Barriers to research with children and young people with life-limiting conditions and their families: A survey of chief investigators' views, experiences and proposed solutions

Barriers to research with children and young people with life-limiting conditions and their families: A survey of chief investigators' views, experiences and proposed solutions

Peake J; Beecham E; Oostendorp L; Hudson B; Stone P; Jones L; Lakhanpaul M; Bluebond-Langner M

Palliative Medicine

2018

human; child; female; male; major clinical study; conference abstract; patient referral; scientist; funding; intervention study; thinking; clinical research; embedding; publication; visibility

Background/aims: Undertaking research with children and young people (CYP) with life-limiting conditions (LLC) and life threatening illnesses (LTI) is challenging. Previous research has highlighted barriers, such as obtaining ethics approval and clinician gatekeeping, that delay research or result in studies not recruiting to target. This study aimed to provide more in-depth insight on the views, experiences and solutions of Chief Investigators (CIs) recruiting CYP with LLC and LTI and their families in the UK. Methods: We developed an online survey based on a scoping review of the literature and previous rapid survey. The new survey contained closed and open-ended questions and was divided into 3 sections: (1) the CI's most recent project; (2) the CI's overall experience of research with this population; (3) demographic information. Participants were 61 CIs conducting studies with CYP with LLC and LTI and families, identified from the UK NIHR Clinical Research Network Portfolio. Results: Chief investigators reported funding (51%) to be the biggest barrier to research with this population, followed by institutional factors (e.g. research and development approval) (11%) and clinician factors (e.g. gatekeeping) (9%). CIs suggested several generic solutions (e.g. having a well thought out question and methodology to improve chances of obtaining funding). Solutions that were particularly relevant included embedding researchers in clinical teams, involving CYP and families early on in the research process, meeting the specific needs of CYP and families and designing clear and age appropriate written information for CYP. Given the usually low number of eligible CYP, inclusion criteria should be broad and investigators should be aware of the complexity of approvals required for multi-centre studies. Researchers should invest in developing good relationships with clinicians to reduce gatekeeping and attempt to interest them in studies other than intervention trials, which are quite common in this population. Conclusions: The involvement of clinicians, CYP and families at the inception of studies should be considered a priority for research with CYP with LLC and LTI and families. Other potential strategies include increasing the visibility of research, embedding researchers in clinical teams, having clinician research champions, and acknowledging in peerreviewed manuscripts those clinicians who do recruit to studies.

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August 2018 List