficients between subscales at program completion EDM- EDM- EDM- EDM- EDM- Cognitive Emotional Mystical Relaxation Physical effects effects experiences discomfort

Cognitive - - - - - effects

Emotional 0.003 - - - - effects

Mystical 0.523*** 0.062 - - - experiences

Relaxation 0.325*** 0.075 0.336*** - -

Physical -0.019 0.367*** -0.088 0.029 - discomfort

Note: ***p<0.01 Pairwise deletion of missing data was conducted with ns ranging from 217 to 232

A strong positive correlation was observed between EDM-Cognitive effects and EDM- Mystical experiences as well as a moderately strong positive correlation between EDM- Cognitive effects and EDM-Relaxation. Moderately strong positive correlations between EDM-Emotional effects and EDM-Physical discomfort and between EDM-Mystical experiences and EDM-Relaxation were also observed.

While there is some overlap, particularly between EDM-Cognitive effects and EDM- Mystical experiences (similar to the result of the analysis presented in Table 8-5), these results and conceptual issues suggest that the subscales are largely tapping different aspects of meditation and should be considered separately. The combination of subscales into one measure is not supported conceptually or by these results.

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8.5.7 Reliability

In this section descriptive statistics for each subscale are presented (see Table 8-8). There is also a discussion of the reliability analyses for the subscales and in section 8.5.8, a discussion of the analyses performed to investigate the validity for each subscale.

Table 8-8 Descriptive statistics for subscales Number N Mean Median SD Minimum Maximum Cronbach’s Mean of items alpha inter- in scale item correlation

EDM- 8 219 4.27 4.25 0.93 1.75 6.00 0.87 0.46 Cognitive effects

EDM- 6 219 2.48 2.33 1.00 1.00 5.33 0.86 0.52 Emotional effects

EDM- 5 217 2.63 2.40 0.19 1.00 6.00 0.86 0.55 Mystical experiences

EDM- 5 232 3.62 3.70 1.02 1.20 6.00 0.68 0.30 Relaxation

EDM- 5 235 2.85 2.33 1.08 1.00 6.00 0.87 0.38 Physical discomfort

Note: The scores in the table represent the summed item scores divided by the number of items, with a resulting scale of 1 to 6

Cronbach’s (1951) coefficient alpha values were calculated for the subscales. These values range from 0 to 1 with higher levels indicating higher levels of internal consistency. This term refers to the homogeneity of the items that make up the scale. As mentioned in section 5.2.5, Nunnally (1978) recommends a minimum level of 0.7 while DeVellis (1991) considers values below 0.6 unacceptable. For these subscales

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Cronbach alpha values ranged between 0.68 and 0.87, which are considered acceptable, particularly given the small number of items involved.

The mean inter-item correlation also gives an indication of a scale’s internal consistency. Briggs and Cheek (1986) recommend an optimal value of between 0.2 and 0.4. In this study values range between 0.30 and 0.55. In this case the mean inter-item correlation values for the EDM-Mystical experiences and EDM-Emotional effects subscales may be too high. However, it was considered inadvisable to shorten the scales as they only contain 5 items each and the Cronbach alpha values were acceptable. In the case of the EDM-Mystical experiences subscale it was felt that, although the construct may be narrow such experiences may have profound effects in terms of the effects of meditation.

8.5.8 Validity

As discussed in section 5.2.6 there are a number of different types of validity that can be considered in the assessment and evaluation of a new scale. In this section, the processes undertaken to address the construct validity of the scale are addressed.

Construct validation of a scale involves testing the scale’s performance in terms of theoretically derived predictions or hypotheses concerning the nature of the underlying construct. An important part of exploring a scale’s construct validity involves assessing the pattern of correlations between the new scale and other existing measures. Support for a scale’s construct validity may be explored by examining the relationship with other constructs both related (convergent validity) and unrelated (discriminant validity). Gable and Wolf (1993) note that it is the direction and magnitude of the relationships in the light of theoretical expectations that is important. Kline (1993) comments that it is important to show what a scale is not measuring.

In this part of the study, the relationship between subscale scores and the following groups of variables and scales were explored:

a) the background variables of age, gender, education level and employment status

b) aspects of meditation experience

c) scores on the PCOISS, MAAS, Spiritual wellbeing, POMS and Physical Symptom Checklist scales described in section 8.3.4.

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8.5.8.1 Effects of sociodemographic variables on subscale scores

A number of statistical analyses were carried out to explore subscale score differences in relation to age, gender, relationship status, level of education and employment status. While some of the subscales were normally distributed and others were not, in the interests of simplicity, it was decided to use non-parametric statistics for all analyses.

It was hypothesised that the experience of meditation would not differ according to these sociodemographic factors. The results are given in Table 8-9, Table 8-10, Table 8-11 and Table 8-12.

Table 8-9 Spearman correlations between age and Experiences During Meditation subscale scores Age

Cognitive effects 0.103

Emotional effects -0.128

Mystical experiences 0.004

Relaxation -0.103

Physical discomfort -0.166*

Note: * p<0.05 Pairwise deletion of missing data was conducted with ns ranging from 217 to 232.

It was hypothesized that age would not be strongly correlated with scores on any subscale and as can be seen in Table 8-9 this was found to be the case.

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Table 8-10 Gender differences in Experiences During Meditation subscale scores Female Male

Mean rank n Mean rank N Z p

Cognitive effects 101.30 135 123.98 84 -2.58 0.010

Emotional effects 115.56 135 101.07 84 -1.65 0.099

Mystical experiences 107.59 133 111.23 84 -0.42 0.677

Relaxation 125.91 141 101.91 91 -2.67 0.008

Physical discomfort 113.57 143 124.89 92 -1.25 0.212

The results of the Mann Whitney U test given in Table 8-10 suggest that men score significantly higher than women on the EDM-Cognitive effects subscale while women score significantly higher on the EDM-Relaxation subscale. These results may require further investigation.

Table 8-11 Relationship status differences in Experiences During Meditation subscale scores Partnered Non-partnered

Mean rank n Mean rank n Z p

Cognitive effects 109.26 120 110.89 99 -0.190 0.849

Emotional effects 107.58 120 112.93 99 -0.622 0.534

Mystical experiences 104.29 119 114.71 98 -1.219 0.223

Relaxation 121.66 126 110.37 106 -1.279 0.201

Physical discomfort 115.47 127 120.98 108 -0.620 0.535

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It was hypothesised that scores on the Experiences During Meditation subscales would not vary according to relationship status. The sample was divided into partnered and non-partnered groups and the scores were compared. No significant differences were found.

Table 8-12 Level of education differences in Experiences During Meditation subscale scores Tertiary educated Non-Tertiary educated

Mean rank n Mean rank n Z p

Cognitive effects 111.99 188 97.94 31 -1.145 0.252

Emotional effects 114.12 188 85.02 31 -2.373 0.018

Mystical experiences 108.61 186 111.35 31 -0.226 0.821

Relaxation 114.97 201 126.42 31 -0.886 0.376

Physical discomfort 120.65 204 100.56 31 -1.536 0.125

It was also hypothesised that scores on the Experiences During Meditation subscales would not vary according to educational status. The sample was divided into tertiary educated (including trade training) and non-tertiary educated groups and the scores were compared. The results showed that the scores on the EDM-Emotional effects subscale did differ according to level of education. However, this difference only reached statistical significance at the p=0.05 level and given the considerable difference in the numbers in each group, it is suggested that these results should be interpreted cautiously.

8.5.8.2 Links between meditation experience and subscale scores

It was hypothesised that certain aspects of meditation practice would correlate significantly with subscale scores, with greater number of years of practice, self-rated proficiency and benefits in everyday life correlated with greater effects on all subscales with the exception of the EDM-Physical discomfort subscale. Thus, participants were

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asked a number of questions about their meditation practice including length of time since starting a practice, time spent meditating, self-rated proficiency of meditation on a scale of 1 to 10 and the effects of meditation felt in everyday life, also on a 1 to 10 scale.

Meditation methods and traditions of participants varied widely and included mindfulness meditation, vipassana, Tibetan Buddhist, Stillness meditation and Osho meditations. Mean (SD) minutes per week spent in meditation was 265 (522) with a median of 155. Further details of the participants’ mediation practices are given in Table 8-13 and Table 8-14.

Table 8-13 Details of meditation practice N Mean Median Standard Minimum Maximum Deviation

Minutes per week spent 236 256 155 522 0 7140 in meditation

Self-rated proficiency of 235 6.23 6.00 2.11 1 10 meditation on a 1 to 10 scale

Extent of benefits felt in 236 8.27 9.00 1.85 1 10 everyday life on a 1 to 10 scale

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Table 8-14 Length of time since start of meditation practice Time n Percent

<1 month 3 1.3

1-6 months 11 4.7

6-12 months 21 8.9

1-2 years 20 8.5

2-5 years 40 16.9

5-10 years 44 18.6

10-20 years 43 18.2

>20 years 54 22.9

Total 236 100.0

In order to assess the links between the aspects of meditation experience described above and subscale scores, Spearman correlation coefficients were calculated and are given in Table 8-15.

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Table 8-15 Spearman correlations between subscale scores and aspects of meditation experience Minutes Self-rated Benefits in Length of time meditation per proficiency everyday life having a week meditation practice

Cognitive 0.168* 0.447*** 0.485*** 0.348*** effects

Emotional 0.054 -0.013 -0.020 0.033 effects

Mystical 0.065 0.367*** 0.295*** 0.184* experiences

Relaxation -0.097 0.225** 0.107 -0.138

Physical -0.143* -0.152* -0.139* -0.030 discomfort

* p<0.05; ** p<0.01; ***p<0.001 Pairwise deletion of missing data was conducted with ns ranging from 217 to 232

The number of minutes spent in meditation per week correlates only very weakly with EDM-Cognitive effects (positively) and EDM-Physical discomfort (negatively). Thus, similarly to the results of the analyses reported in Chapter 5, 6 and 7, it does not appear that the time spent in meditation is necessarily related to experiences during meditation.

Proficiency of meditation, self-rated on a scale of 1 (least) to 10 (greatest), correlates with EDM-Cognitive effects and EDM-Mystical experiences, and weakly with EDM- Relaxation and EDM-Physical discomfort (negatively). Ratings of the benefits of meditation in everyday life on a scale of 1 (least) to 10 (greatest), correlate with EDM- Cognitive effects and EDM-Mystical experiences and weakly with EDM-Physical discomfort (negatively). These results support the hypothesis that it is the quality of the meditation experience rather than the time spent that is important for beneficial effects. The length of time participants had a meditation practice correlates with EDM- Cognitive effects and weakly with EDM-Mystical experiences. These results find some support in the traditional meditation literature which reports that mystical experiences 352 Chapter Eight: Effects of Meditation Scale Development

are not common in all meditators but may have profound effects if they do happen. In some cases, such experiences occur in relatively inexperienced meditators while some experienced meditators may never have such experiences.

8.5.8.3 Correlations with other scales

To assess the construct validity of the Experiences During Meditation subscales, scores on these were correlated with scores on the PCOISS, MAAS, Spiritual wellbeing scale, POMS Short-Form (and subscales) and the Physical Symptom Checklist (see Table 8-17). Prior to carrying out these correlations a data screening process was carried out.

8.5.8.3.1 Data screening

Descriptive statistics were generated for all validation scales and subscales and are given in Table 8-16. These were checked for plausibility and accuracy. Histograms and boxplots were generated for each validation scale and checked for outliers and normality of distribution. These are presented in Appendix R, Figures R-1 to R-11. A number of outliers were found and these were removed after visual inspection and if their scores were greater than 3 SDs from mean. This included one individual who responded with a maximum score for every item on every scale (Case ID 72887).

Case ID 72340 was also removed from the PCOISS as the score was 3.8 SD below the mean. Case ID 74123 was removed from the Spiritual wellbeing scale as the score was 3.2 SD below the mean.

It was found that the PCOISS, MAAS and POMS Short Form scales were normally distributed while the Spiritual wellbeing and Physical Symptom Checklist scales were not normally distributed (See Appendix R, Figures R-12 to R-16).

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Table 8-16 Descriptive statistics for validation scales

Scale N Mean Median Standard Minimum Maximum Deviation PCOISS 193 70.02 71 11.34 44 90 Physical Symptom 184 25.00 23 7.05 16 48 Checklist MAAS 193 37.12 36 11.80 15 81 Spiritual wellbeing 191 30.25 31 7.13 10 40 POMS 187 31.65 29 23.59 -17 109 Depression 188 11.11 10 5.96 0 34 Vigor 189 19.60 20 5.17 6 30 Anger 189 10.46 9 5.56 0 29 Tension 189 10.63 10 5.37 0 25 Confusion 189 8.05 8 4.00 0 20 Fatigue 188 10.81 10 5.20 0 25

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Table 8-17 Spearman correlations with other scales EDM- EDM- EDM- EDM- EDM- Cognitive Emotional Mystical Relaxation Physical effects effects experiences discomfort

Physical -0.198** 0.285*** -0.142 -0.007 0.128 Symptom Checklist

PCOISS 0.478*** -0.218** 0.372*** 0.163* -0.091

MAAS 0.414** 0.252*** -0.192** -0.079 0.166*

POMS TMD -0.174* 0.401*** -0.147* -0.099 0.238**

Depression -0.08 0.361** -0.013 -0.102 0.221**

Vigor 0.367*** -0.004 0.276*** 0.069 0.028

Anger -0.029 0.406*** -0.014 -0.054 0.212**

Tension -0.012 0.389*** -0.189** -0.028 0.284**

Confusion -0.099 0.305*** -0.048 -0.135 0.200**

Fatigue -0.071 0.310*** -0.113 -0.04 0.161*

Spiritual 0.532*** 0.195** 0.438*** 0.217** -0.031 wellbeing

* p<0.05; ** p<0.01; ***p<0.001 Pairwise deletion of missing data was conducted with ns ranging from 183 to 193

8.5.8.3.2 PCOISS

The PCOISS assesses the degree to which someone feels able to control his or her internal states and emotions. This is relevant to a discussion of meditation in a stress management context as on a general level, a person who perceives that they have good skills in managing their emotions and internal states may be less likely to interpret a given situation as a threat to wellbeing, irrespective of the degree to which the situation itself can be controlled (Pallant, 2000).

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The concept of controlling one’s internal states is somewhat different to the definition of meditation as non-judgemental awareness of thoughts. Many of the items on the PCOISS centre on controlling thoughts and emotions and staying relaxed, for example “If I start to worry about something I can usually distract myself and think about something nicer” and “I am usually able to keep my thoughts under control”. The items in the EDM-Emotional effects subscale relate to awareness of emotions without attempts to control these. However, some items on the PCOISS may be conceptually similar to those on the EDM-Cognitive Effects subscale, for example, the PCOISS items “I find it hard to stop myself from thinking about my problems” and “I don’t have much control over my emotional reactions to stressful situations” may be seen as similar to the EDM- Cognitive Effects items “I am able to let my thoughts go and not get caught up in them” and “I observe my thoughts as an impartial observer”.

The items on the PCOISS do not refer to physical effects of relaxation as do the items on the EDM-Relaxation and EDM-Physical discomfort subscales. Thus, it was anticipated that scores on the PCOISS would correlate with the EDM-Cognitive effects subscale but not necessarily with the other subscales. This was seen to be the case with a moderate correlation with the EDM-Cognitive Effects subscale (rho=0.478, p<0.001). The correlation with the EDM-Emotional effects subscale was a weak negative one (rho=-0.218, p<0.01). PCOISS scores also correlated significantly with the EDM- Mystical experiences subscale (rho=0.372, p<0.001). It may be that the EDM-Mystical Experiences subscale taps into a depth of meditation experiences which allows a high perceived control of internal states, although this may require further investigation.

8.5.8.3.3 MAAS

The MAAS is a measure of mindfulness that focuses on the presence or absence of attention to and awareness of what is occurring in the present moment. The concept of mindfulness has roots in Buddhist tradition where conscious attention and awareness are deliberately cultivated, typically through meditation. Mindfulness may be viewed as a naturally occurring characteristic which differs both between and within individuals (Brown & Ryan, 2003). It was hypothesised that MAAS scores would correlate with scores on the EDM-Cognitive Effects subscale.

Items in the EDM-Emotional Effects subscale focus on awareness of emotional states. Brown and Ryan (2003) note that mindfulness is related to other constructs such as

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emotional intelligence as described by Salovey et al. (1995) which includes perceptual clarity about one’s emotional states. Thus, it was hypothesised that MAAS scores would correlate with those on the EDM-Emotional effects subscale. MAAS scores were found to correlate most strongly with scores on the EDM-Cognitive effects subscale (rho=0.414, p<0.01) and relatively weakly with scores on the EDM-Emotional effects subscale (rho=0.252, p<0.001). Thus it may be concluded that the EDM-Cognitive Effects subscale is tapping into the mindfulness dimension of the meditation experience.

8.5.8.3.4 Physical Symptom Checklist

As outlined in Section 1.8.2, the induction of relaxation by various meditation practices has been well documented in the literature and it is likely to contribute to the beneficial effects of meditation in the management of stress-related disorders. Several studies have assessed the efficacy of meditation in the treatment of stress-related disorders including psoriasis and fibromyalgia (see section 1.8.5).

The Physical Symptom Checklist is a measure of the physical symptoms of stress and it was expected that scores on this scale would correlate with EDM-Relaxation and EDM- Physical discomfort subscales. However this was not found to be the case and only a weak correlation with the EDM-Emotional effects subscale was seen (rho=0.285, p<0.001). Some of the items on the EDM-Emotional effects subscale relate to negative emotions and it may be that those experiencing such negative emotions are more likely to suffer symptoms of stress. These results may require further investigation.

8.5.8.3.5 POMS-SF

Considerable research effort has centred around the use of meditation as a self- regulation strategy to address stress and pain management. There have also been a number of studies of the use of meditation to enhance relaxation and physical health in those with medical and psychiatric diagnoses. Kabat-Zinn et al. (1992) propose that mindfulness meditation may have beneficial effects in those with mood disturbances as sustained, non-judgemental observation of anxiety-related or depressive thoughts, without attempts to escape or avoid them may lead to the understanding that they are “just thoughts,” rather than accurate reflections of reality. This may help to reduce the emotional reactivity usually linked to symptoms (Kabat-Zinn, 1982; Kabat-Zinn et al., 1992). It was hypothesised that scores on the EDM-Cognitive effects subscale would be

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inversely correlated with POMS-SF TMD and subscale scores. However, scores on the EDM-Cognitive effects subscale only correlated with scores on the EDM-Vigor subscale (rho=0.367, p<0.001). This may support the proposal of Carlson, Ursuliak, Goodey, Angen, and Speca (2001) that the POMS may not be the most appropriate measure for the assessment of benefits of meditation interventions as it largely assesses negative mood states and may have limited usefulness in the assessment of positive outcomes associated with meditation and mindfulness. Thus, these results may require further exploration.

Some of the items on the EDM-Emotional effects subscale relate to negative emotions and it may be that those experiencing such negative emotions are more likely to suffer mood disturbance. It was therefore anticipated that scores on the POMS-SF TMD and subscales other than POMS-Vigor would correlate with scores on the EDM-Emotional effects subscale. This was found to be the case. A relatively weak correlation between POMS-SF TMD scores and scores on the EDM-Physical discomfort subscale was also found (rho=0.238, p<0.01). Weak correlations were also seen between the EDM- Physical discomfort subscale and other POMS-SF subscales, raising the possibility that this subscale is tapping into some of the physical aspects linked to mood disturbance.

8.5.8.3.6 Spiritual wellbeing

As mentioned in section 1.8, there has been a trend to de-emphasize the religious and spiritual dimensions of meditation practice and to focus clinical and research effort on the physiological and psychological effects of meditation practices. However, the history of meditative practice traditionally links meditation with religion and incorporates the concept of a spiritual reality larger and more valuable but inclusive of the personal self. Spiritual issues are of significance for many people who meditate.

As mentioned in section 8.3.4.4 the Spiritual wellbeing scale of the Functional Assessment of Chronic Illness Therapy (FACIT) focuses on the existential aspects of spirituality and faith. The items attempt to tap religiosity (faith factor) and spirituality (meaning and peace factor). It was hypothesised that scores on this scale would correlate with scores on the EDM-Cognitive effects and EDM-Mystical experiences subscales. This was found to be the case and a weak correlation with the EDM- Relaxation subscale was also seen (rho=0.217, p<0.01).

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8.6 Effects of Meditation in Everyday Life scale evaluation

As mentioned in section 8.1 it was decided to divide the proposed scale assessing the effects of meditation into two main sections: Experiences During Meditation and Effects of Meditation in Everyday Life. This section describes the development of a scale to assess the Effects of Meditation in Everyday Life.

As with the Experiences During Meditation scale, three items which did not meet the criteria discussed in section 8.4 were removed from the Effects of Meditation in Everyday Life scale. The original questionnaire is presented in Appendix Q with markings to indicate which items were removed from the scale at this stage. These items were 20, 41 and 65. This reduced the initial pool of 68 items to 65.

8.6.1 Assessing the suitability of the data for factor analysis

As discussed in section 8.6.1, various methods were used to assess the suitability of the data for factor analysis. These included assessment of the correlation coefficients displayed in the correlation matrix, Bartlett’s Test of Sphericity (Bartlett, 1954) and the Kaiser-Meyer-Olkin (KMO) measure of sampling adequacy (Kaiser, 1970, 1974).

In the case of the Effects of Meditation in Everyday Life pool of items many correlations above 0.3 were found. The KMO for the ‘Everyday life’ scale was 0.945 and Bartlett’s test of sphericity reached statistical significance. Thus it can be concluded that the data is suitable for factor analysis.

8.6.2 Extraction and selection of factors for rotation

As with the Experiences During Meditation scale, the extraction technique chosen here was that of PCA. Following extraction of factors, the number of factors for rotation and further investigation was determined. As discussed in Section 5.2.4.1.1 a number of guidelines may be used for this, including Kaiser’s criterion, in which only factors with an eigenvalue of 1.0 or greater are retained. Catell’s (1966) scree plot was also used in the decision making process. In addition, parallel analysis was performed using Monte Carlo PCA for Parallel Analysis (Horn, 1965; Watkins, 2000). Average eigenvalues for 100 randomly generated samples were calculated and compared with those from PCA (see Table 8-18).

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For the Effects of Meditation in Everyday Life scale the table of eigenvalues in PCA suggests retaining 10 factors (see Appendix R-7), while the scree plot suggests retaining five factors and the results of parallel analysis suggest retaining two factors for further investigation.

Table 8-18 Monte Carlo parallel analysis for Effects of Meditation in Everyday Life scale Component number Actual eigenvalue Criterion value Decision

from PCA from parallel analysis

1 26.085 2.0539 accept

2 2.752 1.9813 accept

3 1.744 1.8919 reject

4 1.684 1.8200 reject

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Figure 8-2 Scree plot for Effects of Meditation in Everyday Life scale

As in section 8.5.3, given the exploratory nature or the analysis these criteria were applied loosely. An exploratory approach was taken appropriate to the early stages of scale development as recommended by Tabachnick and Fidell (2001). The unrotated component matrix for the Effects of Meditation on Everyday life scale is given in Appendix R-8.

8.6.3 Rotation of factors

As in section 8.5.4 Oblimin rotation was used in an attempt to improve the interpretability of the factors without changing the underlying mathematical properties (Tabachnick & Fidell, 2001). This process aims towards separating the factors into what is known as simple structure, in which separate groups of variables are associated with each factor. See Appendix R-9 for the pattern matrix and Appendix R-10 for the structure matrix.

