Siblings of adults who have a learning disability: personal wishes, reality and parental expectations for future support

(2013) Siblings of adults who have a learning disability: personal wishes, reality and parental expectations for future support. Doctoral thesis (PhD), Manchester Metropolitan University.

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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.