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SIBLINGS OF ADULTS WHO HAVE A LEARNING DISABILITY: PERSONAL WISHES, REALITY AND PARENTAL EXPECTATIONS FOR FUTURE SUPPORT DEBORAH DAVYS A thesis submitted in partial fulfilment of the requirements of the Manchester Metropolitan University for the degree of Doctor of Philosophy Faculty of Health, Psychology and Social Care 2013 Abstract Sibling relationships are significant in the lives of people who have a learning disability. They usually form a major part of their social network and there is an expectation at government, social and family level that siblings will provide some degree of support in the event of parental decline. A mixed methodological approach was taken, utilizing a survey in Stage one and Interpretative Phenomenological Analysis (IPA) at Stage two. In the latter, 15 face to face semi-structured interviews were conducted to support the research aim of listening to the voices of adult siblings of people who have a learning disability, regarding their personal wishes or preferences in relation to a future support role.

Three overarching themes were identified from nine superordinate themes: impact of learning disability, services, and sibling needs and recommendations. Key messages raised were that learning disability has a significant impact upon sibling lives throughout the life course; although the areas and degree of impact varies widely between individuals, most participants voiced concern about the future, particularly when older parents would no longer be able to provide care. Service issues were raised, as was the difference in role and function between families and service providers. In order to better meet sibling needs and recommendations for lifelong support, information and advice, more productive partnerships need to be established, particularly in the area of futures planning.

This research presents the clear perspective that tangible benefits may be available as a direct result of association with learning disability. It also provides a deeper insight into parental response to learning disability alongside further rational for a lack of futures plans and why siblings may not want to co-reside with a learning disabled person. These findings have relevance to service providers, siblings of learning disabled people, students in the field of health and social care and wider society. 1 Table of Contents Acknowledgments.

8 Chapter One: Introduction .1 Overall aim of the research .2 Current state of research related to the adult siblings of people who have a learning disability .3 Why is this subject relevant .4 Difficulties in studying this topic .5 Brief outline of the research process followed .6 Outline of the thesis. 16 Chapter Two: Literature Review .1 Parameters of the literature review .2 Four key themes arising from the literature review .3 Key theme 1: The experience or impact of siblings upon an individual’s life .1 The impact of a disabled sibling in childhood .2 The impact of a disabled sibling in adulthood.3 The impact of a learning disabled sibling upon adult lives. 26 Summary of key theme .4 Key theme 2: Sibling tasks, roles and relationships .1 Childhood tasks, roles and relationships .2 Sibling tasks, roles and relationships change over time.3 Adult sibling roles and relationships in the presence of mental illness .4 Adult sibling roles and relationships in the presence of physical disability .5 Adult sibling roles and relationships in the presence of learning disability. 42 Summary of key theme .5 Key theme three: Futures planning and concerns .1 Typically developing families and anticipated future care .2 Adult siblings of people with mental illness and future care .3 Adult siblings of people who have a physical disability and future care.4 Adult siblings of people who have a learning disability and future care.

56 Summary of key theme .6 Key theme four: Adult siblings of people who have a disability - future needs and wishes. 65 Chapter Three: Research Methodology .1 The research question, epistemology and philosophical stance .1 Interpretative Phenomenological Analysis.2 Rationale for use of an IPA approach .4 Ethics and power .5 Design of the study .7 Reliability and validity.9 Ways of presenting results and discussion. 98 Chapter Four: Results of Stage one .1 Table 1 Sibling level of contact .2 Table 2 Responses to question 6-9.2 Written comments from the questionnaires .1 Level of satisfaction with services .2 Parental influence on futures planning and care .3 Siblings’ worries about the future, futures planning and the impact of a learning disabled person upon siblings` lives .4 Siblings have needs. 108 Conclusion to the results of Stage one.

