ReviewPalliative medicine2018
Dying persons' perspectives on, or experiences of, participating in research: An integrative review.
Review in Palliative medicine, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 40 papers, 3 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
40 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- 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
- Fostering nurse-patient relationships in palliative care: An integrative review with narrative synthesis.Palliative medicine · 2024Pooled it
- Expectations and motives for nominating a family caregiver to partake in a web-based psychoeducational intervention: perspectives of patients with advanced illness in palliative care.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Trial
- Trial
- "Such an institution represents the circle of life" - bringing an inpatient hospice into an academic setting: a pre-implementation exploratory study.BMC palliative care · 2023Trial
- Bicentre, randomized, parallel-arm, sham-controlled trial of transcranial direct-current stimulation (tDCS) in the treatment of palliative care patients with refractory cancer pain.BMC palliative care · 2023Trial
- When a dying patient is asked to participate in a double-blind, placebo-controlled clinical trial on symptom control: The decision-making process and experiences of relatives.Palliative medicine · 2022Trial
- Conducting a randomized controlled clinical trial on palliative care in patients with glioblastoma - what are the challenges?Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Article
- Cocreation of a Digital Tool for Proactive End-of-Life Communication: Protocol for a Participatory Action Research Project.JMIR research protocols · 2026Article
- What matters to patients with cancer receiving home care at the end of life? A qualitative study comparing patients' and healthcare professionals' views.International journal of qualitative studies on health and well-being · 2025Article
- Bereaved informal carers' experience of an interventional clinical research project at the end-of-life: a qualitative interview study.BMC palliative care · 2025Article
- Testing the study protocol and interrater reliability of a new end-of-life wound assessment tool: a feasibility study.BMC palliative care · 2025Article
- "This Is How I Give Back": Long-Term Survivors on Legacy and HIV Cure Research at the End of Life-A Qualitative Inquiry in the United States.Infectious disease reports · 2025Article
- Exploring older people's end-of-life care preferences over time: A scoping review.Palliative medicine · 2025Article
- "Your whole life is turned upside down": a reflexive thematic analysis identifying recommendations for designing and conducting qualitative research with cancer caregivers.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Article
- The representation of Australians living with dementia in voluntary assisted dying research: A scoping review.Australasian journal on ageing · 2024Article
- Dexmedetomidine Versus Midazolam for End-of-Life Sedation and Agitation: Protocol for a Randomized Controlled Trial (The DREAMS Trial).JMIR research protocols · 2024Article
- Implementation of a digital distress detection system in palliative care: qualitative data on perspectives of a multiprofessional palliative care team.BMC palliative care · 2024Article
- Understanding barriers and facilitators to palliative and end-of-life care research: a mixed method study of generalist and specialist health, social care, and research professionals.BMC palliative care · 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
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundConducting research with dying persons can be controversial and challenging due to concerns for the vulnerability of the dying and the potential burden on those who participate with the possibility of little benefit.
aimTo conduct an integrative review to answer the question 'What are dying persons' perspectives or experiences of participating in research?
designA structured integrative review of the empirical literature was undertaken. DATA SOURCES: Cumulative Index Nursing and Allied Health Complete, PsycINFO, MEDLINE, Informit and Embase databases were searched for the empirical literature published since inception of the databases until February 2017.
resultsFrom 2369 references, 10 papers were included in the review. Six were qualitative studies, and the remaining four were quantitative. Analysis revealed four themes: value of research, desire to help, expression of self and participation preferences. Dying persons value research participation, regarding their contribution as important, particularly if it provides an opportunity to help others. Participants perceived that the potential benefits of research can and should be measured in ways other than life prolongation or cure. Willingness to participate is influenced by study type or feature and degree of inconvenience.
conclusionUnderstanding dying persons' perspectives of research participation will enhance future care of dying persons. It is essential that researchers do not exclude dying persons from clinically relevant research due to their prognosis, fear or burden or perceived vulnerability. The dying should be afforded the opportunity to participate in research with the knowledge it may contribute to science and understanding and improve the care and treatment of others.
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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.