Illness perceptions in adolescents with juvenile arthritis: applying the common sense self-regulatory model A thesis submitted to The University of Manchester for the degree of Doctor of Philosophy in the Faculty of Human and Medical Sciences 2015 Daniela Ghio School of Medicine Institute of Inflammation and Repair 2 Contents page List of Figures ................................................................................................................. 12 List of Tables ................................................................................................................... 14 List of Abbreviations ....................................................................................................... 17 Abstract .................................................................................................................... 19 Declaration .................................................................................................................... 20 Copyright statement ........................................................................................................ 20 Acknowledgements ......................................................................................................... 21 About the author .............................................................................................................. 22 Publications in Preparation .............................................................................................. 24 Conference Proceedings .................................................................................................. 25 Chapter 1: Adolescents with long-term conditions .............................................................. 27 1.1. Overview ............................................................................................................. 27 1.2. Defining adolescence ........................................................................................... 27 1.3. Adolescents with long-term conditions (LTCs) .................................................. 28 1.3.1. Juvenile Idiopathic Arthritis (JIA) .................................................................. 30 1.3.2. Chronic Pain ................................................................................................... 33 1.3.2.1. Models of Pain ....................................................................................... 34 1.3.2.1.1. Biopsychosocial Approaches ..................................................................... 34 1.3.2.1.2. Gate Control Theory ................................................................................... 36 1.3.2.1.3. Neuromatrix of Pain Theory ....................................................................... 37 1.3.2.1.4. Diathesis-stress model of chronic pain ....................................................... 38 1.3.2.1.5. Cognitive-Behavioural Models .................................................................. 39 1.3.2.2. Translation of models into pain interventions ....................................... 39 1.3.3. Adolescents’ self-management of long-term conditions ................................ 41 1.3.3.1. Impact of a long-term condition ............................................................ 42 1.3.3.1.1. Education .................................................................................................... 42 1.3.3.1.2. Family and Peer Support ............................................................................ 43 1.3.3.1.3. Cognitive Functioning ................................................................................ 44 1.3.3.1.4. Self-esteem and emotional wellbeing ......................................................... 45 1.4. Development during adolescence ........................................................................ 46 1.4.1. Cognitive development ................................................................................... 48 3 1.4.1.1. Piagetian approach ................................................................................ 48 1.4.1.1.1. Developmental approach to conceptualising illness .................................. 50 1.4.1.2. Vygotskian approach ............................................................................ 51 1.4.1.2.1. Functionalist approach to conceptualising illness ...................................... 52 1.4.1.3. Social Cognitive Theory ....................................................................... 52 1.4.1.3.1. Social learning approach to conceptualising illness .................................. 53 1.4.1.4. Emerging approach: Illness representations approach .......................... 54 1.5. Summary ............................................................................................................. 56 Chapter 2: Illness Representations and Illness Behaviour ................................................... 58 2.1. Overview ............................................................................................................. 58 2.2. The development of the common sense self-regulatory model .......................... 59 2.3. Common sense self-regulatory model ................................................................. 60 2.4. Illness Representations ........................................................................................ 62 2.4.1. Identity ............................................................................................................ 62 2.4.2. Cause .............................................................................................................. 63 2.4.3. Timeline .......................................................................................................... 63 2.4.4. Consequences ................................................................................................. 64 2.4.5. Control/Curability .......................................................................................... 65 2.5. Emotional representations ................................................................................... 66 2.6. Coping procedures and illness behaviours .......................................................... 66 2.7. Self-regulation (Dynamic feedback stage) .......................................................... 68 2.8. Conclusions regarding utilising the CS-SRM with adolescents ......................... 71 2.9. Assessment of illness representations ................................................................. 71 2.9.1. Illness Perceptions Questionnaire .................................................................. 71 2.9.2. Research with adolescent cohorts ................................................................... 73 2.9.2.1. Identity .................................................................................................. 83 2.9.2.2. Cause ..................................................................................................... 84 2.9.2.3. Timeline ................................................................................................ 84 2.9.2.4. Consequences ........................................................................................ 85 2.9.2.5. Control and curability ........................................................................... 86 2.9.2.6. Emotional Representations ................................................................... 87 2.9.2.7. Conclusions from review ...................................................................... 88 4 2.10. Summary .............................................................................................................. 89 Chapter 3: Research Aims & Objectives ............................................................................. 90 3.1. Overarching research question ............................................................................ 90 3.2. Aim 1: Suitability of CS-SRM ............................................................................ 90 3.3. Aim 2: Assessment of representations in adolescents ......................................... 92 3.4. Assessment of Children’s Experiences – Sub-Study of the Childhood Arthritis Propsective Study (ACE-CAPS) .................................................................................. 92 Chapter 4: Methods .............................................................................................................. 94 4.1. Overview ............................................................................................................. 94 4.2. Suitability of the CS-SRM (Aim 1) ..................................................................... 94 4.2.1. Research Paradigm ......................................................................................... 95 4.2.2. CS-SRM: Illness Representations ................................................................... 98 4.2.2.1. Design .................................................................................................... 98 4.2.2.2. Methodological Considerations – Interview ......................................... 98 4.2.2.2.1. Cognitive Interviewing ............................................................................... 99 4.2.2.3. Participants .......................................................................................... 102 4.2.2.4. Materials .............................................................................................. 102 4.2.2.5. Procedure ............................................................................................