A Systematic Review Of Reasons For Gatekeeping In Palliative Care Research.

Title

A Systematic Review Of Reasons For Gatekeeping In Palliative Care Research.

Creator

Kars MC; van Thiel GJ; van der Graaf R; Moors M; de Graeff A; van Delden JJ

Publisher

Palliative Medicine

Date

2016

Subject

Gatekeeping; Ethics; Palliative Care; Patient Selection; Refusal To Participate

Description

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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

May 2016 List

Citation

Kars MC; van Thiel GJ; van der Graaf R; Moors M; de Graeff A; van Delden JJ, “A Systematic Review Of Reasons For Gatekeeping In Palliative Care Research.,” Pediatric Palliative Care Library, accessed May 20, 2022, https://pedpalascnetlibrary.omeka.net/items/show/10589.

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