ArticleHealth expectations : an international journal of public participation in health care and health policy2021
Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia.
Article in Health expectations : an international journal of public participation in health care and health policy, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
6 citing papers in PubMed, 8 citations in OpenAlex.
- People Living With Dementia and Their Families as Educators for Social Justice.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end-of-life.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Use of adapted or modified methods with people with dementia in research: A scoping review.Dementia (London, England) · 2023Article
- Developing the Resident Measure of Safety in Care Homes (RMOS): A Delphi and Think Aloud Study.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Supporting care home residents in the last year of life through 'Needs Rounds': Development of a pre-implementation programme theory through a rapid collaborative online approach.Frontiers in health services · 2022Article
- Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia.Health expectations : an international journal of public participation in health care and health policy · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe growing literature on Patient and Public Involvement and Engagement (PPIE) and dementia identifies specific problems related to the influence that 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 to make possible the involvement of a broader spectrum of people living with dementia.
objectiveThis study aimed to adapt the PPIE process to make participation in cocreation by people living with dementia accessible and meaningful across a spectrum of cognitive abilities.
designNarrative elicitation, informal conversation and observation were used to cocreate three vignettes based on PPIE group members' personal experiences of dementia services. Each vignette was produced in both narrative and graphic formats.
participantsNine people living with dementia and five family members participated in this study.
resultsUsing 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.
conclusionsMaking 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. PATIENT OR PUBLIC CONTRIBUTION: People with dementia and their families were involved in the design and conduct of the study, in the interpretation of data and in the preparation of the manuscript.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.