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Lookup NU author(s): Dr Marie Poole
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd. Introduction: Despite the advancements in Patient and Public Involvement and Engagement (PPIE), the voices of traditionally underserved groups are still poorly reflected in dementia research. This study aimed to report on a PPIE partnership between academics and members of the public from underserved communities to co-design Forward with Dementia—Social Care, a resource and information website supporting people receiving a dementia diagnosis. Methods: The PPIE partnership was set up in four stages: 1–identifying communities that have been under-represented from PPIE in dementia research; 2—recruiting PPIE partners from these communities; 3—supporting PPIE partners to become confident to undertake their research roles and 4—undertaking research co-design activities in an equitable fashion. Results: To address under-representation from PPIE in dementia research we recruited seven PPIE partners from Black, Asian and other minority ethnic groups; lesbian, gay, bisexual, transgender, queer+ communities; remote/rural area; religious minorities and partners living with rare forms of dementia. The partners met regularly throughout the project to oversee new sections for the study website, refine existing content and promote the website within their communities. Conclusion: Strategies can be used to successfully recruit and involve PPIE partners from underserved communities in co-design activities. These include networking with community leaders, developing terms of reference, setting out ‘rules of engagement’, and investing adequate resources and time for accessible and equitable involvement. These efforts facilitate the co-design of research outputs that reflect the diversity and complexity of UK contemporary society. Patient or Public Contribution: This study received support from seven members of the public with lived experience of dementia from communities that have been traditionally underserved in dementia research. These seven members of the public undertook the role of partners in the study. They all equally contributed to the study design, recruitment of participants, development and revision of topic guides for the interviews and development of the website. Three of these partners were also co-authors of this paper. On top of the activities shared with the other partners, they contributed to write independently of the academic team the section in this paper titled ‘Partners' experiences, benefits and challenges of the partnership’. Further, they provided input in other sections of the paper on a par with the other (academic) co-authors.
Author(s): Di Lorito C, Griffiths S, Poole M, Kaviraj C, Robertson M, Cutler N, Wilcock J
Publication type: Article
Publication status: Published
Journal: Health Expectations
Year: 2024
Volume: 27
Issue: 1
Online publication date: 20/02/2024
Acceptance date: 01/02/2024
Date deposited: 05/03/2024
ISSN (print): 1369-6513
ISSN (electronic): 1369-7625
Publisher: John Wiley and Sons Inc.
URL: https://doi.org/10.1111/hex.13992
DOI: 10.1111/hex.13992
Data Access Statement: The data that support the findings of this study are available from the corresponding author upon reasonable request.
PubMed id: 38376077
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