POSITIVE PSYCHOLOGICAL CHANGE IN PEOPLE WITH RHEUMATOID ARTHRITIS Fatemeh Sani Pour School of Health Sciences University of Salford, Salford, UK Submitted in Partial Fulfilment of the Requirements of the Degree of Doctor of Philosophy December 2016 Table of contents ii Content list v Appendices vi List of tables vii List of graphs viii Acknowledgements ix Declaration x Publications and Conference proceedings xi Abstract Chapter One 1 1. Introduction 3 1.1. Literature Review 25 1.2. What is Rheumatoid Arthritis? 34 1.3. Demographic characteristics of people with Rheumatoid Arthritis 1.4. Investigating Positive Psychological Change in people with Rheumatoid 40 Arthritis 1.5. Measurement of Positive Psychological Change 51 1.6. The key theoretical concepts in building a model 57 1.7. The application to study Positive Psychological Change in Rheumatoid 59 Arthritis 1.8. The study rationale 63 1.9. Survey study 67 1.10. Hypotheses 69 1.11. Chapter summary 72 Chapter Two: Method 74 2. Method 74 2.1. Introduction 74 2.2. Design 75 2.3. Survey administration 76 2.4. Participants 76 2.5. Sample size 77 2.6. Measurements 83 2.7. Procedure 86 2.8. Ethics 87 2.9. Silver Lining Questionnaire-38 scoring system 88 2.10. Chapter summary ii Chapter three: Results 89 3.1. Introduction 90 3.2. Recruitment and Participants 90 3.3. Response rate and numbers excluded 93 3.4. Questionnaire quality criteria: inclusion and exclusion 94 3.5. Data analysis 95 3.6. Aim one: The extent of Positive Psychological Change 3.7. Aim two: Characteristics of those people who have reported Positive 106 Psychological Change 3.8. Aim three: Positive Psychological Change and associated factors 111 3.9. Aim four: Explore Predictors of Positive Psychological Change 119 3.10. Chapter summary 123 Chapter four: Discussion and conclusion 4.1. Introduction 124 4.2. Aim one: The extent of Positive Psychological Change in people 126 living with Rheumatoid Arthritis in the UK 4.3. Aim two: Demographic Characteristics of people with Rheumatoid 143 Arthritis who have reported Positive Psychological Change 4.4. Aim three: Factors associated with Positive Psychological Change 148 4.5. Aim four: Predictors of Positive Psychological Change in people with 1 6 5 Rheumatoid Arthritis 4.6. Proposed Bio-psycho-social model 167 4.7. The thesis contributions 172 4.8. Limitations 181 4.9. Future research and applications 182 4.10. Conclusions 186 References List 189 iv Appendices 211 Appendix 1.1. Psychometric properties of the study measurements (Includes tables 1.5. & 1.6.) 220 Appendix 2.1. Ethical approval 221 Appendix 2.2. Organization letter 222 Appendix 2.3. National Rheumatoid Arthritis Society advert 223 Appendix 2.4. Introductory letter 225 Appendix 2.5. Cover letter 226 Appendix 2.6. Study information sheet 230 Appendix 2.7. Research participant consent form 233 Appendix 2.8. Reply form 234 Appendix 2.9. Risk assessment of projects 237 Appendix 2.10. Research protocol 256 Appendix 2.11. Ineligible participants 257 Appendix 2.12. Reminder 258 Appendix 2.13. Measurements 303 Appendix.3.1. Study flowchart 304 Appendix.3.2. Descriptive statistics 305 Appendix.3.3. Correlation matrix 306 Appendix.3.4. Stepwise regression analysis v List of tables 33 Table 1.1. Most common medications used for Rheumatoid Arthritis 44 Table 1.2. Summary of key features of self-management studies in patients with Rheumatoid Arthritis with positive outcomes 46 Table 1.3. Outcome measures assessed in clinical trials of self-management interventions in Rheumatoid Arthritis 48 Table 1.4. Description of quantitative studies investigating positive change (Benefit finding &/Posttraumatic Growth) in RA 78 Table 2.1. Survey study questionnaires 92 Table 3.1. Demographic characteristics of the study participants (N=210) 93 Table 3.2. Questionnaire inclusion/exclusion criteria 99 Table 3.3. Frequencies, percentage and mean scores per items for Positive responses* Table 3.4. Differences between people scoring below and over the mean on SLQ-38 and the variables on the study, N=210* 101 Table 3.5. Proportion of items answered positively* 101 Table 3.6. Distribution of items scored positively for those scores over one SD 102 on SLQ-38, N=81* Table 3.7. Positive themes on SLQ-38 in Rheumatoid Arthritis* 103 Table 3.8. Comparisons of the prevalence of positivity themes on SLQ-38 106 Table 3.9. Mean differences of study variables on the Silver Lining 110 Questionnaire-38, N=210 Table 3.10.The most frequently coping strategy used by people with Rheumatoid 113 Arthritis Table 3.11. Relationship between the SLQ-38 and coping strategies components 114 Table 3.12. Correlation coefficient of the factors associated with the total 117 scores of the SLQ-38 (N=210) Table 3.13. Positive Psychological Change Model Summary 121 Table 3.14. Positive Psychological Change predictor variables 121 Table 3.15. Bootstrapping the confidence intervals 122 vi Graphs 97 3.1. Silver Lining Questionnaire 168 4.1. Positive Psychological Change: Biopsychosocial model vii Acknowledgements First and foremost, I would like to thank my supervisors Dr. Peter Eachus, Dr. Linda Dubrow- Marshall and Prof. Alison Hammond for their endless love, support, and guidance through all stages of my research. I appreciate all the contributions and ideas they gave me, which helped to make my PhD experience productive. It has been an honour to be one of their students. I would like to extend a heartfelt thank you