(CFS) on the Lives of Young People. Melinda Williams-Wilson
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“I had to give up so, so much” A Narrative Study to Investigate the Impact of Chronic Fatigue Syndrome (CFS) on the Lives of Young People. Melinda Williams-Wilson A thesis submitted in partial fulfilment of the requirements of Bournemouth University for the degree of Doctor of Philosophy July 2009 Copyright Statement This copy of the thesis has been supplied on condition that anyone who consults it is understood to recognise that its copyright rests with its author and due acknowledgement must always be made of the use of any material contained in, or derived from, this thesis. 2 Abstract Melinda Williams-Wilson “I had to give up so, so much” A Narrative Study to Investigate the Impact of Chronic Fatigue Syndrome (CFS) on the Lives of Young People. The aim of this research was to explore the experiences of Chronic Fatigue Syndrome among a small group of adolescents, through three research questions: What are the personal experiences of young people with CFS – how does the condition affect their daily lives – including educational, social and psychological perspectives. Secondly, how does CFS impact family life – how does the condition influence not only the lives of sufferers but also those closest to them? Finally, can the knowledge base be deepened to help guide practice for those caring for the needs of adolescent CFS sufferers and their families? The study used a narrative approach in an attempt to capture young people‘s stories, and to provide a window of insight into the personal impacts of CFS on the lives of individuals. Open-ended interviews with eight young CFS sufferers (11 to 18 year olds) were employed that explored personal experiences of CFS. In addition four email interviews were conducted with primary caregivers to explore the impacts of CFS from a carers perspective. Five themes arose from a generic qualitative analysis of data - adolescent CFS is experienced as: (1) having to adapt to debilitating physical symptoms; (2) living with changes in family relationships and loved one‟s life experiences; (3) living with isolation and a disruption to a full and satisfying teenage life; and (4) feeling misunderstood and judged. Also a fifth and universal overarching theme, that CFS in adolescents is experienced as having to put life on hold. This is a major life adjustment, not only for the individual sufferers but for their family members also, who have to adapt to a new way of life accommodating for the limitations of one member. 3 The implications for clinical practice and further research are discussed. 4 Contents Page Title Page 1 Copyright Statement 2 Abstract 3 List of Contents 5 List of Tables 14 Preface 16 Acknowledgements 19 Author‘s Declaration 20 Abbreviations 21 Chapter 1: Introduction and General Review of the CFS Literature – What is Chronic Fatigue Syndrome? 22 1.1 Introduction 22 1.2 History and Nomenclature 22 1.2.1 Definitions of CFS 24 1.3 Prevalence and Incidence Rates 28 1.3.1 Socio-Economic Class 30 1.4 Presentation: Medical Perspective 31 1.5 Economic Impact of CFS in adults 31 1.6 Characteristics 32 1.6.1 Investigations 33 1.7 Possible Disease Mechanisms 33 1.8 Understanding the Nature of CFS 34 1.8.1 Predisposing Factors 34 1.8.2 Precipitating Factors 35 1.8.3 Perpetuating Factors 36 1.9 Other Areas of Research Exploring Cause and Treatments of CFS 38 5 1.9.1 Hyperventilation 38 1.9.2 MRI 39 1.9.3 Tilt Table 39 1.9.4 Gene Expression 40 1.9.5 Muscular 40 1.9.6 Allergy/Immune System 41 1.9.7 Enteroviral 42 1.9.8 Circadian Rhythm Alterations 43 1.9.9 Neurological and Cognitive 43 1.10 Is CFS a Somatisation Disorder? 44 1.11 Medical Management 45 1.11.1 Cognitive Behavioural Therapy (CBT) 46 1.11.2 Graded Exercise Therapy (GET) 47 1.12 Prognosis 48 1.12.1 Outcome Predictors 50 1.13 Severely Affected 50 1.14 Comparing CFS and Other Fatiguing Illnesses 51 1.15 Specialist CFS Centres of Expertise 52 1.16 Why CFS Remains a Controversial Condition 53 1.16.1 The Controversy of CFS and My Own Stance 56 1.17 My Research Objectives 57 Chapter 2: CFS in Young People: Grounding the Focus of the Study and Reviewing the Literature within the Paediatric Domain 58 2.1 Introduction 58 2.2 Incidence and Prevalence, Demographics and Prognosis 58 2.3 Clinical Features and Symptoms 62 2.4 Diagnosis and Course of Illness 63 2.4.1 Diagnostic Criteria 63 2.4.2 CFS Diagnoses in Young People and