ArticleHealth expectations : an international journal of public participation in health care and health policy2020
Adding to the knowledge on Patient and Public Involvement: Reflections from an experience of co-research with carers of people with dementia.
Article in Health expectations : an international journal of public participation in health care and health policy, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 36 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
36 citing papers in PubMed, 2 syntheses or guidelines pooled it, 58 citations in OpenAlex.
- A Systematic Review of Dementia Research Priorities.Journal of geriatric psychiatry and neurology · 2024Pooled it
- Pooled it
- Promoting Activity, Independence, and Stability in Early Dementia and mild cognitive impairment (PrAISED): randomised controlled trial.BMJ (Clinical research ed.) · 2023Trial
- Trial
- Challenges and needs in dementia care: people with dementia and family caregivers' experiences from diagnosis to follow-up in Swedish primary care: a qualitative study.Scandinavian journal of primary health care · 2026Article
- Family Carer Involvement in Dementia Care Research: A Scoping Review and Expert Consultation.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Young people's lived experience expertise: Insights from the DigiCAT project to develop a counterfactual analysis tool for mental health data.JCPP advances · 2026Article
- Evaluation and lessons learned regarding Public Involvement: a panel advising on an Alzheimer's disease and related dementia cohort study.Research involvement and engagement · 2026Article
- Understanding the Scope, Intent and Extent of Published Conceptual Frameworks of Frameworks for Patient and Public Involvement in Health and Social Care Research: A Rapid Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Research in Partnership With Older People-Involvement in Conducting and Analysing Focus Groups.Health expectations : an international journal of public participation in health care and health policy · 2025Observational
- Experience, Process, and Impact of Involving Informal Caregivers of People With Dementia as Public Contributors to Inform the Development of a Complex Intervention: A Mixed-Methods Study.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Peer researchers in NHS research: approved in principle, undermined in practice?Research involvement and engagement · 2025Article
- Moving beyond tokenism: Sustaining engagement of persons living with dementia in identifying emergency research priorities.Journal of the American Geriatrics Society · 2025Article
- Lessons learned from the participatory development of a framework to actively involve people living with dementia, individuals from their social networks, and healthcare professionals in systematic reviews: the DECIDE-SR study.Research involvement and engagement · 2025Article
- The Importance of Lived Experience: A Scoping Review on the Value of Patient and Public Involvement in Health Research.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Establishing patient partners' roles on research teams: a scoping review.Research involvement and engagement · 2024Article
- Involvement of family caregivers in dementia care research: a scoping review protocol.Systematic reviews · 2024Article
- Citizens' perspectives on healthy weight approaches in low SEP neighborhoods: a qualitative study from a systems perspective.BMC public health · 2024Article
- Patient and public involvement and engagement with underserved communities in dementia research: Reporting on a partnership to co-design a website for postdiagnostic dementia support.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- 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
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 2 institutions in 2 countries.
Funding
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. 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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
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.