Having a Voice: Involving People with Learning Difficulties in Research

Abstract

This article summarises a symposium presented at the 1993 BILD conference by researchers based at the Norah Fry Research Centre, University of Bristol. The linking theme of the several contributions to the symposium was the need to involve people with learning difficulties in research. The article argues that a traditional model of research, in which detached observers set the agenda and present the results to their funders and academic colleagues, should not be seen as the only acceptable approach to research. This article advocates involving people with learning difficulties at every stage of the research process. The article then describes several pieces of work, carried out by or with the support of staff at Norah Fry, which illustrate the Centre's attempts to put this principle into practice. It is argued that the end result is better research, which is of more direct benefit to people with learning difficulties.This article summarises a symposium presented at the 1993 BILD conference by researchers from the Norah Fry Research Centre at the University of Bristol. The theme of the presentation was the involvement of people with learning difficulties in research.After exhorting service providers to involve service users in a whole range of activities, from hiring and firing staff to reviewing complaints procedures, we felt it was time to turn the spotlight on our own activities. Until recently, much of the research carried out in the field of disability has treated people with learning difficulties as objects of study, rather than people with opinions and information about what is important in their own lives. This traditional model of conducting research, where researchers act as detached observers, presenting their findings only to their funders and academic colleagues, has become the subject of much debate. This article briefly sets out the ways in which researchers at the Norah Fry Research Centre have tried to develop a more participatory approach to conducting research. We define 'research to include activities relating to making decisions about what to study, planning and carrying out the work itself, and producing and disseminating the findings in formats appropriate to the intended audi-ence. The article is therefore divided into three sections: setting the agenda, involvement in the research process, and making the results of research more accessible.

Researching Together

“…Stalker (1998), Minkes et al (1995) and Lloyd et al (1996) all found problems with involving self advocates in data analysis, and we cannot pretend to have found all the answers. One very important ingredient for analysis is having periods of concentrated time, on a frequent basis.…”

Exploring the value of service user involvement in data analysis: ‘Our interpretation is about what lies below the surface’

“…In the setting of learning difficulties, Minkes et al (1995) suggest that involving people with learning difficulties in data analysis is thus far ineffective. In examining the nature of selfadvocacy for people with learning difficulties, Goodley (1998, 420) raises a question about who actually owns the analysis and who it is who has the final say on what is included or not in a participatory analysis.…”

Involving users in evaluation: The social relations of user participation in health research

“…Not least, the process of doing research relies heavily on intellectual skills and there are groups who, as a result of disability or health problems, experience intellectual impairment (Ward, 1997a).This is not to say that impairments of this nature present an insurmountable barrier. Researchers within a variety of health settings have provided a range of examples of research practice that have successfully enabled meaningful involvement for service users who might otherwise have been excluded from research (Beeforth et al, 1994;Minkes et al, 1995;Beresford, 1997;Ward, 1997b, Rose et al, 1998. Such studies stress the importance of context in relation to researchers nding the means and methods to enable shared relationships to take place within research settings.…”