to all volunteers with RA in the University’s Rehabilitation Research Group’s Arthritis Research Panel and those individuals with RA in the National Rheumatoid Arthritis Society who took part in my research. Without them, this research would not have been possible. Their collaborations have helped and inspired me to be a better psychologist. I would like to extend my appreciation to all the Faculty members in the Department of Psychology and technical staff in the university. My experience at Salford University has enriched me not only academically, but also from a human standpoint. I met brilliant people who supported me in my professional and personal life. They are always helpful and supportive. I would like to thank my dear sister, Teresa Wild, for her never-ending support, love, and patience (and many hours of proof-reading). Without her, I would not have made it this far. Last, but not least, I want to thank from the bottom of my heart my family: my dad and mum, sisters and brothers, for always supporting, encouraging and believing in me no matter what I do. I owe a million thanks to my fantastic father, who has been always with me through both ups and downs and who brought light in to my dark days; by being a great model and an example of open minded honesty in my life. I have no words to adequately thank him for his support, understanding and love. My thanks also go toward my special friends who are always by my side for supporting and taking care of me. Without support from those aforementioned and many others whose names may not be listed here, the completion of this work would not be possible. Thank you all so much. Fatemeh viii Declaration I declare that this PhD thesis has been composed by myself and embodies the results of my own course of study and research whilst studying at The University of Salford from April 2013 to November 2016. All sources and material have been acknowledged. ix Publication and Conference proceedings The following paper related to this thesis has been published: Harding, S., Sanipour, F. & Moss, T. (2014). Existence of benefit finding and posttraumatic growth in people treated for head and neck cancer: a systematic review. PeerJ 2:e256 https://doi.org/10.7717/peerj.256 Presentations at Conferences: The following conferences were attended at which aspects of the thesis were presented. Work was also presented at the National Rheumatoid Arthritis Society Group in Oldham to individuals with Rheumatoid Arthritis and to health professionals at the University of Salford, including physiotherapists. The following presentations were made at such conferences: Sani Pour, F. (2016). Positive Psychological Change in people with Rheumatoid Arthritis. Paper presented at the SPARC 2016 Salford Postgraduate Annual Research Conference (pp.73). University of Salford, UK. http://usir.salford.ac.uk/39314/1/2016SPARCabstracts.pdf Sani Pour, F. (2016). Positive Psychological Change in people with Rheumatoid Arthritis. Paper presented at the PsyPAG Annual Conference 2016 Well-Being Symposium at University of York, UK. https://psypag2016.wordpress.com/programme-abstracts/ x Abstract Most research on patients with chronic medical conditions, including Rheumatoid Arthritis (RA) have focussed on the negative impact of living with these conditions. More recent research has highlighted that some people experience Positive Psychological Change (PPC) in response to traumatic or adverse events or conditions, but very few studies have looked at PPC in relation to people with RA. The aim of this study was to investigate if people with RA experience PPC and to explore the psychosocial, physical and demographic factors associated with its occurrence. A survey study was conducted to investigate the likelihood and extent of PPC, and the psychosocial, physical and demographic factors that are associated with and which may influence the development of PPC within this population. This study is based on a sample of British individuals with RA who were recruited from the University of Salford Rehabilitation Research Group’s Arthritis Research Panel and from the National Rheumatoid Arthritis Society. The data was collected using a pack of eight reliable and valid questionnaires that were mailed to the eligible individuals. Out of 338 invitation packs 228 (67%) questionnaires were returned and completed of which 210 were screened to comprise the final sample. The mean participant age was 62, they were mostly female, (79%) and the majority had the disease for more than 10 years (53.3%). The Silver Lining Questionnaire (SLQ-38) was used as the criterion for PPC and the mean score was 95.09 (SD ± 26.09). In this sample SLQ scores were distributed normally. The criterion for the occurrence of PPC was set at one SD over the SLQ mean (121). Nearly 34% of the current participants reported PPC, and the higher scores were associated with: age; disease duration; psychological well-being; coping strategy; lower fatigue, social support and sense of coherence and resilience. The findings reveal that distancing was the most favourably used coping strategy however, the PPC positively correlated with the cognitive reframing subscale. Implications of this study for the application of psychological principles in Rheumatology services were examined. Limitations of the research along with further direction for the future studies were discussed. xi
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