ReviewHealth expectations : an international journal of public participation in health care and health policy2024
Emotion in public involvement: A conceptual review.
Review 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.
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.
- "It gives me confidence and value": evaluating All_Ears@UoS patient and public involvement and engagement (PPIE) group three years on.Research involvement and engagement · 2026Article
- Involving a black woman patient and public involvement group in maternal health methodology research: learning from the PROMISE Study.Research involvement and engagement · 2026Article
- "We don't get asked": including people with workforce experience as public contributors in a workforce-related study about homecare work towards the end-of-life.Research involvement and engagement · 2026Article
- Patient and Public Involvement and Engagement (PPIE) in methodological research: exploring challenges, tensions and learning from the perspectives of PPIE and researchers in the Realist Economic Evaluation Methods (REEM) study.Research involvement and engagement · 2026Article
- From tokenism to togetherness: the V.O.I.C.E. framework for safety-centred lived experience involvement in perinatal and parenting research.Research involvement and engagement · 2026Article
- Reflections on public involvement: learning from a personalised balance training intervention for individuals with chronic obstructive pulmonary disease.Research involvement and engagement · 2026Article
- No Ethics Needed? Towards an Ethics of Care for Public and Patient Involvement and Engagement.Health expectations : an international journal of public participation in health care and health policy · 2026Review
- Patient and Public Involvement and Engagement within a UK blood cancer cohort: a case study.Research involvement and engagement · 2026Article
- Patient Roles and Patient Knowledge in Learning Health Systems.The International journal of health planning and management · 2026Article
- Mixed identity is an identity: embracing the people involved in research partnerships.BMJ open · 2025Review
- Steps to embedding equality, diversity, and inclusion principles into research settings.Research involvement and engagement · 2025Article
- Patient-oriented research- it's personal: two BC SUPPORT unit patient partners sharing their journey in patient-oriented research.Research involvement and engagement · 2025Article
- Patient and public involvement and engagement: Do we need an 'ethical anchor'?Research involvement and engagement · 2024Article
- Emotion in public involvement: A conceptual review.Health expectations : an international journal of public participation in health care and health policy · 2024Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
Abstract
backgroundExperiential knowledge can aid in designing research by highlighting what an idea looks like from a patient and carer perspective. Experiential knowledge can be emotional, and this can create challenges at formal research meetings.
objectiveThe aim of this study was to consider the role of emotions in public involvement.
methodsThis is a conceptual review informed by relevant literature and reflection within the author team. A structured Scopus search was conducted in November 2021 and December 2022, identifying 18 articles that presented findings from patient and public involvement (PPI) research related to 'emotion'. We complemented the search with theory-generating articles related to the role of emotion and emotional labour in human life.
findingsStudy findings from the structured search were tabulated to identify recurring themes; these were as follows: emotional connections to the research topic can cause stressful as well as cathartic experiences of PPI, 'emotional work' is part of PPI when people are contributing with their experiential knowledge and the emotional aspect of 'lived experience' needs to be recognised in how PPI is planned and facilitated. These points were considered in relation to theoretical works and experiences within the author team. DISCUSSION: 'Emotion work' is often required of public collaborators when they contribute to research. They are asked to contribute to research alongside researchers, with knowledge that often contains emotions or feelings. This can be both upsetting and cathartic, and the environment of the research study can make the experience worse or better.
conclusionsThe emotional component of experiential knowledge can be challenging to those invited to share this knowledge. It is imperative that researchers, research institutions and health and care professionals adjust research meeting spaces to show an awareness of the emotional labour that is involved in PPI. PATIENT OR PUBLIC CONTRIBUTION: This review was initiated after a meeting between carers and family members of residents in care homes and researchers. The review is co-written by a group of three researchers and three carers and family members. Regular online meetings were held during the draft stages to incorporate people's views and ideas. Data extracted from the review were presented to the group of public collaborators in a variety of formats (e.g., posters, slideshows, text and verbally) to facilitate shared sense-making and synthesis of the literature.
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.