Participatory research with men with learning disability: informed consent

Abstract

Purpose The purpose of this paper is: to add to current understandings of how people with learning disability make informed choices in relation to participation in research; and to highlight both the competencies of people with learning disability in relation to participation in research and the impact of their involvement on the quality of that research. Design/methodology/approach A participatory/collaborative approach, designed to engage participants in both developing processes for data generation and participating in the analysis of that data, was employed. Findings The complexities of research and the implications of participation were poorly understood. Collaborative, recursive approaches are important for developing understanding. Participation in the research approach by people with learning disabilities enabled the generation of new understandings. Research limitations/implications The small sample size means the collaborative, recursive approach, whilst researched in depth, has not been widely generalised. Whilst there have been some difficulties in taking this forward at the study site, a second phase with another 6 men with learning disability has been carried out. Four of the men from the original study acted as co‐facilitators. Although it was not formally evaluated it was considered to be a helpful way of raising issues in relation to participation in research. Practical implications There needs to be more careful consideration of the broader issues behind informed consent. A recursive approach to developing informed choice (rather than a single engagement) needs to be embedded in practice. Peer to peer collaboration should be recognised as an approach to developing informed choice about participation. Originality/value This paper will be of value to people researching with people with learning disability. It demonstrates that, given appropriate opportunities, people with learning disability can understand some of the more complex concepts in relation to participation in research and so should be involved. It offers clear insights about how this may be achieved and raises the importance of including people with learning disability as active research participants in matters that affect their own lives.

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