Faculty of Nursing, Helen Glass Centre for Nursing, University of Manitoba, 89 Curry Place, Winnipeg, Manitoba, Canada R3T 2N2.
J Med Ethics. 2010 Apr;36(4):211-6. doi: 10.1136/jme.2009.031609.
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.
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.
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.
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.
儿童参与健康研究的核心是风险概念。在本文中,我们提出了一个因素,即信任问题,该因素塑造了加拿大父母和儿童对儿童健康研究中风险的看法和评估。
这是一项更大的定性研究的一部分,82 位家长参与了深入的定性访谈,其中 51 位家长的孩子参与了健康研究,31 位家长的孩子没有参与过研究。还对 51 名年龄在 6 至 19 岁的儿童进行了访谈,其中 28 名有参与儿童健康研究的历史,23 名没有。儿童还参加了 3 次焦点小组访谈。通过对编码访谈记录的扎根理论分析,出现了主题。
信任的存在或缺失不仅被父母和儿童视为参与健康研究的一个因素,而且还影响了他们对风险的看法和评估。确定了三个相互关联的子主题:(1)信任关系;(2)对权威符号的信任;(3)信任的连续性。
我们的研究表明,信任是父母评估儿童健康研究风险时的一个重要因素,并表明儿童在涉及风险时使用信任的语言。鉴于本研究中对研究人员和机构的信任,在培训研究人员时更有必要进一步讨论信任问题。我们还建议进一步研究儿童健康研究中的信任连续性。