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Views and experiences of people with intellectual disabilities and their families: (2) the family perspective
- Authors:
- GRANT Gordon, RAMCHARAN Paul
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 14(4), 2001, pp.364-380.
- Publisher:
- Wiley
Examines findings from research into the views and experiences of families of people with intellectual disabilities (IDs). It draws from the authors' report on the views and experiences of users and carers, the DoH Research Initiative on Learning Disability: Proposal for a Research Review on the Views and Experiences of Users and Carers, which was commissioned by the Department of Health, and was intended to inform some of the thinking behind Valuing People and the associated research programme. This article traces the development and scope of research on family carers in relation to the personal and psychological experience of care as well as in relation to receipt of services. Theoretical and methodological gaps in the literature are outlined. Social systems theory is proposed as a means of addressing the requirements of a future research agenda about family care.
Views and experiences of people with intellectual disabilities and their families: (1) the user perspective
- Authors:
- RAMCHARAN Paul, GRANT Gordon
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 14(4), 2001, pp.348-363.
- Publisher:
- Wiley
Presents a descriptive summary of the views and experiences of people with intellectual disabilities (IDs) as they have been represented in research and other literature. The authors develop further the DoH Research Initiative on Learning Disability: Proposal for a Research Review on the Views and Experiences of Users and Carers, a review report commissioned by the Department of Health on the views and experiences of users and family carers focusing on the ways in which research might contribute to policy and practice. The literature review of user views and experiences produced three broad categories: testaments of life, which are mainly ethnographies and life histories; user movement media produced in an accessible format for people with IDs or by people with IDs themselves; and research based studies in their varying forms. It is demonstrated that no single approach is able to encompass all the interests of knowledge production, policy planning, and action or practice on its own. A more coordinated and broad-based research approach to user views and experiences is advocated.