Views and Experiences of People with Intellectual Disabilities and Their Families. (1) The User Perspective

Abstract

The present paper 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: (1) ‘testaments of life’, which are mainly ethnographies and life histories; (2) ‘user movement media’ produced in an accessible format for people with IDs or by people with IDs themselves; and (3) ‘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. Some of the methodological issues associated with these gaps are more fully discussed. A more coordinated and broad‐based research approach to user views and experiences is advocated.

Psychiatric in-Patients Away From Home: Accounts by People With Intellectual Disabilities in Specialist Hospitals Outside Their Home Localities

“…2000) and little attention has been paid to their views on the effectiveness of clinical interventions (Raitasuo et al. 1999), the impact of medication on their well‐being, and their inclusion in care planning, especially for people with additional mental health and behavioural problems (Ramcharan & Grant 2001).…”

Views and Experiences of People with Intellectual Disabilities and Their Families. (2) The Family Perspective

“…Unlike studies involving the personal experiences and views of people with IDs Ramcharan & Grant 2001, this issue, pp. 348–363), there has been a long tradition of research involving family carers as research subjects.…”

«Design for All» in Social Research on Persons with Disabilities

“…Although in many cases the use of proxies is unavoidable, there are drawbacks. Apart from ethical problems arising, uncertainty is also generated over the validity of the information (Todorov and Kirchner, 2000), since it does not come directly from the person in the study, but rather from an agent who interprets, with more or less accuracy, that person's experiences, opinions and/or beliefs (Ramcharan and Grant, 2001).…”

“…It has been argued that the development of qualitative research has helped put persons with disabilities on the research agenda and promote such studies in many countries worldwide (Hartley andMuhit, 2003, Ramcharan andGrant, 2001). At present, social research increasingly relies on direct testimonies to gain a better understanding of the experiences and living conditions of these people (Horejes, 2007).…”