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The rotation was then repeated several times with every attempt made to explore a variety of factor solutions. However, it was not possible to identify and separate factors. It can be seen from Table Table 8-19 that the majority of items load above 0.6 on a single factor. Inspection of the structure matrix (Appendix R-10) suggests that the factors are poorly defined, lack discrimination and are not discrete. This high intercorrelation of factors was seen for all factor solutions attempted, with all values greater than 0.4.

Thus, it was decided to use a single factor solution (see Table 8-19). This factor accounted for 49% of the variance. The use of a single factor solution may be supported by the considerable conceptual interconnections between the items. A high score on one aspect of this scale might be expected to be linked to and influence other facets.

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Table 8-19 Component matrix for single factor solution Component 58 I am more self-confident 0.819 36 I am more adaptable or flexible in new circumstances 0.819 54 I feel as if I am handling life better 0.812 55 I generally feel more positive about life 0.799 53 I experience more happiness and joy in life 0.797 34 I cope better with stressful or negative experiences and feelings 0.794 44 I am more compassionate and empathic 0.787 60 I feel a sense of inner peace and strength 0.768 52 I generally feel calmer and more centred 0.768 30 My state of mind is more balanced 0.767 63 I am more able to trust my inner nature and wisdom 0.765 17 I am generally more relaxed 0.763 23 I am able to think more clearly 0.762 33 I have a different way of coping and responding to what is going on in life 0.757 57 I am less anxious 0.752 35 I am more able to appreciate and be positive about everyday life 0.749 59 I am less depressed 0.746 15 I am more able to function effectively in everyday life 0.739 49 I have less conflict with others 0.735 22 I have better mental focus and concentration 0.735 14 I am less affected by fears and obsessive behaviour patterns 0.733 43 I feel closer to the people in my life 0.731 21 I have less destructive behaviour 0.731 27 I find it easier to make decisions 0.725 56 I am less quick to anger 0.724 39 I am more able to forgive myself and others and move on 0.722 42 I am happier with my relationships 0.722 25 I have better problems solving skills 0.718 37 I spend less time preoccupied with the past or the future 0.717 46 I am less likely to act on my desires at the expense of others 0.715 28 I have a better understanding of myself and others 0.712 51 I am less emotionally reactive 0.702 4 I cope better with pain or am less influenced by pain 0.701 29 I am more aware of the effects of my behaviours 0.699

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48 I make more effort to avoid causing suffering to others 0.698 3 I cope better with physical symptoms of stress 0.697 10 I feel a sense of physical wellbeing 0.696 38 I am more able to focus on what is happening in the present moment (eg. 0.690 jobs, tasks, driving) 67 I experience more fulfilment and meaning in life 0.687 62 I experience a sense of the inter-connectedness of life 0.683 61 I experience a sense of calm control over life and thoughts 0.683 31 I am more creative 0.679 50 My family and friends have noticed that meditation has benefited me 0.675 45 I am less judgemental of myself and others 0.671 18 I am less affected by strong desires or impulses 0.668 2 I experience fewer physical symptoms of stress 0.668 64 I have a greater awareness of personal responsibility 0.664 13 I am less affected by habits such as biting nails, teeth grinding etc 0.663 47 My social networks have changed for the better 0.662 66 I have noticed a change in my values and vision of life 0.656 9 My sensory perception is better 0.655 40 I am able to contact my inner stillness when I need to 0.642 8 I am more aware of body sensations and responses 0.639 19 I have made healthy lifestyle changes 0.638 12 I have better control over my eating habits 0.631 16 I am more organised and efficient 0.618 7 I have more energy or vitality 0.588 24 My memory is better 0.576 11 I suffer fewer illnesses or symptoms of illness 0.562 6 I cope better with tiredness 0.555 26 I recognise that thoughts are just thoughts rather than accurate reflections of 0.542 reality 5 I sleep better 0.482 68 I have had 'out of the ordinary' or 'mystical' experiences in daily life 0.427 32 I have better dream recall 0.380

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8.6.4 Scale formation

At this stage the scale consisted of 65 items, which was considered too long and a decision was made to reduce the number of items to 30. It was felt that a scale with this number of items would be long enough to enable a broad assessment of the effects of meditation without being too time-consuming to complete. In deciding which items to retain, an attempt was made to cover the major dimensions of the effects of meditation in everyday life. The dimensions initially included in the questionnaire were the physical, cognitive, emotional and expanded consciousness dimensions and a consideration of these was used to guide the decision-making process. Items that were considered to be duplicating other items and those considered to be of limited conceptual relevance were removed. Consideration was also given to the strength of the loadings given in Table 8-19. The final scale of 30 items is given in Table 8-20 and in Appendix S.

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Table 8-20 30-item scale of the Effects of Meditation in Everyday Life Number Item 54 I feel as if I am handling life better 36 I am more adaptable or flexible in new circumstances 58 I am more self-confident 55 I generally feel more positive about life 53 I experience more happiness and joy in life 34 I cope better with stressful or negative experiences and feelings 44 I am more compassionate and empathic 30 My state of mind is more balanced 52 I generally feel calmer and more centred 60 I feel a sense of inner peace and strength 17 I am generally more relaxed 63 I am more able to trust my inner nature and wisdom 23 I am able to think more clearly 57 I am less anxious 59 I am less depressed 49 I have less conflict with others 22 I have better mental focus and concentration 39 I am more able to forgive myself and others and move on 14 I am less affected by fears and obsessive behaviour patterns 21 I have less destructive behaviour 29 I am more aware of the effects of my behaviours 37 I spend less time preoccupied with the past or the future 51 I am less emotionally reactive 3 I cope better with physical symptoms of stress 38 I am more able to focus on what is happening in the present moment (eg. jobs, tasks, driving) 67 I experience more fulfilment and meaning in life 62 I experience a sense of the inter-connectedness of life 45 I am less judgemental of myself and others 50 My family and friends have noticed that meditation has benefited me 18 I am less affected by strong desires or impulses

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8.6.5 Reliability

In this section descriptive statistics for the Effects of Meditation in Everyday Life scale are presented. There is also a discussion of the reliability analyses for the scales and in section 8.6.6, a discussion of the analyses performed to investigate the validity of the subscale.

Descriptive statistics for the final Effects of Meditation in Everyday Life scale are given in Table 8-21.

Table 8-21 Descriptive statistics for Effects of Meditation in Everyday Life scale Number N Mean Median SD Minimum Maximum Cronbach’s Mean of items alpha inter- in scale item correlation

Effects of 30 198 4.86 4.98 0.93 1.06 6.00 0.97 0.57 Meditation in Everyday Life

Note: The scores in the table represent the summed item scores divided by the number of items, with scores ranging from 1 to 6

The Cronbach’s (1951) coefficient alpha values was calculated for the scale and was found to be 0.97, which is considered acceptable. The mean inter-item correlation also gives an indication of a scale’s internal consistency. Briggs and Cheek (1986) recommend an optimal value of between 0.2 and 0.4. For this scale the value is 0.57.

8.6.6 Validity

As discussed in section 5.2.5 there are a number of different types of validity that can be considered in the assessment and evaluation of a new scale. In this section, the processes undertaken to address the construct validity of the scale are addressed.

As with the Experiences During Meditation subscales, an important part of exploring a scale’s construct validity involves assessing the pattern of correlations between the new 367 Chapter Eight: Effects of Meditation Scale Development

scale and other existing measures. In this part of the study, the relationship between scale scores and the following groups of variables and scales were explored:

d) the background variables of age, gender, education level and employment status

e) aspects of meditation experience

f) scores on the PCOISS, MAAS, Spiritual wellbeing, POMS and Physical symptoms checklist scales described in section 8.3.4.

8.6.6.1 Effects of sociodemographic variables on subscale scores

A number of statistical analyses were carried out to explore scale score differences in relation to age, gender, relationship status, level of education and employment status. As with the Experiences During Meditation subscales, in the interests of simplicity, it was decided to use non-parametric statistics for all analyses. It was hypothesised that these sociodemographic factors would not correlate significantly with scale scores. The results are given in Table 8-22.

Age was not significantly correlated with Effects of Meditation in Everyday Life scores (Spearman rho= 0.056, p=0.434). A Mann-Whitney U test showed that scores on the scale were significantly higher in men while they did not differ according to relationship status, level of education and employment status.

Table 8-22 Gender differences in subscale scores Female Male

Mean n Mean N Z p rank rank

Effects of Meditation in Everyday 89.90 120 114.43 78 -2.957 0.003 Life

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Table 8-23 Relationship status differences in subscale scores Partnered Not partnered

Mean n Mean n Z p rank rank

Effects of Meditation in Everyday 104.24 109 93.69 89 -1.289 0.197 Life

Table 8-24 Level of education differences in subscale scores Tertiary Non-tertiary educated educated

Mean n Mean rank n Z p rank

Effects of Meditation in 99.57 172 99.06 26 -0.042 0.966 Everyday Life

8.6.6.2 Links between meditation practice and Effects of meditation in Everyday Life scale

It was hypothesised that certain aspects of meditation practice would correlate significantly with subscale scores. In order to assess the links between the aspects of meditation experience described in section 8.5.8.2 and subscale scores Spearman correlation coefficients were calculated and are given in Table 8-15.

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Table 8-25 Spearman correlations between aspects of meditation practice and scores on Effects of Meditation in Everyday Life scale Minutes Self-rated Benefits in Length of time meditation per proficiency everyday life having a week meditation practice

Effects of 0.336*** 0.369*** 0.603*** 0.387*** Meditation in Everyday Life

***p<0.001 Pairwise deletion of missing data was conducted with ns ranging from 197 to 198

Minutes per week spent in meditation, self-rated proficiency, a rating of benefits in everyday life and the length of time having a meditation practice were all correlated with scores on the Effects of Meditation in Everyday Life scale. As expected, the correlation was particularly strong for the self-rated benefits of meditation in everyday life.

8.6.6.3 Correlations with other scales

Links between Effects of Meditation in Everyday Life and other scales were explored and are given in Table 8-26. It was anticipated that scores on the Effects of Meditation in Everyday Life scale would correlate positively with scores on the PCOISS, MAAS, Spiritual wellbeing and POMS Vigor scales and negatively with scores on the SCL, POMS TMD, Depression, Anger, Tension and Confusion. All these correlations were significant in the expected direction.

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Table 8-26 Spearman correlations with other scales Correlations with Effects of Meditation in Everyday Life

Symptom checklist -0.314***

PCOISS 0.645***

MAAS 0.512***

POMS TMD -0.388***

Depression -0.332***

Vigor 0.365***

Anger -0.241**

Tension -0.320***

Confusion -0.310***

Fatigue -0.223**

Spiritual wellbeing 0.642***

* p<0.05; ** p<0.01; ***p<0.001 Pairwise deletion of missing data was conducted with ns ranging from 183 to 198.

8.6.6.3.1 PCOISS

As discussed in section 8.5.8.3.2 the PCOISS assesses the degree to which someone feels able to control his or her internal states and emotions. Thus, higher perceived control of internal states and better stress management abilities might be expected to be reflected in greater effects of meditation in everyday life. Some of the items on the PCOISS such as “I am usually able to keep my thoughts under control” and “Even when under pressure I can usually keep calm and relaxed” are conceptually similar to some of those on the Effects of Meditation in Everyday Life scale such as “I experience a sense of calm control over life and thoughts” and “I am generally more relaxed”. The high correlation (rho=0.645, p<0.001) between the PCOISS and Effects of Meditation in Everyday Life scale suggests that the latter scale is tapping into the stress management effects of an ability to control internal states and emotions in everyday life.

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8.6.6.3.2 MAAS

The MAAS focuses on the presence or absence of attention to and awareness of what is occurring in the present moment. Mindfulness meditation centres around developing the ability to non-judgmentally observe the way the mind works in order to develop more realistic perceptions and greater appreciation of positive as well as negative experiences. While the items in the MAAS tap into the ability to be aware of the present moment, a consequence of the ability to stay focused on the present is the realisation that thoughts, emotions and sensations are transient. This may allow the development of new way of coping with experiences and problems. Eastern spiritual traditions suggest that regular practice of mindfulness meditation develops positive qualities such as insight, wisdom, compassion and equanimity (Kabat-Zinn, 2000). Several of the items in the Effects of Meditation in Everyday Life scale relate to these qualities.

Some of the items on the Effects of Meditation in Everyday Life scale attempt to tap into the ability to stay present including “I spend less time preoccupied with the past or the future” and I am more able to focus on what is happening in the present moment for example, jobs, tasks, driving” while others attempt to tap new ways of coping with experiences and problems, such as “I cope better with stressful or negative experiences and problems” and “I feel as if I am handling life better”. Thus it was hypothesized that higher levels of mindfulness as measured by the MAAS would be expected to correlate with scores on the Effects of Meditation in Everyday Life scale. Scores on the two scales were found to be strongly correlated (rho=0.512, p<0.001) thus it seems that the Effects of Meditation in Everyday Life scale is tapping into the ability to stay present to what is occurring in the moment.

8.6.6.3.3 Physical Symptom Checklist

As outlined in Section 1.8.2, the induction of relaxation by various meditation practices is likely to contribute to the beneficial effects of meditation in the management of stress-related disorders. One of the items on the scale “I cope better with the physical symptoms of stress” attempts to assess this. As the Physical Symptom Checklist is a measure of the physical symptoms of stress it was hypothesised that scores on this scale would be negatively correlated with scores on the Effects of Meditation in Everyday Life scale. This was found to be the case (rho=-0.314, p<0.001).

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8.6.6.3.4 POMS-SF

As mentioned in Section 8.6.6.3.4 much research effort has explored the links between meditation and emotional wellbeing. Several questions in the Effects of Meditation in Everyday Life scale attempt to address mood, namely, “I am less anxious”, “I am less depressed”, “I generally feel more positive about life” and “I experience more happiness and joy in life”. Thus, it was hypothesized that greater mood disturbance and scores on the POMS-SF subscales (other than Vigor) would be associated with lower scores on the Effects of Meditation in Everyday Life scale. This was found to be the case (see Table 8-26). Thus, it seems that the Effects of Meditation in Everyday Life scale is tapping into the effects of meditation on emotional wellbeing in everyday life.

8.6.6.3.5 Spiritual wellbeing

As mentioned in section 8.5.8.3.6 the existential aspects of spirituality and faith are important to many of those who meditate. The items on the FACIT Spiritual wellbeing scale attempt to tap religiosity (faith factor) and spirituality (meaning and peace factor). Several items on the Effects of Meditation in Everyday Life scale address these issues, including “I feel a sense of inner peace and strength, “I experience more fulfilment and meaning in life”. Thus, it was hypothesised that scores on the Spiritual wellbeing scale would correlate positively with scores on the Effects of Meditation in Everyday Life scale. The scores were strongly correlated (rho=0.642, p<0.001) suggesting the Effects of Meditation in Everyday Life scale is tapping into the spiritual aspects of the meditation experience.

8.6.7 Correlations between Effects of Meditation in Everyday Life and Experiences During Meditation subscales

Correlations between Effects of Meditation in Everyday Life and Experiences During Meditation subscales were also calculated. Significant correlations were found between EDM-Cognitive Effects, EDM-Mystical Experiences and EDM-Relaxation, suggesting that scores on these subscales, and the EDM-Cognitive Effects subscale in particular, is related to effects of meditation in everyday life.

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Table 8-27 Correlations with Experiences During Meditation subscales Correlations with Effects of Meditation in Everyday Life

EDM-Cognitive effects 0.653***

EDM-Emotional effects -0.129

EDM-Mystical experiences 0.373***

EDM-Relaxation 0.262***

EDM-Physical discomfort -0.014

***p<0.01 Pairwise deletion of missing data was conducted with ns ranging from 183 to 198.

8.7 Limitations and directions for future research

It is anticipated that the scale described in the study might be useful in helping to better understand and define the effects of various meditation practices. Such techniques are increasingly commonly used in both those mainstream and CAM-based psychosocial interventions. This may help clinicians and researchers to clarify the ways in which such interventions exert beneficial effects, assess quality of meditation and assess change over time. For health-related meditation teachers and clinicians who use the technique, the scale may also be useful in explaining meditation to those that are learning the technique and may also be of value in assessing change over time. Further research in these areas would be useful.

However, the validation of a scale is an ongoing process which requires considerable research. This study reports the initial validation of the Effects of Meditation scale and further studies are required to verify the factor structure, reliability and validity of the scale. Larger studies with varied samples are required to establish norms for the scales. The use of a social desirability measure to assess the influence of socially desirable responding would also be useful. Kline (1993) recommends that consideration be given to assessing the ability of the scale to contribute something new to the understanding of a topic area. This is termed incremental validity and one way in which this can be

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assessed is by comparing the predictive power of the new scale as compared with other existing scales. Further research could involve assessing the predictive power of the Effects of Meditation scale as compared to alternative comparison measures in samples of adequate size. For a further discussion of future research directions see Section 9.8.

8.8 Summary

This chapter describes the development of the Effects of Meditation scale. It describes the creation of the item pool, administration and testing, the other measures used for validation, scale refinement and scale evaluation including factor analysis, reliability and validity analysis.

The proposed scale was divided into two main sections: Experiences During Meditation and Effects of Meditation in Everyday Life. Two separate initial pools of items covering both experiences within meditation and effects in everyday life were generated.

The psychometric properties of the Experiences During Meditation and Effects of Meditation in Everyday Life scales were evaluated, using factor analysis. In the case of the Experiences During Meditation scale five factors were identified and labelled as: EDM-Cognitive effects, EDM-Emotional effects, EDM-Mystical experiences, EDM- Relaxation and EDM-Physical discomfort. Five subscales were formed, with Cronbach alpha values ranging between 0.68 and 0.87 and mean inter-item correlations ranging between 0.30 and 0.55. The combination of subscales into one measure was not supported conceptually or by the data.

In the case of the Effects of Meditation in Everyday Life scale, every attempt made to explore a variety of factor solutions. However, it was not possible to identify and separate factors and it was decided to use a single factor solution, a decision which may be supported by the considerable conceptual interconnections between the items. A high score on one aspect of this scale might be expected to be linked to and influence other facets. The decision was made to limit the number of items in the scale to 30. We attempted to cover the major dimensions of the effects of meditation in everyday life, to avoid duplication of items and to avoid items considered to be of limited conceptual relevance.

This chapter also covers an exploration of the Effects of Meditation scale’s validity, that is, an assessment of whether the scale measures what it is supposed to measure. The

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scale’s construct validity was assessed by exploring the pattern of correlations between the new scale and other existing variables and measures, both related and unrelated. These included the background variables of age, gender, education level and employment status; aspects of meditation experience; and scores on the PCOISS, MAAS, Spiritual wellbeing, POMS and Physical Symptom Checklist scales described.

The sociodemographic variables of age, gender, education level and employment status were generally not found to be correlated with scores on the Effects During Meditation subscales and Effects of Meditation in Everyday life scale. In general, greater number of years of meditation practice; self-rated proficiency and benefits in everyday life were correlated with greater effects on all scales with the exception of the EDM-Physical discomfort subscale. The results generally support the hypothesis that it is the quality of the meditation experience rather than the time spent that is important for beneficial effects.

In a health-related context, considerable research effort has centred around the use of meditation as a self-regulation strategy to address stress and pain management. There have also been a number of studies of the use of meditation to enhance relaxation and physical health. For a scale assessing the effects of meditation to be useful it must be able to measure such outcomes. The PCOISS assesses the degree to which someone feels able to control his or her internal states and emotions. This is relevant to a discussion of meditation in a stress management context. Analysis showed that there was a strong correlation between PCOISS scores and scores on the EDM-Cognitive Effects and EDM-Mystical experiences subscales thus these subscales seem to be tapping aspects of self-regulation and perceived control of emotions. The ability to be mindful or to pay attention to the present moment non-judgementally is an important characteristic of many types of meditation and is assessed in this study by the MAAS. Analysis showed that MAAS scores correlated most strongly with scores on the EDM- Cognitive effects subscale suggesting that this subscale is tapping the mindfulness dimension of the meditation experience.

Analysis showed that scores on the POMS-SF TMD and subscales other than Vigor showed correlations with scores on the EDM-Emotional effects subscale, thus this subscale appears to be tapping negative mood states. Scores on the EDM-Cognitive effects subscale were significantly correlated with scores on the Vigor subscale and it is suggested that further exploration of the links to positive mood states is needed. 376 Chapter Eight: Effects of Meditation Scale Development

Scores on the Spiritual wellbeing scale correlated with scores on the Cognitive effects and Mystical experiences subscales suggesting that these subscales are tapping aspects of spiritual wellbeing including religiosity/faith and meaning/peace.

Scores on the Effects of Meditation in Everyday Life scale were found to correlate positively with scores on the PCOISS, MAAS, Spiritual wellbeing and POMS Vigor scales and negatively with scores SCL, POMS TMD, Depression, Anger, Tension and Confusion subscales. Thus greater effects of meditation in everyday life are associated with greater control of internal states, mindfulness, spiritual wellbeing as well as reduced mood disturbance and physical symptoms. These correlations are generally as hypothesised and suggest that the subscales are broadly measuring what they are supposed to measure. It is anticipated that they scale described in the study might be useful for clinicians and researchers and may contribute to a better understanding and definition of the effects of various meditation practices. However, this study only reports the initial validation of the scale and more research is required.

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CHAPTER NINE

9 Summary and conclusions

9.1 Introduction

Improvements in medical technology in recent decades mean that over 50% of those diagnosed with cancer in Australia survive beyond five years (AIHW, 2001) and there is a widely acknowledged need for the medical system to help cancer patients live with the disease and the threat of recurrence and progression. Thus, the last 25 years has seen the active exploration of the psychological domain of cancer, with a focus on adjustment to the disease, which may be defined in terms of emotional distress and subjective quality of life (QOL). Concern about the negative psychological consequences of cancer has led to the development of a wide variety of psychological treatment programs for patients. A growing number of practitioners recognise the need for psychosocial support as part of an integrated approach to caring for the whole person at all stages of illness.

The last 30 years has also seen a significant increase in popularity of non-mainstream cancer treatments. Lifestyle approaches and those that address the mind in order to affect the body are among these and are often of great interest to patients. This category includes interventions which incorporate a meditation component. Many mainstream cancer treatment centres offer such intervention programs and the distinction between those that are mainstream and those that are alternative is by no means a clear one. Complementary and alternative medical (CAM) therapies are often seen by cancer patients as adding something which is missing from conventional treatment. They may look to such therapies not only to relieve symptoms but also to improve overall QOL (Lerner & Kennedy, 1992; Richardson, Masse, Nanny, & Sanders, 2004) and in some cases to boost immunity, cure disease and extend survival (Richardson, Masse, Nanny, & Sanders, 2004).

The growth in popularity of CAM treatment programs for cancer raises complex ethical and practical issues for both patients and the medical profession. In view of the prevailing commitment to evidence-based medicine, it is vital to scientifically research

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complementary treatments and acquaint patients and practitioners with the results, thus helping to put them in the position to get the best possible treatment. There is also a need to better understand the characteristics of those who are drawn to complementary treatments and a need for research into the effectiveness of psychological treatment programs in order to better understand which treatments suit which patients and the mechanisms by which they may exert their effects.

9.2 Aims

The principal aims of this project were to describe some of the sociodemographic, medical and psychological characteristics of participants with cancer in a CAM-based psychosocial intervention program; to explore the impact of the program on adjustment to cancer; and to conduct follow-up investigations for up to 12 months to assess the links between compliance with program recommendations and adjustment. As a key component of the program is meditation, a further aim of the project was to explore the effects of meditation and to develop a scale to assess these.

