Exploring Child-Patient Autonomy: Findings from an Ethnographic Study of Clinic Visits by Children

Abstract

In research into the involvement of children in decision-making about their health and treatment there is an over-reliance on interviews (with children, parents and doctors) as a research method. What actually happens during clinic visits in terms of child-adult communication and how children participate in decision-making has been largely overlooked. This study aims to fill this gap by exploring how child-patient autonomy functions in a child-parent-doctor triadic relationship. The study is based on ethnographic non-participatory observations of appointments with doctors involving 31 children and young adults ranging in age from 2 to 19 years. The study demonstrates that patient autonomy is not clearly attributed to either the child or the parent by the doctor, but is shared between them, and therefore child-patient autonomy is a relational process that is conceptualised as autonomy-making in this article.