A Study of the Relationships Between Perceived Pain, Social Support, Coping and Quality of Life in Patients with Advanced Cancer by Shelagh Wright, BA (Mod), RGN, RM
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A Study of the Relationships between Perceived Pain, Social Support, Coping and Quality of Life in Patients with Advanced Cancer by Shelagh Wright, BA (Mod), RGN, RM. Thesis submitted to National University of Ireland for the Degree of Ph.D. Director of Research: Professor Martin McHugh Supervisor: Mr. James McLoone The Department of Psychology, National University of Ireland, Galway. September, 1999 TABLE OF CONTENTS ACKNOWLEDGEMENTS page xiii ABSTRACT page XV FOREWORD page xvi CHAPTER 1: INTRODUCTION page 1 Psychological reactions to the diagnosis of cancer page 1 The experience of cancer pain page 2 Fundamentals of palliative care page 3 Recognising and alleviating psychological distress in patients with cancer page 6 Social support page 10 Summary page 12 CHAPTER 2: PAIN AND THE PERCEPTION OF PAIN IN THE CONTEXT OF CANCER page 13 The extent of the problem page 13 The experience of pain page 17 Theories of pain page 23 The physiology of pain page 26 Cancer pain page 28 Pain syndromes associated with cancer therapy page 33 Metastatic bone disease: causation and treatment page 33 The use of analgesia for the relief of cancer pain page 35 The psychobiology of pain page 39 The effects of cancer pain page 41 Cancer pain in the elderly page 46 Summary page 47 i QoL and sense of control page 130 The measurement of quality of life page 131 Social support and quality of life page 137 QoL and terminal care page 138 Applying QoL issues to caregivers page 141 Summary page 142 CHAPTER 6: LIFESPAN, SOCIOECONOMIC STATUS AND CANCER page 144 Stages of adulthood and cancer page 144 Cancer and SES page 146 SES and mortality page 148 Lifespan and QoL page 150 Summary page 153 CHAPTER 7: RATIONALE FOR THE SELECTION OF INSTRUMENTS TO MEASURE PERCEIVED PAIN, SOCIAL SUPPORT, PSYCHOLOGICAL DISTRESS, COPING AND QUALITY OF LIFE IN PATIENTS WITH ADVANCED CANCER page 154 Rationale for the study page 154 The measurement of pain page 156 The measurement of psychological distress and perceived loss page 162 The measurement of coping in the context of cancer page 170 The measurement of social support page 172 Summary page 174 Summary of scales selected for the study page 176 CHAPTER 8: METHODOLOGY page 177 CHAPTER 9: RESULTS page 187 iii DESCRIPTIVE STATISTICS page 187 RESULTS RELATING TO HYPOTHESES page 208 RESULTS RELATING TO QUALITATIVE ANALYSIS page 246 RESULTS RELATED TO REGRESSION ANALYSIS page 252 CHAPTER 10: DISCUSSION page 261 Hypotheses supported by study findings page 261 Hypotheses not supported by study findings page 279 Incidental findings page 281 Strengths and limitations of the research page 283 Recommendations for future research page 286 Recommendations for policy and practice page 287 SUMMARY page 296 REFERENCES page 299 APPENDIX i page 355 APPENDIX ii page 363 APPENDIX iii page 380 APPENDIX iv page 422 List of Hypotheses Hypothesis la. Average pain intensity is positively associated with received support within the social networks o f patients with advanced cancer. page 208 Hypotheses lb and 1c. Average pain intensity is positively associated with psychological distress and perceived loss in patients with advanced cancer. page 209 Hypothesis Id. Average pain intensity is positively associated with coping deficit in patients with advanced cancer. page 210 Hypothesis le. Average pain intensity is negatively associated with perceived support within the social networks o f patients with advanced cancer. page 211 iv Hypothesis 2a. Average pain intensity rated as moderate to high is positively associated with received support within the social networks o f patients with advanced cancer. page Hypotheses 2b and 2c. Average pain intensity rated as moderate to high is positively associated with psychological distress and perceived loss in patients with advanced cancer. page Hypothesis 2d Average pain intensity rated as moderate to high is positively associated with coping deficit in patients with advanced cancer. page Hypothesis 2e. Average pain intensity rated as moderate to high is negatively associated with perceived support within the social networks o f patients with advanced cancer. page Hypothesis 3a. Present pain intensity is positively associated with received support within the social networks o f patients with advanced cancer. page Hypotheses 3b and 3c. Present pain intensity is positively associated with psychological distress and perceived loss in patients with advanced cancer. page Hypothesis 3d. Present pain intensity is positively associated with coping deficit in patients with advanced cancer. page Hypothesis 3e. Present pain intensity is negatively associated with perceived support within the social networks of patients with advanced cancer. page Hypothesis 4a. Overall evaluated pain experience is positively associated with received support within the social networks of patients with advanced cancer page Hypotheses 4b and 4c. Overall evaluated pain experience is positively