ReviewBMJ supportive & palliative care2023
Research participation in palliative medicine-benefits and barriers for patients and families: rapid review and thematic synthesis.
Review in BMJ supportive & palliative care, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 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
15 citing papers in PubMed, 2 syntheses or guidelines pooled it, 33 citations in OpenAlex.
- Benefits and Burdens of Research Participation: A Mixed Methods Systematic Review in Palliative and End-of-Life Care.Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association · 2025Pooled it
- Pooled it
- Trial
- Physician's ethical perspectives on research involving terminally ill patients in Nigeria: A qualitative study.Journal of Taibah University Medical Sciences · 2026Article
- Development and implementation of a cancer pain intervention registry: An Australian pilot study with preliminary outcome evaluation from 2 tertiary centers.Palliative & supportive care · 2026Article
- Bereaved informal carers' experience of an interventional clinical research project at the end-of-life: a qualitative interview study.BMC palliative care · 2025Article
- Standardising management of consent withdrawal and other clinical trial participation changes: The UKCRC Registered Clinical Trials Unit Network's PeRSEVERE project.Clinical trials (London, England) · 2025Article
- 'People ring because they're frightened': findings from a realist evaluation on the impact of timely responsive care at home at the end of life.BMC palliative care · 2025Article
- Exploring success in sub-acute hospital-to-home transitions for palliative patients: a descriptive qualitative study.BMC palliative care · 2025Article
- Providing 'professionalism with compassion'; how the time for caring communication can improve experiences at the end-of-life at home, findings from a realist evaluation.BMC palliative care · 2024Article
- Lived experiences of end-of-life care at home in the UK: a scoping review of qualitative research.The British journal of general practice : the journal of the Royal College of General Practitioners · 2024Article
- Increasing Access to Palliative Care in Cameroon: Progress, Gaps, and Recommendations.Nursing reports (Pavia, Italy) · 2024Review
- Participation in Advance Care Planning Among Medically At-Risk Rural Veterans: Protocol for a Personalized Engagement Model.JMIR research protocols · 2024Article
- From Individuals to Systems and Contributions to Creations: Novel Framework for Mapping the Efforts of Individuals by Convening The Center of Health and Health Care.Journal of participatory medicine · 2022Article
- Participating in Longitudinal Observational Research on Psychiatric Rehabilitation: Quantitative Results From a Patient Perspective Study.Frontiers in psychiatry · 2022Article
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 at 3 institutions in 1 country.
Funding
Abstract
backgroundResearch is essential for gathering evidence to inform best practice and clinical decision making, for developing and testing new treatments and services in palliative and end-of-life care (PEoLC). The participation of patients, carers and family members is essential, however, personal and ethical concerns are often cited by professionals as barriers to recruitment. There is evidence that patients and family members can benefit from participation in PEoLC research.
aimTo synthesise the evidence regarding patients', family members' and carers' experiences of participating in PEoLC research. To identify recommendations for enhancing the experience of participants.
designA qualitative rapid review and thematic synthesis. DATA SOURCES: MEDLINE, PsycINFO and PubMed were searched from 2010 to 2020. Studies reporting patients', family members' or carers' experiences of participating in PEoLC research were included.
results4 studies were included and 7 themes identified relating to the benefits of, and barriers to, participation in PEoLC research. Both altruistic and personal benefits of participation were reported. Barriers (negative aspects) to participation included feeling overwhelmed, practical issues, reminders of being a patient, not seeing the research as relevant to them and unmet needs.
conclusionsA number of benefits (positive aspects) surround participation in PEoLC research. However, several barriers (negative aspects) can prevent or discourage participation. This review has identified recommendations for research teams to enhance the experience, and number of people who those participating in research in this field.
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.