PARTICIPATION IN RESEARCH: Reference, or advisory, groups involving disabled people: reflections from three contrasting research projects

Abstract

Increasingly in recent years, the involvement of disabled people as co-researchers has been regarded as 'good practice'. This has been informed by growing participatory and emancipatory research paradigms as well as user-focused policy imperatives. The benefits of these shifts apply to the research itself (improved definition, direction, applicability and impact), to non-disabled researchers (personal growth and enhanced understanding of the reflexive research process), to people with disabilities involved as researchers or collaborators (personal growth and enhanced opportunities), and (if externally funded) to the funder whose ways of operating are likely to be challenged profoundly. In this paper, Ann Lewis, Sarah Parsons and Christopher Robertson (based at the University of Birmingham), Anthony Feiler, Beth Tarleton and Debby Watson (based at the University of Bristol) and Richard Byers, Jill Davies, Ann Fergusson and Claire Marvin (based at the University of Cambridge) discuss the work of three independent research teams carrying out concurrent projects. The authors share their experiences of trying to take seriously the participation of disabled people in research. All three projects were informed, to a significant degree, by their respective reference groups of disabled people. The work of these groups in each of the three projects is outlined and then discussed in relation to five common themes: formal contracts with members of reference groups; considerations concerning drawing on an established reference group; planning for reference group involvement; style of reference group involvement; and building on good practice.

Involving Young Disabled People in the Research Process: The Experiences of the PIE Research Project Team

“…A common criticism of participatory research is that it can become ‘tokenistic’ and that the disabled people involved can become what are known as the ‘usual suspects’, in that once they are known to researchers, they are frequently asked to participate (Lewis and others, ). We believe that we avoided these pitfalls, in that neither of the young co‐researchers had done this type of work before and they were chosen for the task by their peers.…”

“…The use of reference groups in research with disabled people, including the PIE project, is discussed in Lewis and others ().We were fortunate that this particular group indicated, via contact with their facilitator, that they were keen to work with us. We met with the group facilitator prior to the first meeting to establish that we would pay costs for the meetings that we attended, including support costs and travel and went over some ‘ground rules’.…”

Engaging with and moving on from participatory research: A personal reflection

“…Danieli and Woodhams 2005;Lewis et al 2008), young children (e.g. Danieli and Woodhams 2005;Lewis et al 2008), young children (e.g.…”

Co-creating an Online TimeBank for Inclusive Research

“…Payment for time and contributions is a particularly difficult and longstanding issue, both on a practical and ethical basis. Practically, payments for (often) unsalaried community users, or community users working in other jobs (such as schools), can be highly problematic because payments for research contributions may affect benefits and other income [12]. Ethically, if there is an aspiration to include community members from the very earliest stages of projects, including project planning and initial ideas, then there is a fundamental inequity between academic researchers who are usually salaried and paid for their time irrespective of whether project funding is in place vs. community members whose involvement is likely to be more dependent on securing project-specific funding [16].…”