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.
Keywords: Adult protection; Adult safeguarding; Co-production; Learning disability; Legislation; Participatory design; Policymaking.
Since the 1970’s, there has been a shift from research on disabled people to research with disabled people. This is often referred to as co-produced research. Co-production has a wide definition but includes disabled people working with academics to produce research and outcomes which neither group could achieve by working in isolation. This paper presents the co-production methodology used to conduct a research project called ‘Getting our Voices Heard’. This project, sought to find the best way to get the voices of people with a learning disability heard inpolicy development in the UK.We explain how this research was carried out, using a co-produced participatory design. We established a research team with professional researchers from a university, who worked with peer researchers. Peer researchers are people who have lived experience of the issue being studied. In this project, we worked with six peer researchers who all had a learning disability.The experiences of the peer researchers, and ways in which the peer researchers were involved at each stage of the project are discussed. The peer researchers described feeling positive about their role and felt involved. We show that working together is important and recommend that additional time and resources are essential for this joint working.
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