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Why do parents enrol their children in research: a narrative synthesis

Fisher, Helen R., McKevitt, Christopher and Boaz, Anette (2011) Why do parents enrol their children in research: a narrative synthesis. Journal of Medical Ethics, 37(9), pp. 544-551. ISSN (print) 0306-6800

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Abstract

Abstract OBJECTIVE: Recent legislation mandating the inclusion of children in clinical trials has resulted in an increase in the number of children participating in research. We reviewed the literature regarding the reasons parents chose to accept or decline an invitation to enroll their children in clinical research. METHODS: We searched for qualitative studies, written in the English language that considered the experiences of parents who had been invited to enrol their children in research. SCOPUS and Web of Knowledge electronic databases and reference lists of retrieved articles and review papers were searched. Retrieved articles were synthesised using the narrative synthesis method. RESULTS: 16 qualitative studies exploring the experiences of parents living in five countries whose children had a range of health conditions of varying severity were included. The health status of the child appeared to influence parents' reasons for participation. Parents whose children had life threatening conditions often considered they had no choice but to participate and many welcomed the innovation offered through research participation. Such parents also viewed the risks of research less negatively than those whose children were healthy or in the stable stage of a chronic condition. This raises questions regarding the voluntariness of informed consent by such parents. CONCLUSIONS: A tailored approach is needed when discussing research participation with parents of eligible children. While parents of healthy children may be more open to discussions of altruism, those whose children have life threatening illnesses should be given adequate information about the alternatives to, and risks of, research participation.

Item Type: Article
Research Area: Allied health professions and studies
Nursing and midwifery
Faculty, School or Research Centre: Faculty of Health and Social Care Sciences (until 2013)
Related URLs:
Depositing User: Simon Collins
Date Deposited: 08 Apr 2013 09:55
Last Modified: 08 Apr 2013 09:55
URI: http://eprints.kingston.ac.uk/id/eprint/25310

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