“Who supports the families of black and minority ethnic children with life-limiting conditions?” Wahida Shah Kent PhD Cardiff University 2020 Table of Contents Declarations ................................................................................................................................ i Acknowledgements .................................................................................................................... ii Abstract ......................................................................................................................................iii Dedication .................................................................................................................................. v Chapter 1 Introduction ............................................................................................................... 1 1.1. Why is this particular topic being researched? .............................................................. 1 1.2. What is the significance of the topic? ............................................................................ 3 1.3. Context of the research ................................................................................................ 4 1.4. Where is the research being conducted and why? ....................................................... 6 1.5. The research aims and objectives ................................................................................ 6 1.6. Conclusion .................................................................................................................... 7 Chapter 2 Literature review ........................................................................................................ 9 2.1. Introduction ...................................................................................................................... 9 2.1.1. Literature review search strategy ......................................................................... 10 2.1.2. Chapter overview ................................................................................................. 13 2.2. Language and terminology ......................................................................................... 15 2.2.1. ‘Race’ and ethnicity .............................................................................................. 16 2.2.2. Language of disability ........................................................................................... 16 2.2.3. Palliative care and end of life care ....................................................................... 17 2.3. Demographics in relation to BME populations of Wales and England, and prevalence of Disability and LLCs amongst children .................................................................................. 19 2.3.1. Ethnicity (Wales and England) ............................................................................. 19 2.3.2. Languages spoken ............................................................................................... 20 2.3.3. Religion ................................................................................................................ 21 2.3.4. Prevalence of disability / LLCs amongst children ................................................. 22 2.4. Parental caring experience ......................................................................................... 27 2.4.1. Issues faced by parent carers .............................................................................. 27 2.4.2. Service usage amongst carers of disabled children and ethnic variance ............. 34 2.5. Theories underpinning the research ........................................................................... 38 2.5.1. Anti-racism ........................................................................................................... 38 2.5.2. Ecological systems theory .................................................................................... 46 2.6. Chapter conclusion ..................................................................................................... 51 Chapter 3 Methodology ............................................................................................................ 53 3.1. Introduction .................................................................................................................... 53 3.2. Research question ........................................................................................................ 54 3.3. Research design ........................................................................................................... 54 3.3.1. Philosophical position ............................................................................................. 56 3.4. Quantitative research .................................................................................................... 58 3.5. Qualitative research ...................................................................................................... 62 3.5.1. Participants - sampling technique ........................................................................... 65 3.5.2. Inclusion and exclusion criteria ............................................................................... 71 3.5.3. Data Generation ..................................................................................................... 71 i 3.6. Framework of Analysis .................................................................................................. 72 3.6.1. Qualitative data analysis ......................................................................................... 72 3.6.2. Quantitative analysis ............................................................................................... 73 3.7. Ethics and Consent ....................................................................................................... 74 3.8. Writing the thesis ‘reflexivity’, emotion work .................................................................. 79 3.9. Conclusion ..................................................................................................................... 84 Chapter 4 The wider context of living with a disabled child (quantitative element) .................. 86 4.1. Introduction .................................................................................................................... 86 4.1.1. Aim of quantitative research ................................................................................... 88 4.1.2. Ethnicity data on children with life-limiting conditions ............................................. 89 4.1.3. Analysis of Wave 5 of the Millennium Cohort Study ............................................... 91 4.2. Education ...................................................................................................................... 92 4.2.1. Inclusion of data relating to education..................................................................... 92 4.2.2. General background/scene-setting ......................................................................... 93 4.2.3. Support for child in school (formal and informal sources) ..................................... 101 4.2.4. Child’s mode of travel to school ............................................................................ 104 4.2.5. Childcare: formal support ...................................................................................... 107 4.2.6. Family support/engagement with school ............................................................... 110 4.3. Social networks and family support ............................................................................. 111 4.3.1. Childcare and informal networks ........................................................................... 112 4.4. Leisure / Social activities ............................................................................................. 122 ii 4.5. Conclusion ................................................................................................................... 129 Chapter 5 Having a child with a life-limiting condition ............................................................ 134 5.1. Introduction .................................................................................................................. 134 5.2. Diagnosis..................................................................................................................... 136 5.2.1. Emotional response to receiving the diagnosis .................................................. 138 5.2.2. Language and terminology ................................................................................... 143 5.2.3 Ideas for improving practice ................................................................................... 147 5.3. Experience of caring and impact on family well-being ................................................. 153 5.3.1. Impact of caring on parental health ....................................................................... 154 5.3.2. Impact on siblings ................................................................................................. 157 5.4. Employment / Work ..................................................................................................... 164 5.5. Religion as a coping mechanism; source of comfort and hope ................................... 169 5.6. Conclusion ..................................................................................................................