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Qualitative evaluation of a deferred consent process in paediatric emergency research: a PREDICT study

Furyk, Jeremy, McBain-Rigg, K, Watt, K, Emeto, TI, Franklin, RC, Franklin, D, Schibler, A, Dalziel, SR, Babl, FE, Wilson, C, Phillips, N and Ray, R 2017, Qualitative evaluation of a deferred consent process in paediatric emergency research: a PREDICT study, BMJ Open, vol. 7, no. 11, pp. 1-8, doi: 10.1136/bmjopen-2017-018562.

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Title Qualitative evaluation of a deferred consent process in paediatric emergency research: a PREDICT study
Author(s) Furyk, JeremyORCID iD for Furyk, Jeremy orcid.org/0000-0002-9503-0928
McBain-Rigg, K
Watt, K
Emeto, TI
Franklin, RC
Franklin, D
Schibler, A
Dalziel, SR
Babl, FE
Wilson, C
Phillips, N
Ray, R
Journal name BMJ Open
Volume number 7
Issue number 11
Article ID e018562
Start page 1
End page 8
Total pages 8
Publisher BMJ
Place of publication London, Eng.
Publication date 2017-11-15
ISSN 2044-6055
2044-6055
Keyword(s) Science & Technology
Life Sciences & Biomedicine
Medicine, General & Internal
General & Internal Medicine
INFORMED-CONSENT
COMMUNITY CONSULTATION
RESUSCITATION RESEARCH
EXCEPTION
TRIAL
CHILDREN
PERCEPTIONS
EXPERIENCES
qualitative research
PREDICT
Summary 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.MethodChildren 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.
Language eng
DOI 10.1136/bmjopen-2017-018562
Indigenous content off
Field of Research 1103 Clinical Sciences
1117 Public Health and Health Services
1199 Other Medical and Health Sciences
HERDC Research category C1 Refereed article in a scholarly journal
Copyright notice ©2017, The Authors
Free to Read? Yes
Use Rights Creative Commons Attribution non-commercial licence
Persistent URL http://hdl.handle.net/10536/DRO/DU:30144785

Document type: Journal Article
Collections: Faculty of Health
School of Medicine
Open Access Collection
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Every reasonable effort has been made to ensure that permission has been obtained for items included in DRO. If you believe that your rights have been infringed by this repository, please contact drosupport@deakin.edu.au.