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

The DOI matches its Crossref record; 46 of the 46 references it cites were found in a registry or an index.

A systematic review of reasons for gatekeeping in palliative care research

Open access
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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Crossref · 10.1177/0269216315616759

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Citations

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Research works printed but not linked: 2

  1. Hudson P, 2005, Eur J Palliat care, 12, 165
  2. Abernethy AP, 2010, J Support Oncol, 8, 139

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Metadata

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
FWCI
1.45
Type
journal article
Language
en
Open access
Licence
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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