Loading...
Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia
Capstick, Andrea Dennison, Alison Healy, Lesley Surr, Claire A. Parveen, Sahdia Sass, C. Drury, Michelle
Capstick, Andrea
Dennison, Alison
Healy, Lesley
Surr, Claire A.
Parveen, Sahdia
Sass, C.
Drury, Michelle
Publication Date
2021
End of Embargo
Supervisor
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/)
Peer-Reviewed
Yes
Open Access status
openAccess
Accepted for publication
2021-07-16
Institution
Department
Awarded
Embargo end date
Collections
Additional title
Abstract
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.
Version
Published version
Citation
Capstick A, Dennison A, Oyebode JR et al (2021) Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia. Health Expectations. 24(5): 1890-1900.
Link to publisher’s version
Link to published version
Link to Version of Record
Type
Article