The CAM-based psychosocial intervention described here is The Gawler Foundation 10-day residential program. The aim of the programs run by The Gawler Foundation is to help cancer patients to help themselves and to assist them and their families to learn how to cope with their cancer. The program incorporates meditation, social support, positive thinking and a low-fat vegetarian diet, and is intended to work with and reinforce effective medical treatments as well as complementary therapies. While there are numerous anecdotal reports of the value of the programs the Foundation provides, there has been no independent research which has attempted to assess effectiveness.

The impact of the program was assessed in terms of the following measures: Profile of Mood States (POMS), Mini-Mental Adjustment to Cancer (Mini-MAC), Functional Assessment of Chronic Illness Therapy (FACIT-Sp) and stress hormone (salivary cortisol) levels. Compliance with program recommendations at three, six and 12-month follow-up and the effects on mood, coping and QOL were also explored.

Meditation is a key component of The Gawler Foundation program. Many psychosocial interventions for cancer patients, both CAM-based and mainstream, incorporate a meditation component. While several mindfulness measurement scales exist, it is argued that there is a need develop a tool which incorporates broader concepts in the

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assessment of meditation by examining the psychological and phenomenological changes that occur and how these might impact in everyday life. Such tools may help clinicians and researchers working in the field of health-related meditation assess several parameters including quality of meditation, change over time and the links between individual differences and outcomes.

9.3 Characteristics of program participants

Results from the study support the picture of program participants as predominantly female, well-educated and younger in age. The majority also had good social support. Over 60% of participants reported metastatic disease and 50% had been diagnosed for more than one year. Almost all participants were using the approaches recommended by The Gawler Foundation along with mainstream treatment. Most participants were well motivated and had made lifestyle changes since diagnosis, particularly in the areas of diet and meditation practice.

Although comparisons with participants in other studies are difficult, it seems that those taking part in this study have relatively low levels of mood disturbance despite more severe disease and a coping style characterized by fighting spirit rather than helplessness. QOL seems to be broadly similar to that in other studies. In this study, current treatment was associated with lower emotional wellbeing pointing to the need for psychological support for those undergoing treatments for cancer, many of which have unpleasant side-effects. As hypothesized, physical wellbeing was lower and Mini- MAC Helplessness/Hopelessness greater in those with more severe disease. Thus, The Gawler Foundation appears to be attracting cancer patients that are well-motivated to make lifestyle changes and who are relatively well-adjusted in spite of what is, in many cases, more severe disease. Comparison with others with similar sociodemographic characteristics not such attending programs may also be useful. Further research using other measures of psychological wellbeing and ways of assessing motivation for using CAM programs may help to elucidate patients’ needs and ways of meeting those needs, perhaps helping to make such programs available for those not in a position to afford the time or the money necessary to attend the program evaluated in the current study.

Cross-sectional analysis of the links between mood disturbance, QOL and coping in participants at baseline showed that Mini-MAC Helplessness/Hopelessness and Anxious Preoccupation were the coping styles most strongly positively associated with mood 380 Chapter Nine: Summary and Conclusions

disturbance and negatively associated with QOL. However, correlations with Mini- MAC Fighting Spirit were less than might be expected from other studies, in keeping with the proposal that it is not what is given by Fighting Spirit but what is taken away by Helplessness-Hopelessness that contributes to poor adjustment (Watson, Haviland, Greer, Davidson, & Bliss, 1999). However, the Mini-MAC scale been criticised on the basis that Helplessness-Hopelessness and POMS Depression-Dejection are similar in content and are therefore measuring the same phenomenon. This is also likely to be the case for the POMS Tension-Anxiety and Mini-MAC Anxious Preoccupation subscales (Nordin, Berglund, Terje, & Glimelius, 1999). Further evaluation of the concept of ‘fighting spirit’ may be useful as many patients are now aware of it and might feel compelled to report a positive attitude and give higher scores on scale items that assess this. This may be even more likely to apply to patients that participate in an intervention such The Gawler Foundation program, in which positive thinking plays an important role.

Having a regular meditation practice and minutes per week spent meditating did not appear to be linked to improved mood and QOL. However, higher self-rated proficiency at meditation was significantly correlated with better QOL and FACIT-Sp Spiritual wellbeing. In those who notice the effects of meditation in everyday life Spiritual wellbeing was higher and Helplessness-Hopelessness lower. In recent years spirituality has been recognised as an important aspect of QOL for many cancer patients (Brady, Peterman, Fitchett, Mo, & Cella, 1999; Mytko & Knight, 1999) and an added attraction of many alternative healing practices is that they often incorporate spiritual and moral themes of great importance to patients. There is a need to better understand the role of spirituality and adjustment to cancer, both in terms of spiritual wellbeing as a dimension of QOL and as a coping strategy.

The results of this study suggest that feelings of helplessness, which are more common in those with more severe disease contribute significantly to poorer emotional wellbeing and lower QOL. Meditation, in those who feel proficient and notice the effects in everyday life is linked to reduced helplessness and improved spiritual wellbeing. The results of this part of the study also show that Spiritual wellbeing scores are higher in those with lower POMS TMD scores and lower Helplessness-Hopelessness scores. This points to the need for a deeper exploration of the meditation experience and its’ links to spiritual wellbeing. 381 Chapter Nine: Summary and Conclusions

9.4 Impact of the intervention

The results of the study showed that The Gawler Foundation 10-day residential program has significant beneficial effects on mood, mental adjustment to cancer and QOL in cancer patients. Comparison with other studies and calculation of effect sizes suggests that these effects are relatively large. However, the obvious limitation of a lack of control group means that the possibility that such changes would have happened over time without the intervention cannot be excluded. Further research, involving a group of control patients is necessary to clarify this.

The generalisability of the results is also limited by the fact that study participants are self-selected. Those who choose to participate in such an intervention may differ from those who participate in other interventions and also from those who choose not to participate in any groups. Further comparison would be useful.

Improvements in all measures were found at program completion, with analysis of effect sizes suggesting that Spiritual wellbeing has a significant part to play in the improvement in QOL. The shift towards a predominant coping style of Mini-MAC Fatalism also supports this, as the way this is conceptualised in the Mini-MAC is similar to the way Spiritual wellbeing is conceptualised in the FACIT-Sp. One of the key components of The Gawler Foundation program is meditation and while meditation for health purposes is not explicitly linked to religious beliefs, meditation attracts many with a relatively strong interest in spiritual issues. This may apply to participants in the current study, possibly as a result of greater disease severity (as over 50% of participants report metastatic disease). It may also reflect that fact that an intervention such as this one which incorporates a significant meditation component attracts people interested in such issues regardless of state of health. Changes in measures were not different according to the sociodemographic variables of age, gender, marital status, educational status, disease severity and current treatment.

The results also suggest that those with higher levels of mood disturbance, poorer coping and lower QOL experience greater benefits than those with less mood disturbance, better coping and higher QOL. Changes in those coping strategies of Anxious Preoccupation and Helplessness-Hopelessness which predict higher mood disturbance and lower QOL at baseline were correlated with changes in these measures after the intervention. Thus it seems that reducing feelings of hopelessness and anxiety

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are particularly important for participants to experience improved QOL and lower overall mood disturbance.

9.5 Analysis of Gawler meditation questionnaire

Along with the measures described above, on program completion, participants also completed a questionnaire assessing the meditation experience designed by Foundation staff. This scale was subjected to an evaluation process, including factor analysis which suggested that it be divided into 3 subscales, namely the Physical effects of meditation, the Cognitive effects of meditation and the Expanded Consciousness effects of meditation subscales. However, only the Expanded consciousness effects of meditation subscale showed good internal consistency, defined as a Cronbach alpha value above 0.7. This is likely to be due to the small number of items in the other subscales, making adequate assessment difficult. An examination of the correlations between Effects of Meditation subscale scores and scores on the POMS, Mini-MAC and FACIT-Sp revealed that scores on the Cognitive effects of meditation subscale correlated significantly (above 0.30) with the following subscales: POMS Tension-Anxiety, POMS Confusion-Bewilderment, Mini-MAC Anxious Preoccupation, FACIT-Sp Emotional wellbeing and Spiritual wellbeing. Scores on the Expanded Consciousness effects of meditation subscale correlated with overall FACIT-Sp and Spiritual wellbeing. These analyses suggest that that the quality of meditation was linked to improved adjustment rather than the time spent in meditation. However, while the scale has potential in the assessment of the effects of meditation it currently lacks sufficient psychometric rigour due to low Cronbach alpha values and the small number of items in these subscales. A further limitation of the Gawler meditation questionnaire (GMQ-20) is that it is confined to the experiences within meditation. It is proposed that, if meditation is to have beneficial effects, the impact of the practice on everyday life will be important.

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Thus, in order for the scale to be used for clinical and research purposes it was considered necessary to expand the number of items to include everyday life effects and trial the questionnaire on a larger number of people.

9.6 Follow-up

A program such as the one in the current study is most likely to bring real benefits if participants learn skills and techniques that can subsequently be of use in their everyday lives. Thus, three, six and 12 months after participants had left the program, follow-up data was collected by post in order to assess the extent to which participants were complying with The Gawler Foundation program recommendations, the extent to which the improvements seen after program completion were maintained and the links between compliance with the recommendations of program and mood, coping and QOL.

9.6.1 Three- month follow-up

Analysis of follow-up data at three months showed high compliance with program recommendations. However, it is probable that those who were complying less well with program recommendations were also less likely to participate in follow-up. 384 Chapter Nine: Summary and Conclusions

Participants often report that it requires effort to follow the dietary regime and maintain meditation practice once they return to their home environments. A participant who feels that they have failed in some way may be less likely to participate in a study assessing this aspect. Such results may point to the need for more support for patients to maintain compliance with program recommendations after shorter-term interventions such as the program described here.

Overall it seems that improvements in mood disturbance and anxiety after the program were not maintained at three-month follow-up. However, QOL improvements were mostly maintained even though FACIT-Sp Physical wellbeing and Functional wellbeing appeared to decline after program completion. In addition, on many measures participants still showed improvements from baseline. However, the measures assessing physical health appear largely unchanged from baseline whereas those assessing emotional health and overall QOL are significantly increased from baseline. Thus, it seems that the program has beneficial effects despite worsening disease state with the Spiritual wellbeing aspect of QOL likely to be a particularly important factor. This may reflect the phenomenon of response shift and a growing emphasis on existential issues as disease state worsens.

An investigation of the links between the meditation experience and adjustment showed that time spent meditating was correlated only with Spiritual wellbeing and appeared not to be significantly linked to other dimensions of QOL and mood disturbance. Self- rated proficiency of meditation was significantly correlated with lower POMS Tension- Anxiety. The Physical effects of meditation subscale of the GMQ-20 meditation questionnaire did not appear to be correlated with mood and QOL whereas the Cognitive effects of meditation subscale is linked to lower POMS TMD, Tension- Anxiety Depression-Dejection and Confusion-Bewilderment, overall FACIT-Sp and Spiritual wellbeing. The Expanded Consciousness effects of meditation subscale is weakly correlated with lower TMD and FACT-G and also with Fatigue-Inertia, Confusion-Bewilderment, overall FACIT-Sp, and Spiritual wellbeing.

These results provide some support for hypothesis that the quality of meditation practice is linked to better mood and QOL, rather than the time spent. However, coping as measured by the Mini-MAC does not appear to be significantly linked to the meditation experience (other than Fighting Spirit which is weakly correlated with the Expanded Consciousness effects of meditation subscale). Thus, it may be that the positive effects 385 Chapter Nine: Summary and Conclusions

of meditation seem not to affect coping as conceptualized and measured in this study, pointing to the need for further investigation. The main limitations of this part of the study include lack of a control group, inadequate data on disease state and significant loss to follow-up.

9.6.2 Six and 12-month follow-up

At six-month follow-up 51 responses were received, with the majority of respondents meditating and following dietary recommendations at 6-month follow-up. Comparisons of program completion and six-month follow-up scores showed that overall mood disturbance in participants was higher six months after program completion while some of the benefits of the intervention on levels of anxiety, depression and confusion remained. Participants’ scores on measures reflecting physical health also seem to have declined from program completion. These results may be cautiously interpreted to suggest that while in general, most benefits were not fully maintained six months after program completion, reductions in emotional wellbeing were to some extent maintained despite worsening physical condition.

Assessment of the links between compliance with program recommendations and adjustment, showed that at six-month follow-up, time spent meditating was only correlated with Mini-MAC Helplessness-Hopelessness measure, suggesting perhaps that participants felt that meditation was useful in reducing feelings of helplessness. Proficiency of meditation was correlated with overall FACIT-Sp and Spiritual wellbeing possibly because someone who feels that they are meditating ‘well’ experiences greater overall QOL, mostly as a result of greater spiritual wellbeing. These results support the hypothesis that quality of meditation, which may be reflected in self- reported proficiency, is more important for wellbeing than time spent. The results of analysis of the links between the subscales and other measures also provide some support for the hypothesis that quality of meditation is more important than time spent, with the effects measured by the Cognitive effects of meditation and the Expanded consciousness effects of meditation appearing to be particularly important for QOL improvement.

Hostility). While the high drop-out rate and lack of control group make interpreting these results difficult it is suggested that those still participating in the study are those with less severe disease in whom adjustment would be expected to improve over time anyway, possibly returning to pre-disease levels in some. It is also possible that in those maintaining participation in the study, the benefits of complying with the intervention play a part in wellbeing. In an effort to explore this, the links between compliance and adjustment were assessed. At 12-month follow-up, time spent meditating was not correlated with any measure Self-rated proficiency was correlated with Mini-MAC Anxious Preoccupation overall FACIT-Sp, FACT-G, Social wellbeing and Emotional wellbeing. At this time the effects measured by the Cognitive effects of meditation and the Physical effects of meditation appeared to be particularly important to wellbeing. However there is a need for a measure with improved psychometric properties to more fully investigate these links.

Over the 12-month study period, in comparison with baseline, most measures showed reductions in mood disturbance and improvements in coping and QOL after the program. These improvements typically fade out at three and six-month follow-up, possibly due to greater disease severity in some participants and the difficulties of maintaining compliance with program recommendations after returning to normal life. At 12-month follow-up, most measures showed improvements from baseline. However, discussion of these results is limited due to high drop-out rates and the lack of a control group with which to compare the intervention group. While these improvements may occur as a result of the intervention, they may also be due to natural course of adjustment in those patients that survive for the 12-month period, which is more likely in those with less severe disease. However, some of the improvements over time may be due to the benefits of the intervention and further research involving a control group and patients more homogeneous in terms of disease severity would help to clarify this.

9.7 Development of the Effects of Meditation scale

The second part of this project described the development of the Effects of Meditation scale, with the proposed scale divided into two main sections: Experiences During Meditation and Effects of Meditation in Everyday Life. Two separate initial pools of items covering both experiences within meditation and effects in everyday life were generated.

387 Chapter Nine: Summary and Conclusions

In the case of the Effects of Meditation in Everyday Life scale it was decided to use a single factor solution, a decision which may be supported by the considerable conceptual interconnections between the items. A high score on one aspect of this scale might be expected to be linked to and influence other facets. The decision was made to limit the number of items in the scale to 30. Attempts were made to cover the major dimensions of the effects of meditation in everyday life, to avoid duplication of items and to avoid items considered to be of limited conceptual relevance.

The scale’s construct validity was assessed by exploring the pattern of correlations between the new scale and other existing variables and measures, both related and unrelated. These included the background variables of age, gender, education level and employment status; aspects of meditation experience; and scores on the PCOISS, MAAS, Spiritual wellbeing, POMS and Physical Symptom Checklist scales described.

The sociodemographic variables of age, gender, education level and employment status were generally not found to be correlated with scores on the Effects During Meditation subscales and Effects of Meditation in Everyday life scale. In general, greater number of years of meditation practice; self-rated proficiency and benefits in everyday life were correlated with higher scores on all scales with the exception of the EDM-Physical discomfort subscale. The results generally support the hypothesis that it is the quality of the meditation experience rather than the time spent that is important for beneficial effects.

388 Chapter Nine: Summary and Conclusions

able to measure such outcomes. The PCOISS assesses the degree to which someone feels able to control his or her internal states and emotions, which plays a role in stress management. Analysis showed that there was a strong correlation between PCOISS scores and scores on the EDM-Cognitive Effects and EDM-Mystical experiences subscales thus these subscales seem to be tapping aspects of self-regulation and perceived control of emotions. The ability to be mindful or to pay attention to the present moment non-judgementally is an important characteristic of many types of meditation and is assessed in this study by the MAAS. Analysis showed that MAAS scores correlated most strongly with scores on the EDM-Cognitive effects subscale suggesting that this subscale is tapping the mindfulness dimension of the meditation experience.

Analysis showed that those who score highly on the POMS-SF TMD and subscales other than Vigor also score highly on the EDM-Emotional effects subscale. Scores on the EDM-Cognitive effects subscale were significantly correlated with scores on the Vigor subscale and it is suggested that further exploration of the links to positive mood states is needed. Scores on the Spiritual wellbeing scale correlated with scores on the EDM-Cognitive effects and EDM-Mystical experiences subscales suggesting that these subscales are assessing aspects of spiritual wellbeing including religiosity/faith and meaning/peace.

Scores on the Effects of Meditation in Everyday Life scale were found to correlate positively with scores on the PCOISS, MAAS, Spiritual wellbeing and POMS Vigor subscales and negatively with scores SCL, POMS TMD, Depression, Anger, Tension and Confusion subscales. Thus greater effects of meditation in everyday life are associated with greater control of internal states, mindfulness, spiritual wellbeing as well as reduced mood disturbance and physical symptoms. These correlations are generally as hypothesised and suggest that the subscales are broadly measuring what they are supposed to measure. It is anticipated that the scale described in the study might be useful for clinicians and researchers and may contribute to a better understanding and definition of the effects of various meditation practices. However, this study only reports the initial validation of the scale and more research is required.

389 Chapter Nine: Summary and Conclusions

9.8 Limitations of the study and future research directions

The results of the study suggest that the 10-day residential program run by The Gawler Foundation may have significant beneficial effects on mood, mental adjustment to cancer and QOL in cancer patients. However, several methodological problems limit the conclusions that may be drawn from this study. The most serious of these is the lack of a control group. Ideally this would consist of cancer patients matched as far as possible in terms of disease and sociodemographic characteristics. In the most methodologically rigorous situation participants would be randomised either to an intervention group or to a control group.

However, as Bottomley (1997) comments, randomised controlled trials may not always be the most appropriate way of assessing psychological intervention trials. This is partly due to the methodological problems that may limit the generalisability to the cancer population at large, ethical difficulties in randomisation of patients and practical problems that face researchers when they are attempting to fulfil the stringent criteria of randomised controlled trials. In many cases, participants are reluctant to be randomised to a control group and in some cases, refuse to participate in such studies. In the light of research suggesting that psychosocial support is beneficial for cancer patients, some researchers consider it unethical to randomise people to a no-treatment group (Edelman, Bell, & Kidman, 1999). It is likely that participants in the no-treatment arm of such a study would seek participation in other psychosocial support interventions, thus complicating the issue.

In addition, as others have noted, in such studies, patients vary widely in the use they make of group therapy. Cunningham and colleagues (2000) comment that in a study with 50 patients, there are actually 50 different comparison groups. This group of researchers feel that there is support for a very close analysis of the work done by each participant and links between this and outcomes in terms of adjustment, QOL and even survival (Cunningham, 2002). In addition, Edmonds et al. (1999) comment that the changes brought about by long-term interventions may not show up in standard self- assessment tests and that interview data may be needed as clinical impressions may be more dynamic and develop over time. In addition, when reduced to group means even more individual information may be lost.

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There have also been calls for a deeper understanding of the process of adjusting to cancer and a need for research on the effects of positive emotions, beliefs and life changes on health outcomes, the pathways through which these effects may be realized and the psychological and social processes that support resilience (Aspinwall & MacNamara, 2005). It is hoped that the Effects of Meditation scale described in the current study could be used in this way.

A further limitation which complicates the drawing of conclusions is that the intervention consists of several components, including the quite separate ones of diet and meditation. In an intervention of this type it is difficult to draw out which particular components are having an effect on outcomes. In this study, the generalisability of the results is also limited by the fact that study participants are self-selected. Those who choose to participate in an intervention such as that provided by The Gawler Foundation may well differ from those who participate in other support groups and also from those in the general population who choose not to participate in any groups. This limits the external validity of the study, that is, the population to whom the results may be applied. In addition, the motivation for attending group interventions may play a role in the way relationships develop in the group and possibly, the outcomes. If it were possible to conduct a randomised study of the effects of such a group intervention, it may be useful to question what impact this would have on group cohesion and the formation of mutually supportive bonds, the effects of which are hypothesised to affect outcome

During the follow-up period, some participants may also participate in other groups, thus further reducing comparability. Discussion of the follow-up data is also limited by high drop-out rates. An attempt was made to limit the time taken to complete the questionnaires as much as possible and in fact, other measures may have been useful. However, the decision was made to limit the number of questionnaires in order not to make the study too onerous. A condition of Ethics Committee approval of the study was that participants must be free to withdraw at any time. Thus, it was considered inappropriate to remind participants who did not return follow-up data.

In this study the median time from diagnosis was 15 months, a relatively long time in the cancer process. The results of this study suggest that physical wellbeing appears to decline while emotional and spiritual wellbeing remain more stable. Further research into the effects on newly diagnosed patients may reveal different results.

391 Chapter Nine: Summary and Conclusions

Thus, the results of the study provide initial support for the suggestion that the intervention provided by The Gawler Foundation may have beneficial effects on mood, coping and QOL, similar to those seen in the other interventions described in Section 1.6.3. However, the methodological limitations of the study complicate the drawing of conclusions. Further research involving a control group of cancer patients with emphasis on a deeper, investigation of the links between psychological work and adjustment along with more accurate medical data would be beneficial.

It is anticipated that the Effects of Meditation scale described in the study might be useful in helping to better understand and define the effects of various meditation practices. Such techniques are increasingly commonly used in both those mainstream and CAM-based psychosocial interventions. This may help clinicians and researchers to clarify the ways in which such interventions exert beneficial effects, assess quality of meditation and change over time. The scale may also help to facilitate comparisons across studies and between different types of interventions; establish the length and frequency of meditation practice that are necessary to achieve effects; and provide information on the links between individual differences and outcomes. For health- related meditation teachers and clinicians who use the technique, the scale may also be useful in explaining meditation to those that are learning the technique and may also be of value in assessing the benefits of practice.

As mentioned in section 1.8.9.1, various measures of mindfulness have been developed. A feature of the scale described in the current study is that it incorporates other qualities and concepts related to meditation, such as, awareness, insight, wisdom and compassion. These qualities and concepts are not often the focus of evaluation in cognitive psychological research into meditation, which has concentrated thus far on mindfulness (Kabat-Zinn, 2000).

However, the validation of a scale is an ongoing process which requires considerable research. This study reports the initial validation of the Effects of Meditation scale and further studies are required to verify the factor structure, reliability and validity of the scale. Larger studies with varied samples are required to establish norms for the subscales. A further exploration of the scale in populations with different education, socioeconomic and cultural backgrounds would be useful as different cultural groups may view meditation differently. There may also be a need for a wider variety of outcome and other adjustment indicators, particularly those of a behavioural rather than 392 Chapter Nine: Summary and Conclusions

self-report nature. The measures used in the current study are based on self-report methods. This assumes that participants have an ability to give honest and insightful answers, something which may not always be the case. The use of a social desirability measure to assess the influence of socially desirable responding would also be useful.

