Research barriers in children and young people with life-limiting conditions: a survey

Title

Research barriers in children and young people with life-limiting conditions: a survey

Creator

Peake JN; Beecham E; Oostendorp LJM; Hudson BF; Stone P; Jones L; Lakhanpaul M; Bluebond-Langner M

Publisher

BMJ Supportive & Palliative Care

Date

2018

Subject

clinical decisions; ethics; methodological research; paediatrics; symptoms and symptom management

Description

Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to research. OBJECTIVES: To explore the reported experiences, difficulties and proposed solutions of chief investigators (CIs) recruiting CYP with LLCs/LTIs and families in the UK. METHODS: 61 CIs conducting studies with CYP with LLCs/LTIs and their families, identified from the UK National Institute of Health Research portfolio, completed an anonymous, web-based questionnaire, including both closed and open-ended questions. Descriptive statistics and inductive and deductive coding were used to analyse responses. RESULTS: UK CIs cited limitations on funding, governance procedures including Research and Development, Site-Specific and REC approval processes, and clinician gatekeeping as challenges to research. CIs offered some solutions to overcome identified barriers such as working with CYP and their families to ensure their needs are adequately considered in study design and communicated to ethics committees; and designing studies with broad inclusion criteria and developing effective relationships with clinicians in order to overcome clinician gatekeeping. CONCLUSIONS: Many of the challenges and solutions reported by UK CIs have applicability beyond the UK setting. The involvement of clinicians, patients and their families at the inception of and throughout paediatric palliative care research studies is essential. Other important strategies include having clinician research champions and increasing the visibility of research. Further research on the perspectives of all stakeholders, leading to mutually agreed guidance, is required if care and treatment are to improve.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.

Citation List Month

October 2018 List

Collection

Citation

Peake JN; Beecham E; Oostendorp LJM; Hudson BF; Stone P; Jones L; Lakhanpaul M; Bluebond-Langner M, “Research barriers in children and young people with life-limiting conditions: a survey,” Pediatric Palliative Care Library, accessed November 28, 2021, https://pedpalascnetlibrary.omeka.net/items/show/15585.

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