Peer researchers’ experiences of a co-produced research project on supported decision-making

Paul Webb, David Falls, Fionnuala Keenan, Barbara Norris, Aine Owens, Gavin Davidson, Rosalie Edge, Berni Kelly, Aisling Mclaughlin, Lorna Montgomery, Christine Mulvenna, Rebecca Shea Irvine

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Abstract

Background
Making decisions about your own life is a key aspect of independence, freedom, human rights and social justice. There are disabled people who, without support, would be assessed as incapable of making certain decisions but with the appropriate support are capable of making those decisions and so to not provide that support infringes their rights, undermines their autonomy and reinforces their exclusion from society. However, there is limited research evidence available about disabled people’s experiences of the range of approaches provided to support decision-making. This article will explore the experiences of four peer researchers who co-produced a research project on how people have, or have not been, supported to make their own decisions. Two of the peer researchers have experience of mental health problems and two are people with an intellectual disability. The article refers to peer research because its subject matter is the relevant lived experience of people. Peer research is therefore an approach within the broader areas of participatory research and co-production.

Methods
The peer researchers interviewed 21 people with mental health problems and 20 people with an intellectual disability to gain an in-depth understanding of their experiences and preferences for how decision-making should be supported. Peer researcher experiences at each stage of the study from design to analysis were explored using data collected from the peer researchers via blogs written at early stages of the study, discussions at team meetings as the fieldwork progressed and at a final workshop at the end of the study which gave the peer researchers the opportunity to focus on their overall reflections of being a peer researcher. The article also discusses motivations to undertake the peer research role, the process of co-production and the challenges negotiated during the study.

Results
The peer researchers reported a number of positive effects of being involved in the research project which included improvements in skills and self-confidence.

Conclusion
The peer researchers’ involvement challenged assumptions about the inability of people with an intellectual disability and/or mental health problems to participate proactively in a research project whilst also highlighting the importance of training for all team members.
Original languageEnglish
Article number70
Pages (from-to)1-10
Number of pages10
JournalResearch Involvement and Engagement
Volume8
Issue number1
Early online date7 Dec 2022
DOIs
Publication statusPublished (in print/issue) - 7 Dec 2022

Bibliographical note

Funding information:
This research was funded as part of the Disability Research on Independent Living & Learning (DRILL) Programme. DRILL was fully funded by the Big Lottery Fund and delivered in partnership by Disability Action, Disability Rights UK, Disability Wales and Inclusion Scotland. The DRILL Programme was led by disabled people and funded co-produced research and pilot projects focused on exploring how disabled people can live as full citizens and take part socially, economically and politically.

Keywords

  • Peer research
  • Experiential expertise
  • Benefits and challenges of co-production
  • Research

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