ArticleBMC medical research methodology2012
Patient, caregiver, health professional and researcher views and experiences of participating in research at the end of life: a critical interpretive synthesis of the literature.
Article in BMC medical research methodology, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 36 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
36 citing papers in PubMed, 2 syntheses or guidelines pooled it, 113 citations in OpenAlex.
- EASL position paper on palliative care in advanced chronic liver disease.JHEP reports : innovation in hepatology · 2026Guideline
- Pooled it
- Motivations and experiences of patients with respiratory disease and their caregivers in a multinational trial of mirtazapine for severe breathlessness: a qualitative study (BETTER-B).BMC pulmonary medicine · 2025Trial
- 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
- Trial
- Feasibility of Conducting a Palliative Care Randomized Controlled Trial in Children With Advanced Cancer: Assessment of the PediQUEST Study.Journal of pain and symptom management · 2015Trial
- A new cross-disciplinary model for early integration of palliative care for patients with incurable cancer - an intervention development study.BMC palliative care · 2026Article
- Techno-Mainstreaming Palliative Care: The Global Palliative Doctors' Network.Journal of epidemiology and global health · 2026Article
- '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
- Navigating the dual role of physician and clinician investigator in end-of-life research.AIDS care · 2025Article
- Appropriate medication use in Dutch terminal care: study protocol of a multicentre stepped-wedge cluster randomized controlled trial (the AMUSE study).BMC palliative care · 2024Article
- EOLinPLACE: an international research project to reform the way dying places are classified and understood.Palliative care and social practice · 2024Article
- Vulnerability in Biomedical Research: A Historical Reflection and Practical Implications for HIV Cure-Related Research.AIDS research and human retroviruses · 2024Article
- Good quality end-of life care for people with an intellectual disability: A critical interpretive synthesis protocol.PloS one · 2024Article
- Article
- Ethics of non-therapeutic research on imminently dying patients in the intensive care unit.Journal of medical ethics · 2023Article
- Magnesium hydroxide versus macrogol/electrolytes in the prevention of opioid-induced constipation in incurable cancer patients: study protocol for an open-label, randomized controlled trial (the OMAMA study).BMC palliative care · 2023Article
- Research participation in palliative medicine-benefits and barriers for patients and families: rapid review and thematic synthesis.BMJ supportive & palliative care · 2023Review
- The Reactions of Adolescents, Parents and Clinicians to Participating in Qualitative Research Interviews Regarding Adolescents Bereaved by Suicide and Other Traumatic Death.International journal of environmental research and public health · 2022Article
- Benefits of Study Participation for Patients with Advanced Cancer Receiving Radiotherapy: A Prospective Observational Study.Palliative medicine reports · 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
3 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundThe development of the evidence-base informing end of life (EoL) care is hampered by the assumption that patients at the EoL are too vulnerable to participate in research. This study aims to systematically and critically review the evidence regarding the experiences and views of patients, caregivers, professionals and researchers about participation in EoL care research, and to identify best practices in research participation.
methodsWe searched seven electronic databases, and hand searched three journals and the bibliographies of relevant papers. Inclusion criteria were original research papers on involvement in EoL care research or its impact on participants. Critical interpretive synthesis was used to integrate the whole body of empirical evidence on this topic and generate theoretical categories from the evidence.
resultsOf a total of 239 identified studies, 20 studies met the inclusion criteria, from: the US (11), the UK (6) and Australia (3). Most focused on patients with cancer (12) and were conducted in hospices (9) or hospitals (7). Studies enquired about issues related to: EoL care research in general (5), specific research methods (13), and trial research (2). The studies evaluating willingness to participate in EoL care research showed positive outcomes across the different parties involved in research. Factors influencing willingness were mainly physical and cognitive impairment. Participating in research was a positive experience for most patients and carers but a minority experienced distress. This was related to: characteristics of the participants; the type of research; or the way it was conducted. Participatory study designs were found particularly suitable for enabling the inclusion of a wide range of participants.
conclusionThe evidence explored within this study demonstrates that the ethical concerns regarding patient participation in EoL care research are often unjustified. However, research studies in EoL care require careful design and execution that incorporates sensitivity to participants' needs and concerns to enable their participation. An innovative conceptual model for research participation relevant for potentially vulnerable people was developed.
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.