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

Furyk, Jeremy, McBain-Rigg, Kris, Renison, Bronia, Watt, Kerrianne, Franklin, Richard, Emeto, Theophilus I., Ray, Robin A., Babl, Franz E., and Dalziel, Stuart (2018) A comprehensive systematic review of stakeholder attitudes to alternatives to prospective informed consent in paediatric acute care research. BMC Medical Ethics, 19.

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Abstract

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.

Item ID: 56190
Item Type: Article (Refereed Research - C1)
Keywords: consent, paediatrics, emergency care
Copyright Information: © The Author(s). 2018 Open Access. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
ISSN: 1472-6939
Date Deposited: 23 Nov 2018 01:31
FoR Codes: 11 MEDICAL AND HEALTH SCIENCES > 1103 Clinical Sciences > 110305 Emergency Medicine @ 70%
11 MEDICAL AND HEALTH SCIENCES > 1117 Public Health and Health Services > 111707 Family Care @ 30%
SEO Codes: 92 HEALTH > 9202 Health and Support Services > 920207 Health Policy Evaluation @ 30%
97 EXPANDING KNOWLEDGE > 970111 Expanding Knowledge in the Medical and Health Sciences @ 20%
92 HEALTH > 9205 Specific Population Health (excl. Indigenous Health) > 920501 Child Health @ 50%
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