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Dying matters: a workbook on caring for people with learning disabilities who are terminally ill
- Authors:
- BROWN Hilary, BURNS Sophie, FLYNN Margaret
- Publisher:
- Mental Health Foundation
- Publication year:
- 2005
- Pagination:
- 132p.,loose-leaf
- Place of publication:
- London
Dying Matters is a workbook for support staff and managers in learning disability services to help them address the needs of people with learning disabilities who are dying, and to explore their role in providing care and support. It will assist staff and managers to talk together about how to support someone in their service who is dying and/or plan ahead for the time when someone in their service needs care through terminal illness. It will also provide a guide to the roles of healthcare professionals and how best to communicate and work with them in the best interests of the dying person. The workbook is based on a research study funded by the Foundation for People with Learning Disabilities as part of the Growing Older with Learning Disabilities (GOLD) programme. It includes case studies of people who had been terminally ill while living in a range of residential services. People with learning disabilities should have good support and care when they are terminally ill. What does this mean in practice for staff working in residential and group settings? How can hospice staff best address the needs of people with learning disabilities? How can health professionals, home managers and support staff work together? How can they involve family members sensitively? By exploring the themes in this workbook and planning ahead, everyone can play their part in ensuring that there will be a range of high quality care and support consistently available to people with learning disabilities when they are dying.
Please don't let it happen on my shift. Supporting staff who are caring for people with learning disabilities who are dying
- Authors:
- BROWN Hilary, BURNS Sophie, FLYNN Margaret
- Journal article citation:
- Tizard Learning Disability Review, 8(2), April 2003, pp.32-41.
- Publisher:
- Emerald
Reports on a qualitative study of services that have cared for a person with learning disabilities during a terminal illness. The project was based on a series of case studies, twenty-one individual case studies were included from twelve different services. Interviews were also carried out with staff, relatives and service users. The research reflects current concern about access to health care as well as the national priority being placed on improvements in cancer services for all patients. The study documents how the service learned of the person's illness, how they mobilised services and made decisions, how effectively agencies worked together and what support staff needed in the person's last months and weeks. It also considers the way staff, as individuals and teams, made sense of their experience and evaluated the input of other professionals. The article looks at two cases in detail to highlight the findings.