BRAVES: Breaking down barriers to research for children and young people with life threatening illnesses

Achieving high levels of participation in health research will increase the efficiency and timeliness of research. It will also increase its relevance by reducing bias. The 'Barriers to Research Access: Voices, Experiences and Solutions', or 'BRAVES' programme focus on improving recruitment to qualitative research for patients with serious chronic diseases. This included children with life-limiting conditions and life-threatening illnesses (LLC/LTI) and people with severe mental health problems.

Researchers led a mixed-methods research programme which included:

- gathering data on the experiences, views and needs of families, recruiters and researchers in relation to recruitment
- exploring why potential recruiters and eligible families decline to be involved in research
- assessing the impact of recruitment practices on recruitment rates and sample biases.

This informed the development of evidence-based guidance on invitation and recruitment to qualitative studies.

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
  complete.
• 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
  submission
• Involving children and young people, and families and clinicians, in research planning
• Embedding researchers into clinical teams

Professor Myra Bluebond-Langner, principal investigator on the BRAVES project, has recorded a podcast with the journal Palliative Medicine, discussing the need for an increased understanding of barriers to research in paediatric palliative care, findings from the project, and outlining the future research planned by the team. 

University College London (UCL)

Marie Curie Palliative Care Research Unit

NIHR CLAHRC (now ARC) North Thames