SynthesisHealth expectations : an international journal of public participation in health care and health policy2024
Participatory research with carers: A systematic review and narrative synthesis.
Synthesis in Health expectations : an international journal of public participation in health care and health policy, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis 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
14 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Participatory research with carers: A systematic review and narrative synthesis.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- Shared book reading to promote mental well-being among young people with and without Down syndrome: a pilot dyadic randomized controlled trial.Frontiers in public health · 2025Trial
- 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
- Embedding Lived Expertise into Military and Veteran Medical Research.Military medicine · 2026Article
- Stakeholder-driven assessment of optimal waste-to-energy plant selection in the Tamale metropolitan area using the analytical hierarchy process.Scientific reports · 2026Article
- Co-Production With Mental Health Family Carers: The Value, Outcomes and Benefits for Family Carers and Academic Researchers.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Methods of Engaging Interest-Holders in Healthcare Evidence Syntheses: A Scoping Review.Cochrane evidence synthesis and methods · 2026Review
- The advocacy effect: a grounded theory study on the inclusion of caregivers or nearest support persons in research to better understand patient outcomes in rheumatoid arthritis.Rheumatology international · 2025Article
- 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
- How are patient partners involved in health service research? A scoping review of reviews.Research involvement and engagement · 2025Review
- Peer researchers in NHS research: approved in principle, undermined in practice?Research involvement and engagement · 2025Article
- Participatory methods in designing digital health interventions for informal caregivers of people with dementia. A systematic review.Internet interventions · 2025Article
- The feasibility of using photovoice as a loneliness intervention with older Myanmar migrants.Annals of the New York Academy of Sciences · 2025Article
- Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
introductionAs patient and public involvement (PPI) in research has become increasingly common, research-based recommendations on its principles and impacts have been established. The specifics of conducting PPI are likely to differ when involving different groups. Family/informal carers for those with health conditions or disabilities have a lot to contribute to research, but instances of their involvement have yet to be reviewed.
objectiveTo systematically review and synthesize studies where family/informal carers have been involved in the research process, to develop an understanding of the benefits, barriers and facilitating factors.
methodsA search of five electronic databases was conducted using a combination of terms relating to carers, involvement and research. A grey literature search, expert consultation and hand-searching were also used. Following screening, data extraction and quality assessment, a narrative synthesis incorporating thematic analysis was conducted.
findingsA total of 55 studies met the inclusion criteria, with diverse design and participatory approaches. Four themes were identified, relating to the outcomes, challenges, and practicalities of involving carers: (re) building relationships with carers; carers as equals not afterthoughts; carers have unique experiences; carers create change. Full involvement throughout the research was not always possible, due to barriers from the research world and responsibilities of the caring role. The literature demonstrated ways for carers to contribute in ways that suited them, maximizing their impact, while attending to relationships and power imbalances.
conclusionBy summarizing the reported instances of carer involvement in research, this review brings together different examples of how successful research partnerships can be built with carers, despite various challenges. Carers are a heterogeneous group, and participatory approaches should be tailored to specific situations. Wider understanding of the challenges of conducting empowering research with carers, and the resources required to address these, are needed. PATIENT AND PUBLIC INVOLVEMENT: The initial findings and themes were presented to a group of carers who had been involved in research and whose reflections informed the final synthesis.
Indexed as
Identifiers
What Socratic 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 Socratic graph.