As detailed in Section 1.8, the use of interventions incorporating meditation is on the increase and it would be useful to investigate the use of the scale in a wide range of different therapeutic settings with different types of meditation and in participants with different levels of meditation experience. The use in clinical populations, such as in cancer patients would also be valuable as such interventions are increasingly in use in the management of chronic disease populations (Carlson & Brown, 2005).

The correlational nature of the studies presented here precludes drawing conclusions about the causal direction of some of the observed relationships and longitudinal studies are needed. Such studies may also help to untangle the extent to which people with some of characteristics outlined in the current study take up meditation, with the development of these characteristics by meditation. Such studies may also be useful for the exploration of the effects of meditation more broadly than just in terms of mindfulness or emotional state. A useful direction for future research on interventions may be to see if hypothesised changes occur. These changes could be compared to those which occur as a result of other interventions to examine the effects that are specific to meditation.

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462

APPENDICES

463

Appendix A: Participant information sheet (Study 1)

464

Swinburne University Graduate School of Integrative Medicine Research Study

Swinburne University Graduate School of Integrative Medicine is conducting a study of the effects of The Gawler Foundation programs on quality of life in cancer patients. To do this, we need to test people who come to the programs, as well as those who do not. So whether you come to the program or not, we would be very grateful for your participation.

Taking part in the study would involve the completion of questionnaires to assess social support, mood, mental adjustment to cancer and quality of life. We estimate that the total time taken to complete the questionnaires would be between 20 and 30 minutes. If you agree to participate, we would ask you to complete these questionnaires at the start of the program, after its completion and at 3, 6 and 12 months. We will also be asking some people to provide samples of saliva so we can measure levels of stress hormones.

All information would be kept confidential and all participants are able to leave the trial at any time without giving a reason. You should be aware that it would not be necessary to identify individual participants in any resulting publications. We would be happy to provide you with both your individual and overall study results should you so require.

We are seeking your help for this important study because the increasing popularity of non-mainstream cancer treatments raises complex ethical and practical issues for both patients and the medical profession. In order to help doctors and patients make decisions, it is vital to scientifically research complementary treatments and acquaint patients and practitioners with the results, thus helping to put them in the position to get the best possible treatment.

The aim of this particular study is to test how the programs run by the Gawler Foundation affect those attending. We will assess if participants benefit psychologically from the experience ie. show improved emotional health and reduced stress and depression compared to those who do not attend the programs.

To participate in the study or if you need any further information please contact Nicola Reavley at the Graduate School of Integrative Medicine on 03 9853 1989 or email [email protected] or Rudi Uriot at the Gawler Foundation on 03 5967 1730 or [email protected]

Dr Ian Gawler OAM Professor Avni Sali MBBS PhD FRACS FACS ACNEM Executive Director Graduate School of Integrative Medicine The Gawler Foundation Swinburne University

465

Appendix B: Swinburne University of Technology Ethics Committee Approval (Study 1)

466 467

Appendix C: Consent form (Study 1)

468

Name Address

Date

Dear Name

Re: The effect of meditation, positive thinking, diet and psychosocial support on psychological and physical wellbeing in cancer patients.

Thank you very much for your agreement to participate in the study. Your contribution is important and much appreciated.

Please could you fill in the enclosed consent form and questionnaire and bring them with you when you come to the Foundation. As outlined in the initial letter, you will also be asked to complete some further questionnaires at the start and at the end of the 10-day program. In order for this to happen it would be helpful for you to arrive at the Foundation before 2 pm on the first day. Please could you let me know if this presents any problems for you. I would also be grateful if you could provide a saliva sample on the first and last mornings.

If you need to contact me for any reason please do not hesitate to call on (03) 9853 1989 or email [email protected]

Yours sincerely

Nicola Reavley Principal Investigator

469

Letter of consent ______

Project title

The effect of meditation and psychosocial support on psychological and physical wellbeing in cancer patients.

Investigators

Nicola Reavley, Dr Luis Vitetta, Professor Avni Sali

Purpose and procedures The increasing popularity of non-mainstream cancer treatments raises complex ethical and practical issues for both patients and the medical profession. In order to help doctors and patients make decisions, it is vital to scientifically research complementary treatments and acquaint patients and practitioners with the results, thus helping to put them in the position to get the best possible treatment.

The aim of the study is to test the idea that patients attending the 10-day residential programs run by the Gawler Foundation benefit psychologically from the experience ie. show improved emotional health eg. reduced stress and depression compared to those who do not attend the programs.

The project involves the completion of questionnaires to assess social support, mood, mental adjustment to cancer and quality of life. We estimate that the total time taken to complete the questionnaires would be between 20 and 30 minutes. We would ask you to complete these questionnaires at the start of the Gawler Foundation program, after completion of the program and after 3, 6 and 12 months. The later questionnaires would be sent to you by post.

Possible risks, inconvenience and discomfort There are no risks from the project. The only inconvenience arises from the time taken to complete the questionnaires. There are no costs involved. Postage paid envelopes will be provided for those questionnaires sent by post.

Privacy Data will be stored under lock and key and will only be accessible to study investigators. It is hoped that results of the study will be published in scientific journals. THE PARTICIPANTS WILL NOT BE IDENTIFIED OR IDENTIFIABLE IN ANY PUBLICATIONS ARISING.

470 Questions Any questions regarding the project entitled The effect of meditation and psychosocial support on psychological and physical wellbeing in cancer patients can be directed to the Senior Investigator Professor Avni Sali of the Graduate School of Integrative Medicine on telephone number 03 9214 5296.

Complaints procedure If you have any complaint about the way you are treated during the study, or a query that the principal researcher is unable to satisfy you should contact:

Professor Avni Sali Graduate School of Integrative Medicine PO Box 218 Hawthorn VIC 3122 Phone: (03) 9214 5296

Complaints can also be directed to: The Chair Human Research Ethics Committee Swinburne University of Technology P O Box 218 Hawthorn VIC 3122 Phone: (03) 9214 5223

471

I ……………………………………………………… have read (or, as appropriate, have had read to me) and understood the information above. Any questions I have asked have been answered to my satisfaction.

I agree to participate in this activity, realising that I may withdraw at any time.

I agree that research data collected for the study may be published or provided to other researchers on the condition that anonymity is preserved and that I cannot be identified.

NAME OF PARTICIPANT ……………………………………………………………...

SIGNATURE…………………………………………. DATE …………………….

NAME/S OF PRINCIPAL INVESTIGATOR/S …………………………………………

SIGNATURE……………………………………………. DATE …………………….

472

Appendix D: Pre-intervention questionnaires (Study 1)

473

The effect of meditation, positive thinking, diet and psychosocial support on psychological and physical wellbeing in cancer patients

Please circle relevant answers

Personal Details

Title: ______Surname: ______Given names: ______

Date of birth: ______Age: ______Gender: M / F

Relationship: Single Defacto Married Separated Divorced Widowed

Socio-economic

Completed level of education? Primary Secondary Tertiary Post-Grad

Are you retired? Yes No

(If yes, please complete details below for when you were working)

Occupation?______Full time Part Time Casual Volunteer

Geographical location

Address: ______

State: ______Postcode: ______Telephone: ( ) ______

Who do you live with? ______How many people in the household: Adults ___ Children __

Ethnicity

Where were you born? ______

Where were your parents born? Mother ______Father______

Your ethnic origin? ______Main language spoken at home ______

Secondary language spoken at home ______

Please return the survey to the Graduate School of Medicine in the reply paid envelope enclosed. If you have any questions please telephone Nicki Reavley on (03) 9853 1989

474 Cancer

What type of cancer do you have? ______

Please specify stage/grade if known. ______

Please specify metastatic/non-metastatic if known ______

If metastatic, please state the time interval between original diagnosis and metastasis ______

If metastatic, please give some details of recurrence site ______

When was your cancer first diagnosed? ______(month/year)

Have you been given an indication of your prognosis? Yes No

If yes, what was it? ______

When was this information given to you ______

What type of treatment have you received? (Please circle all relevant)

Surgery Radiation therapy Chemotherapy Hormone therapy Other

In case of chemotherapy please list medications taken and treatment dates

Medication ______Dose ______Dates taken ______

Are you currently receiving medical treatment? Yes No

If yes, please provide some details, including medications and dates of treatment (for chemotherapy see below) ______

In case of chemotherapy please list medications taken (with names and dosages if known) and treatment dates

Medication ______Dose ______Dates taken ______

Are you currently taking either of the medications dexamethasone or prednisolone? ? Yes No

Have you ever taken these medications? Yes No (These drugs affect the hormone cortisol which we are assessing as part of our study)

If yes, please provide dates these drugs were taken/are being taken______

475 Are you currently taking any medications other than those you may have described above?

Yes No

If yes, please provide some details______

______

Are you currently taking any nutritional or other supplements? Yes No

If yes, please provide some details including names, dosages, how often taken and period of time for which you have taken them ______

______

Social support

How many people do you have near you that you can readily count on for help in times of difficulty, such as watch over children or pets, give rides to hospital or store, or help when you are sick.

0 1 2 –5 6 –9 10 or more

Physical activity

In the last 7 days how many total hours did you spend doing moderate physical activities eg. brisk walking, callisthenic exercises, sweeping and mopping, golf?

Number of hours ______Please give some details ______

______

In the last 7 days how many total hours did you spend doing hard physical activities eg. heavy carpentry, tennis doubles, scrubbing floors?

Number of hours ______Please give some details ______

______

In the last 7 days how many total hours did you spend doing very hard physical activities eg. very hard physical labour, jogging, aerobics, swimming?

Number of hours ______Please give some details ______

______

Compared to your physical activity over the past three months was last week’s physical activity more, less or about the same?

More Less About the same

476 Church attendance

Do you regularly attend church, temple, mosque, synagogue or other religious institution?

Yes No Sometimes

Meditation

Have you had any experience of meditation? Yes No

If yes, please specify technique ______

______

If yes, how often and for how long do you currently meditate? ______

______

Did you meditate before cancer diagnosis? Yes No

If yes, please specify how often and for how long ______

______

On a scale of 1 (minimum) to 10 (maximum) what level of proficiency do you feel you reached in that technique?

1 2 3 4 5 6 7 8 9 10

Do you feel the benefits of meditation flowing into your everyday life? Yes No

If yes, please give some details ______

______

Participation in psychosocial interventions

Have you participated in psychosocial interventions eg. educational sessions, group support sessions, individual counselling?

Yes No

If yes, please give details of groups or practitioners attended and include number of sessions attended.

______

477 Diet

In the last 7 days did you:

Avoid foods high in fat every day most days few days no days

Avoid foods high in sugar every day most days few days no days

Avoid foods high in salt every day most days few days no days

Avoid meat every day most days few days no days

Avoid alcohol every day most days few days no days

Avoid caffeine every day most days few days no days

Avoid cooking techniques every day most days few days no days such as smoking and barbecuing

Avoid processed foods every day most days few days no days containing sweeteners and additives

Include fresh vegetable every day most days few days no days and fruit juices

Include high fibre foods every day most days few days no days

Include organic foods every day most days few days no days

Other lifestyle changes

Please list any definitive changes you have made to your lifestyle since your cancer diagnosis by circling the answer that applies to you.

Stopped smoking Yes No Never smoked Stopped drinking excessively Yes No Did not drink excessively Changed level of physical activity Yes No Changed diet Yes No Now practice regular meditation Yes No Changed amount of time Yes No spent with family Changed amount of time Yes No

Please give some details:

Please describe any other changes you have made (continue overleaf if you wish):

Please return the survey to the Graduate School of Medicine in the reply paid envelope enclosed. If you have any questions please telephone Nicki Reavley on (03) 9853 1989

478

Appendix E: Measures administered at baseline, program completion, three-month follow-up, 6-month follow-up and 12-month follow-up (Study 1)

479 480 481 482 483 484 485

Appendix F: Initial meditation questionnaire administered at program completion (Study 1)

486

The effect of meditation, positive thinking, diet and psychosocial support on psychological and physical wellbeing in cancer patients

Name: ______Date: ______

Meditation

While meditation is best done simply, and trying to make a conscious assessment of it while you are doing it can be a definite barrier to a deeper experience, you may be aware of experiencing some of the following:

Place a tick against the appropriate box to indicate what you have experienced during your meditation practice in the past 10 days. Never Occasionally Frequently

Felt self-conscious or frustrated

Felt my body becoming heavy

Felt my temperature become warmer or cooler

Felt my body becoming soft and loose

Was aware of concentrating on my meditation ‘technique’

Was aware of a stream of distracting thoughts

Felt calm and tranquil

Felt like I was observing my thoughts as an impartial observer

Felt like my body was light/floating

Felt my body awareness was changing – as it parts of it were ‘missing’ or it was expanding a little in size

Felt a decrease in pain

Was aware of short moments of stillness with no thoughts

Lost awareness of my body

487 Had memories surface bringing and emotional response

Had creative ideas/solutions/insights come to my awareness

Felt like I was on a the threshold of a deeper experience

Inner colours, sounds or visions were seen and/or heard

Felt confident of a healing taking place in my body

Experienced a sense of being in infinite space

Was aware of long periods of stillness, but recall was poor - not sure if awake or asleep but it felt different from sleep

Was aware of periods of stillness with a sense of expanded consciousness

Experienced what I describe as a mystical experience

Have been left feeling a very assured, satisfied sense of inner peace

Have a developed a pervading sense of order within my world

Have felt I had contact with a higher power

Do you feel the benefits of meditation flowing into other times in the day? Yes No

Please give some details

______

On a scale of 1 (minimum) to 10 (maximum) what level of proficiency do you feel you reached in the meditation techniques taught?

1 2 3 4 5 6 7 8 9 10

488

Appendix G: Follow-up questionnaire administered three, six and 12 months after program completion (Study 1)

489

The effect of meditation, positive thinking, diet and psychosocial support on psychological and physical wellbeing in cancer patients

Name: ______Date: ______

Meditation

Do you currently meditate? Yes No

Which techniques do you use?

Stillness meditation as taught at The Gawler Foundation

Visualisation as taught at The Foundation

Other Please give some details ______

______

If yes, how often and for how long do you currently usually meditate? (Please specify for each technique)

______

Place a tick against the appropriate box to indicate what you have experienced during your meditation practice in the past 10 days. Never Occasionally Frequently

Felt self-conscious or frustrated Felt my body becoming heavy Felt my temperature become warmer or cooler Felt my body becoming soft and loose Was aware of concentrating on my meditation ‘technique’ Was aware of a stream of distracting thoughts Felt calm and tranquil Felt like I was observing my thoughts as an impartial observer Felt like my body was light/floating Felt my body awareness was changing – as it parts of it were ‘missing’ or it was expanding a little in size 490 Felt a decrease in pain Was aware of short moments of stillness with no thoughts Lost awareness of my body Had memories surface bringing and emotional response Had creative ideas/solutions/insights come to my awareness Felt like I was on a the threshold of a deeper experience Inner colours, sounds or visions were seen and/or heard Felt confident of a healing taking place in my body Experienced a sense of being in infinite space Was aware of long periods of stillness, but recall was poor - not sure if awake or asleep but it felt different from sleep Was aware of periods of stillness with a sense of expanded consciousness Experienced what I describe as a mystical experience Have been left feeling a very assured, satisfied sense of inner peace Have a developed a pervading sense of order within my world Have felt I had contact with a higher power

Do you feel the benefits of meditation flowing into other times in the day? Yes No

Please give some details

______

On a scale of 1 (minimum) to 10 (maximum) what level of proficiency do you feel you reached in the meditation techniques taught?

1 2 3 4 5 6 7 8 9 10

Other relaxation techniques

Do you use any other relaxation techniques? Yes No

Please give some details ______

______

491 Participation in psychosocial interventions

Have you participated in psychosocial interventions eg. educational sessions, group support sessions, individual counselling?

Yes No

If yes, please give details of groups or practitioners attended and include number of sessions attended.

______

Diet

In the last 7 days did you:

Avoid foods high in fat every day most days few days no days

Avoid foods high in sugar every day most days few days no days

Avoid foods high in salt every day most days few days no days

Avoid meat every day most days few days no days

Avoid alcohol every day most days few days no days

Avoid caffeine every day most days few days no days

Avoid cooking techniques every day most days few days no days such as smoking and barbecuing

Avoid processed foods every day most days few days no days containing sweeteners and additives

Include fresh vegetable every day most days few days no days and fruit juices

Include high fibre foods every day most days few days no days

Include organic foods every day most days few days no days

492 Physical activity

In the last 7 days how many total hours did you spend doing moderate physical activities eg. brisk walking, callisthenic exercises, sweeping and mopping, golf?

Number of hours ______Please give some details ______

______

In the last 7 days how many total hours did you spend doing hard physical activities eg. heavy carpentry, tennis doubles, scrubbing floors?

Number of hours ______Please give some details ______

______

In the last 7 days how many total hours did you spend doing very hard physical activities eg. very hard physical labour, jogging, aerobics, swimming?

Number of hours ______Please give some details ______

______

Compared to your physical activity over the past three months was last week’s physical activity more, less or about the same?

More Less About the same

Are there any other lifestyle changes that you have undertaken since you completed the Gawler Foundation program. Please specify:

493

Medical treatment

Have you received any medical treatment in the last 3 months? Yes No

What type of treatment have you received? (Please circle all relevant)

Surgery Radiation therapy Chemotherapy Hormone therapy Other

Please give some details

______

Date(s) of treatment

______

Are you currently receiving medical treatment? Yes No

If yes, please provide some details

______

Date treatment started ______

Please return the survey to the Graduate School of Integrative Medicine in the reply paid envelope enclosed. If you have any questions please telephone Nicola Reavley on (03) 9853 1989 or email [email protected]

494

Appendix H: Instructions for saliva collection (Study 1)

495

The effect of meditation, positive thinking, diet and psychosocial support on psychological and physical wellbeing in cancer patients

The aim of this part of the study is to collect saliva samples which will then be analysed for the level of the stress hormone cortisol. This will be done at the start of the program and after its completion. It is important that the saliva is collected at the same time of day (8.30 am) on both occasions.

Instructions for saliva collection

1. Rinse your mouth at least twice with cool water and wait for 5 minutes.

2. Begin the collection. Remove the cap of the saliva collection tube and spit directly into the tube. Avoid touching the mouth of the tube with your hands.

3. If you are having problems producing saliva, chew some sugarless gum for 1-2 minutes, swallowing saliva as usual. You may continue to chew the gum during collection but please do not spit the gum into the collection tube. If, for some reason, you are not able to chew the gum, saliva collection is still possible but may take longer.

4. Please fill the tube. It may take a few minutes to generate sufficient saliva.

5. Replace the cap, making sure it is on evenly and securely.

6. Neatly print your name, date and time of collection on the label on the tube.

496

Appendix I: Statistical and procedural issues in the analysis of baseline data (Study 1)

497 Table I- 1 Participants removed from analysis of measures at baseline Scale Age Gender Type of cancer Time from Score (SDs Case diagnosis from mean) ID POMS – Anger- 52 Male Neuroblastoma 5 years 27.00 (3.3) 29 Hostility POMS- Fatigue- 61 Female Metastatic lung 8 months 28.00 (3.4) 106 Inertia cancer POMS- 56 Male Metastatic prostate 5 years 17.00 (2.9) 48 Confusion- cancer Bewilderment Mini-MAC 61 Female Metastatic breast 5 years 5.00 (3.2) 2 Fatalism cancer FACIT-Sp – all 54 Female Metastatic breast 30 months 58.33 (3.0) 7 scales cancer FACIT-Sp – all 58 Female Metastatic 30 months 60.00 (2.9) 21 scales melanoma FACIT-Sp Social 52 Female Serous carcinoma of 7 months 0 (2.2) 34 wellbeing the pelvic area FACIT-Sp 52 Male Neuroblastoma 5 years 5.00 (3.3) 29 Emotional wellbeing FACIT-Sp 45 Female Stage 2 breast 5 years 3.00 (3.6) 70 Emotional cancer wellbeing

Note: In addition, participants data from the following measures was removed:

Salivary cortisol – initial level CASE ID 27 (7.3nmol/L), CASE ID 77 (56.5 nmol/L), CASE ID 106 (59.5nmol/L), CASE ID 108 (71.6 nmol/L), CASE ID 112 (61.2 nmol/L).

Salivary cortisol – final level CASE ID 32 (12.8 nmol/L), CASE ID 64 (3.9 nmol/L), CASE ID 65 (7.0 nmol/L), CASE ID 74 (55.8 nmol/L), CASE ID 93 (87.2 (nmol/L), CASE ID 103 (56.4 nmol/L).

