Clavering E K, McLaughlin J
Policy, Ethics and Life Sciences (PEALS) Research Centre, Newcastle University, Newcastle upon Tyne, UK.
Child Care Health Dev. 2010 Sep;36(5):603-11. doi: 10.1111/j.1365-2214.2010.01094.x. Epub 2010 Jun 1.
In the UK, there is a growing recognition of the need to include children's accounts in research on paediatric health care. This paper seeks to examine ways in which children have been included in health-related studies to identify strengths and weaknesses.
Key empirical based studies were identified via comprehensive searches of academic literature databases to exemplify research practices related to three ways of engaging with children in health-related research. These three approaches are summarized as research on children, with children and by children.
Research on children engages with adult 'authorities', such as parents and medical professionals. This approach allows some access to children including those understood as hard-to-reach: for example, pre-speech infants, or children with complex developmental disabilities. Research with children includes children as respondents to engage directly with their own understandings. This may be achieved alongside adult representatives, or by focusing only on the children themselves. Research by children encourages children to participate in the research process itself. This may occur across any, or indeed, every stage from design to dissemination to enable children to set the agenda themselves. Each of the three approaches has strengths and weaknesses, and involves some form of adult-mediation.
Inclusion of children's perspectives can be achieved, at varying levels, in each approach (on, with and by) examined here. Although claims to authority around including children's perspectives may appear to hold more credence when children have directly participated in the research, there may be times when this is neither possible nor appropriate. Researchers are challenged to be open and reflexive about ways in which children are engaged with, incorporated in and represented across the many stages of research. Whichever approach is taken, ethical issues and notions of equity remain problematic. This point holds particular resonance for ways in which ethics around children may be considered in National Health Service ethics governance processes.
在英国，人们越来越认识到有必要将儿童的观点纳入儿科医疗保健研究。本文旨在探讨在与健康相关的研究中纳入儿童的方式，以确定其优点和缺点。
通过全面检索学术文献数据库，确定了基于关键实证的研究，以举例说明与在与健康相关的研究中与儿童互动的三种方式相关的研究实践。这三种方法概括为对儿童进行研究、与儿童一起进行研究以及由儿童进行研究。
对儿童进行研究涉及与成人“权威”，如父母和医疗专业人员合作。这种方法允许接触到一些儿童，包括那些被认为难以接触到的儿童：例如，不会说话的婴儿或有复杂发育障碍的儿童。与儿童一起进行研究将儿童作为受访者，直接了解他们自己的理解。这可以与成人代表一起实现，或者仅关注儿童本身。由儿童进行研究鼓励儿童参与研究过程本身。这可能发生在从设计到传播的任何阶段，甚至是每个阶段，以使儿童能够自己设定议程。这三种方法各有优缺点，并且都涉及某种形式的成人调解。
在这里研究的每种方法（对、与、由）中，都可以在不同程度上纳入儿童的观点。尽管当儿童直接参与研究时，围绕纳入儿童观点的权威性主张似乎更有可信度，但有时这既不可能也不合适。研究人员面临挑战，要对在研究的许多阶段中与儿童互动、纳入儿童以及呈现儿童的方式保持开放和反思。无论采用哪种方法，伦理问题和公平观念仍然存在问题。这一点在国家医疗服务体系伦理治理过程中考虑儿童伦理的方式上具有特别的共鸣。
