"What is my experience of what I am in relation to people who I have shared my life with for the last 34 years?": exploring care relationships at the end of life in two life-sharing communities for people with a learning disability

Citation

Jacobs P, Quayle E & Wilkinson H (2023) "What is my experience of what I am in relation to people who I have shared my life with for the last 34 years?": exploring care relationships at the end of life in two life-sharing communities for people with a learning disability. International Journal of Care and Caring.

Abstract
Old age is still an under-researched stage in the lives of people with a learning disability. Providing support to people towards the end of their lives can be challenging for services and involves complex ethical decision-making processes. This study explored the experiences of social care staff in two life-sharing communities, where adults with a learning disability and staff live together. Four main themes were identified, highlighting different dimensions of care. This included an emphasis on relational care, responsive care, collaborative care, and lastly practices that allowed or hindered people with a learning disability to stay within the communities till the end of their life

Notes
Output Status: Forthcoming

Journal
International Journal of Care and Caring

People

Dr Paula Jacobs

Research Fellow, Social Work