ArticlePalliative medicine2021
Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation.
Article in Palliative medicine, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 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
32 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Patient and Public Involvement Work With Parents of Children With Life-Limiting Conditions and Bereaved Parents: A Rapid Systematic Review.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- Total uncertainty: a systematic review and thematic synthesis of experiences of uncertainty in older people with advanced multimorbidity, their informal carers and health professionals.Age and ageing · 2022Pooled it
- Developing best practices for engaging and involving palliative care patients in research in sub-Saharan Africa.Research involvement and engagement · 2026Article
- Enablers to successful patient and public involvement in Palliative Care Research: Qualitative perspectives of public members and Program Coordinators.Palliative medicine · 2026Article
- Identifying aspects of palliative and end-of-life care that are most important to people with lived experience and can be measured using routine data: a series of patient and public involvement workshops.Journal of patient-reported outcomes · 2026Article
- A cognitive accessibility review of national palliative care resources with people with cognitive disabilities.BMC palliative care · 2026Article
- Assessing unstated assumptions of patient and public involvement in palliative care with story completion and typology analysis.BMC palliative care · 2026Article
- Using co-design to identify healthcare priorities for patients with incurable head and neck cancer.BMC health services research · 2026Article
- Participatory development of patient-targeted guideline material in palliative care: A qualitative evaluation.Palliative care and social practice · 2026Article
- What approaches are used to facilitate people from under-served communities getting involved with health research? A public contributor led review.Research involvement and engagement · 2025Review
- Reflections on the impact of the Lived Experience Group in the James Lind Alliance Palliative and End of Life Care Priority Setting Partnership Refresh.Research involvement and engagement · 2025Article
- Article
- Use of sedative drugs in specialist palliative care (iSedPall): a multi-modal intervention pilot study protocol.Pilot and feasibility studies · 2025Article
- Exploring the challenges experienced by patients and families using palliative and end-of-life care services: A qualitative focus group study.Palliative & supportive care · 2025Article
- Establishing patient partners' roles on research teams: a scoping review.Research involvement and engagement · 2024Article
- Evaluating parent and public involvement activities within a paediatric palliative care research centre: Route map to impactful and meaningful engagement.Palliative medicine · 2024Article
- Development of the TIFFIN recommendations for co-producing palliative and end-of-life care research with individuals with lived experience of homelessness: A qualitative study.Palliative medicine · 2024Article
- Supporting best practice in reflexive thematic analysis reporting inPalliative medicine · 2024Review
- Emotion in public involvement: A conceptual review.Health expectations : an international journal of public participation in health care and health policy · 2024Review
- A framework for more equitable, diverse, and inclusive Patient and Public Involvement for palliative care research.Research involvement and engagement · 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
12 authors.
Funding
Abstract
backgroundPublic involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness.
aimTo evaluate a strategy for public involvement in palliative care and rehabilitation research, to identify successful approaches and areas for improvement.
designCo-produced qualitative evaluation using focus groups and interviews. Thematic analysis undertaken by research team comprising public contributors and researchers. SETTING/
participantsResearchers and public members from a palliative care and rehabilitation research institute, UK.
resultsSeven public members and 19 researchers participated. Building and maintaining relationships, taking a flexible approach and finding the 'right' people were important for successful public involvement. Relationship building created a safe environment for discussing sensitive topics, although public members felt greater consideration of emotional support was needed. Flexibility supported involvement alongside unpredictable circumstances of chronic and life-limiting illness, and was facilitated by responsive communication, and opportunities for in-person and virtual involvement at a project- and institution-level. However, more opportunities for two-way feedback throughout projects was suggested. Finding the 'right' people was crucial given the diverse population served by palliative care, and participants suggested more care needed to be taken to identify public members with experience relevant to specific projects.
conclusionWithin palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.
Indexed as
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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.