RT Journal Article
SR Electronic
T1 Research barriers in children and young people with life-limiting conditions: a survey
JF BMJ Supportive & Palliative Care
JO BMJ Support Palliat Care
FD British Medical Journal Publishing Group
SP e715
OP e721
DO 10.1136/bmjspcare-2018-001521
VO 12
IS e5
A1 Jordana Natalie Peake
A1 Emma Beecham
A1 Linda J M Oostendorp
A1 Briony F Hudson
A1 Patrick Stone
A1 Louise Jones
A1 Monica Lakhanpaul
A1 Myra Bluebond-Langner
YR 2022
UL http://spcare.bmj.com/content/12/e5/e715.abstract
AB 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.