Children 64 2.4.3 Diagnosis 65 2.4.4 Course of Illness and Outcomes 66 2.5 Medical Management/Treatment of CFS in Children 69 6 2.5.1 CBT and GET 71 2.5.2 Pharmacological Interventions 72 2.5.3 Psychology and Psychiatry 73 2.5.4 Physiotherapy and Occupational Therapy 73 2.5.5 General Practice 73 2.5.6 Management of Severe and Very Severe Paediatric Patients Using Clinical Guidelines 73 2.6 Psychosocial Issues in Relation to Adolescence 74 2.7 Specialist Care and Interventions 77 2.8 Transition to Adult Services 77 2.9 School Issues 78 2.10 Other Medical Issues Covered in the Paediatric CFS Literature 80 2.10.1 Orthostatic Intolerance 80 2.10.2 Neuroendocrinology and Neurology 80 2.10.3 Nephrology and Immunology 80 2.10.4 Sleep disorders 81 2.10.5 Infectious Agents 81 2.10.6 Genetics 82 2.11 Comparing Paediatric CFS with other Fatiguing Illnesses 82 2.12 Conclusion: What This All Means 83 Chapter 3: The Rationale for a Narrative Study 85 3.1 Introduction 85 3.2 Narrative Research in Children/Adolescence 85 3.2.1 The Far-Reaching Consequences of Illness at Sensitive Periods of Development 85 3.3 Narrative Research about Adults with CFS and FM 87 3.3.1 The „Realness‟ of CFS 87 3.3.2 Different Narrative Typologies 89 3.4 Existing Narrative Study of CFS in Adolescents 91 3.5 Conclusion 92 Chapter 4: Adolescence 93 7 4.1 Introduction 93 4.2 Puberty 96 4.3 Adolescence and Sexuality 97 4.4 Adolescence and Culture 99 4.5 Adolescence and Psychological Theories 100 4.5.1 Adolescence and Psychological Ill-Health 106 4.6 Adolescence and Family Relationships 106 4.6.1 Adolescence and Mental Health 107 4.6.2 Adolescence and Loss of Parent Relationships 109 4.6.3 Adolescence and Divorce 110 4.6.4 Adolescence and Influence of Extended Families 111 4.7 Social/Sociological Aspects of Adolescence 112 4.7.1 Adolescence and Positive Peer Relationships 116 4.7.2 Adolescence and Peer Pressure 116 4.8 Adolescence and Media and Technological Influences 117 4.8.1 Negative Impact of New Technology and the Mass Media 121 4.8.2 Adolescence and the „Perfect Body„ 122 4.8.3 Adolescence and Media Violence Linked to Viewer‟s Reactions 123 4.8.4 Positive Impact of New Technology and the Mass Media 124 4.9 Adolescence and General Health Related Behaviour 124 4.10 Conclusion 127 4.11 What This Means 127 Chapter 5: Methodology 129 5.1 Introduction 129 5.2 What is Narrative Research? 129 5.2.1 The Narrative Interview Process 130 5.2.2 Narrative as a Form of Research Has Become Increasingly Popular 132 5.2.3 Narrative Study is Different to Other Types of Qualitative Research 134 5.2.4 Types of Narrative 135 8 5.2.5 Common Elements of Narratives 137 5.2.6 Key Elements of Narratives 139 5.2.7 Identity Construction 140 5.2.8 Performance in Narratives 143 5.2.9 Context and Culture 145 5.2.10 Illness Narratives 146 5.2.11 Illness Narratives and Culture 149 5.2.12 Analysis of Narratives - Subjectivity as a Positive 150 5.2.13 Remaining True to the Story 152 5.2.14 The Evolution of Narratives 153 5.2.15 Analysis of the „hows‟ of Narratives 154 5.2.16 Factual Accounts? 154 5.2.17 Thematic analysis 155 5.2.18 Links Between Analysis and Interpretation 157 5.3 The Use of Narrative Methods for My Study 158 5.4 Aims 159 5.5 Research Questions 159 5.6 Rationale 160 5.7 Significance of Proposed Research 161 5.8 Approach, Procedures and Process 162 5.8.1 Summary of the Data Collection Process 162 5.8.2 The Sample 163 5.8.3 Extending the Sample 164 5.8.4 The Interview Process 165 5.8.5 Concluding Thoughts about Data Collection Linked to Narrative Interviews 167 5.8.6 Additional Data Collection 168 5.8.7 Email Interviewing 168 5.8.8 Building a Relationship in E-Interviewing 169 5.8.9 Advantages of Email Interviewing 170 5.8.10 Concluding Thoughts about Data Collection through Email Interviews 171 5.8.11 Data Sources 173 5.8.12 Analysis of the Data 173 9 5.9 Limitations of the Methodology 175 5.9.1 Inclusion and Exclusion Criterion 175 5.9.2 Sampling 175 5.9.3 Being an „Insider Researcher„ 176 5.9.4 Disadvantages of Email Interviewing and Possible Solutions 176 5.10 Ethical Issues 179 5.10.1 Ethical Aspects of the Researcher‟s Experience 181 5.10.2 Informed Consent 182 5.11 Relationship Between Researcher and Participants 185 5.11.1 Building a Relationship 185 5.11.2 Difficulties within the Relationship 186 5.12 Conclusion and What This Means 186 Chapter 6: Findings and Discussion 188 6.1 Introduction 188 6.2 „Amy„ 189 6.2.1 Pen Portrait 189 6.2.2 Amy‟s Story: Adolescent CFS is..