Children in health research: a matter of trust

Journal of Medical Ethics 36 (4):211-216 (2010)
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Abstract

Background Central to the involvement of children in health research is the notion of risk. In this paper we present one of the factors, a matter of trust, that shaped Canadian parents' and children's perceptions and assessments of risk in child health research. Participants and methods Part of a larger qualitative research study, 82 parents took part an in-depth qualitative interview, with 51 parents having children who had participated in health research and 31 having children with no research history. 51 children ranging from 6 to 19 years of age were also interviewed, with 28 having a history of participation in child health research and 23 having no history. Children also took part in 3 focus groups interviews. Themes emerged through a grounded theory analysis of coded interview transcripts. Findings The presence or absence of trust was not only perceived by parents and children as a contributing factor to involving children in health research, but also shaped their perceptions and assessments of risk. Three interrelated subthemes identified were: (1) relationships of trust; (2) placing trust in symbols of authority; and (3) the continuum of trust. Conclusions Our study reinforces that trust is an important factor when parents assess risk in child health research and shows that children use the language of trust in relation to risk. More discussion regarding trust in training researchers is warranted given the trust in researchers and institutions evident in this study. We also recommend further study of the continuum of trust in child health research

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