How Do Illness Perceptions Influence the Effectiveness of Self- Management in Individuals Living in Bermuda with Type 2 Diabetes (T2D)
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HOW DO ILLNESS PERCEPTIONS INFLUENCE THE EFFECTIVENESS OF SELF-MANAGEMENT IN INDIVIDUALS LIVING IN BERMUDA WITH TYPE 2 DIABETES? TAMEISHA N. MATTHEW A thesis submitted in partial fulfilment of the requirements of the University of the West of England, Bristol for the degree of Professional Doctorate in Health Psychology Department of Psychology, Health and Applied Sciences, University of the West of England, Bristol Updated July 2021 Word Count: 33,259 Abstract Diabetes is a chronic condition that occurs when blood glucose, or blood sugar, levels are too high in the body (NHS, 2016). Diabetes UK (2009) estimates that self-management is 95% of managing diabetes. Self-management refers to an individual’s ability to identify and manage signs, symptoms, treatment, psychological, emotional, and physical factors, and lifestyle changes which are essential to living with a chronic condition (Barlow et al, 2012; WHO, 2018). Illness perceptions are the cognitive beliefs and emotional interpretations that an individual has about their illness which usually are the determining factors for health behaviours such as self-management (Leventhal et al, 1997; Chew et al, 2014). The effectiveness of self-management behaviours in diabetes is an interesting area of research, particularly in developed countries where prevalence is high, but the research is underdeveloped. There is no existing research that investigates the contributing factors or causal prevalence of Type 2 Diabetes (T2D) in Bermuda. The aim of this original research is to explore the lived experiences which contribute to illness perceptions, of patients within the Bermudian population, with type 2 diabetes; and to gain an understanding of how these illness perceptions impact the effectiveness of self-management. To address this gap in the literature, a qualitative method was designed to contribute to a richer quality of data by providing the opportunity for the participants to elaborate on their lived experiences which influence cognitive and emotional representations of type 2 diabetes. In-depth semi-structured interviews were carried out with twenty-five participants (fifteen women and 10 men) living with T2D in Bermuda. Using Deductive Thematic Analysis, three themes were generated, 1) Beyond my control; 2) Who I am vs. who I should be- [Sociocultural challenges] and 3) If you don’t listen, you feel. These themes described how the participants’ perceptions of the cause of T2D influenced self-management practices. Some participants identified as diabetics and others considered themselves as individuals living with diabetes. These self-described identities influenced how participants controlled T2D. To identify as a Bermudian from a traditional sociocultural perspective opposes what it means to ii behaviourally identify as a “good” or healthy diabetic. Attitudes towards T2D self-management and health behaviours are seemingly laxed if there are no overt physical consequences. The participants have engaged in some form of diabetes self-management education (DSME) but there was a perceived gap between knowledge, understanding and behaviour which ultimately impacted the effectiveness of T2D self-management. Based on the study’s finding, the researcher recommends modifying Leventhal et al (2016) CSMSR to gain insight into illness perceptions and how it influences the effectiveness of T2D self-management for individuals living with T2D in Bermuda. The centralised element of the modified CSMSR control, interrelated to the remaining 4 elements, cause, consequence, identity, and timeline. This reflected how effective T2D self-management and the interrelationship of the CSMSR elements influenced the participants’ causal beliefs, post-diagnosis self-identity and perception of the timeline to implement healthy self-management practices before experiencing overt physical consequences. Existing literature supports the findings in this study for future health psychology practice to address illness perceptions and their influence on effective self- management practices in a cultural context for individuals living with T2D in Bermuda. Therefore, practitioner psychologists could benefit from utilising elements of Leventhal et al (2016) CSMSR to address beliefs and illness perceptions with patients and reduce the gap between knowledge, understanding and behaviour as it related to effective T2D self-management. iii Table of Contents Abstract ................................................................................................................................................... ii Table of Contents ................................................................................................................................... iv Acknowledgements ............................................................................................................................... vii Preface ................................................................................................................................................. viii 1.0 Introduction ...................................................................................................................................... 1 2.0 Methodology ................................................................................................................................... 27 2.1 Research Design .......................................................................................................................... 27 2.2 Theoretical Position .................................................................................................................... 28 2.3 Data Collection ............................................................................................................................ 28 2.3.1 Interview Design .................................................................................................................. 29 2.4 Inclusion and Exclusion Criteria .................................................................................................. 30 2.5 Recruitment ................................................................................................................................ 32 2.6 Participants ................................................................................................................................. 32 2.7 Procedure .................................................................................................................................... 33 2.7.1 Documentation .................................................................................................................... 33 2.7.2 Informed Consent ................................................................................................................ 33 2.7.3 Interviews ............................................................................................................................. 34 2.8 Data Analysis ............................................................................................................................... 34 2.8.1 Thematic Analysis ................................................................................................................ 34 2.8.2 Reflexive Thematic Analysis Process .................................................................................... 36 2.9 Ethical Considerations ................................................................................................................. 38 2.9.1 Ethical Approval ................................................................................................................... 38 2.9.2 Confidentiality and Data Protection .................................................................................... 38 2.9.3 Data Storage/ Management ................................................................................................ 39 2.9.4 Dissemination ...................................................................................................................... 39 2.9.5. Publication .......................................................................................................................... 39 3.0 Results and Discussion .................................................................................................................... 40 3.1 Participant Demographics ........................................................................................................... 40 3.2 Summary of Findings ................................................................................................................... 43 3.3 Themes ........................................................................................................................................ 43 3.3.1 Beyond my control ............................................................................................................... 46 3.3.1.1. Perceived Inevitability .................................................................................................. 46 3.3.1.2. Who is in charge? Internal and External Locus of Control ........................................... 50 iv 3.3.2 Who I am vs who I should be (Sociocultural challenges) ..................................................... 57 3.3.2.1 Identifying as a diabetic vs. identifying as an individual with T2D ............................... 58 3.3.2.2. Interpersonal relationships and support, social expectations, and cultural norms .... 63 3.3.2.3 Socioeconomic status – The cost of living with T2D ....................................................