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    Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia

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    Publication date
    2021
    Author
    Capstick, Andrea
    Dennison, Alison
    Oyebode, Jan R.
    Healy, Lesley
    Surr, Claire A.
    Parveen, Sahdia
    Sass, C.
    Drury, Michelle
    Keyword
    Cocreation
    Co-creation
    Dementia
    Graphic art
    Narrative
    Seldom-heard groups
    Vignettes
    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 Attribution License (CC-BY 4.0).
    Peer-Reviewed
    Yes
    Open Access status
    Gold
    
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    Abstract
    Background: 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. Objective: 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.
    URI
    http://hdl.handle.net/10454/18590
    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
    https://doi.org/10.1111/hex.13332
    Type
    Article
    Collections
    Health Studies Publications

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