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Involving people with learning disabilities in research: issues and possibilities
- Author:
- GILBERT Tony
- Journal article citation:
- Health and Social Care in the Community, 12(4), July 2004, pp.298-308.
- Publisher:
- Wiley
Advances in the social position of people with learning disabilities have led to a situation where research and evaluation studies are increasingly required to include their views and opinions. One key outcome of this shift is that some major funding bodies now insist on the inclusion of people with learning disabilities as a condition of research funding. This has produced new possibilities and new challenges for researchers, and has real consequences for people working in health and social care. This paper sets out to explore some developments and challenges in research with people with learning disabilities, providing a selective overview of developments with the aim of demonstrating the richness, ingenuity and potential of research involving people with learning disabilities. Three broad sections focus on the ethics and philosophy of participatory research, methodologies employed at particular points in the research process designed to ensure the involvement of participants in research, and building capacity in participatory research as a precondition to the further development of this approach. An investment in capacity would enable this approach to move into the mainstream of research activity involving people with learning disabilities.
Im a researcher!
- Author:
- -
- Journal article citation:
- Llais, 73, Summer 2004, pp.8-10.
- Publisher:
- Learning Disability Wales
Looks at the process involved in undertaking the participatory research and the experiences of the people involved in doing the research. It draws on the experience of a research project in South Wales, where people with learning disabilities have been involved as researchers to explore the perceptions of 'health' of people with learning disabilities who can verbalise.
Research: what it is and how to do it
- Author:
- CUPPLES Joan
- Publisher:
- Hexagon Publishing
- Publication year:
- 2004
- Pagination:
- 38p.
- Place of publication:
- Minehead
Provides an easy to read training handbook (including a tape) for people being supported to do research in the community.
We are all in the same boat: doing people-led research
- Authors:
- TOWNSON Lou, et al
- Journal article citation:
- British Journal of Learning Disabilities, 32(2), June 2004, pp.72-76.
- Publisher:
- Wiley
This article is written by members of the Carlisle Research Co-operative about their work and the importance of people with learning difficulties leading and being involved in research. The group has eight members, six of who have learning difficulties, and carrys out research about learning difficulties.
Inclusive learning disability research: the (nondisabled) researcher's role
- Author:
- WALMSLEY Jan
- Journal article citation:
- British Journal of Learning Disabilities, 32(2), June 2004, pp.65-71.
- Publisher:
- Wiley
Explores the role of the nondisabled researcher who supports inclusive research in learning disability. Argues for more transparency about the role in order to highlight the challenges of working inclusively on research projects, the real contribution of people with learning difficulties to research, and the training/support implications of working inclusively.
Medication should be made easier to understand
- Authors:
- WILLIAMS Wayne, et al
- Journal article citation:
- Community Living, 18(2), 2004, pp.16-17.
- Publisher:
- Hexagon Publishing
Discusses the experiences of the authors who worked on the Medication Matters Project with the Norah Fry Research Centre in Bristol. The research aimed to find out what people with learning difficulties think about taking psychotropic medications, which help people with mood or feelings. They asked what people know, who told them, if they thought they had a choice, and what information or support they wanted. Discusses the experiences of people with learning difficulties carrying out research.
Capacity to consent to participate to research: a recontextualization
- Authors:
- DYE Linda, et al
- Journal article citation:
- British Journal of Learning Disabilities, 32(3), September 2004, pp.144-150.
- Publisher:
- Wiley
Capacity to consent is an important concept when working with people with learning disabilities. The current concept is based on a dichotomous categorisation: people do or do not have capacity. Several studies have focused on capacity assessment. They report a range from 0 to 65% of people with learning disabilities identified as having capacity to consent. Findings from these reflect several limitations with the current concept. A recontextualization is needed to address these limitations, including the concept of risk and benefit assessment: the seriousness of the consequences determines the level of capacity needed for a specific decision. Moreover, the emergence of participatory research paradigms challenges the validity of such concepts. Therefore, it is proposed that it is more helpful to present the concept of capacity to consent within a broader contextual framework rather than as a unitary dichotomous categorisation.
Building bridges? The role of research support in self-advocacy
- Authors:
- CHAPMAN Rohhss, McNULTY Niall
- Journal article citation:
- British Journal of Learning Disabilities, 32(2), June 2004, pp.77-85.
- Publisher:
- Wiley
The Carlisle Research Group 'Co-op' is a group which aim to carry out 'person-led' research in a way that changes ideas and makes life better for people with learning disabilities. Six of the eight members in the group are labelled as having a learning difficulty, the two other people act in a role of involved support. In this article the members of the group with a support role explain what they do, highlight the changes occurring within the group, and to open up a debate as to the research support role in the self-advocacy movement. The article also includes a case study on the process of writing an article for a journal article.
‘I’m a researcher!’: working together to gain ethical approval for a participatory research study
- Authors:
- HAM Maria, et al
- Journal article citation:
- Journal of Learning Disabilities, 8(4), December 2004, pp.397-407.
- Publisher:
- Sage
In any research team individuals will bring different experiences and expertise to the study, but if research is to be truly participatory then there must be the opportunity for all of the research team to be involved in all stages of the research process if they so wish. This includes the stage of seeking and gaining ethical approval. To date, however, there does not appear to have been anything published about how people with intellectual disabilities can be supported to actively participate in this stage of the research process. This article seeks to address this gap. Preparing for the ethics committee, and gaining ethical approval, constitute an important learning experience. The authors hope that in sharing this with others that they will be able to learn from this experience and that the opportunities for other people with intellectual disabilities to become involved in research will increase.