Background: Previous studies have found clinician gatekeeping to be a major barrier to research participation for children and young people with life-limiting conditions and life-threatening illnesses (CYP with LLC/LTI). Little is known about other barriers to research with CYP with LLC/LTI and their impact.
Aims: BRAVES is a program of research aiming 1) to explore barriers to conducting research with CYP with LLC/LTI 2) to develop solutions for overcoming these barriers.
Methods: The programme includes five work packages (WP): (1) A systematic review investigating recruitment of CYP with LLC/LTI to research; (2) A survey exploring views of paediatric palliative care (PPC) clinicians on barriers to research with CYP; (3) A national survey exploring the difficulties and solutions proposed by chief investigators' conducting studies with CYP with LLC/LTI; (4) An analysis of correspondence between researchers conducting studies with CYP with LLC/LTI and research ethics committees (RECs); (5) Interviews with REC members to understand their experience of reviewing research with this population.
Results: Findings from three WP completed to date indicate that: (1) recruitment information is consistently under-reported (WP1); (2) PPC clinicians identify the REC review process; time and resources as well as clinician gatekeeping as barriers to research (WP 2) and chief investigators identify funding, access to families, and ethical and regulatory approval as barriers to research with CYP with LLC/LTI (WP 3).
Conclusion: Clinician gatekeeping is a barrier to research with CYP with LLC/LTIs but other barriers include resources and the ethical/regulatory approval process. Findings from BRAVES will contribute to the development of guidance for overcoming such barriers.
Funding: This research is funded by NIHR CLAHRC,The Health Foundation, GOSH Children´s Charity,NIHR-GOSH BRC &The True Colors Trust.