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How do parents experience being asked to enter a child in a randomised controlled trial?

Shilling, Valerie and Young, Bridget (2009) How do parents experience being asked to enter a child in a randomised controlled trial? BMC Medical Ethics, 10 . Article Number: 1. ISSN 1472-6939

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Abstract

Background: As the number of randomised controlled trials of medicines for children increases, it becomes progressively more important to understand the experiences of parents who are asked to enrol their child in a trial. This paper presents a narrative review of research evidence on parents' experiences of trial recruitment focussing on qualitative research, which allows them to articulate their views in their own words. Discussion: Parents want to do their best for their children, and socially and legally their role is to care for and protect them yet the complexities of the medical and research context can challenge their fulfilment of this role. Parents are simultaneously responsible for their child and cherish this role yet they are dependent on others when their child becomes sick. They are keen to exercise responsibility for deciding to enter a child in a trial yet can be fearful of making the 'wrong' decision. They make judgements about the threat of the child's condition as well as the risks of the trial yet their interpretations often differ from those of medical and research experts. Individual parents will experience these and other complexities to a greater or lesser degree depending on their personal experiences and values, the medical situation of their child and the nature of the trial. Interactions at the time of trial recruitment offer scope for negotiating these complexities if practitioners have the flexibility to tailor discussions to the needs and situation of individual parents. In this way, parents may be helped to retain a sense that they have acted as good parents to their child whatever decision they make. Summary: Discussing randomised controlled trials and gaining and providing informed consent is challenging. The unique position of parents in giving proxy consent for their child adds to this challenge. Recognition of the complexities parents face in making decisions about trials suggests lines for future research on the conduct of trials, and ultimately, may help improve the experience of trial recruitment for all parties.

Item Type:Article
Additional Information:Published: 16 February 2009. 11 pages (page numbers not for citation purposes).
Uncontrolled Keywords:RANDOMISED CONTROLLED TRIALS; CHILD; DECISION MAKING; evidence; parents; consent
Subjects:R Medicine > R Medicine (General)
R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services
Departments, Research Centres and Related Units:Academic Faculties, Institutes and Research Centres > Faculty of Medicine > School of Population, Community & Behavioural Sciences
DOI:10.1186/1472-6939-10-1
Publisher's Statement:© 2009 Shilling and Young; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Related URLs:
Refereed:Yes
Status:Published
ID Code:1171
Deposited On:28 Jul 2009 16:33
Last Modified:19 May 2011 18:07

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