Involving people with learning disabilities in research: issues and possibilities

Authors


  • Box 1 Key points: ethics and philosophy of participatory research

    • Participatory research involves people with learning disabilities in the research process with the support of sympathetic non-learning-disabled people. This type of research focuses on the experiences of people and is qualitative in approach. Both normalisation and the social model of disability can influence this research. The accountability of the researcher is to the funding body.

    • Emancipatory research is based on the social model of disability and aims to promote social change. People with disabilities control the research process, which can be qualitative or quantitative. The accountability of the researcher is to the people with disabilities.

    • Participatory research can be seen as an intermediate stage towards emancipatory research.

  • Box 2 Key points: methodologies that have been employed to promote participatory approaches

    • Nar  rative and life history research enables individuals to tell their own stories. These may be autobiographies or autobiographical, i.e. a collage of events moulded into a single picture.

    • Other case study approaches have been used in participation with people with learning disabilities that have aims beyond the articulation of the person's story. These include: participative action research, where the aim is social change; theory-generating approaches influenced by grounded theory; and quality of life approaches that use discourse analysis.

    • The commitment to participation remains severely challenged where people with learning disabilities have severely impaired communication. This challenge can be mitigated through the triangulation of multiple sources of evidence. However, caution must remain around the levels of interpretation involved.

  • Box 3 Key points: methods employed to increase accessibility of the research process

    • Developing an understanding of what is meant by research is fundamental to involving people with learning disabilities in the research process. It is also essential to developing and maintaining consent.

    • Group processes have been fundamental to enabling people with learning disabilities and the sympathetic non-learning-disabled people supporting them to develop skills, experience and confidence in the research process.

    • Researchers involved in participative research with people with learning disabilities are committed to rigour in the research process.

    • Access to and the dissemination of research involving people with learning disabilities produces the need to have reports in different formats for different audiences. However, this also brings with it a challenge, since this can work to maintain a division between people with learning disabilities and non-learning-disabled people.


Tony Gilbert School of Social Work and Primary Care Faculty of Health and Social Work University of Plymouth Drake Circus Plymouth PL4 8AA UK E-mail: anthony.gilbert@plymouth.ac.uk

Abstract

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 the views and opinions of people with learning disabilities. One key outcome of this shift is that some of the 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 it has real consequences for people working in health and social care. The present paper sets out to explore some of the developments and challenges in research with people with learning disabilities. The author provides a selective overview of developments with the aim of demonstrating the richness, ingenuity and potential of research involving people with learning disabilities. The paper is divided into three broad sections that focus on: (1) the ethics and philosophy of participatory research; (2) the methodologies employed at particular points in the research process that are designed to ensure the involvement of participants in research; and (3) 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.

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