ReviewPalliative medicine2019
Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review.
Review in Palliative medicine, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06310434 (Analysis of COMPASsion and Humanisation of Adolescents Facing the End-of-life Processes), which is not on this map. Cited by 45 papers, 4 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.
Analysis of COMPASsion and Humanisation of Adolescents Facing the End-of-life Processes: a Mixed-method Participatory Project
Who cites it
45 citing papers in PubMed, 4 syntheses or guidelines pooled it, 99 citations in OpenAlex.
- 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
- Evaluation of research co-design in health: a systematic overview of reviews and development of a framework.Implementation science : IS · 2024Pooled it
- Co-designing Community Out-of-hours Palliative Care Services: A systematic literature search and review.Palliative medicine · 2023Pooled it
- Patient and physician perspectives on engaging in palliative and healthcare trials: a qualitative descriptive study.BMC palliative care · 2021Trial
- Brief Engagement and Acceptance Coaching for Hospice Settings (the BEACHeS study): results from a Phase I study of acceptability and initial effectiveness in people with non-curative cancer.BMC palliative care · 2021Trial
- Do Androids Dream of Lived Experience? Navigating Risks, Uncertainty, and Best Practices Around Generative AI in Patient and Public Involvement and Engagement.Journal of medical Internet research · 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
- Enablers to successful patient and public involvement in Palliative Care Research: Qualitative perspectives of public members and Program Coordinators.Palliative medicine · 2026Article
- Questions for more insightful and useful analyses of barriers and facilitators to public involvement and engagement in health research: a critical narrative review.Research involvement and engagement · 2026Review
- Meaningful or Marginal: An Integrative Review of Consumer and Community Involvement in Migrant Health Research.Healthcare (Basel, Switzerland) · 2026Review
- A new cross-disciplinary model for early integration of palliative care for patients with incurable cancer - an intervention development study.BMC palliative care · 2026Article
- Participatory development of patient-targeted guideline material in palliative care: A qualitative evaluation.Palliative care and social practice · 2026Article
- 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
- How are patient partners involved in health service research? A scoping review of reviews.Research involvement and engagement · 2025Review
- Measuring impacts of patient and public involvement and engagement (PPIE): a narrative review synthesis of review evidence.Research involvement and engagement · 2025Review
- Evaluation of the impact of patient and public involvement on doctoral students in palliative dementia care research.Research involvement and engagement · 2025Article
- Use of sedative drugs in specialist palliative care (iSedPall): a multi-modal intervention pilot study protocol.Pilot and feasibility studies · 2025Article
- The Support Needs Approach for Patients (SNAP): content validity and response processes from the perspective of patients and nurses in Swedish specialised palliative home care.BMC palliative care · 2025Article
- Top 10 palliative care research priorities in France: a 3-step, mixed-methods protocol (AXEPRO study).BMJ open · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatient/carer involvement in palliative care research has been reported as complex, difficult and less advanced compared to other areas of health and social care research. There is seemingly limited evidence on impact and effectiveness.
aimTo examine the evidence regarding patient/carer involvement in palliative care research and identify the facilitators, barriers, impacts and gaps in the evidence base.
designQualitative evidence synthesis using an integrative review approach and thematic analysis. DATA SOURCES: Electronic databases were searched up to March 2018. Additional methods included searching websites and ongoing/unpublished studies, author searching and contacting experts. Eligibility criteria were based on the SPICE (Setting, Perspective, Intervention, Comparison, Evaluation) framework. Two quality assessments on methodology and involvement were undertaken.
resultsA total of 93 records were included. Eight main themes were identified, mainly concerning facilitators and barriers to effective patient and carer involvement in palliative care research: definitions/roles, values/principles, organisations/culture, training/support, networking/groups, perspectives/diversity, relationships/communication and emotions/impact. Evidence on the impact of involvement was limited, but when carried out effectively, involvement brought positive benefits for all concerned, improving the relevance and quality of research. Evidence gaps were found in non-cancer populations and collaborative/user-led involvement.
conclusionEvidence identified suggests that involvement in palliative care research is challenging, but not dissimilar to that elsewhere. The facilitators and barriers identified relate mainly to the conduct of researchers at an individual level; in particular, there exists a reluctance among professionals to undertake involvement, and myths still perpetuate that patients/carers do not want to be involved. A developed infrastructure, more involvement-friendly organisational cultures and a strengthening of the evidence base would also be beneficial.
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.