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

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 Schola...

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Main Authors: Di Lorito, Claudio, Birt, Linda, Poland, Fiona, Csipke, Emese, Gove, Dianne, Diaz-Ponce, Ana, Orrell, Martin
Format: Article
Published: Wiley 2017
Subjects:
Online Access:https://eprints.nottingham.ac.uk/36050/
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author Di Lorito, Claudio
Birt, Linda
Poland, Fiona
Csipke, Emese
Gove, Dianne
Diaz-Ponce, Ana
Orrell, Martin
author_facet Di Lorito, Claudio
Birt, Linda
Poland, Fiona
Csipke, Emese
Gove, Dianne
Diaz-Ponce, Ana
Orrell, Martin
author_sort Di Lorito, Claudio
building Nottingham Research Data Repository
collection Online Access
description 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.
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spelling nottingham-360502020-05-04T19:58:59Z https://eprints.nottingham.ac.uk/36050/ 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 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. Wiley 2017-01 Article PeerReviewed Di Lorito, Claudio, Birt, Linda, Poland, Fiona, Csipke, Emese, Gove, Dianne, Diaz-Ponce, Ana and Orrell, Martin (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). pp. 58-67. ISSN 1099-1166 Co-research Dementia Participatory Research Patient and Public Involvement Peer-research http://onlinelibrary.wiley.com/doi/10.1002/gps.4577/full doi:10.1002/gps.4577 doi:10.1002/gps.4577
spellingShingle Co-research
Dementia
Participatory Research
Patient and Public Involvement
Peer-research
Di Lorito, Claudio
Birt, Linda
Poland, Fiona
Csipke, Emese
Gove, Dianne
Diaz-Ponce, Ana
Orrell, Martin
A synthesis of the evidence on peer-research with potentially vulnerable adults: how this relates to dementia
title A synthesis of the evidence on peer-research with potentially vulnerable adults: how this relates to dementia
title_full A synthesis of the evidence on peer-research with potentially vulnerable adults: how this relates to dementia
title_fullStr A synthesis of the evidence on peer-research with potentially vulnerable adults: how this relates to dementia
title_full_unstemmed A synthesis of the evidence on peer-research with potentially vulnerable adults: how this relates to dementia
title_short A synthesis of the evidence on peer-research with potentially vulnerable adults: how this relates to dementia
title_sort synthesis of the evidence on peer-research with potentially vulnerable adults: how this relates to dementia
topic Co-research
Dementia
Participatory Research
Patient and Public Involvement
Peer-research
url https://eprints.nottingham.ac.uk/36050/
https://eprints.nottingham.ac.uk/36050/
https://eprints.nottingham.ac.uk/36050/