Qualitative evaluation of a deferred consent process in paediatric emergency research: a PREDICT study
Related Experiment Video
Updated: Feb 18, 2026
A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research
Published on: July 31, 2017
Jeremy Furyk1,2,3,4, Kristin McBain-Rigg1, Kerrianne Watt1
1College of Public Health, Medical and Veterinary Sciences, James Cook University, Townsville, Queensland, Australia.
Insights
Parents generally support deferred consent (DC) for emergency pediatric research when immediate informed consent is not feasible. However, they sometimes confuse clinical care with research and link participation to personal benefit.
Area of Science:
- Pediatric Emergency Medicine
- Clinical Research Ethics
Background:
- Informed consent is challenging in pediatric emergency research due to short therapeutic windows.
- Deferred consent (DC) allows enrollment before consent, with later parental permission.
- Parental attitudes towards DC in pediatric emergency research are not well understood.
Purpose of the Study:
- To explore parental attitudes towards deferred consent (DC) in pediatric emergency research.
- To understand limitations of informed consent and DC in emergency settings.
Main Methods:
- Semi-structured telephone interviews with parents of children with febrile seizures or bronchiolitis.
- Explored limitations of prospective consent, DC acceptability, and optimal timing for DC.
- Inductive thematic analysis of interview transcripts.
Main Results:
- 39 parent interviews were conducted.
- Parents understood limitations of emergency consent and generally supported DC.
- Parents sometimes confused clinical care with research and based support on perceived personal benefit.
Conclusions:
- Parents acknowledge the need for alternatives to prospective consent in emergency research.
- Parental support for the concept of deferred consent was observed.
- Current research practices appear to align with parental expectations regarding DC.
Background:
A challenge of conducting research in critically ill children is that the therapeutic window for the intervention may be too short to seek informed consent prior to enrolment. In specific circumstances, most international ethical guidelines allow for children to be enrolled in research with informed consent obtained later, termed deferred consent (DC) or retrospective consent. There is a paucity of data on the attitudes of parents to this method of enrolment in paediatric emergency research.
Objectives:
To explore the attitudes of parents to the concept of DC and to expand the knowledge of the limitations to informed consent and DC in these situations.
Method:
Children presenting with uncomplicated febrile seizures or bronchiolitis were identified from three separate hospital emergency department databases. Parents were invited to participate in a semistructured telephone interview exploring themes of limitations of prospective informed consent, acceptability of the DC process and the most appropriate time to seek DC. Transcripts underwent inductive thematic analysis with intercoder agreement, using Nvivo 11 software.
Results:
A total of 39 interviews were conducted. Participants comprehended the limitations of informed consent under emergency circumstances and were generally supportive of DC. However, they frequently confused concepts of clinical care and research, and support for participation was commonly linked to their belief of personal benefit.
Conclusion:
Participants acknowledged the requirement for alternatives to prospective informed consent in emergency research, and were supportive of the concept of DC. Our results suggest that current research practice seems to align with community expectations.
Related Concept Videos
01:56Ethics in Research
01:30Ethical Dilemmas II
01:15Bioavailability Study Design: Healthy Subjects Versus Patients