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Children's views on research without prior consent in emergency situations: a UK qualitative study
Louise Roper1, Frances C Sherratt1, Bridget Young1
1Institute of Psychology Health and Society, University of Liverpool, Liverpool, UK.
Insights
Children want to be involved in medical research, even in emergencies. They believe research without prior consent (RWPC) is acceptable if interventions are safe, and they should be informed post-recovery.
Area of Science:
- Pediatric Research Ethics
- Clinical Trial Participation
- Child Health Advocacy
Background:
- Ethical considerations in pediatric research are paramount.
- Involving children in research decisions is increasingly important.
- Understanding children's perspectives on research without prior consent (RWPC) is crucial.
Purpose of the Study:
- To explore children's views on RWPC in emergency medical situations.
- To identify methods for involving children in research discussions.
- To understand children's preferences for information sharing regarding clinical trials.
Main Methods:
- Qualitative interview study with 16 children (aged 7-15) diagnosed with asthma or anaphylaxis.
- Participants had recent emergency care experience.
- Recruitment via a UK children's hospital and online advertising.
Main Results:
- Children expressed enthusiasm for participating in medical research.
- RWPC was deemed acceptable in emergencies if trial interventions were safe.
- Children desired to be informed about research post-recovery and involved in data use discussions.
- Participants suggested an animation as a method for informing them about trial participation.
Conclusions:
- Children are willing participants in emergency clinical trials.
- Guidance and tools, such as animations, can facilitate involving children in research discussions.
- Empowering children in research decision-making enhances ethical practice.
Objectives:
We explored children's views on research without prior consent (RWPC) and sought to identify ways of involving children in research discussions.
Design:
Qualitative interview study.
Setting:
Participants were recruited through a UK children's hospital and online advertising.
Participants:
16 children aged 7-15 years with a diagnosis of asthma (n=14) or anaphylaxis (n=2) with recent (<12 months) experience of emergency care.
Results:
Children were keen to be included in medical research and viewed RWPC as acceptable in emergency situations if trial interventions were judged safe. Children trusted that doctors would know about their trial participation and act in their best interests. All felt that children should be informed about the research following their recovery and involved in discussions with a clinician or their parent(s) about the use of data already collected as well as continued participation in the trial (if applicable). Participants suggested methods to inform children about their trial participation including an animation.
Conclusions:
Children supported, and were keen to be involved in, clinical trials in emergency situations. We present guidance and an animation that practitioners and parents might use to involve children in trial discussions following their recovery.