A systematic review of reasons for gatekeeping in palliative care research

Kars, Marijke C; van Thiel, Ghislaine JMW; van der Graaf, Rieke; Moors, Marleen; de Graeff, Alexander; van Delden, Johannes JM

doi:10.1177/0269216315616759

Cited by 206Ethics in Clinical ResearchPalliative Care and End-of-Life IssuesPalliative and Oncologic Care

A systematic review of reasons for gatekeeping in palliative care research

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Kars, Marijke C, van Thiel, Ghislaine JMW, van der Graaf, Rieke, Moors, Marleen, de Graeff, Alexander, van Delden, Johannes JM·2016·Palliative Medicine

DOI 10.1177/0269216315616759

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Abstract

Background: When healthcare professionals or other involved parties prevent eligible patients from entering a trial as a research subject, they are gatekeeping. This phenomenon is a persistent problem in palliative care research and thought to be responsible for the failure of many studies. Aim: To identify potential gatekeepers and explore their reasons for gatekeeping in palliative care research. Design: A ‘Review of Reasons’ based on the systematic Preferred Reporting Items for Systematic Reviews and Meta-Analyses approach and a thematic synthesis. Data source: PubMed, Embase, Cumulative Index to Nursing and Allied Health Literature and PsycINFO from 2000 to May 20 2015 were searched. Studies in children (aged <18 years) and patients with dementia were excluded. Results: Thirty papers on gatekeeping in palliative care research were included. Five groups of potential gatekeepers were identified: healthcare professionals, research ethics committees, management, relatives and researchers. The fear of burdening vulnerable patients was the most reported reason for gatekeeping. Other reasons included ‘difficulty with disclosure of health status’, ‘fear of burdening the patient’s relatives’, ‘doubts about the importance or quality of the study’, ‘reticent attitude towards research and (research) expertise’ and ‘logistics’. In hospice and homecare settings, the pursuit of comfort care may trigger a protective attitude. Gatekeeping is also rooted in a (perceived) lack of skills to recruit patients with advanced illness. Conclusion: Gatekeeping is motivated by the general assumption of vulnerability of patients, coupled with an emphasis on the duty to protect patients. Research is easily perceived as a threat to patient well-being, and the benefits appear to be overlooked. The patients’ perspective concerning study participation is needed to gain a full understanding and to address gatekeeping in palliative care research.

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Gatekeeping is an issue in palliative care research, with 'fear of burdening vulnerable patients' the most reported reason for gatekeeping among healthcare professionals.
“Gatekeeping is also an issue with ‘fear of burdening vulnerable patients’ the most reported reason for gatekeeping among healthcare professionals. 73”
From Acceptance and Commitment Therapy (ACT) for people with advanced progressive illness, their caregivers and staff involved in their care: A scoping review. (2023) · cites this paper as [73]

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Authors: Kars, M. C., van Thiel, G. J., van der Graaf, R., Moors, M., de Graeff, A., & van Delden, J. J.
Affiliations: University Medical Center Utrecht (NL)
Department of Medical Humanities, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands
Department of Medical Oncology, University Medical Center Utrecht, Utrecht, The Netherlands
Corresponding author: Kars, Marijke C
ORCID: Kars, Marijke C
Venue: Palliative Medicine
Publisher: SAGE Publications
Published: 2015-11-17
Volume: 30
Issue: 6
Pages: 533-548
ISSN: 0269-2163 (ISSN-L)
1477-030X
DOI: 10.1177/0269216315616759
OpenAlex: W2181137729
Cited by: 205
References: 46
Citations by year: 2026: 20 · 2025: 16 · 2024: 36 · 2023: 20 · 2022: 22 · 2021: 18 · 2020: 20 · 2019: 22 · 2018: 14 · 2017: 13 · 2016: 3 · 2013: 1
FWCI: 1.45
Type: journal article
Language: en
Open access: green
dspace.library.uu.nl
Licence: other-oa
journals.sagepub.com/page/policies/text-and-data-mining-license (tdm)
Locations: Palliative Medicine (publishedVersion)
PubMed (publishedVersion)
Utrecht University Repository (Utrecht University) (submittedVersion, other-oa)
Utrecht University Repository (Utrecht University) (submittedVersion)
Topics: Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
Keywords: gatekeeping, palliative care research, barriers to research participation, patient recruitment, vulnerable patients, research ethics committees, healthcare workers, duty to protect, patient perspectives, advanced disease
MeSH terms: Adult, Aged, Aged, 80 and over, Female, Humans, Male, Middle Aged, Palliative Care, Patient Selection, Gatekeeping, Biomedical Research, Young Adult

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A systematic review of reasons for gatekeeping in palliative care research

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