A synthesis of the evidence on peer-research with potentially vulnerable adults: how this relates to dementia

Di Lorito, Claudio; Birt, Linda; Poland, Fiona; Csipke, Emese; Gove, Dianne; Diaz-Ponce, Ana; Orrell, Martin

Abstract

Background. There is limited literature around peer-research in dementia. This study aims to identify the benefits, the risks and the practical challenges and to develop a model of good-practice in peer-research with people with dementia.

Methods. We searched on PsycInfo, PubMed and Google Scholar for empirical investigations or discussion papers on peer-research. Given the limited literature in the field of dementia, we included studies with groups who share similar demographics (older people), experience of stigma (mental health service users) and exclusion from research (people with learning disabilities). We applied no restrictions on language and publication date.

Analysis. We identified three themes: the potential benefits, the potential risks and the practical challenges of peer-research. We developed a model of good practice. The European Working Group of People With Dementia (EWGPWD) reviewed our paper and added to our findings.

Results. We included 7 papers. Potential benefits of peer-research included enriched data and empowering people with dementia. Potential risks included power differentials between researchers and issues of representativeness. The practical issues for good practice included the training of peer-researchers, defining involvement and roles, working with cognitive impairment and considering resource implications. The EWGPWD emphasised the importance of equality issues.

Conclusion. Involving people with dementia in peer-research can generate several benefits, including empowerment and opportunities for inclusion for the peer-researchers and the research participants living with dementia, challenging academics’ traditional views on research processes and gathering enhanced research data. There remains a need for further research on the impact of peer-research in dementia studies.

Citation

Di Lorito, C., Birt, L., Poland, F., Csipke, E., Gove, D., Diaz-Ponce, A., & Orrell, M. (2017). A synthesis of the evidence on peer-research with potentially vulnerable adults: how this relates to dementia. International Journal of Geriatric Psychiatry, 31(1), 58-67. https://doi.org/10.1002/gps.4577

• Journal Article Type: Article
• Acceptance Date: Aug 17, 2016
• Online Publication Date: Sep 15, 2016
• Publication Date: Jan 1, 2017
• Deposit Date: Oct 10, 2016
• Publicly Available Date: Oct 10, 2016
• Journal: International Journal of Geriatric Psychiatry
• Print ISSN: 0885-6230
• Electronic ISSN: 1099-1166
• Publisher: Wiley
• Peer Reviewed: Peer Reviewed
• Volume: 31
• Issue: 1
• Pages: 58-67
• DOI: https://doi.org/10.1002/gps.4577
• Keywords: Co-research, Dementia, Participatory Research, Patient and Public Involvement, Peer-research
• Public URL: https://nottingham-repository.worktribe.com/output/970884
• Publisher URL: http://onlinelibrary.wiley.com/doi/10.1002/gps.4577/full
• Additional Information: This is the peer reviewed version of the following article: Di Lorito, C., Birt, L., Poland, F., Csipke, E., Gove, D., Diaz-Ponce, A., and Orrell, M. (2016) A synthesis of the evidence on peer research with potentially vulnerable adults: how this relates to dementia. Int J Geriatr Psychiatry, doi: 10.1002/gps.4577 which has been published in final form at http://onlinelibrary.wiley.com/doi/10.1002/gps.4577/full This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving.