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Family Carers' Experiences of Caring for a Person with Intellectual Disability

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Family Carers' Experiences of Caring for a Person with Intellectual Disability Family Carers’ Experiences of Caring for a Person with Intellectual Disability FINAL REPORT National Disability Authority Research Promotion Scheme 2015 October 2016 Authors: Attracta Lafferty, School of Nursing, Midwifery and Health System, University College Dublin ([email protected]) Diarmaid O’Sullivan, Family Carers Ireland (formerly the Carers’ Association) Paul O’Mahoney, Family Carers Ireland (formerly the Carers’ Association) Laurence Taggart, School of Nursing, University of Ulster Bianca van Bavel, School of Nursing, Midwifery and Health System, University College Dublin To be cited as: Lafferty A, O’Sullivan D, O’Mahoney P, Taggart L, van Bavel B (2016) Family carers’ experiences of caring for a person with intellectual disability. Dublin: University College Dublin Family Carers’ Experiences of Caring for a Person with Intellectual Disability Acknowledgements The authors wish to express their thanks and appreciation to the following: • The family carers who took time out of their busy schedules to complete and return the questionnaires. • The compound carers who also took time out of their busy day to take part in a telephone interview. • Members of the Parents of Adults with Intellectual Disability (PAID) committee, Family Carers Ireland • Mr Pat Dolan, Mr Réa McDunphy and Ms Fiona Dooley, in the Department of Social Protection who facilitated the postal survey mail-outs. • Ms Zoe Hughes and Mr Liam O’Sullivan for their support in promoting the study. • Members of the Project Advisory Panel for their advice and direction; Ms Catherine Cox, Family Carers Ireland; Mr Damien Douglas, a Family Carer; Prof. Gerard Fealy and Dr. Hasheem Mannan, UCD. • The National Disability Authority (NDA) for funding this research under the NDA Research Promotion Scheme. A special thanks is extended to Ms. Cliona Doherty for her support throughout the project, and to Dr Frances Hannon for her invaluable feedback on the report. 3 Family Carers’ Experiences of Caring for a Person with Intellectual Disability Contents Acknowledgements ............................................................................................ 3 Contents ............................................................................................................... 4 List of Tables ....................................................................................................... 6 List of Figures ...................................................................................................... 7 Glossary of Terms ............................................................................................... 8 Executive Summary ............................................................................................ 9 Introduction .............................................................................................................................. 9 Objectives ................................................................................................................................ 11 Methods ................................................................................................................................... 11 Key Findings ............................................................................................................................ 12 Relevance to the Literature ................................................................................................. 13 Key Implications for Policy and Practice ........................................................................... 17 Next Steps ............................................................................................................................ 18 Conclusions .......................................................................................................................... 19 Chapter 1: Introduction ................................................................................... 20 1.1 Family Caregiving in Ireland .......................................................................................... 20 1.2 Intellectual Disability and Family Caregiving .............................................................. 21 1.3 Irish Policy and Supports for Family Carers .............................................................. 23 1.4 Aim and Objectives ......................................................................................................... 26 1.5 Study Design ..................................................................................................................... 27 1.6 Data Collection ................................................................................................................ 27 1.7 Data Analysis .................................................................................................................... 28 Chapter 2: Literature review ........................................................................... 29 2.1 Family Caregiving and Intellectual Disability .............................................................. 29 2.2 Resilience and Families of a Person with Intellectual Disability ............................. 33 2.3 Factors Associated with Resilience in Families with a Person with Intellectual Disability ................................................................................................................................... 34 2.4 The Compound Carer ................................................................................................... 39 2.5 Conclusion ........................................................................................................................ 42 Chapter 3: Findings Phase 1- Survey of Family Carers ................................ 43 3.1 Profile of Carers .............................................................................................................. 43 4 Family Carers’ Experiences of Caring for a Person with Intellectual Disability 3.2 Caregiving Activities ....................................................................................................... 45 3.3 Profile of Care-recipients .............................................................................................. 47 3.4 Carers’ Health and Psychological Wellbeing ............................................................. 50 3.5 Social Connectedness ..................................................................................................... 52 3.6 Family Supports................................................................................................................ 53 3.7 Professional Services ...................................................................................................... 55 3.8 Internet-based Supports ................................................................................................ 57 3.9 Carer Resilience .............................................................................................................. 58 3.10 Summary ......................................................................................................................... 61 Chapter 4: Findings Phase 2 - Telephone Interviews with Compound Carers ................................................................................................................. 64 4.1 Characteristics of Compound Carers ........................................................................ 64 4.2 Overview of Themes and Subthemes ......................................................................... 66 4.3 Divisions of Compound Caring .................................................................................... 66 4.4 Learning and Transitioning ............................................................................................ 70 4.5 Maintaining and Sustaining Continuity of Care ......................................................... 74 4.6 Summary ............................................................................................................................ 78 Chapter 5: Discussion and Conclusion ........................................................... 79 5.1 Introduction ...................................................................................................................... 79 5.2 Profile of Carers .............................................................................................................. 80 5.3 Caregiving Activities ....................................................................................................... 81 5.4 Carers’ Health and Wellbeing ...................................................................................... 82 5.5 Profile of Care-recipients .............................................................................................. 84 5.6 Family Resilience .............................................................................................................. 84 5.7 Availability of Appropriate Services and Supports ................................................... 86 5.8 The Compound Carer ................................................................................................... 88 5.9 Implications of the Study’s Findings ............................................................................. 90 5.10 Limitations of the Study ............................................................................................... 93 5.11 Conclusion ...................................................................................................................... 93 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