Abstract
BackgroundPatient and Public Involvement (PPI) in research ensures that publicly funded research reflects the priorities of the people who will be affected by its results. Co‐research, a branch of PPI, is equal partnership between academic researchers and members of the public, who steer and conduct research together.ObjectivesTo propose a model for good practice in co‐researching with carers of people with dementia, by reporting and synthesizing the personal reflections of the academic and lay researchers around the methodological issues, benefits, and challenges of co‐research.DesignAn academic researcher and two lay researchers with lived experience of caring with someone with dementia collaborated in all stages of a qualitative research study, including development of the research protocol and topic guide, data collection, analysis and synthesis, and dissemination of findings. Throughout the study, the academic and lay researchers annotated reflections of their experience in personal diaries. Data from the diaries were synthesized and mapped out in a model for good practice in co‐research.ResultsCo‐research yielded benefits for all those involved and on research outputs. There were practicalities and challenges that required extra resources, in order to make the involvement of lay researchers meaningful and effective.DiscussionThe model for good practice illustrates overarching and stage‐specific guidelines, which can inform researchers and members of the public wishing to undertake good practice in co‐research.
Highlights
Patient and Public Involvement (PPI) is involvement in research of members of the public who have lived experience of the phenomenon under investigation
This methodology paper aimed to add to the existing knowledge of good practice in PPI, by reporting on an experiment of co-research with carers of people with dementia in the context of a large randomized controlled trial (RCT) (PrAISED) and by developing, based on results, a model for good practice (Figure 3)
In line with the current PPI standards,[8,28] two PPI members with experience of caring for someone with dementia and an academic researcher collaborated as equals in all stages of the research cycle, including designing the study protocol, developing the topic guide, collecting and analysing data, and disseminating research findings
Summary
Patient and Public Involvement (PPI) is involvement in research of members of the public who have lived experience of the phenomenon under investigation. Objectives: To propose a model for good practice in co-researching with carers of people with dementia, by reporting and synthesizing the personal reflections of the academic and lay researchers around the methodological issues, benefits, and challenges of co-research. Design: An academic researcher and two lay researchers with lived experience of caring with someone with dementia collaborated in all stages of a qualitative research study, including development of the research protocol and topic guide, data collection, analysis and synthesis, and dissemination of findings. Discussion: The model for good practice illustrates overarching and stage-specific guidelines, which can inform researchers and members of the public wishing to undertake good practice in co-research
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