498 Figure I- 1 POMS TMD at baseline

POMS TMD at baseline

9 Frequency 6

Mean = 12.43 Std. Dev. = 22.6 0 N = 100 -40 -20 0 20 40 60 80 POMS TMD at baseline

Figure I- 2 Tension-Anxiety at baseline

Tension-Anxiety at baseline

10 Frequency

Mean = 5.5 Std. Dev. = 5.347 0 N = 101 -5 0 5 10 15 20 Tension-Anxiety at baseline

499

Figure I- 3 Depression-Dejection at baseline

Depression-Dejection at baseline

15 Frequency

Mean = 7.54 Std. Dev. = 6.805 0 N = 105 0 5 10 15 20 25 30 Depression-Dejection at baseline

Figure I- 4 Anger-Hostility at baseline

Anger-Hostility at baseline

9 Frequency 6

Mean = 7.52 Std. Dev. = 5.648 0 N = 104 0 5 10 15 20 25 Anger-Hostility at baseline

500

Figure I- 5 Vigor-Activity at baseline

Vigor-Activity at baseline

15 Frequency 10

Mean = 17.78 Std. Dev. = 5.936 0 N = 107 0 10 20 30 Vigor-Activity at baseline

Figure I- 6 Fatigue-Inertia at baseline

Fatigue-Inertia at baseline

10 Frequency

Mean = 7.6 Std. Dev. = 5.068 0 N = 105 0 5 10 15 20 25 Fatigue-Inertia at baseline

501 Figure I- 7 Confusion-Bewilderment at baseline

Confusion-Bewilderment at baseline

Frequency 6

2 Mean = 2.93 Std. Dev. = 3.943 0 N = 102 -5 0 5 10 15 Confusion-Bewilderment at baseline

Figure I- 8 Helplessness-Hopelessness at baseline

502 Figure I- 9 Anxious Preoccupation at baseline

Anxious Preoccupation at baseline

10 Frequency

Mean = 18.54 Std. Dev. = 4.536 0 N = 106 5 10 15 20 25 30 Anxious Preoccupation at baseline

Figure I- 10 Fighting Spirit at baseline

503 Figure I- 11 Cognitive Avoidance at baseline

Cognitive Avoidance at baseline

15 Frequency 10

Mean = 8.72 Std. Dev. = 2.517 0 N = 107 2 4 6 8 10 12 14 16 Cognitive Avoidance at baseline

Figure I- 12 Fatalism at baseline

Fatalism at baseline

10 Frequency

Mean = 14.24 Std. Dev. = 2.671 0 N = 104 7.5 10 12.5 15 17.5 20 22.5 Fatalism at baseline

504 Figure I- 13 FACIT-Sp at baseline

FACIT-Sp at baseline

10 Frequency

Mean = 115.7217 Std. Dev. = 16.37175 0 N = 107 80.00 100.00 120.00 140.00 FACIT-Sp at baseline

Figure I- 14 FACT-G at baseline

Histogram

10 Frequency

Mean = 83.7781 Std. Dev. = 11.48501 0 N = 107 50.00 60.00 70.00 80.00 90.00 100.00 110.00 FACT-G at baseline

505 Figure I- 15 Physical wellbeing at baseline

Physical wellbeing at baseline

15 Frequency 10

Mean = 23.174 Std. Dev. = 3.8617 0 N = 107 10.0 15.0 20.0 25.0 30.0 Physical wellbeing at baseline

Figure I- 16 Social wellbeing at baseline

Social wellbeing at baseline

15 Frequency 10

Mean = 22.468 Std. Dev. = 4.5539 0 N = 106 5.0 10.0 15.0 20.0 25.0 30.0 Social wellbeing at baseline

506 Figure I- 17 Emotional wellbeing at baseline

Emotional wellbeing at baseline

9 Frequency 6

Mean = 18.638 Std. Dev. = 3.3688 0 N = 105 5.0 10.0 15.0 20.0 25.0 Emotional wellbeing at baseline

Figure I- 18 Functional wellbeing at baseline

Functional wellbeing at baseline

10 Frequency

Mean = 19.981 Std. Dev. = 4.5224 0 N = 107 10.0 15.0 20.0 25.0 30.0 Functional wellbeing at baseline

507 Figure I- 19 Spiritual wellbeing at baseline

Spiritual wellbeing at baseline

Frequency 6

2 Mean = 32.245 Std. Dev. = 8.0779 0 N = 106 10.0 20.0 30.0 40.0 50.0 Spiritual wellbeing at baseline

508

Appendix J: POMS, Mini-MAC FACIT-Sp and salivary cortisol after program completion (Study 1)

509 Table J- 1 POMS scores after program completion N Mean Std. Median Minimum Maximum Deviation TMD 87 -5.16 18.37 -9.00 -38 47 Tension-Anxiety 97 1.08 3.86 1.00 -4 14 Depression- Dejection 99 4.98 4.73 4.00 0 25 Anger- Hostility 100 3.70 3.54 3.50 0 22 Vigor- Activity 104 20.75 6.32 21.00 4 32 Fatigue-Inertia 103 5.53 4.89 4.00 0 20 Confusion- 101 0.98 3.27 0 -4 16 Bewilderment

Table J- 2 Mini-MAC scores after program completion N Mean Std. Median Minimum Maximum Deviation Helplessness- 109 9.26 1.80 8.00 8 16 Hopelessness Anxious Preoccupation 105 15.58 4.18 15.00 8 26 Fighting Spirit 104 14.42 1.64 15.00 9 16 Cognitive Avoidance 107 7.96 2.63 8.00 4 15 Fatalism 106 14.51 2.53 14.00 6 20

Table J- 3 FACIT-Sp scores after program completion N Mean Std. Deviation Median Minimum Maximum FACIT-Sp 108 126.69 13.62 128.00 87.00 151.00 FACT-G 108 88.27 11.29 90.00 46.00 107.00 Physical wellbeing 109 24.31 3.67 25.00 11.00 28.00 Social wellbeing 108 22.36 4.40 23.00 4.00 28.00 Emotional wellbeing 108 20.28 2.98 21.00 7.00 24.00 Functional wellbeing 109 21.9 4.57 23.00 4.70 29.00 Spiritual wellbeing 108 37.67 6.65 38.00 23.00 48.00

510 Table J- 4 Salivary cortisol levels after program completion N Mean Std. Deviation Median Minimum Maximum

Cortisol level nmol/L 81 16.94 8.24 14.7 4.6 38.7

Table J- 5 Changes in POMS scores from baseline to program completion N Mean Std. Median Minimum Maximum Deviation TMD 87 17.36 23.17 16.00 -41 73 Tension-Anxiety 96 4.54 5.46 4.00 -15 18 Depression- Dejection 98 2.70 6.52 2.00 -13 24 Anger- Hostility 99 3.86 5.50 3.00 -7 19 Vigor- Activity 103 -2.98 6.73 -2.00 -21 15 Fatigue-Inertia 101 2.05 5.64 1.00 -18 21 Confusion- 99 2.02 4.21 2.00 -12 11 Bewilderment

Table J- 6 Changes in Mini-MAC scores from baseline to program completion N Mean Std. Median Minimum Maximum Deviation Helplessness- 109 1.75 2.63 1.00 -5 9 Hopelessness Anxious Preoccupation 105 2.93 3.83 3.00 -10 12 Fighting Spirit 104 -0.74 1.84 -1.00 -7 4 Cognitive Avoidance 106 0.73 2.30 0 -7 6 Fatalism 104 -0.38 2.10 0 -5 5

511 Table J- 7 Changes in FACIT-Sp scores from baseline to program completion N Mean Std. Median Minimum Maximum Deviation FACIT-Sp 107 -11.34 14.74 -12.00 -55.00 43.00 FACT-G 107 -4.41 16.46 -4.00 -41.00 42.00 Physical 107 -1.24 3.19 -1.00 -12.00 6.00 wellbeing Social 106 -0.038 3.09 0 -9.00 11.00 wellbeing Emotional 105 -1.74 2.69 -1.00 -11.00 7.00 wellbeing Functional 107 -2.23 4.27 -2.00 -16.00 16.00 wellbeing Spiritual 106 -5.43 7.11 -5.00 -23.00 19.00 wellbeing

Table J- 8 Change in salivary cortisol from baseline to program completion N Mean Std. Median Minimum Maximum Deviation Change in cortisol level 77 3.41 10.10 1.99 -18.40 31.10 nmol/L

512

Appendix K: Additional statistical analyses of Gawler meditation questionnaire (Study 1)

513 Table K- 1 Correlation matrix for initial PCA

AQ1 AQ2 AQ3 AQ4 AQ5 AQ6 AQ7 AQ8 AQ9 AQ10 AQ12 AQ13 AQ14 AQ15 AQ16 AQ17 AQ18 AQ19 AQ20 AQ21 AQ22 AQ23 AQ24 AQ25 Correlation AQ1 1.000 -.022 .045 -.064 .186 .204 -.197 -.057 -.033 -.078 -.012 .057 -.048 -.228 .050 -.093 -.157 -.024 -.116 -.043 -.280 -.241 -.121 -.196 AQ2 -.022 1.000 .340 .303 -.095 -.076 .137 .087 .093 .334 .080 .136 -.029 .017 -.036 -.054 .046 .069 .017 -.148 -.072 .004 .139 .147 AQ3 .045 .340 1.000 .182 .151 .134 -.037 .146 .215 .250 .165 .190 .015 -.032 .064 -.119 -.060 .059 -.029 .163 .061 .067 .235 .024 AQ4 -.064 .303 .182 1.000 .030 -.148 .388 .172 .226 .328 .246 .260 .124 .298 .238 .177 .193 .057 .179 .131 .167 .123 .180 .250 AQ5 .186 -.095 .151 .030 1.000 .195 -.135 -.016 .036 -.098 -.008 -.167 .078 -.128 .103 -.006 -.048 -.092 .010 .021 -.004 -.004 -.004 -.016 AQ6 .204 -.076 .134 -.148 .195 1.000 -.414 -.017 -.036 -.136 -.054 .096 .062 -.219 .015 -.214 -.202 .022 -.247 -.242 -.182 -.257 -.228 -.266 AQ7 -.197 .137 -.037 .388 -.135 -.414 1.000 .185 .230 .296 .257 .161 .074 .353 .044 .300 .291 .174 .263 .246 .366 .169 .198 .330 AQ8 -.057 .087 .146 .172 -.016 -.017 .185 1.000 .503 .207 .304 .282 .173 .266 .092 .128 .322 .094 .395 .227 .272 .327 .356 .101 AQ9 -.033 .093 .215 .226 .036 -.036 .230 .503 1.000 .233 .345 .173 .074 .386 .263 .284 .442 .294 .426 .209 .320 .303 .163 .116 AQ10 -.078 .334 .250 .328 -.098 -.136 .296 .207 .233 1.000 .282 .071 .083 .077 .139 .138 .159 .145 .108 .144 .042 -.002 .218 .228 AQ12 -.196 .147 .024 .250 -.016 -.266 .330 .101 .116 .228 .386 .014 .128 .396 .000 .200 .279 .185 .393 .164 .397 .247 .254 1.000 AQ13 -.012 .080 .165 .246 -.008 -.054 .257 .304 .345 .282 1.000 .188 .137 .417 .353 .218 .363 .217 .336 .267 .245 .211 .179 .386 AQ14 .057 .136 .190 .260 -.167 .096 .161 .282 .173 .071 .188 1.000 .363 .227 .119 .055 .301 .056 .193 .218 .071 .231 .204 .014 AQ15 -.048 -.029 .015 .124 .078 .062 .074 .173 .074 .083 .137 .363 1.000 .407 .207 .179 .368 -.038 .202 .259 .170 .317 .235 .128 AQ16 -.228 .017 -.032 .298 -.128 -.219 .353 .266 .386 .077 .417 .227 .407 1.000 .267 .388 .386 .159 .441 .439 .476 .413 .329 .396 AQ17 .050 -.036 .064 .238 .103 .015 .044 .092 .263 .139 .353 .119 .207 .267 1.000 .229 .222 .072 .160 .337 .103 .061 -.056 .000 AQ18 -.093 -.054 -.119 .177 -.006 -.214 .300 .128 .284 .138 .218 .055 .179 .388 .229 1.000 .404 .260 .387 .294 .284 .408 .212 .200 AQ19 -.157 .046 -.060 .193 -.048 -.202 .291 .322 .442 .159 .363 .301 .368 .386 .222 .404 1.000 .175 .546 .438 .358 .425 .324 .279 AQ20 -.024 .069 .059 .057 -.092 .022 .174 .094 .294 .145 .217 .056 -.038 .159 .072 .260 .175 1.000 .038 .045 .186 .085 .057 .185 AQ21 -.116 .017 -.029 .179 .010 -.247 .263 .395 .426 .108 .336 .193 .202 .441 .160 .387 .546 .038 1.000 .331 .403 .368 .232 .393 AQ22 -.043 -.148 .163 .131 .021 -.242 .246 .227 .209 .144 .267 .218 .259 .439 .337 .294 .438 .045 .331 1.000 .370 .352 .417 .164 AQ23 -.280 -.072 .061 .167 -.004 -.182 .366 .272 .320 .042 .245 .071 .170 .476 .103 .284 .358 .186 .403 .370 1.000 .550 .289 .397 AQ24 -.241 .004 .067 .123 -.004 -.257 .169 .327 .303 -.002 .211 .231 .317 .413 .061 .408 .425 .085 .368 .352 .550 1.000 .566 .247 AQ25 -.121 .139 .235 .180 -.004 -.228 .198 .356 .163 .218 .179 .204 .235 .329 -.056 .212 .324 .057 .232 .417 .289 .566 1.000 .254

514

Table K- 2 Component matrix for initial PCA

Component 1 2 3 4 5 6 7 AQ16 .725 AQ19 .705 AQ21 .664 AQ24 .648 -.392 AQ23 .634 AQ22 .591 AQ9 .584 .367 AQ13 .568 .330 AQ18 .548 AQ7 .541 -.459 AQ8 .527 AQ12 .520 -.362 .413 AQ4 .444 .395 -.301 AQ3 .658 AQ2 .586 -.430 AQ10 .351 .497 -.363 AQ6 -.346 .337 .519 .422 AQ1 .307 .364 AQ25 .554 -.565 AQ17 .327 .365 .484 AQ20 .381 .349 -.337 AQ15 .410 .412 -.432 .326 AQ14 .371 .310 -.406 -.402 AQ5 .403 .302 .637 Extraction Method: Principal Component Analysis. a 7 components extracted.

515

Table K- 3 Unrotated component matrix forcing three factors

Component 1 2 3 AQ16 .725 AQ19 .705 AQ21 .664 AQ24 .648 AQ23 .634 AQ22 .591 AQ9 .584 AQ13 .568 AQ25 .554 AQ18 .548 AQ7 .541 -.459 AQ8 .527 AQ12 .520 -.362 AQ4 .444 .395 AQ14 .371 .310 AQ20 AQ3 .658 AQ2 .586 -.430 AQ10 .351 .497 -.363 AQ6 -.346 .337 .519 AQ15 .410 .412 AQ5 .403 AQ17 .327 .365 AQ1 .307 .364 Extraction Method: Principal Component Analysis. a 3 components extracted.

516

Table K- 4 Structure matrix after Oblimin rotation

Component 1 2 3 AQ19 .731 AQ16 .728 AQ24 .689 AQ21 .678 AQ22 .649 AQ23 .636 -.330 AQ9 .568 .425 AQ18 .565 AQ8 .522 .373 AQ13 .522 .457 AQ25 .518 AQ15 .508 AQ17 .387 .303 AQ14 .384 .341 AQ10 .694 AQ2 .684 AQ4 .302 .615 AQ3 .582 .324 AQ20 AQ6 .689 AQ7 .392 .394 -.545 AQ1 .521 AQ12 .406 .310 -.483 AQ5 .411 Extraction Method: Principal Component Analysis. Rotation Method: Oblimin with Kaiser Normalization.

517

Table K- 5 Unrotated component matrix for four-factor solution

Component 1 2 3 4 AQ1 .307 .364 AQ2 .586 -.430 AQ3 .658 AQ4 .444 .395 AQ5 .403 AQ6 -.346 .337 .519 AQ7 .541 -.459 AQ8 .527 AQ9 .584 AQ10 .351 .497 -.363 AQ15 .410 .412 AQ16 .725 AQ18 .548 AQ19 .705 AQ21 .664 AQ22 .591 AQ23 .634 AQ24 .648 -.392 AQ25 .554 -.565 AQ12 .520 -.362 AQ13 .568 .330 AQ14 .371 .310 AQ17 .327 .365 .484 AQ20 .381 Extraction Method: Principal Component Analysis. a 4 components extracted.

518

Table K- 6 Pattern matrix after Oblimin rotation of four-factor solution

Component 1 2 3 4 AQ24 .781 AQ25 .703 AQ15 .628 AQ22 .581 AQ19 .526 .348 AQ14 .502 .309 AQ8 .501 AQ23 .485 -.338 AQ16 .482 .357 AQ21 .442 .358 AQ2 .749 AQ3 .668 AQ10 .592 .300 AQ4 .471 .326 AQ6 .701 AQ7 -.551 .329 AQ1 .544 AQ12 -.491 AQ5 .426 AQ17 .354 .659 AQ13 .609 AQ9 .542 AQ20 .491 AQ18 .464 Extraction Method: Principal Component Analysis. Rotation Method: Oblimin with Kaiser Normalization. a Rotation converged in 18 iterations.

519

Table K- 7 Structure matrix after Oblimin rotation of four-factor solution

Component 1 2 3 4 AQ24 .768 -.321 AQ25 .672 .305 AQ19 .637 .512 AQ22 .630 .350 AQ16 .609 -.348 .525 AQ15 .594 AQ23 .567 -.423 .349 AQ21 .561 .503 AQ8 .551 .300 AQ14 .492 .344 AQ2 .739 AQ3 .669 AQ10 .619 .359 AQ4 .511 .410 AQ6 .707 AQ7 -.609 .438 AQ12 -.547 .375 AQ1 .541 AQ5 .403 AQ13 .336 .666 AQ9 .427 .621 AQ17 .617 AQ18 .378 -.302 .540 AQ20 .468 Extraction Method: Principal Component Analysis. Rotation Method: Oblimin with Kaiser Normalization

520

Table K- 8 Structure matrix with item 13 removed

Component 1 2 3 AQ19 .729 AQ16 .717 AQ24 .698 AQ21 .673 AQ22 .654 AQ23 .633 -.351 AQ9 .571 .411 AQ18 .562 AQ25 .529 .332 AQ8 .529 .381 AQ15 .524 AQ14 .400 .368 AQ17 .379 AQ2 .707 AQ10 .684 AQ4 .303 .616 AQ3 .608 .315 AQ20 AQ6 .689 AQ7 .379 .375 -.573 AQ12 .379 -.519 AQ1 .514 AQ5 .406 Extraction Method: Principal Component Analysis. Rotation Method: Oblimin with Kaiser Normalization.

521

Table K- 9 Structure matrix with items 13 and 14 removed

Component 1 2 3 AQ19 .724 AQ16 .720 AQ24 .698 AQ21 .681 AQ22 .654 AQ23 .654 -.306 AQ18 .583 AQ9 .578 .440 AQ25 .525 .339 AQ8 .516 .376 AQ15 .495 AQ17 .381 .304 AQ10 .708 AQ2 .699 AQ4 .615 AQ3 .597 .349 AQ20 AQ6 .673 AQ7 .385 .399 -.568 AQ1 .519 AQ5 .511 AQ12 .401 .311 -.476 Extraction Method: Principal Component Analysis. Rotation Method: Oblimin with Kaiser Normalization.

522

Table K- 10 Structure matrix with items 13,14 and 17 removed

Component 1 2 3 AQ24 .732 AQ19 .718 AQ16 .703 -.352 AQ21 .681 AQ23 .666 -.305 AQ22 .637 AQ25 .578 .335 AQ9 .574 .420 AQ18 .557 -.321 AQ8 .547 .362 AQ15 .492 AQ2 .709 AQ10 .709 AQ4 .611 AQ3 .587 .414 AQ20 AQ6 .682 AQ7 .372 .409 -.613 AQ5 .503 AQ1 .487 AQ12 .409 .318 -.469 Extraction Method: Principal Component Analysis. Rotation Method: Oblimin with Kaiser Normalization.

523

Table K- 11 Structure matrix with20 items remaining (GMQ-20)

Component 1 2 3 AQ24 .730 AQ19 .718 AQ16 .702 -.351 AQ21 .684 AQ23 .664 -.300 AQ22 .637 AQ25 .579 .335 AQ9 .578 .379 AQ18 .554 -.307 AQ8 .552 .353 AQ15 .491 AQ2 .723 AQ10 .702 AQ3 .617 .397 AQ4 .608 AQ6 .692 AQ7 .374 .366 -.619 AQ5 .500 AQ1 .490 AQ12 .409 -.472 Extraction Method: Principal Component Analysis. Rotation Method: Oblimin with Kaiser Normalization.

524

Appendix L: POMS, Mini-MAC and FACIT-Sp at three- month follow-up (Study 1)

525 Table L- 1 POMS scores at three-month follow-up N Mean Std. Median Minimum Maximum Deviation TMD 65 2.95 24.56 -3.00 -36 74 Tension- Anxiety 67 2.21 4.91 2.00 -4 18 Depression- Dejection 69 4.81 6.05 3.00 0 30 Anger- Hostility 69 5.04 5.16 4.00 0 25 Vigor- Activity 68 17.25 6.31 16.50 6 32 Fatigue- Inertia 68 6.97 6.29 6.00 0 26 Confusion- 69 1.77 3.61 1.00 -4 12 Bewilderment

Table L- 2 Mini-MAC scores at three-month follow-up N Mean Std. Median Minimum Maximum Deviation Helplessness- 66 10.03 2.69 9.00 8 18 Hopelessness Anxious Preoccupation 67 15.87 4.42 17.00 8 24 Fighting Spirit 67 13.61 2.00 14.00 7 16 Cognitive Avoidance 66 7.85 2.54 8.00 4 13 Fatalism 65 14.97 2.71 15.00 5 20

Table L- 3 FACIT-Sp scores at three-month follow-up N Mean Std. Deviation Median Minimum Maximum FACIT-Sp 67 123.95 15.93 124.00 80 154 FACT-G 67 87.68 11.64 88.00 55 106 Physical wellbeing 68 23.72 4.53 25.00 7 28 Social wellbeing 69 22.32 4.24 23.00 7 28 Emotional wellbeing 67 20.44 2.70 21.00 13 24 Functional wellbeing 68 21.28 5.15 22.00 7 28 Spiritual wellbeing 69 36.17 7.39 37.00 15 48

526 Table L- 4 Changes in POMS scores from program completion to three-month follow-up N Mean Std. Median Minimum Maximum Deviation TMD 53 -10.51 25.53 -8.00 -69 37 Tension-Anxiety 59 -1.46 5.22 -1.00 -20 9 Depression- Dejection 61 -0.15 6.84 0 -29 18 Anger-Hostility 62 -1.87 5.43 -1.00 -22 8 Vigor- Activity 64 3.56 7.52 2.00 -12 24 Fatigue- Inertia 63 -2.37 6.80 -1.00 -21 10 Confusion- 63 -0.71 3.95 -1.00 -13 15 Bewilderment

Table L- 5 Changes in Mini-MAC scores from program completion to three-month follow-up N Mean Std. Median Minimum Maximum Deviation Helplessness- 65 -1.00 2.66 0 -10 4 Hopelessness Anxious Preoccupation 64 -0.94 3.49 0 -9 7 Fighting Spirit 63 0.51 1.80 1.00 -4 6 Cognitive Avoidance 64 -0.08 1.78 0 -4 6 Fatalism 64 -0.25 2.22 0 -5 5

Table L- 6 Changes in FACIT-Sp scores from program completion to three-month follow-up N Mean Std. Deviation Median Minimum Maximum FACIT-Sp 66 3.21 15.01 2.50 -61.50 39.00 FACT-G 66 -1.34 16.54 -3.00 -41. .00 42.00 Physical wellbeing 67 1.46 3.44 1.00 -5.00 17.00 Social wellbeing 68 0.05 3.93 0 -10.00 9.00 Emotional wellbeing 66 -0.20 3.12 0 -17.00 6.00 Functional wellbeing 67 1.30 5.15 1.00 -17.00 19.00 Spiritual wellbeing 68 0.59 5.83 0 -24.50 16.00

527

Appendix M: POMS, Mini-MAC and FACIT-Sp at six and 12-month follow-up (Study 1)

528 Table M- 1 POMS scores at six-month follow-up N Mean Std. Median Minimum Maximum Deviation TMD 45 9.93 23.46 5.00 -31 60 Tension-Anxiety 48 2.38 4.91 2.00 -4 20 Depression- Dejection 50 6.32 6.63 5.00 0 29 Anger-Hostility 50 5.06 4.79 4.00 0 21 Vigor- Activity 50 16.22 6.00 17.00 4 27 Fatigue- Inertia 51 7.45 6.15 6.00 0 22 Confusion- 50 1.4 3.34 1.00 -4 9 Bewilderment

Table M- 2 Mini-MAC scores at six-month follow-up N Mean Std. Median Minimum Maximum Deviation Helplessness- 49 10.65 3.39 10.00 8 23 Hopelessness Anxious Preoccupation 51 16.28 5.34 17.00 8 27 Fighting Spirit 51 13.18 1.95 13.00 7 16 Cognitive Avoidance 51 7.92 2.78 8.00 4 15 Fatalism 50 14.72 2.77 15.00 7 20

Table M- 3 FACIT-Sp scores at six-month follow-up N Mean Std. Deviation Median Minimum Maximum FACIT-Sp 50 121.64 17.45 123.25 82 154 FACT-G 51 83.7 17.18 87.00 35 106 Physical wellbeing 51 23.09 5.24 25.00 7 28 Social wellbeing 51 22.05 4.65 23.00 9 28 Emotional wellbeing 51 19.71 3.47 20.00 9 26 Functional wellbeing 51 20.45 5.51 22.00 5 28 Spiritual wellbeing 50 35.64 7.29 34.50 22 48

529 Table M- 4 Changes in POMS scores from program completion to six-month follow-up N Mean Std. Median Minimum Maximum Deviation TMD 39 -16.23 29.16 -11.00 -82 37 Tension- 44 -1.52 5.71 -1.00 -19 13 Anxiety Depression- 45 -2.22 8.00 -2.00 -27 15 Dejection Anger-Hostility 46 -2.02 5.57 -1.50 -23 9 Vigor- Activity 48 4.69 8.55 4.00 -10 23 Fatigue- Inertia 50 -0.16 2.16 0 -5 6 Confusion- 46 -0.63 3.48 0 -9 8 Bewilderment

