Yes / The growing literature on Patient and Public Involvement and Engagement (PPIE) and dementia identifies specific problems related to the influence involvement has on research outcomes, over-reliance on family members as proxies, and lack of representation of seldom-heard groups. Adaptations to the PPIE process are therefore needed in order to make possible the involvement of a broader spectrum of people living with dementia.
To adapt the PPIE process in order to make participation in co-creation by people living with dementia accessible and meaningful across a spectrum of cognitive abilities.
Design: Narrative elicitation, informal conversation, and observation were used to co-create three vignettes based on PPIE group members’ personal experience of dementia services. Each vignette was produced in both narrative and graphic formats.
Participants: Nine people living with dementia and five family members.
Results: Using enhanced methods and outreach it was possible to adapt the PPIE process so that not only family members and people with milder cognitive difficulties could participate, but also those with more pronounced cognitive problems whose voices are less often heard.
Conclusions: Making creative adaptations is vital in PPIE involving people living with dementia if we wish to develop inclusive forms of PPIE practice. This may, however, raise new ethical issues, which are briefly discussed. / National Institute for Health Research. Grant Number: PR-R10-0514-120006
| Identifer | oai:union.ndltd.org:BRADFORD/oai:bradscholars.brad.ac.uk:10454/18590 |
| Date | 12 August 2021 |
| Creators | Capstick, Andrea, Dennison, Alison, Oyebode, Jan, Healy, Lesley, Surr, Claire A., Parveen, Sahdia, Sass, C., Drury, Michelle |
| Source Sets | Bradford Scholars |
| Language | English |
| Detected Language | English |
| Type | Article, Published version |
| Rights | © 2021 The Authors. Health Expectations published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons CC-BY license (https://creativecommons.org/licenses/by/4.0/), CC-BY |
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