Abstract
Background: Historically, disabled people have been marginalised in research that traditionally adopted a medical model perspective. Since the 1970’s, there has been a shift from research on disabled people to research with disabled people with a strong emphasis on co-produced participatory research. Co-production involves disabled people working with academics to produce research and outcomes which are informed by the end user. This paper reflects on the role and experiences of peer researchers in co-producing a recent UK-wide research project called ‘Getting our Voices Heard’. This project sought to identify the best approaches for people with a learning disability and their supporting organisations to influence adult safeguarding policies, across the four jurisdictions of the UK. Methods: A co-produced participatory design was used to address the project aims; achieved through the establishment of a collaborative research team comprising academic researchers, key stakeholders and six peer researchers, each of whom had a learning disability. Semi-structured interviews were completed with senior policy makers. Following this, in each of the four Nations, an organisational case-study was completed (four in total). Organisations were purposively sampled to identify one organisation in each country which was recognised as being successful in influencing adult safeguarding policy. Data were gathered through focus groups discussions and semi-structured interviews with key stakeholders. Findings were developed into an Impact Strategy and Action Plan. Co-production methods were used throughout. Results: Six individuals with a learning disability were recruited and trained to work as peer researchers, involved at key stages of the project, working alongside a wider research team. The role and experiences of the peer researchers in the context of policy are presented. Peer researchers provided largely positive first-hand accounts of their experiences. The importance of collaboration, the invaluable role of Learning Disability support organisations, and the need for additional time and resources to facilitate co-production, was noted. Conclusion: Whilst peer researchers were positive about their experiences, some success in promoting co-produced research and areas for improvement were evident. Collaboration at all stages would have been strengthened with research funding which enabled involvement of all team members in all research activities.
Original language | English |
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Article number | 64 |
Pages (from-to) | 64 |
Number of pages | 12 |
Journal | BMC Research Involvement and Engagement |
Volume | 8 |
Issue number | 1 |
Early online date | 28 Nov 2022 |
DOIs | |
Publication status | Published - 28 Nov 2022 |
Bibliographical note
Funding Information:This project, was funded by Disability Research on Independent Living and Learning (DRILL), and was part of a wider DRILL research programme seeking to build better evidence about approaches which can enable disabled people to achieve independent living, and, as full citizens, take part socially, economically and politically within their societies. In this context, DRILL commissioned research on approaches that disabled persons have taken to exerting influence on a specific policy area.
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 coproduced research and pilot projects focused on exploring how disabled people can live as full citizens and take part socially, economically and politically.
Publisher Copyright:
© 2022, The Author(s).
Keywords
- Adult protection
- Adult safeguarding
- Co-production
- Learning disability
- Legislation
- Participatory design
- Policymaking
ASJC Scopus subject areas
- Health(social science)
- General Health Professions