Table M- 5 Changes in Mini-MAC scores from program completion to six-month follow-up N Mean Std. Median Minimum Maximum Deviation Helplessness- 49 -1.33 3.31 0 -15 4 Hopelessness Anxious Preoccupation 49 -0.73 3.73 -1.00 -9 7 Fighting Spirit 49 0.96 1.62 1.00 -3 5 Cognitive Avoidance 50 -0.36 2.37 0 -6 6 Fatalism 50 -0.16 2.16 0 -5 6

Table M- 6 Changes in FACIT-Sp scores from program completion to six-month follow-up N Mean Std. Deviation Median Minimum Maximum FACIT-Sp 50 5.77 14.44 3.50 -36.50 40.70 FACT-G 51 2.33 19.81 0 -44.00 58.83 Physical wellbeing 51 2.20 4.25 1.00 -7.00 17.00 Social wellbeing 51 0.31 3.77 0 -7.70 12.70 Emotional wellbeing 51 0.35 3.43 0 -10.00 11.00 Functional wellbeing 51 2.08 5.11 2.00 -15.00 17.00 Spiritual wellbeing 50 1.57 5.40 2.00 -10.50 13.00

530 Table M- 7 POMS scores at 12-month follow-up N Mean Std. Median Minimum Maximum Deviation TMD 31 0.97 21.76 -2 -31 51 Tension-Anxiety 32 1.72 4.6 0.5 -4 13 Depression- Dejection 33 5.15 5.24 4 0 18 Anger-Hostility 33 5.39 4.84 5 0 23 Vigor- Activity 33 18.24 6.37 19 3 27 Fatigue- Inertia 33 6.85 6.53 5 0 28 Confusion- 33 0.73 2.71 1 -4 9 Bewilderment

Table M- 8 Mini-MAC scores at 12-month follow-up N Mean Std. Median Minimum Maximum Deviation Helplessness- 33 9.67 2.46 8 8 16 Hopelessness Anxious 33 15.33 4.73 16 8 22 Preoccupation Fighting Spirit 33 8.09 2.49 8 4 14 Cognitive 33 13.7 1.91 14 9 16 Avoidance Fatalism 33 14.61 2.95 15 6 20

Table M- 9 FACIT-Sp scores at 12-month follow-up N Mean Std. Deviation Median Minimum Maximum FACIT-Sp 32 125.76 15.4 124.7 91 153 FACT-G 33 88.92 10.29 92.3 64 105 Physical wellbeing 33 24.29 3.29 25 13 28 Social wellbeing 33 22.23 4.73 23.3 9 28 Emotional wellbeing 33 19.82 2.98 21 13 24 Functional wellbeing 33 22.58 4.24 23 11 28 Spiritual wellbeing 32 36.94 7.31 37.5 26 48

531 Table M- 10 Changes in POMS scores from program completion to 12-month follow-up N Mean Std. Median Minimum Maximum Deviation TMD 27 -10.56 25.74 -8 -83 32 Tension-Anxiety 28 -0.82 4.6 0 -11 9 Depression- 29 -0.97 6.25 0 -18 15 Dejection Anger-Hostility 29 -2.66 5.58 -3 -21 7 Vigor- Activity 30 2.17 8.44 2.5 -11 18 Fatigue- Inertia 33 -0.3 1.96 0 -4 4 Confusion- 29 -0.24 3.19 0 -8 7 Bewilderment

Table M- 11 Changes in Mini-MAC scores from program completion to 12-month follow-up N Mean Std. Median Minimum Maximum Deviation Helplessness- 33 -0.42 2.74 0 -8 4 Hopelessness Anxious Preoccupation 32 -0.38 3.66 -0.5 -8 7 Fighting Spirit 33 0.27 1.68 0 -3 4 Cognitive Avoidance 33 -0.47 2.03 0 -5 3 Fatalism 32 -0.3 1.96 0 -4 4

Table M- 12 Changes in FACIT-Sp scores from program completion to 12-month follow-up N Mean Std. Deviation Median Minimum Maximum FACIT-Sp 32 2.91 11.09 0 -13 29 FACT-G 33 -3.71 16 -3 -43 32 Physical wellbeing 33 0.62 4.16 1 -10 13 Social wellbeing 33 0.02 4.03 -1 -7.7 9 Emotional wellbeing 33 0.76 2.29 1 -4 5 Functional wellbeing 33 0.61 4.08 0 -7 9 Spiritual wellbeing 32 0.81 4.84 1 -8 14

532

Appendix N: Ethics approval letter for meditation questionnaire development (Study 2)

533 534

Appendix O: Preliminary meditation explanatory statement and questionnaire (Study 2)

535

Project title: Development of a scale to assess the meditation experience

My name is Nicola Reavley and I am a Doctoral student at Swinburne University under the supervision of Dr Julie Pallant. I am undertaking a research project that aims to explore the experience of meditation and its physical and psychological effects.

Meditation is a general term describing the self-regulation of attention and awareness. Many different techniques exist. This study aims to explore the experience of meditation and its effects on everyday life in a wide variety of people. We plan to use this information to develop a questionnaire scale to assess meditation and its effects. It is hoped that this scale will be of use to those researching meditation techniques and to clinicians who use them as part of their practice.

I would like to invite you to participate in this project. Your participation is strictly voluntary. If you wish to participate you will be asked to fill in a questionnaire about your experience of meditation and its effects on your everyday life. You will also be asked for more general information such as age, gender, marital status, education and employment status. It should take you no more than 10 minutes to complete. You are completely free to complete the questionnaire anonymously. You are not required to put your name on the questionnaire and there is no way that you can be identified from your responses.

However, we are planning to carry out in-depth interviews with a small number of participants. If you are willing to be contacted for this purpose, please include your contact details. It is also planned that the information provided on the questionnaire will be used to develop a scale to assess meditation. If you are willing to fill out a further questionnaire please include your contact details. If you are concerned about your own wellbeing you are encouraged to contact your local doctor or a registered psychologist. Alternatively, you could ring Lifeline in Australia on 131114.

Information from the returned questionnaires will be pooled and no details about individual answers will be reported. All information obtained from this study will be controlled by the Senior Investigator. It is hoped that the results of the study will be presented as conference papers or published in an academic journal. However, only group data will be presented and no individual will be identifiable. While your participation in this study would be greatly appreciated, you should not feel compelled to accept or complete the questionnaires if you do not wish to. You are free to withdraw from the study at any time.

Any questions regarding this project can be directed to the Senior Investigator Dr Julie Pallant on 9214 8214 (email [email protected]) or Principal Investigator Nicola Reavley on 9214 5296 (email [email protected]). This research conforms to the principles set out in the Swinburne University of Technology Policy on Research Ethics and the NHMRC guidelines as specified in the National Statement on Ethical Conduct on Research Involving Humans. If you have any queries or concerns which Dr Pallant was unable to satisfy, contact:

The Chair, SBS Ethics Committee Faculty of Life and Social Sciences, Mail H24, PO Box 218, Swinburne University of Technology, Hawthorn, Victoria 3122

If you have a complaint about the way you were treated during this study, please write to:

The Chair, Human Research Ethics Committee PO Box 218 Swinburne University of Technology Hawthorn, Victoria 3122

Thank you very much for your cooperation.

Nicola Reavley Principal Investigator

536

Meditation and its effects on everyday life

Personal Details

Gender: Male Female Age: ______

Relationship status: Single Defacto Married Separated

Divorced Widowed

Completed level of education: Primary Secondary Trade training University

Employment status: Full time Part Time Casual Volunteer Retired

Caring for home and family

How long have you been using meditation? ______

Please describe the meditation technique you currently use:

______

What prompted you to take up meditation? ______

______

In this section we are interested in knowing what you experience when you meditate. Please consider both positive and negative sensations and experiences.

When you meditate what physical sensations do you notice?

______

When you meditate what do you experience in relation to your thoughts or thinking processes?

______

537

When you meditate what do you experience in relation to your feelings and emotions?

______

When you meditate have you had any spiritual, religious or mystical experiences? Please describe:

______

What other sensations or experiences do you notice when you meditate?

______

Please answer the following questions if you practice meditation regularly

How often do you meditate? ______

On average how long do you spend meditating in a session?______

How proficient do you feel you are with your meditation technique?

Not at all extremely

1 2 3 4 5 6 7 8 9 10

To what extent do you feel the effects of meditation flowing into your everyday life?

Not at all to a great extent

1 2 3 4 5 6 7 8 9 10

Please describe what impact you feel meditation has had on your day to day life:

______

538 ______

Further research

We are also interested in following up some of those who complete this questionnaire for an in- depth interview concerning their meditation experience. This information will be used to develop a scale to assess the meditation experience and its impact on everyday life. If you are willing to be interviewed please complete the information below. Please note, only a few people will be selected for follow-up interviews.

I am willing to be contacted for an in-depth interview about my meditation experience.

Name: ______

Contact details (phone, email, or address)

______

The information collected from this questionnaire will be used to develop a scale to assess the experience of meditation and its impact on everyday life. This will be administered along with a number of other measures in a questionnaire booklet. We are looking for people who would be willing to complete this more detailed questionnaire which is likely to be available in the second half of 2005. If you are willing to participate please provide your contact details below:

I am willing to fill in a further questionnaire about my meditation experience which will be available later this year.

Name: ______

Mailing address and email address:

______

If you require any further details concerning this study please contact: Nicola Reavley at Swinburne University on 9214 5296 or email [email protected]. OR Dr Julie Pallant on 9214 8214 or by email at [email protected]

539

Appendix P: Explanatory statement for final meditation questionnaire (Study 2)

540

Project title: Development of a scale to assess the meditation experience

I would like to invite you to participate in this project. Your participation is strictly voluntary. If you wish to participate you will be asked to fill in some questionnaires about your experience of meditation and your thoughts and emotions. You will also be asked for more general information such as age, gender, marital status, education and employment status. It should take you no more than 30 minutes to complete. The questionnaires are completely anonymous and confidential. You are not required to put your name on the questionnaire and there is no way that you can be identified from your responses. A reply paid envelope is supplied for you to send your questionnaire back to the University once it is completed or alternatively it can be done online at: http://media.swin.edu.au/surveyor/survey.asp?s=01062219118113037252

If you are concerned about your own wellbeing you are encouraged to contact your local doctor or a registered psychologist. Alternatively, you could ring Lifeline in Australia on 131114.

The Chair, SBS Ethics Committee Faculty of Life and Social Sciences, Mail H24, PO Box 218, Swinburne University of Technology, Hawthorn, Victoria 3122

If you have a complaint about the way you were treated during this study, please write to:

The Chair, Human Research Ethics Committee PO Box 218 Swinburne University of Technology Hawthorn, Victoria 3122

Thank you very much for your cooperation.

Nicola Reavley Principal Investigator

541

Appendix Q: Meditation questionnaire (Study 2)

542

Meditation and its effects on everyday life

Personal Details

Gender: Male Female Age: ______

Relationship status: Single De facto Married Separated Divorced Widowed

Completed level of education: Primary Secondary Trade training University

Employment status: Full time Part Time Casual Volunteer Retired Caring for home/family

How long have you been using meditation? ______

Please describe the meditation method you currently use:

______

How often do you meditate?______

On average how long do you spend meditating in a session? ______

How proficient do you feel you are with your meditation technique?

Not at all 1 2 3 4 5 6 7 8 9 10 extremely

To what extent do you feel the benefits of meditation flowing into your everyday life?

Not at all 1 2 3 4 5 6 7 8 9 10 to a great extent

What prompted you to take up meditation? ______

What do you hope to get from your meditation practice?

______

What do you perceive as the qualities of an accomplished meditator?

______

543

During meditation

The questions in this section aim to explore your experiences during meditation. Using the 1-6 scale below, please indicate how frequently or infrequently you have each experience. Please answer according to what really reflects your experience rather than what you think your experience should be. Please treat each item separately from every other item. 1 2 3 4 5 6 Almost never Almost always

Physical 1 My body becomes heavy 1 2 3 4 5 6 2 My temperature becomes warmer or cooler 1 2 3 4 5 6 3 My body becomes soft and loose 1 2 3 4 5 6 4 My body awareness changes – as if parts of it were 1 2 3 4 5 6 ‘missing’ or expanding in size or becoming distorted

5 I lose awareness of my body 1 2 3 4 5 6 6 I experience my body as light or floating 1 2 3 4 5 6 7 I notice tingling in my body 1 2 3 4 5 6 8 I sense energy flowing in parts of my body 1 2 3 4 5 6 9 I feel a sense of physical wellbeing 1 2 3 4 5 6 10 I feel restlessness or twitching of parts of my body 1 2 3 4 5 6 11* I feel tension in my body increase 1 2 3 4 5 6 12 I become aware of tightness in parts of my body 1 2 3 4 5 6 13 I feel my body relax 1 2 3 4 5 6 14* I feel nauseous, light-headed or dizzy 1 2 3 4 5 6 15 I am aware of physical discomfort 1 2 3 4 5 6 16 I feel the desire to cough, sneeze, scratch or swallow 1 2 3 4 5 6 17 I feel the desire to smile or laugh 1 2 3 4 5 6 18 I settle quickly into the meditation experience 1 2 3 4 5 6 19 I am able to remain still for the meditation period 1 2 3 4 5 6 20 I feel my heart rate slow down 1 2 3 4 5 6 21 I feel my breathing slow down 1 2 3 4 5 6 22 I feel as if my breathing stops for a period of time 1 2 3 4 5 6 23 My perceptions are clearer 1 2 3 4 5 6 24 I feel sleepy 1 2 3 4 5 6

544 1 2 3 4 5 6 Almost never Almost always

Cognitive 25 I find the meditation method easy to use 1 2 3 4 5 6 26 I am aware of external surroundings interfering with my 1 2 3 4 5 6 meditation 27 I am aware of a continuous stream of distracting thoughts 1 2 3 4 5 6 28 I am able to let my thoughts go and not get caught up in 1 2 3 4 5 6 them 29 My thoughts seem distant and far away 1 2 3 4 5 6 30 I feel my thoughts slow down 1 2 3 4 5 6 31 I am aware of periods of stillness or silence with no 1 2 3 4 5 6 thoughts coming into awareness 32 I observe my thoughts as an impartial observer 1 2 3 4 5 6 33* I feel self-conscious or awkward 1 2 3 4 5 6 34* I am aware of a sense of discomfort at new experiences 1 2 3 4 5 6 35 I analyse what I experience in meditation 1 2 3 4 5 6 36 I observe without judgement any negative thoughts or 1 2 3 4 5 6 emotions that arise 37 I observe without judgement any positive thoughts or 1 2 3 4 5 6 emotions that arise 38 I accept my meditation practice however it is going 1 2 3 4 5 6 39 I feel mentally dull 1 2 3 4 5 6 40 My sense of time is altered 1 2 3 4 5 6 41 I experience a shift to a different state of awareness 1 2 3 4 5 6 42 My mind is alert but still 1 2 3 4 5 6 43 I have sudden flashes of insight 1 2 3 4 5 6 44 I observe inner colours, sounds or visions 1 2 3 4 5 6

Emotional 45 I have thoughts or memories which bring an emotional 1 2 3 4 5 6 response 46* I feel no emotion or less emotion 1 2 3 4 5 6 47* I experience intense emotions 1 2 3 4 5 6 48 I experience fluctuating emotions 1 2 3 4 5 6 49 I experience feelings of sadness and depression 1 2 3 4 5 6 50 I experience feelings of anger 1 2 3 4 5 6

545 1 2 3 4 5 6 Almost never Almost always

51 I experience feelings of tension and anxiety 1 2 3 4 5 6 52 I experience feelings of boredom and frustration 1 2 3 4 5 6 53 I experience feelings of bliss, elation, joy and love 1 2 3 4 5 6 54 I experience feelings of gratitude and contentment 1 2 3 4 5 6 55 I experience feelings of calm and tranquillity 1 2 3 4 5 6

Expanded consciousness/awareness 56 I have creative ideas/solutions/insights come to awareness 1 2 3 4 5 6 57 I am aware of being on the threshold of a deeper 1 2 3 4 5 6 experience 58 I am confident of healing taking place in my body 1 2 3 4 5 6 59 I experience a sense of timeless, boundless, infinite space 1 2 3 4 5 6 60 I am aware of a sense of expanded consciousness 1 2 3 4 5 6 61 I have what I describe as a mystical experience 1 2 3 4 5 6 62 I feel a sense of inner peace 1 2 3 4 5 6 63 I have an experience of contact with a higher power 1 2 3 4 5 6 64 I feel a sense of awe and wonder 1 2 3 4 5 6 65 I experience a sense of connectedness 1 2 3 4 5 6 66 I have experiences that I am unable to put into words 1 2 3 4 5 6 67 I have a sense of existential, primal silence 1 2 3 4 5 6 68 I experience what are sometimes described as ‘psychic 1 2 3 4 5 6 phenomena’ 69 I have a new awareness of order in the universe 1 2 3 4 5 6

546

Everyday life

The questions in this section aim to explore the effects of meditation on everyday life.

Shown below are some of the benefits meditators have reported in their everyday lives. Please indicate which of these are true for you.

1 2 3 4 5 6 Not true for me True for me

Physical 1 I experience fewer physical symptoms of stress 1 2 3 4 5 6 2 I cope better with physical symptoms of stress 1 2 3 4 5 6 3 I cope better with pain or am less influenced by pain 1 2 3 4 5 6 4 I sleep better 1 2 3 4 5 6 5 I cope better with tiredness 1 2 3 4 5 6 7 I have more energy or vitality 1 2 3 4 5 6 8 I am more aware of body sensations and responses 1 2 3 4 5 6 9 My sensory perception is better 1 2 3 4 5 6 10 I feel a sense of physical wellbeing 1 2 3 4 5 6 11 I suffer fewer illnesses or symptoms of illness 1 2 3 4 5 6

Cognitive/behavioural 12 I have better control over my eating habits 1 2 3 4 5 6 13 I am less affected by habits such as biting nails, teeth 1 2 3 4 5 6 grinding etc 14 I am less affected by fears and obsessive behaviour 1 2 3 4 5 6 patterns 15 I am more able to function effectively in everyday life 1 2 3 4 5 6 16 I am more organised and efficient 1 2 3 4 5 6 17 I am generally more relaxed 1 2 3 4 5 6 18 I am less affected by strong desires or impulses 1 2 3 4 5 6 19 I have made healthy lifestyle changes 1 2 3 4 5 6 20* I am less motivated in life 1 2 3 4 5 6 21 I have less destructive behaviour 1 2 3 4 5 6 22 I have better mental focus and concentration 1 2 3 4 5 6 23 I am able to think more clearly 1 2 3 4 5 6 24 My memory is better 1 2 3 4 5 6 25 I have better problem-solving skills 1 2 3 4 5 6

547

1 2 3 4 5 6 Not true for me True for me

26 I recognise that thoughts are just thoughts rather than 1 2 3 4 5 6 accurate reflections of reality 27 I find it easier to make decisions 1 2 3 4 5 6 28 I have a better understanding of myself and others 1 2 3 4 5 6 29 I am more aware of the effects of my behaviours 1 2 3 4 5 6 30 My state of mind is more balanced 1 2 3 4 5 6 31 I am more creative 1 2 3 4 5 6 32 I have better dream recall 1 2 3 4 5 6 33 I have a different way of coping and responding to 1 2 3 4 5 6 what is going on in life 34 I cope better with stressful or negative experiences 1 2 3 4 5 6 and feelings 35 I am more able to appreciate and be positive about 1 2 3 4 5 6 everyday life 36 I am more adaptable or flexible in new circumstances 1 2 3 4 5 6 37 I spend less time preoccupied with the past or the 1 2 3 4 5 6 future 38 I am more able to focus on what is happening in the 1 2 3 4 5 6 present moment (eg. jobs, tasks, driving) 39 I am more able to forgive myself and others and move 1 2 3 4 5 6 on 40 I am able to contact my inner stillness when I need to 1 2 3 4 5 6 41* I neglect other important things in life because of 1 2 3 4 5 6 meditation 42 I am happier with my relationships 1 2 3 4 5 6 43 I feel closer to the people in my life 1 2 3 4 5 6 44 I am more compassionate and empathic 1 2 3 4 5 6 45 I am less judgemental of myself and others 1 2 3 4 5 6 46 I am less likely to act on my desires at the expense of 1 2 3 4 5 6 others 47 My social networks have changed for the better 1 2 3 4 5 6 48 I make more effort to avoid causing suffering to others 1 2 3 4 5 6 49 I have less conflict with others 1 2 3 4 5 6 50 My family and friends have noticed that meditation 1 2 3 4 5 6 has benefited me

548

1 2 3 4 5 6 Not true for me True for me

Emotional 51 I am less emotionally reactive 1 2 3 4 5 6 52 I generally feel calmer and more centred 1 2 3 4 5 6 53 I experience more happiness and joy in life 1 2 3 4 5 6 54 I feel as if I am handling life better 1 2 3 4 5 6 55 I generally feel more positive about life 1 2 3 4 5 6 56 I am less quick to anger 1 2 3 4 5 6 57 I am less anxious 1 2 3 4 5 6 58 I am more self-confident 1 2 3 4 5 6 59 I am less depressed 1 2 3 4 5 6

Expanded consciousness 60 I feel a sense of inner peace and strength 1 2 3 4 5 6 61 I experience a sense of calm control over life and 1 2 3 4 5 6 thoughts 62 I experience a sense of the inter-connectedness of life 1 2 3 4 5 6 63 I am more able to trust my inner nature and wisdom 1 2 3 4 5 6 64 I have a greater awareness of personal responsibility 1 2 3 4 5 6 65* My spiritual life is more important to me 1 2 3 4 5 6 66 I have noticed a change in my values and vision of life 1 2 3 4 5 6 67 I experience more fulfilment and meaning in life 1 2 3 4 5 6 68 I have had ‘out of the ordinary’ or ‘mystical’ 1 2 3 4 5 6 experiences in daily life

Please describe any other positive or negative consequences of meditating: ______

Note: * items removed before initial factor analysis

549

Using the 1-5 scale provided, decide how much you either agree or disagree with each statement. Please answer according to what really reflects your experience rather than what you think your experience should be. Please treat each item separately from every other item.

Strongly 1 2 3 4 5 Strongly disagree agree

1. I don't have much control over my emotional 1 2 3 4 5 reactions to stressful situations.

2. When I'm in a bad mood I find it hard to 1 2 3 4 5 snap myself out of it.

3. My feelings are usually fairly stable. 1 2 3 4 5

4. I can usually talk myself out of feeling bad. 1 2 3 4 5

5. No matter what happens to me in my life I am 1 2 3 4 5 confident of my ability to cope emotionally.

6. I have a number of good techniques that will help 1 2 3 4 5 me cope with any stressful situation.

7. I find it hard to stop myself from thinking. 1 2 3 4 5 about my problems

8. If I start to worry about something I can usually 1 2 3 4 5 distract myself and think about something nicer.

9. If I realize I am thinking silly thoughts 1 2 3 4 5 I can usually stop myself.

10. I am usually able to keep my thoughts 1 2 3 4 5 under control.

11. I imagine there will be many situations in the future 1 2 3 4 5 where silly thoughts will get the better of me.

12. I have a number of techniques which I am 1 2 3 4 5 confident will help me think clearly and rationally in any situation I might find myself.

