Findings from the study suggest that fundamental barriers exist at both the individual level, e.g. clinicians’ attitudes to involving young people in research, as well as at the institutional level, e.g. ethics committees and resource constraints, even though children and young people want to participate in research.
The BRAVES team consulted clinicians and research leaders on their perceptions of the barriers preventing children and their families becoming involved in research.
Palliative care clinicians, often “gatekeepers” to children and their families getting involved in research, identified four key barriers to palliative care research with children:
- Time and resources: Clinicians already have high workloads and limited time, so prioritising research is challenging.
- Clinician’s attitudes to research: Clinicians noted a lack of experience and confidence in conducting research, and received little support to do so.
- Clinicians’ perceptions of patients and families: A paternalistic approach was noted, with clinicians afraid of burdening or ‘upsetting’ families.
- Ethical approval process: Both clinicians and
researchers found the ethical approval process
challenging and restrictive
Chief Investigators (CIs) – leaders of NIHR research studies involving children and young people with LLC/LTI and their families. Three key barriers to research emerged:
- Ethical and regulatory approval: Many CIs found the application and research approval process complex and lengthy, typically taking more than six months to
- Access to patients and families via clinicians: CIs noted variability in the willingness of clinicians to invite participants into CIs studies.
- Funding: Funding was the biggest barrier identified by CIs, particularly for those employed in clinical, rather than research focused, positions.
Four potential solutions to the above were identified:
- Ensuring a well-considered methodology with broad inclusion criteria
- Attending REC/R&D meetings and seeking advice prior to
- Involving children and young people, and families and clinicians, in research planning
- Embedding researchers into clinical teams