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A comprehensive systematic review of stakeholder attitudes to alternatives to prospective informed consent in paediatric acute care research

Furyk, Jeremy, McBain-Rigg, K, Renison, B, Watt, K, Franklin, R, Emeto, TI, Ray, RA, Babl, FE and Dalziel, S 2018, A comprehensive systematic review of stakeholder attitudes to alternatives to prospective informed consent in paediatric acute care research, BMC Medical Ethics, vol. 19, no. 1, pp. 1-14, doi: 10.1186/s12910-018-0327-9.

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Title A comprehensive systematic review of stakeholder attitudes to alternatives to prospective informed consent in paediatric acute care research
Author(s) Furyk, JeremyORCID iD for Furyk, Jeremy orcid.org/0000-0002-9503-0928
McBain-Rigg, K
Renison, B
Watt, K
Franklin, R
Emeto, TI
Ray, RA
Babl, FE
Dalziel, S
Journal name BMC Medical Ethics
Volume number 19
Issue number 1
Article ID 89
Start page 1
End page 14
Total pages 14
Publisher BMC
Place of publication London, Eng.
Publication date 2018-11-20
ISSN 1472-6939
Keyword(s) Consent
Paediatrics
Emergency care
Social Sciences
Science & Technology
Life Sciences & Biomedicine
Ethics
Medical Ethics
Social Sciences, Biomedical
Social Sciences - Other Topics
Biomedical Social Sciences
COMMUNITY CONSULTATION
EMERGENCY RESEARCH
CHILDREN
RESUSCITATION
CHALLENGES
SITUATIONS
EXCEPTION
TRIALS
Summary Background: A challenge of performing research in the paediatric emergency and acute care setting is obtaining valid prospective informed consent from parents. The ethical issues are complex, and it is important to consider the perspective of participants, health care workers and researchers on research without prospective informed consent while planning this type of research. Methods: We performed a systematic review according to PRISMA guidelines, of empirical evidence relating to the process, experiences and acceptability of alternatives to prospective informed consent, in the paediatric emergency or acute care setting. Major medical databases and grey sources were searched and results were screened and assessed against eligibility criteria by 2 authors, and full text articles of relevant studies obtained. Data were extracted onto data collection forms and imported into data management software for analysis. Results: Thirteen studies were included in the review consisting of nine full text articles and four abstracts. Given the heterogeneity of the methods, results could not be quantitatively combined for meta-analysis, and qualitative results are presented in narrative form, according to themes identified from the data. Major themes include capacity of parents to provide informed consent, feasibility of informed consent, support for alternatives to informed consent, process issues, modified consent process, child death, and community consultation. Conclusion: Our review demonstrated that children, their families, and health care staff recognise the requirement for research without prior consent, and are generally supportive of enrolling children in such research with the provisions of limiting risk, and informing parents as soon as possible. Australian data and perspectives of children are lacking and represent important knowledge gaps.
Language eng
DOI 10.1186/s12910-018-0327-9
Indigenous content off
Field of Research 2201 Applied Ethics
HERDC Research category C1 Refereed article in a scholarly journal
Copyright notice ©2018, The Author(s)
Free to Read? Yes
Use Rights Creative Commons Attribution licence
Persistent URL http://hdl.handle.net/10536/DRO/DU:30144777

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.