Within the UK, 32 out of every 10,000 children are living with a life-limiting condition or life-threatening illness (LLC/ LTI).
Research, from genetic studies to drug trials is vital to improving care for these children and their families, but the inclusion of this vulnerable population into research studies has been difficult.
Barriers to Research Access: Voices, Experiences, and Solutions (BRAVES) is a CLAHRC study focusing on improving access and participation in research for children and young people with LLC/LTI and their families.
A new BITE – a postcard “need to know” summary of our published research – shares the perceptions of clinicians and research leaders on their perceptions of the barriers preventing children and their families becoming involved in research.
The BRAVES team surveyed palliative care clinicians, often “gatekeepers” to children and their families getting involved in research asking them
‘In your experience, what have you found to be the biggest barriers to palliative care research with children?’
We also consulted Chief Investigators (CIs) – leaders of NIHR research studies involving CYP with LLC/LTI and their families. CI’s were invited to complete an anonymous, web-based questionnaire and three key barriers to research were emerged, alongside four potential solutions.