109 Chapter Five: Results of Stage two .1 Pen portraits of the participants .1 Table 3 Superordinate and subordinate themes.4 Superordinate theme: Impact of the learning disabled person upon sibling life. Subordinate theme growing up with learning disability .2 Subordinate theme negative impact of learning disability upon sibling life .3 Subordinate theme: positive impact of learning disability upon sibling life .4 Subordinate theme mixed sentiments .5 Subordinate theme: impact of learning disability upon sibling career .6 Subordinate theme: impact of learning disability upon partner choice .7 Subordinate theme: sibling roles .5 Superordinate theme: family .1 Subordinate theme: family culture .2 Subordinate theme: family supports the learning disabled person .3 Subordinate theme: the learning disabled person as a source of stress or conflict in the family .4 Subordinate theme: parents .5 Subordinate theme: non-disabled siblings .6 Subordinate theme: family and finance .7 Subordinate theme: Asian family culture .6 Superordinate theme: how learning disability affects the disabled person .1 Subordinate theme: origins of learning disability .2 Subordinate theme: health impact of learning disability. Subordinate theme: negative impact of learning disability .4 Subordinate theme: positive attributes of the learning disabled person and benefits of learning disability .5 Subordinate theme: impact of learning disability upon relationships .7 Superordinate theme: societal response to learning disability .1 Subordinate theme: negative social response to learning disability .2 Subordinate theme: positive social response to learning disability.8 Superordinate theme: transitions .1 Subordinate theme: transition and life stage in general.2 Subordinate theme: transition and the person who has a learning disability .3 Subordinate theme: sibling life stage .4 Subordinate theme: death as a transition.5 Subordinate theme: parental ageing.6 Subordinate theme: transition to taking on a major carer role for the learning disabled person .9 Superordinate theme: services .1 Subordinate theme negative comments about services. Subordinate theme: positive comments about services .3 Subordinate theme: services provide a role that differs from the family .10 Superordinate theme: the future .1 Subordinate theme: futures planning .2 Subordinate theme: future expectations and wishes .3 Subordinate theme: concerns about the future .11 Superordinate themes: siblings have needs, and advice to siblings .1 Subordinate theme: siblings need support .2 Subordinate theme: siblings need to look after their own needs.3 Subordinate theme: siblings need support in childhood .4 Superordinate theme: advice to siblings .5 Subordinate theme: advice around planning .6 Subordinate theme: siblings should be involved with the learning disabled person if they want to .7 Subordinate theme: support the learning disabled person to have a normal life .12 Summary of Stage two.13 Comparison of results from Stage one with results from Stage two.

198 Chapter Six: Discussion.1 Overarching theme: Impact of learning disability .1 Impact of learning disability upon siblings` lives .2 Impact of learning disability upon family .3 Impact of learning disability upon the future.2 Overarching theme: Services.3 Overarching theme: Sibling needs and recommendations. 240 Chapter Seven: Conclusion .1 Summary of the research journey to date .2 Key findings and contribution to the field of learning disabilities .3 Implications for practice .4 Critique of the research process and findings .5 Further areas of research identified. 293 6 Appendix A: Table summary of studies included in the review related to the adult siblings of people who have a learning disability. 294 Appendix B: Study advertisement sheet.

313 Appendix C: Study information sheet for those who have demonstrated interest in the research project- interview. 314 Appendix D: Questionnaire for Adults aged 25 and over who have a brother or sister who has a learning disability – Concerns for the future. 317 Appendix E: Interview guide for semi-structured interviews. 323 Appendix F: Consent form.

325 Appendix G: Sibs contact support sheet. 327 Appendix H: Example of theme and evidence chart from interview 4. 328 Appendix I: Excerpt from Interview 12. 331 Appendix J: Frequency of themes across the transcripts.

334 Appendix K: Summary of quantitative data from interviews. 336 7 Acknowledgments I acknowledge the significant contributions of others in the preparation and presentation of this thesis: Professor Carol Haigh and Professor Duncan Mitchell for their direction, feedback, encouragement and kindness throughout the process. To the brothers and sisters of people who have a learning disability who were willing to share their personal experiences and perspectives. My friends and work colleagues for encouragement and support at both a practical and emotional level.

To my mum, Jean Mills, who along with my father has always provided encouragement to follow my areas of interest. My partner Richard Dixey, for calmness and practical solutions. I dedicate this thesis to the memory of my father, Henry Waring Mills from whom I learned the value of perseverance and tenacity. 8 Chapter One: Introduction Having reflected upon the origin of this thesis, my feelings are that it has developed from both professional and personal interests over many years.

I spent several years working as an occupational therapist within a community learning disability team, and was part of a project that focused upon futures planning with families and older parents. Whilst working with these families I became conscious of older parents’ concerns about who would provide care and support for their disabled son or daughter when they could no longer do so. I also became aware of the complex nature and sensitivity of futures planning within the family context, and came to understand that, although some families were acutely worried about the future, they were unable or unwilling to make practical plans for the future of the learning disabled individual. This area became the focus of my Masters dissertation and subsequent publication on this topic (Davys and Haigh 2008).

From my work at Masters Level, I became aware that the older parents I had met expected their non- disabled children to provide future support to the learning disabled person, yet at the same time did not want to place a burden upon them. These contradictory expectations and wishes of older parents led me to reflect upon the needs and wishes of adult siblings of learning disabled people. On further reflection, it is likely that my clinical experience of working with the sister of a learning disabled woman, who was a similar age to me, made me consider at a subconscious level, how much support I would be prepared to give my own sister if I was in this situation. My clinical and personal enquiry developed as I became aware that little had been written about this subject.

The following thesis is the culmination of the research that grew from my reflection 1.1 Overall aim of the research To explore the perceptions of siblings of adults who have a learning disability in relation to personal wishes, family expectation, and any discrepancy between the two, concerning their role in the future support of their sibling. 9 Objectives: 1) To explore the personal wishes or preferences of siblings of learning disabled people, in relation to providing future support for the learning disabled person. 2) To compare personal wishes or preferences and the reality of what has actually happened or what they expect to happen, in terms of support to the learning disabled person in the future. 3) To identify how the expectations and wishes of non-disabled siblings compare to the expectations or wishes of older parents.