associated with psychological distress and perceived loss in patients with advanced cancer. page Hypothesis 4d. Overall evaluated pain experience is positively associated with coping deficit in patients with advanced cancer. page Hypothesis 4e. Overall evaluated pain experience is negatively associated with perceived support within the social networks of patients with advanced cancer. page Hypothesis 5a. Within the over-59-years old group, the older patients are, the more likely they will be to receive insufficient support from their social networks. page Hypothesis 5b. Within the over-59-years old group, the older patients are, the more likely they will be to perceive a support deficit from their social networks. page 225 Hypotheses Sc and 5d. Within the over-59-years old group, the older patients are, the more likely they will be to experience psychological distress, and to perceive loss. page 226 Hypothesis 5e. Within the over-59-years old group, the older patients are, the more likely they will be to report a coping deficit. page 227 Hypothesis Sf. Within the over-59-years old group, the older patients are, the more likely they will be to report that they suppress emotions. page 228 Hypothesis 6a. Within the under-60-year old group the younger patients are, the more likely they will be to receive insufficient support from their social networks. page 229 Hypothesis 6b. Within the under-60-year old group, the younger patients are, the more likely they will be to perceive a support deficit from their social networks. page 230 Hypotheses 6c and 6d. Within the under-60-years old group, the younger patients are, the more likely they will be to experience psychological distress and to perceive loss. page 231 Hypothesis 6e. Within the under-60-years old group, the younger patients are, the more likely they will be to report a coping deficit. Page 232 Hypothesis 6f. Within the under-60-years old group, the younger patients are, the more likely they will be to report that they do not suppress emotions. Page 233 Hypothesis 7a. Gender will influence the provision of social support for patients with advanced cancer. Page 234 Hypothesis 7b. Gender will influence the perception of social support for patients with advanced cancer. Page 235 Hypotheses 7c and 7d. The gender of patients with advanced cancer will influence their experience o f psychological distress and their perception o f loss. Pa8e 236 Hypothesis 7e. The gender of patients with advanced cancer will influence their coping attitudes. Pa8e 237 Hypothesis 7f. Gender will influence the control o f emotion in patients with advanced cancer. PaSe 238 vi Hypothesis 8a. Satisfaction with overall support given by their family is associated with the use o f positive coping mechanisms by patients with advanced cancer. page Hypothesis 8b. Satisfaction with overall support given by their friend(s) is associated with the use o f positive coping mechanisms by patients with advanced cancer. page Hypothesis 8c. Satisfaction with overall support given by their health care professionals) is associated with the use o f positive coping mechanisms by patients with advanced cancer. page Hypothesis 9a. Satisfaction with overall support given by their family is negatively associated with (i) psychological distress and (ii) perceived loss in patients with advanced cancer. page Hypothesis 9b. Satisfaction with overall support given by their friend(s) is negatively associated with (i) psychological distress and (ii) perceived loss in patients with advanced cancer. page Hypothesis 9c. Satisfaction with overall support given by their health care professionals) (HCPs) is negatively associated with (i) psychological distress and (ii) perceived loss in patients with advanced cancer. page LIST OF FIGURES Figure 1. Age in years of study participants page Figure 2. Distribution of sample of study participants by age and gender page Figure 3. Relative incidence of primary diagnoses of study participants as specified in their medical case notes page Figure 4. Percentages of male and female participants in the various categories of overall evaluated pain experience page LIST OF TABLES Table 1. Percentages of participants in different age ranges page Table 2. Measures of central tendency and dispersion of age of study participants page Table 3. Education level of participants page Table 4. Socio-economic class of participants page 190 Table 5. Marital status of participants page 191 Table 6. Religious affiliation of participants page 191 Table 7. Place of residence of participants page 191 Table 8. Length of time since study participants learned of their diagnosis page 192 Table 9. Primary diagnoses of study participants page 192 Table 10. Age of study participants cross-tabulated with their cancer diagnoses page 194 Table 11. Percentage of study participants who had undergone surgery in the past year page 195 Table 12. Percentage of study participants who were receiving chemotherapy or radiotherapy at the time of the study page 195 Table 13. Levels of present pain experienced by participants page 196 Table 14. Levels of average pain experienced by participants page 196 Table 15.