13. Even when under pressure I can. 1 2 3 4 5 usually keep calm and relaxed

14. I have a number of techniques or tricks that I use to 1 2 3 4 5 stay relaxed in stressful situations.

15. When I'm anxious or uptight there does not seem 1 2 3 4 5 to be much that I can do to help myself relax.

16. There is not much I can do to relax when I get uptight.1 2 3 4 5

17. I have a number of ways of relaxing that I am 1 2 3 4 5 confident will help me cope.

18. If my stress levels get too high I know there are 1 2 3 4 5 things I can do to help myself.

550

Below is a collection of statements about your everyday experience. Using the 1-6 scale below, please indicate how frequently or infrequently you currently have each experience. Please answer according to what really reflects your experience rather than what you think your experience should be. Please treat each item separately from every other item.

1 2 3 4 5 6 Almost Very Somewhat Somewhat Very Almost Never Infrequently Infrequently Frequently Frequently Always

1. I could be experiencing some emotion and not be conscious of it until some time later. 1 2 3 4 5 6

2. I break or spill things because of carelessness, not paying attention, or thinking of something else. 1 2 3 4 5 6

3. I find it difficult to stay focused on what’s happening in the present. 1 2 3 4 5 6

4. I tend to walk quickly to get where I’m going without paying attention to what I experience along the way. 1 2 3 4 5 6

5. I tend not to notice feelings of physical tension or discomfort until they really grab my attention. 1 2 3 4 5 6

6. I forget a person’s name almost as soon as I’ve been told it for the first time. 1 2 3 4 5 6

7. It seems I am “running on automatic,” without much awareness of what I’m doing. 1 2 3 4 5 6

8. I rush through activities without being really attentive to them. 1 2 3 4 5 6

9. I get so focused on the goal I want to achieve that I lose touch with what I’m doing right now to get there. 1 2 3 4 5 6

10. I do jobs or tasks automatically, without being aware of what I'm doing. 1 2 3 4 5 6

11. I find myself listening to someone with one ear, doing something else at the same time. 1 2 3 4 5 6

12. I drive places on ‘automatic pilot’ and then wonder why I went there. 1 2 3 4 5 6

13. I find myself preoccupied with the future or the past. 1 2 3 4 5 6

14 I find myself doing things without paying attention. 1 2 3 4 5 6

15. I snack without being aware that I’m eating. 1 2 3 4 5 6

551

Using the 0-4 scale provided, decide how much you either agree or disagree with each statement. Please answer according to what really reflects your experience rather than what you think your experience should be. Please treat each item separately from every other item.

0 1 2 3 4

Not at all A little bit Somewhat Quite a bit Very much

1. I feel peaceful 0 1 2 3 4

2. I have a reason for living 0 1 2 3 4

3. My life has been productive 0 1 2 3 4

4. I have trouble feeling peace of mind 0 1 2 3 4

5. I feel a sense of purpose in life 0 1 2 3 4

6. I am able to reach down deep into myself for comfort 0 1 2 3 4

7. I feel a sense of harmony within myself 0 1 2 3 4

8. My life lacks meaning and purpose 0 1 2 3 4

9. I find comfort in my faith or spiritual beliefs 0 1 2 3 4

10. I find strength in my faith or spiritual beliefs 0 1 2 3 4

552

Below is a list of words that describe feelings people have. Please read each one carefully. Then circle ONE answer to the right which best describes HOW YOU HAVE BEEN FEELING DURING THE PAST WEEK INCLUDING TODAY.

The numbers refer to these phrases:

0 1 2 3 4 Not at all A little Moderately Quite a bit Extremely

1. Tense 0 1 2 3 4 20. Discouraged 0 1 2 3 4

2. Angry 0 1 2 3 4 21. Resentful 0 1 2 3 4

3. Worn out 0 1 2 3 4 22. Nervous 0 1 2 3 4

4. Unhappy 0 1 2 3 4 23. Miserable 0 1 2 3 4

5. Lively 0 1 2 3 4 24. Cheerful 0 1 2 3 4

6. Confused 0 1 2 3 4 25. Bitter 0 1 2 3 4

7. Peeved 0 1 2 3 4 26. Exhausted 0 1 2 3 4

8. Sad 0 1 2 3 4 27. Anxious 0 1 2 3 4

9. Active 0 1 2 3 4 28. Helpless 0 1 2 3 4

10. On edge 0 1 2 3 4 29. Weary 0 1 2 3 4

11. Grouchy 0 1 2 3 4 30. Bewildered 0 1 2 3 4

12. Blue 0 1 2 3 4 31. Furious 0 1 2 3 4

13. Energetic 0 1 2 3 4 32. Full of pep 0 1 2 3 4

14. Hopeless 0 1 2 3 4 33. Worthless 0 1 2 3 4

15. Uneasy 0 1 2 3 4 34. Forgetful 0 1 2 3 4

16. Restless 0 1 2 3 4 35. Vigorous 0 1 2 3 4

17. Unable to 0 1 2 3 4 36. Uncertain about 0 1 2 3 4 concentrate things

18. Fatigued 0 1 2 3 4 37. Bushed 0 1 2 3 4

19. Annoyed 0 1 2 3 4

553

Listed below are a number of physical symptoms or problems. Please rate how much each has bothered you over the last three months using the scale below:

hasn’t 1 2 3 4 5 has bothered me bothered me a lot at all

1. Headaches 1 2 3 4 5

2. Asthma 1 2 3 4 5

3. Hayfever or allergies 1 2 3 4 5

4. Diarrhoea 1 2 3 4 5

5. Cold or flu 1 2 3 4 5

6. Constipation 1 2 3 4 5

7. Indigestion or nausea 1 2 3 4 5

8. Chest pains 1 2 3 4 5

9. Heart pounding or racing 1 2 3 4 5

10. Feeling dizzy or faint 1 2 3 4 5

11. Tension in the jaw, neck, shoulders 1 2 3 4 5

12. Tired and lacking energy 1 2 3 4 5

13. Excessive sweating 1 2 3 4 5

14. Lump in your throat 1 2 3 4 5

15. Shaking or trembling hands 1 2 3 4 5

16. Feeling breathless 1 2 3 4 5

554

Appendix R: Additional statistical analyses of Effects of Meditation questionnaire (Study 2)

555 Table R- 1 Table of eigenvalues in Principal Components Analysis for Effects During Meditation scale

Initial Eigenvalues Extraction Sums of Squared Loadings Component Total % of Variance Cumulative % Total % of Variance Cumulative % 1 16.594 25.529 25.529 16.594 25.529 25.529 2 5.900 9.076 34.606 5.900 9.076 34.606 3 2.961 4.555 39.161 2.961 4.555 39.161 4 2.635 4.053 43.214 2.635 4.053 43.214 5 2.137 3.288 46.502 2.137 3.288 46.502 6 1.783 2.743 49.245 1.783 2.743 49.245 7 1.542 2.372 51.617 1.542 2.372 51.617 8 1.520 2.338 53.955 1.520 2.338 53.955 9 1.399 2.152 56.107 1.399 2.152 56.107 10 1.270 1.954 58.061 1.270 1.954 58.061 11 1.260 1.938 59.999 1.260 1.938 59.999 12 1.177 1.811 61.809 1.177 1.811 61.809 13 1.101 1.693 63.503 1.101 1.693 63.503 14 1.073 1.650 65.153 1.073 1.650 65.153 15 1.036 1.594 66.747 1.036 1.594 66.747 16 1.008 1.550 68.297 1.008 1.550 68.297 17 .978 1.504 69.801 18 .948 1.459 71.260 19 .873 1.342 72.603 20 .860 1.324 73.926 21 .831 1.279 75.205 22 .802 1.233 76.439 23 .758 1.166 77.604 24 .736 1.132 78.737 25 .701 1.079 79.816 26 .666 1.025 80.841 27 .634 .976 81.817 28 .603 .928 82.745 29 .594 .915 83.660 30 .580 .893 84.552 31 .554 .852 85.404 32 .532 .818 86.223 33 .523 .805 87.028 34 .479 .737 87.765 35 .468 .720 88.485 36 .446 .686 89.171 37 .424 .652 89.824 38 .408 .627 90.451 39 .393 .605 91.056 40 .378 .582 91.638 41 .371 .571 92.209 42 .347 .534 92.744 43 .335 .516 93.260 44 .328 .505 93.765 45 .304 .468 94.233 46 .294 .452 94.685 47 .285 .439 95.124 48 .269 .414 95.538 49 .260 .399 95.937 50 .251 .386 96.324 51 .241 .370 96.694 52 .237 .365 97.059 53 .210 .323 97.382 54 .204 .313 97.695 55 .198 .304 97.999 56 .182 .281 98.280 57 .163 .250 98.530 58 .154 .237 98.767 59 .146 .225 98.992 60 .137 .211 99.203 61 .122 .187 99.390 62 .110 .170 99.560 63 .104 .161 99.721 64 .098 .150 99.871 65 .084 .129 100.000 Extraction Method: Principal Component Analysis. 556 Table R- 2 Unrotated component matrix for five-factor solution for Experiences During Meditation scale with four items removed

Component 1 2 3 4 5 I am aware of a sense of expanded consciousness .838 I experience a sense of timeless, boundless, infinite space .781 I experience feelings of calm and tranquility .775 I experience feelings of gratitude and contentment .766 My mind is alert but still .737 I experience feelings of bliss, elation, joy and love .728 I feel a sense of inner peace .716 My perceptions are clearer .714 I experience a shift to a different state of awareness .714 I experience a sense of connectedness .709 I have a new awareness of order in the universe .674 I have a sense of existential, primal silence .664 I am aware of being on the threshold of a deeper experience .664 I feel a sense of awe and wonder .656 I have what I describe as a mystical experience .656 -.382 I am aware of periods of stillness or silence with no thoughts coming into .640 awareness I have creative ideas/solutions/insights come to awareness .636 I feel a sense of physical wellbeing .635 I am confident of healing taking place in my body .621 I am able to let my thoughts go and not get caught up in them .621 I observe my thoughts as an impartial observer .609 .347 I settle quickly into the meditation experience .605 I have an experience of contact with a higher power .591 -.466 I find the meditation method easy to use .583 I have sudden flashes of insight .580 I feel my thoughts slow down .571 I observe without judgement any positive thoughts or emotions that arise .571 .460 I have experiences that I am unable to put into words .564 I sense energy flowing in parts of my body .537 I feel my body relax .535 My body becomes soft and loose .534 .397 My thoughts seem distant and far away .528 -.302 I experience my body as light or floating .527 -.327 I experience what are sometimes described as 'psychic phenomena' .524 -.364 I accept my meditation practice however it is going .482 .379 I feel as if my breathing stops for a period of time .467 .305 My sense of time is altered .461 I observe inner colours, sounds or visions .416 -.366 I experience feelings of tension and anxiety .732 I experience feelings of anger .682 -.405 I experience fluctuating emotions .666 -.460 I experience feelings of boredom and frustration .664 I have thoughts or memories which bring an emotional response .656 I experience feelings of sadness and depression .637 -.441 I become aware of tightness in parts of my body .581 .360 I experience intense emotions .569 -.372 -.322 I feel restlessness or twitching of parts of my body .563 .387 I am aware of physical discomfort .552 .371 .354 I feel the desire to cough, sneeze, scratch or swallow .484 I am aware of a continuous stream of distracting thoughts .477 I notice tingling in my body .421 I feel the desire to smile or laugh .388 I feel sleepy .355 I feel mentally dull .332 I am aware of external surroundings interfering with my meditation I observe without judgement any negative thoughts or emotions that arise .490 .499 I lose awareness of my body .325 -.369 My body becomes heavy .523 I feel my breathing slow down .416 .518 I feel my heart rate slow down .394 .406 My body awareness changes - as if parts of it were 'missing' or expanding .351 .359 in size or becoming distorted My temperature becomes warmer or cooler .305 -.325 .330 I feel no emotion or less emotion .328 I analyse what I experience in meditation I am able to remain still for the meditation period .305 -.307 557 Table R- 3 Rotated component matrix for five-factor solution for Experiences During Meditation with four items removed

Component 1 2 3 4 5 I am aware of a sense of expanded consciousness .838 I experience a sense of timeless, boundless, infinite space .781 I experience feelings of calm and tranquillity .775 I experience feelings of gratitude and contentment .766 My mind is alert but still .737 I experience feelings of bliss, elation, joy and love .728 I feel a sense of inner peace .716 My perceptions are clearer .714 I experience a shift to a different state of awareness .714 I experience a sense of connectedness .709 I have a new awareness of order in the universe .674 I have a sense of existential, primal silence .664 I am aware of being on the threshold of a deeper experience .664 I feel a sense of awe and wonder .656 I have what I describe as a mystical experience .656 -.382 I am aware of periods of stillness or silence with no thoughts coming into .640 awareness I have creative ideas/solutions/insights come to awareness .636 I feel a sense of physical wellbeing .635 I am confident of healing taking place in my body .621 I am able to let my thoughts go and not get caught up in them .621 I observe my thoughts as an impartial observer .609 .347 I settle quickly into the meditation experience .605 I have an experience of contact with a higher power .591 -.466 I find the meditation method easy to use .583 I have sudden flashes of insight .580 I feel my thoughts slow down .571 I observe without judgement any positive thoughts or emotions that arise .571 .460 I have experiences that I am unable to put into words .564 I sense energy flowing in parts of my body .537 I feel my body relax .535 My body becomes soft and loose .534 .397 My thoughts seem distant and far away .528 -.302 I experience my body as light or floating .527 -.327 I experience what are sometimes described as 'psychic phenomena' .524 -.364 I accept my meditation practice however it is going .482 .379 I feel as if my breathing stops for a period of time .467 .305 My sense of time is altered .461 I observe inner colours, sounds or visions .416 -.366 I experience feelings of tension and anxiety .732 I experience feelings of anger .682 -.405 I experience fluctuating emotions .666 -.460 I experience feelings of boredom and frustration .664 I have thoughts or memories which bring an emotional response .656 I experience feelings of sadness and depression .637 -.441 I become aware of tightness in parts of my body .581 .360 I experience intense emotions .569 -.372 -.322 I feel restlessness or twitching of parts of my body .563 .387 I am aware of physical discomfort .552 .371 .354 I feel the desire to cough, sneeze, scratch or swallow .484 I am aware of a continuous stream of distracting thoughts .477 I notice tingling in my body .421 I feel the desire to smile or laugh .388 I feel sleepy .355 I feel mentally dull .332 I am aware of external surroundings interfering with my meditation I observe without judgement any negative thoughts or emotions that arise .490 .499 I lose awareness of my body .325 -.369 My body becomes heavy .523 I feel my breathing slow down .416 .518 I feel my heart rate slow down .394 .406 My body awareness changes - as if parts of it were 'missing' or expanding in .351 .359 size or becoming distorted My temperature becomes warmer or cooler .305 -.325 .330 I feel no emotion or less emotion .328 I analyse what I experience in meditation I am able to remain still for the meditation period .305 -.307 Extraction Method: Principal Component Analysis, a 5 components extracted.

558 Table R- 4 Rotated pattern matrix for five-factor solution for Experiences During Meditation scale with four items removed

Component 1 2 3 4 5 My body becomes heavy .560 My temperature becomes warmer or cooler -.385 .386 My body becomes soft and loose .652 My body awareness changes - as if parts of it were 'missing' or expanding in size or .507 becoming distorted I lose awareness of my body -.336 I experience my body as light or floating .440 .348 I notice tingling in my body .436 I sense energy flowing in parts of my body .417 I feel a sense of physical wellbeing .411 I feel restlessness or twitching of parts of my body .691 I become aware of tightness in parts of my body .659 I feel my body relax .437 I am aware of physical discomfort .752 I feel the desire to cough, sneeze, scratch or swallow .640 I feel the desire to smile or laugh .311 .460 I settle quickly into the meditation experience .360 I am able to remain still for the meditation period .370 .349 I feel my heart rate slow down .555 I feel my breathing slow down .716 I feel as if my breathing stops for a period of time .404 My perceptions are clearer .508 .313 I feel sleepy -.409 I find the meditation method easy to use .354 I am aware of external surroundings interfering with my meditation -.358 .373 I am aware of a continuous stream of distracting thoughts .409 I am able to let my thoughts go and not get caught up in them .370 .332 My thoughts seem distant and far away .403 .337 I feel my thoughts slow down .428 I am aware of periods of stillness or silence with no thoughts coming into .392 awareness I observe my thoughts as an impartial observer .463 .454 I analyse what I experience in meditation I observe without judgement any negative thoughts or emotions that arise .518 .357 I observe without judgement any positive thoughts or emotions that arise .395 .544 I accept my meditation practice however it is going .513 I feel mentally dull My sense of time is altered .383 I experience a shift to a different state of awareness .485 My mind is alert but still .515 .354 I have sudden flashes of insight .618 I observe inner colours, sounds or visions .510 -.325 I have thoughts or memories which bring an emotional response .698 I feel no emotion or less emotion -.342 I experience intense emotions .320 .728 I experience fluctuating emotions .842 I experience feelings of sadness and depression .802 I experience feelings of anger .798 I experience feelings of tension and anxiety .656 .301 I experience feelings of boredom and frustration .388 .442 I experience feelings of bliss, elation, joy and love .700 I experience feelings of gratitude and contentment .617 .337 I experience feelings of calm and tranquillity .454 .370 I have creative ideas/solutions/insights come to awareness .669 I am aware of being on the threshold of a deeper experience .619 I am confident of healing taking place in my body .527 I experience a sense of timeless, boundless, infinite space .692 I am aware of a sense of expanded consciousness .680 I have what I describe as a mystical experience .789 I feel a sense of inner peace .463 I have an experience of contact with a higher power .857 -.327 I feel a sense of awe and wonder .800 I experience a sense of connectedness .723 I have experiences that I am unable to put into words .573 I have a sense of existential, primal silence .633 I experience what are sometimes described as 'psychic phenomena' .728 I have a new awareness of order in the universe .765 Extraction Method: Principal Component Analysis. Rotation Method: Oblimin with Kaiser Normalization. a Rotation converged in 33 iterations.

559 Table R- 5 Rotated structure matrix for five-factor solution for Experiences During Meditation scale with four items removed

Component 1 2 3 4 5 My body becomes heavy .485 My temperature becomes warmer or cooler -.339 .387 My body becomes soft and loose .408 .694 My body awareness changes - as if parts of it were 'missing' or expanding in .305 .530 size or becoming distorted I lose awareness of my body .322 .365 I experience my body as light or floating .527 .495 I notice tingling in my body .445 I sense energy flowing in parts of my body .512 .410 I feel a sense of physical wellbeing .555 .469 I feel restlessness or twitching of parts of my body .713 I become aware of tightness in parts of my body .330 .696 I feel my body relax .413 .530 I am aware of physical discomfort .759 I feel the desire to cough, sneeze, scratch or swallow .663 I feel the desire to smile or laugh .435 I settle quickly into the meditation experience .464 .387 .494 I am able to remain still for the meditation period .415 .340 -.315 I feel my heart rate slow down .575 I feel my breathing slow down .696 I feel as if my breathing stops for a period of time .375 .504 My perceptions are clearer .647 .422 .435 I feel sleepy -.436 .304 I find the meditation method easy to use .450 .353 .474 I am aware of external surroundings interfering with my meditation -.392 .391 I am aware of a continuous stream of distracting thoughts .355 .483 I am able to let my thoughts go and not get caught up in them .520 .432 .433 My thoughts seem distant and far away .504 .478 I feel my thoughts slow down .430 .336 .528 I am aware of periods of stillness or silence with no thoughts coming into .507 .360 .540 awareness I observe my thoughts as an impartial observer .548 .539 I analyse what I experience in meditation I observe without judgement any negative thoughts or emotions that arise .402 .565 I observe without judgement any positive thoughts or emotions that arise .491 .612 I accept my meditation practice however it is going .378 .573 I feel mentally dull .332 My sense of time is altered .443 .303 I experience a shift to a different state of awareness .639 .332 .493 My mind is alert but still .656 .474 .435 I have sudden flashes of insight .619 I observe inner colours, sounds or visions .497 I have thoughts or memories which bring an emotional response .720 I feel no emotion or less emotion -.351 I experience intense emotions .714 I experience fluctuating emotions .821 I experience feelings of sadness and depression .786 I experience feelings of anger .800 I experience feelings of tension and anxiety .728 .503 I experience feelings of boredom and frustration .526 .579 I experience feelings of bliss, elation, joy and love .739 .338 I experience feelings of gratitude and contentment .719 .462 .383 I experience feelings of calm and tranquillity .655 .387 .585 I have creative ideas/solutions/insights come to awareness .673 I am aware of being on the threshold of a deeper experience .680 .383 I am confident of healing taking place in my body .602 .362 I experience a sense of timeless, boundless, infinite space .777 .462 I am aware of a sense of expanded consciousness .801 .301 .504 I have what I describe as a mystical experience .750 I feel a sense of inner peace .619 .381 .455 I have an experience of contact with a higher power .741 I feel a sense of awe and wonder .751 I experience a sense of connectedness .736 .306 I have experiences that I am unable to put into words .588 I have a sense of existential, primal silence .676 .346 I experience what are sometimes described as 'psychic phenomena' .645 I have a new awareness of order in the universe .742 Extraction Method: Principal Component Analysis. Rotation Method: Oblimin with Kaiser Normalization.

560 Table R- 6 Structure matrix for five-factor solution for Experiences During Meditation scale with 31 items

Component 1 2 3 4 5 50 I observe without judgement any positive thoughts or .803 emotions that arise 49 I observe without judgement any negative thoughts or .770 emotions that arise 45 I observe my thoughts as an impartial observer .769 67 I experience feelings of gratitude and contentment .725 -.486 41 I am able to let my thoughts go and not get caught up in .671 -.332 them 55 My mind is alert but still .670 -.459 .354 51 I accept my meditation practice however it is going .654 36 My perceptions are clearer .643 -.426 .334 61 I experience fluctuating emotions .832 63 I experience feelings of anger .827 62 I experience feelings of sadness and depression .814 60 I experience intense emotions .733 -.321 64 I experience feelings of tension and anxiety .713 .517 58 I have thoughts or memories which bring an emotional .708 .335 response 76 I have an experience of contact with a higher power -.830 74 I have what I describe as a mystical experience .302 -.822 81 I experience what are sometimes described as 'psychic -.730 phenomena' 82 I have a new awareness of order in the universe .457 -.724 77 I feel a sense of awe and wonder .489 -.702 72 I experience a sense of timeless, boundless, infinite space .509 -.680 .382 57 I observe inner colours, sounds or visions -.603 34 I feel my breathing slow down .349 .749 16 My body becomes soft and loose .309 -.346 .671 33 I feel my heart rate slow down .660 14 My body becomes heavy .654 17 My body awareness changes - as if parts of it were -.382 .517 'missing' or expanding in size or becoming distorted 28 I am aware of physical discomfort .832 23 I feel restlessness or twitching of parts of my body .779 29 I feel the desire to cough, sneeze, scratch or swallow .740 25 I become aware of tightness in parts of my body .350 .699 30 I feel the desire to smile or laugh .435 Extraction Method: Principal Component Analysis. Rotation Method: Oblimin with Kaiser Normalization.

