SELF-CARE IN YOUNG PEOPLE WITH DIABETES: A QUALITATIVE EXPLORATION USING A SALUTOGENIC APPROACH EMMA GREEN A thesis submitted in partial fulfilment of the requirements of the University of East London for the degree of Doctor of Philosophy September 2018 Abstract This thesis investigates experiences of self-care amongst young people with diabetes using a qualitative salutogenic approach. Diabetes self-care includes injecting insulin, counting carbohydrates, attending hospital check-ups and other activities to maintain stable blood sugar levels. Optimal blood sugar levels are not always easy for young people with diabetes to attain, placing them at increased risk of health complications. A lack of self-care has been assumed traditionally to indicate a lack of knowledge. This exemplifies a ‘deficit’ approach whereby efforts to improve self-care focus heavily on diabetes education to increase knowledge. However, there is a lack of evidence that young people lack diabetes knowledge or that education-only interventions are effective. This thesis applies salutogenesis as an alternative to the deficit approach in which young people are conceptualised as individuals and their capabilities are acknowledged. The empirical work undertaken includes: a meta-ethnography of the international qualitative literature, analysis of semi-structured interviews with young people living in a diverse urban area of the UK, defined as disengaged from diabetes self-care (N=14): and a qualitative study conducted with young people participating in novel salutogenic projects which focused on their capabilities rather than ‘correcting’ their deficits (N=5). Across the studies it was found that ‘identity work’ underpins young people’s experiences with diabetes self-care. Identity work is the continual negotiation of diabetes into self-concept (‘being’ identity) and diabetes self-care into daily life (‘doing’ identity). This involves navigating threats to and validators of identity within the home, the diabetes clinic, the school and the social environment, to achieve a sense of normality. Identity work is fluid and comprises three types: ‘forgetting diabetes’, ‘diabetes as dominating’ and ‘diabetes as routine’, each of which are associated with different levels of engagement with diabetes self-care. Participating in salutogenic projects enabled young people to better navigate identity work and thus integrate diabetes into both ‘being’ and ‘doing’ identity. This thesis demonstrates that diabetes self-care is a manifestation of young people’s ongoing identity work and that this identity work is modifiable. Further research should explore the way in which salutogenic projects can enhance engagement with diabetes self-care on a larger scale. ii Acknowledgements I would like to thank the people who have supported me through the process of my PhD, including my supervision team: Professor Angela Harden and Dr Darren Sharpe. I would also like to express my gratitude to the young people who participated in the research and shared their experiences with me, as well as their parents, who gave permission for them to be interviewed. In addition, I would like to thank the staff and PhD students at the Institute for Health and Human Development (IHHD), who have provided advice and support throughout the process of my PhD. My sincere thanks to NIHR CLAHRC North Thames for providing funding for my research. iii Contents Chapter 1: Introduction 1.1 Introduction to this thesis ...................................................................... 1 1.2 Content of this thesis ............................................................................. 3 1.3 Context of this thesis ............................................................................. 4 1.4 A definition of diabetes ......................................................................... 6 1.5 The prevalence of diabetes .................................................................... 6 1.6 Health inequalities in diabetes .............................................................. 8 1.7 The costs of diabetes ........................................................................... 10 1.8 A definition of disengagement ............................................................ 11 1.9 A definition of self-care ...................................................................... 11 1.10 A definition of young people .............................................................. 13 1.11 A definition of salutogenesis ............................................................... 14 1.12 Area of enquiry ................................................................................... 15 1.13 Concluding comments for this chapter ............................................... 17 Chapter 2: Literature review 2.1 Overview of chapter ............................................................................ 18 2.2 The conceptualisation of children and young people in research ....... 18 2.3 The conceptualisation of children and childhood in theory ................ 19 2.4 The conceptualisation of adolescence in theory.................................. 20 2.5 Young people with chronic conditions ............................................... 21 2.6 Self-care in young people with chronic conditions ............................. 23 2.7 Self-care interventions in young people with chronic conditions ....... 24 2.8 Education and diabetes self-care ......................................................... 25 2.9 Parents and diabetes self-care ............................................................. 28 2.10 Friends and diabetes self-care ............................................................. 31 2.11 Clinicians and diabetes self-care ......................................................... 33 2.12 Challenges with diabetes self-care ...................................................... 35 2.13 Identity and diabetes self-care ............................................................. 39 2.14 Self-care in young people defined as disengaged ............................... 44 iv 2.15 Concluding comments for this chapter ............................................... 48 Chapter 3: Methodology 3.1 Overview of this chapter ..................................................................... 49 3.2 A qualitative salutogenic approach ..................................................... 49 3.3 Stage 1: Qualitative systematic review ............................................... 50 3.4 Research questions .............................................................................. 50 3.5 Scope of the review ............................................................................. 51 3.6 Inclusion criteria.................................................................................. 51 3.7 Search strategy .................................................................................... 52 3.8 Data management ................................................................................ 52 3.9 Data synthesis ..................................................................................... 53 3.10 Review procedure................................................................................ 53 3.11 Stage 2: Qualitative interviews with young people with diabetes ...... 60 3.12 Research questions .............................................................................. 60 3.13 Aims….. .............................................................................................. 61 3.14 Interview participants .......................................................................... 61 3.15 Interview sampling .............................................................................. 61 3.16 Interview recruitment ….. ................................................................... 62 3.17 Ethical issues ....................................................................................... 63 3.18 Location and timing of the interviews ................................................ 63 3.19 Interview questions ….. ...................................................................... 63 3.20 Treatment of interview data….. .......................................................... 64 3.21 Data analysis ....................................................................................... 64 3.22 Stage 3: Interviews with young people involved in salutogenic projects….. .......................................................................................... 66 3.23 Research question …........................................................................... 67 3.24 Interview participants .......................................................................... 67 3.25 Interview recruitment ….. ................................................................... 67 3.26 Ethical issues ….. ................................................................................ 68 3.27 Location and timing of the interviews ................................................ 68 3.28 Interview questions ............................................................................. 68 3.29 Treatment of interview data ….. ......................................................... 68 v 3.30 Interview analysis................................................................................ 69 3.31 Ontology and epistemology of this thesis ........................................... 71 3.32 My role as a researcher ….. ................................................................ 71 3.33