561 Table R- 7 Table of eigenvalues in Principal Components Analysis for Effects of Meditation in Everyday Life scale

Initial Eigenvalues Extraction Sums of Squared Loadings Component Total % of Variance Cumulative % Total % of Variance Cumulative % 1 31.079 48.562 48.562 31.079 48.562 48.562 2 3.221 5.032 53.594 3.221 5.032 53.594 3 2.217 3.465 57.059 2.217 3.465 57.059 4 1.827 2.855 59.913 1.827 2.855 59.913 5 1.768 2.763 62.676 1.768 2.763 62.676 6 1.508 2.356 65.032 1.508 2.356 65.032 7 1.328 2.076 67.108 1.328 2.076 67.108 8 1.178 1.841 68.949 1.178 1.841 68.949 9 1.080 1.687 70.636 1.080 1.687 70.636 10 1.009 1.577 72.213 1.009 1.577 72.213 11 .940 1.469 73.682 12 .933 1.458 75.140 13 .817 1.276 76.416 14 .794 1.241 77.657 15 .701 1.096 78.753 16 .688 1.074 79.828 17 .653 1.021 80.848 18 .601 .939 81.787 19 .592 .925 82.711 20 .557 .870 83.581 21 .542 .847 84.429 22 .521 .814 85.243 23 .502 .785 86.028 24 .482 .753 86.781 25 .455 .711 87.491 26 .440 .688 88.179 27 .423 .661 88.840 28 .414 .647 89.488 29 .391 .611 90.099 30 .370 .578 90.677 31 .350 .546 91.223 32 .326 .510 91.733 33 .325 .508 92.241 34 .304 .475 92.716 35 .300 .469 93.185 36 .297 .464 93.649 37 .284 .443 94.092 38 .263 .410 94.503 39 .244 .382 94.885 40 .240 .375 95.260 41 .232 .363 95.623 42 .223 .349 95.971 43 .205 .321 96.292 44 .198 .310 96.602

562 45 .192 .300 96.901 46 .184 .288 97.189 47 .167 .261 97.450 48 .152 .238 97.687 49 .148 .232 97.919 50 .139 .217 98.136 51 .136 .212 98.349 52 .122 .190 98.539 53 .119 .186 98.724 54 .104 .163 98.888 55 .099 .154 99.042 56 .093 .146 99.188 57 .088 .138 99.325 58 .087 .136 99.461 59 .075 .118 99.579 60 .070 .109 99.688 61 .064 .100 99.787 62 .054 .085 99.872 63 .045 .070 99.942 64 .037 .058 100.000

563 Table R- 8 Unrotated component matrix for Effects of Meditation on Everyday lifes scale with all items

Component 1 2 3 4 5 6 7 8 9 10 58 I am more self-confident .819 36 I am more adaptable or flexible .819 in new circumstances 54 I feel as if I am handling life .812 better 55 I generally feel more positive .799 about life 53 I experience more happiness .797 and joy in life 34 I cope better with stressful or - negative experiences and .794 .307 feelings 44 I am more compassionate and .787 empathic 60 I feel a sense of inner peace .768 and strength 52 I generally feel calmer and more - .768 centred .327 30 My state of mind is more .767 balanced 63 I am more able to trust my inner .765 nature and wisdom 17 I am generally more relaxed .763 23 I am able to think more clearly .762 33 I have a different way of coping and responding to what is going .757 on in life 57 I am less anxious .752 35 I am more able to appreciate and be positive about everyday .749 life 59 I am less depressed .746 15 I am more able to function .739 effectively in everyday life 49 I have less conflict with others .735 22 I have better mental focus and .735 .337 concentration 14 I am less affected by fears and .733 obsessive behaviour patterns 43 I feel closer to the people in my .731 life 21 I have less destructive .731 behaviour 27 I find it easier to make decisions .725 56 I am less quick to anger - .724 .324 39 I am more able to forgive myself .722 and others and move on 42 I am happier with my .722 relationships 25 I have better problems solving .718 .307 skills 37 I spend less time preoccupied .717 with the past or the future 46 I am less likely to act on my - .715 desires at the expense of others .349 28 I have a better understanding of - .712 .312 myself and others .332 51 I am less emotionally reactive .702 564 4 I cope better with pain or am .701 less influenced by pain 29 I am more aware of the effects - .699 of my behaviours .373 48 I make more effort to avoid - .698 causing suffering to others .374 3 I cope better with physical .697 .405 symptoms of stress 10 I feel a sense of physical .696 .325 wellbeing 38 I am more able to focus on what is happening in the present .690 moment (eg. jobs, tasks, driving) 67 I experience more fulfilment and - .687 meaning in life .424 62 I experience a sense of the .683 inter-connectedness of life 61 I experience a sense of calm .683 control over life and thoughts 31 I am more creative .679 .430 50 My family and friends have noticed that meditation has .675 benefited me 45 I am less judgemental of myself .671 .302 and others 18 I am less affected by strong - .668 desires or impulses .301 2 I experience fewer physical .668 .400 symptoms of stress 64 I have a greater awareness of - .664 personal responsibility .387 13 I am less affected by habits such as biting nails, teeth .663 .392 grinding etc 47 My social networks have .662 changed for the better 66 I have noticed a change in my - .656 values and vision of life .310 9 My sensory perception is better .655 .329 40 I am able to contact my inner .642 .381 stillness when I need to 8 I am more aware of body .639 sensations and responses 19 I have made healthy lifestyle .638 changes 12 I have better control over my .631 .412 eating habits 16 I am more organised and - .618 .343 efficient .357 7 I have more energy or vitality .588 .472 24 My memory is better .576 .404 .324 11 I suffer fewer illnesses or .562 .398 symptoms of illness 6 I cope better with tiredness .555 .493 26 I recognise that thoughts are just thoughts rather than .542 .483 accurate reflections of reality 5 I sleep better .482 .469 .321 68 I have had 'out of the ordinary' or 'mystical' experiences in daily .427 .334 .359 life 32 I have better dream recall .380 .330 .337 .371 .389

565 Table R- 9 Pattern matrix for Effects of Meditation in Everyday Life with Oblimin Rotation

Component 1 2 3 4 5 6 7 8 9 10 55 I generally feel more positive .600 about life 52 I generally feel calmer and more .572 centred 54 I feel as if I am handling life .543 better 53 I experience more happiness .537 and joy in life 35 I am more able to appreciate and be positive about everyday .520 life 60 I feel a sense of inner peace and .513 .405 strength 61 I experience a sense of calm .513 .334 control over life and thoughts 34 I cope better with stressful or negative experiences and .479 feelings 30 My state of mind is more .395 balanced 59 I am less depressed .343 58 I am more self-confident .310 5 I sleep better .838 7 I have more energy or vitality .735 11 I suffer fewer illnesses or .630 symptoms of illness 10 I feel a sense of physical .349 .537 wellbeing 6 I cope better with tiredness .527 12 I have better control over my .623 eating habits 14 I am less affected by fears and .614 obsessive behaviour patterns 13 I am less affected by habits such .610 as biting nails, teeth grinding etc 18 I am less affected by strong .575 .305 desires or impulses 21 I have less destructive .541 behaviour 19 I have made healthy lifestyle .357 changes 9 My sensory perception is better - .355 .324 .318 26 I recognise that thoughts are just thoughts rather than accurate .790 reflections of reality 45 I am less judgemental of myself .564 .360 and others 39 I am more able to forgive myself .517 and others and move on 28 I have a better understanding of - .500 myself and others .431 63 I am more able to trust my inner .397 nature and wisdom 33 I have a different way of coping and responding to what is going .344 .366 on in life 37 I spend less time preoccupied .358 with the past or the future 43 I feel closer to the people in my .308 life 566 68 I have had 'out of the ordinary' or 'mystical' experiences in daily .742 life 40 I am able to contact my inner .322 .302 .531 stillness when I need to 62 I experience a sense of the .495 inter-connectedness of life 16 I am more organised and .771 efficient 25 I have better problems solving .651 skills 23 I am able to think more clearly .602 24 My memory is better .300 .589 22 I have better mental focus and .330 .572 concentration 15 I am more able to function .538 effectively in everyday life 27 I find it easier to make decisions .349 .433 2 I experience fewer physical .781 symptoms of stress 3 I cope better with physical .725 symptoms of stress 4 I cope better with pain or am .300 .437 less influenced by pain 17 I am generally more relaxed .399 51 I am less emotionally reactive .459 56 I am less quick to anger .334 .444 42 I am happier with my .413 relationships 57 I am less anxious .373 44 I am more compassionate and .348 empathic 8 I am more aware of body - .306 sensations and responses .319 66 I have noticed a change in my -

values and vision of life .698 48 I make more effort to avoid -

causing suffering to others .697 64 I have a greater awareness of -

personal responsibility .680 29 I am more aware of the effects - .383 of my behaviours .567 46 I am less likely to act on my - .322 desires at the expense of others .508 47 My social networks have -

changed for the better .506 49 I have less conflict with others - .334 .506 67 I experience more fulfilment and - .369 .347 meaning in life .421 50 My family and friends have - noticed that meditation has .308 .342 benefited me 32 I have better dream recall .876 31 I am more creative .420 .452 38 I am more able to focus on what is happening in the present .308 .318 moment (eg. jobs, tasks, driving) 36 I am more adaptable or flexible

in new circumstances

567 Table R- 10 Structure matrix for Rotated Effects of Meditation in Everyday Life scale

Component 1 2 3 4 5 6 7 8 9 10 55 I generally feel more positive .802 .374 .388 .313 .359 .478 .469 .454 -.517 .502 about life 52 I generally feel calmer and more .777 .439 .355 .439 .507 .457 .368 -.421 .361 centred 54 I feel as if I am handling life .772 .373 .449 .354 .310 .531 .476 .528 -.483 .452 better 53 I experience more happiness .769 .495 .316 .359 .460 .510 .454 -.507 .495 and joy in life 60 I feel a sense of inner peace and .738 .438 .407 .401 .622 .449 .448 .343 -.375 .309 strength 34 I cope better with stressful or negative experiences and .730 .484 .553 .472 .610 .352 -.424 .433 feelings 35 I am more able to appreciate and be positive about everyday .723 .481 .500 .306 .333 .506 -.405 .496 life 61 experience a sense of calm .683 .467 .374 .378 .551 .357 .302 -.384 control over life and thoughts 30 My state of mind is more .663 .449 .587 .350 .556 .518 -.422 .346 balanced 58 I am more self-confident .637 .535 .376 .523 .364 .620 .495 .405 -.402 .459 59 I am less depressed .598 .408 .525 .378 .403 .515 .403 .357 -.415 .371 36 I am more adaptable or flexible .575 .351 .416 .499 .338 .503 .572 .506 -.522 .573 in new circumstances 5 I sleep better .842 .332 .365 7 I have more energy or vitality .830 .360 .307 .424 .351 .422 11 I suffer fewer illnesses or .387 .751 .405 .357 .311 .318 .379 symptoms of illness 10 I feel a sense of physical .588 .709 .349 .325 .432 .540 -.337 .343 wellbeing 6 I cope better with tiredness .702 .406 .310 .418 .472 .389 14 I am less affected by fears and .344 .429 .801 .511 .402 .476 .394 -.390 .316 obsessive behaviour patterns 13 I am less affected by habits such .490 .766 .322 .362 .394 -.395 .424 as biting nails, teeth grinding etc 12 I have better control over my .478 .760 .444 -.420 .396 eating habits 21 I have less destructive behaviour .354 .314 .743 .369 .321 .398 .512 .400 -.496 .441 18 I am less affected by strong .323 .347 .735 .344 .307 .549 .355 -.411 .318 desires or impulses 19 I have made healthy lifestyle .360 .509 .580 .333 .446 .471 -.414 changes 9 My sensory perception is better .408 .435 .575 .415 .454 .475 .550 26 I recognise that thoughts are just thoughts rather than accurate .302 .829 .307 .301 -.352 reflections of reality 28 I have a better understanding of .342 .514 .722 .319 .425 .401 -.664 .322 myself and others 45 I am less judgemental of myself .356 .397 .712 .431 .525 -.391 .367 and others 39 I am more able to forgive myself .436 .351 .469 .708 .343 .490 .443 -.454 .400 and others and move on 33 I have a different way of coping and responding to what is going .498 .618 .656 .323 .403 .450 -.570 .359 on in life 63 I am more able to trust my inner .456 .339 .406 .649 .544 .464 .454 -.535 .440 nature and wisdom 37 I spend less time preoccupied .496 .478 .418 .574 .341 .499 .399 -.358 .417 with the past or the future 568 43 I feel closer to the people in my .504 .461 .446 .541 .435 .420 .332 .399 -.390 .452 life 68 I have had 'out of the ordinary' or .770 .351 .306 'mystical' experiences in daily life 62 I experience a sense of the inter- .409 .432 .536 .687 .319 -.563 .464 connectedness of life 40 I am able to contact my inner .553 .393 .498 .684 .305 -.332 stillness when I need to 16 I am more organised and .412 .469 .839 .302 efficient 25 I have better problems solving .339 .478 .416 .333 .361 .816 .406 .318 -.339 .484 skills 23 I am able to think more clearly .588 .421 .393 .404 .802 .511 -.354 .439 22 I have better mental focus and .596 .444 .402 .357 .775 .540 .402 concentration 24 My memory is better .551 .729 -.303 .522 15 I am more able to function .555 .305 .507 .421 .725 .518 -.318 .307 effectively in everyday life 27 I find it easier to make decisions .360 .514 .558 .672 .478 -.420 .419 2 I experience fewer physical .381 .400 .341 .347 .352 .329 .867 -.369 .305 symptoms of stress 3 I cope better with physical .374 .427 .353 .346 .419 .449 .846 -.407 .313 symptoms of stress 17 I am generally more relaxed .577 .421 .439 .519 .347 .538 .679 -.359 4 I cope better with pain or am .326 .499 .585 .339 .352 .362 .660 .325 -.393 .364 less influenced by pain 38 I am more able to focus on what is happening in the present .423 .330 .311 .531 .439 .568 .309 -.357 .551 moment (eg. jobs, tasks, driving) 8 I am more aware of body .359 .494 .552 .488 .325 .556 -.328 .438 sensations and responses 51 I am less emotionally reactive .431 .465 .417 .547 .653 -.541 .392 56 I am less quick to anger .427 .301 .598 .419 .454 .368 .646 -.483 .388 42 I am happier with my .530 .326 .499 .454 .352 .406 .429 .596 -.340 .385 relationships 44 I am more compassionate and .502 .333 .497 .507 .458 .434 .457 .576 -.553 .375 empathic 57 I am less anxious .534 .369 .541 .469 .389 .560 .433 .561 .342 48 I make more effort to avoid .305 .302 .453 .423 .344 .313 .362 .415 -.841 .382 causing suffering to others 64 I have a greater awareness of .416 .450 .464 .345 -.816 .399 personal responsibility 66 I have noticed a change in my .493 .391 .313 .353 .408 -.796 values and vision of life 29 I am more aware of the effects of .327 .480 .641 .361 .492 -.743 .312 my behaviours 46 I am less likely to act on my .341 .436 .458 .341 .400 .558 -.734 .459 desires at the expense of others 49 I have less conflict with others .452 .320 .483 .362 .360 .375 .585 -.732 .458 47 My social networks have .355 .420 .349 .447 .405 .512 -.662 changed for the better 67 I experience more fulfilment and .591 .338 .304 .581 .415 .338 -.643 .466 meaning in life 50 My family and friends have noticed that meditation has .373 .381 .472 .319 .428 .358 .519 -.576 .303 benefited me 32 I have better dream recall .826 31 I am more creative .335 .334 .499 .625 .430 -.435 .675

569 Figure R- 1 PCOISS

PCOISS

15 Frequency

Mean = 70.0207 Std. Dev. = 11.34311 0 N = 193 40.00 50.00 60.00 70.00 80.00 90.00 PCOISS Total score

Figure R- 2 MAAS

MAASTotal

20 Frequency

Mean = 37.1192 Std. Dev. = 11.79739 0 N = 193 20.00 40.00 60.00 80.00 MAASTotal

570 Figure R- 3 Spiritual wellbeing

Spiritual wellbeing

15 Frequency 10

Mean = 30.2513 Std. Dev. = 7.12739 0 N = 191 10.00 15.00 20.00 25.00 30.00 35.00 40.00 Spiritual wellbeing Total

Figure R- 4 POMS-SF TMD

POMS-SF TMD Total

15 Frequency 10

Mean = 31.6524 Std. Dev. = 23.58813 0 N = 187 -20.00 0.00 20.00 40.00 60.00 80.00 100.00 120.00 POMS-SF TMD Total

571 Figure R- 5 POMS-SF Tension

Tension

15 Frequency

Mean = 10.6349 Std. Dev. = 5.36825 0 N = 189 0.00 5.00 10.00 15.00 20.00 25.00 Tension

Figure R- 6 POMS-SF- Depression

Depression

30 Frequency 20

Mean = 11.1064 Std. Dev. = 5.9606 0 N = 188 0.00 10.00 20.00 30.00 40.00 Depression

572 Figure R- 7 POMS-SF Anger

Anger

30 Frequency

Mean = 10.455 Std. Dev. = 5.56436 0 N = 189 0.00 5.00 10.00 15.00 20.00 25.00 30.00 Anger

Figure R- 8 POMS-SF Vigor

Vigor

15 Frequency

Mean = 19.5979 Std. Dev. = 5.17227 0 N = 189 5.00 10.00 15.00 20.00 25.00 30.00 Vigor

573 Figure R- 9 POMS-SF Fatigue

Fatigue

15 Frequency

Mean = 10.8085 Std. Dev. = 5.19929 0 N = 188 0.00 5.00 10.00 15.00 20.00 25.00 Fatigue

Figure R- 10 POMS-SF Confusion

Confusion

15 Frequency

Mean = 8.0529 Std. Dev. = 4.00231 0 N = 189 0.00 5.00 10.00 15.00 20.00 Confusion

574 Figure R- 11 Symptoms Checklist

SCL

20 Frequency

Mean = 25.00 Std. Dev. = 7.04552 0 N = 184 10.00 20.00 30.00 40.00 50.00 SCL

Figure R- 12 EDM-Cognitive Effects

EDM-Cognitive effects

15 Frequency 10

Mean = 34.1781 Std. Dev. = 7.43845 0 N = 219 10.00 20.00 30.00 40.00 50.00 EDM-Cognitive effects

575 Figure R- 13 EDM-Emotional Effects

EDM-Emotional effects

20 Frequency

Mean = 14.8493 Std. Dev. = 5.99772 0 N = 219 5.00 10.00 15.00 20.00 25.00 30.00 35.00 EDM-Emotional effects

Figure R- 14 EDM-Mystical experiences

EDM-Mystical experiences

20 Frequency

Mean = 13.1567 Std. Dev. = 6.34161 0 N = 217 5.00 10.00 15.00 20.00 25.00 30.00 EDM-Mystical experiences

576 Figure R- 15 EDM-Relaxation

EDM-Relaxation

30 Frequency 20

Mean = 18.0905 Std. Dev. = 5.08163 0 N = 232 5.00 10.00 15.00 20.00 25.00 30.00 EDM-Relaxation

Figure R- 16 EDM-Physical discomfort

EDM-Physical discomfort

20 Frequency

Mean = 14.2681 Std. Dev. = 5.37806 0 N = 235 5.00 10.00 15.00 20.00 25.00 30.00 EDM-Physical discomfort

577

Appendix S: Final Effects of Meditation scale (Study 2)

578 During meditation The questions in this section aim to explore your experiences during meditation. Using the 1-6 scale below, please indicate how frequently or infrequently you have each experience. Please answer according to what really reflects your experience rather than what you think your experience should be. Please treat each item separately from every other item. 1 2 3 4 5 6 Almost never Almost always

1 My perceptions are clearer 1 2 3 4 5 6 2 I am able to let my thoughts go and not get caught up in them 1 2 3 4 5 6 3 I observe my thoughts as an impartial observer 1 2 3 4 5 6 4 I observe without judgement any negative thoughts or emotions 1 2 3 4 5 6 that arise 5 I observe without judgement any positive thoughts or emotions 1 2 3 4 5 6 that arise 6 I accept my meditation practice however it is going 1 2 3 4 5 6 7 My mind is alert but still 1 2 3 4 5 6 8 I experience feelings of gratitude and contentment 1 2 3 4 5 6 9 I have thoughts or memories which bring an emotional response 1 2 3 4 5 6 10 I experience intense emotions 1 2 3 4 5 6 11 I experience fluctuating emotions 1 2 3 4 5 6 12 I experience feelings of sadness and depression 1 2 3 4 5 6 13 I experience feelings of anger 1 2 3 4 5 6 14 I experience feelings of tension and anxiety 1 2 3 4 5 6 15 I have what I describe as a mystical experience 1 2 3 4 5 6 16 I have an experience of contact with a higher power 1 2 3 4 5 6 17 I feel a sense of awe and wonder 1 2 3 4 5 6 18 I experience what are sometimes described as 'psychic 1 2 3 4 5 6 phenomena' 19 I have a new awareness of order in the universe 1 2 3 4 5 6 20 My body becomes heavy 1 2 3 4 5 6 21 My body becomes soft and loose 1 2 3 4 5 6 22 My body awareness changes - as if parts of it were 'missing' or 1 2 3 4 5 6 expanding in size or becoming distorted 23 I feel my heart rate slow down 1 2 3 4 5 6 24 I feel my breathing slow down 1 2 3 4 5 6 25 I feel restlessness or twitching of parts of my body 1 2 3 4 5 6 26 I am aware of physical discomfort 1 2 3 4 5 6 27 I feel the desire to cough, sneeze, scratch or swallow 1 2 3 4 5 6 28 I become aware of tightness in parts of my body 1 2 3 4 5 6 29 I feel the desire to smile or laugh 1 2 3 4 5 6

579 Everyday life The questions in this section aim to explore the effects of meditation on everyday life. Shown below are some of the benefits meditators have reported in their everyday lives. Please indicate which of these are true for you.

1 2 3 4 5 6 Not true for me True for me

1 I feel as if I am handling life better 1 2 3 4 5 6 2 I am more adaptable or flexible in new circumstances 1 2 3 4 5 6 3 I am more self-confident 1 2 3 4 5 6 4 I generally feel more positive about life 1 2 3 4 5 6 5 I experience more happiness and joy in life 1 2 3 4 5 6 6 I cope better with stressful or negative experiences and 1 2 3 4 5 6 feelings 7 I am more compassionate and empathic 1 2 3 4 5 6 8 My state of mind is more balanced 1 2 3 4 5 6 9 I generally feel calmer and more centred 1 2 3 4 5 6 10 I feel a sense of inner peace and strength 1 2 3 4 5 6 11 I am generally more relaxed 1 2 3 4 5 6 12 I am more able to trust my inner nature and wisdom 1 2 3 4 5 6 13 I am able to think more clearly 1 2 3 4 5 6 14 I am less anxious 1 2 3 4 5 6 15 I am less depressed 1 2 3 4 5 6 16 I have less conflict with others 1 2 3 4 5 6 17 I have better mental focus and concentration 1 2 3 4 5 6 18 I am more able to forgive myself and others and move on 1 2 3 4 5 6 19 I am less affected by fears and obsessive behaviour patterns 1 2 3 4 5 6 20 I have less destructive behaviour 1 2 3 4 5 6 21 I am more aware of the effects of my behaviours 1 2 3 4 5 6 22 I spend less time preoccupied with the past or the future 1 2 3 4 5 6 23 I am less emotionally reactive 1 2 3 4 5 6 24 I cope better with physical symptoms of stress 1 2 3 4 5 6 25 I am more able to focus on what is happening in the present 1 2 3 4 5 6 moment (eg. jobs, tasks, driving) 26 I experience more fulfilment and meaning in life 1 2 3 4 5 6 27 I experience a sense of the inter-connectedness of life 1 2 3 4 5 6 28 I am less judgemental of myself and others 1 2 3 4 5 6 29 My family and friends have noticed that meditation has 1 2 3 4 5 6 benefited me 30 I am less affected by strong desires or impulses 1 2 3 4 5 6

580