Research project Who decides on a child's health care?
The project "Who decides on a child's health care? An interdisciplinary study on the child's right to participation in decisions concerning care and treatment" explores how the interaction between children, custodians and health care staff affects children's right to participation, determination and integrity in their own health care.
Since children are minors, they do not themselves have the right to make decisions about their lives. Instead, the parents – in their role as custodians – have legal rights and duties to take care of, and make decisions on behalf of, their child. As the child grows older , the custodians should increasingly take into account the child's own views. This applies to decisions health and medical care. The vast majority of Swedish children have parents with joint custody, which entails that principal decisions about the child must be made jointly by the custodians.
The purpose of this project is to explore how the interaction between children, custodians and health care staff affects children's right to participation, determination and integrity in their own health care. Do the adults, the custodians and health care professionals act as "voice bearers" for the child, representing the child's views and opinions? Or can they be seen as "gatekeepers", "pushers" or "experts", who, with the aim of giving the child the best available care, risk limiting the child’s autonomy? And how is the legal requirement for joint decision-making for custodians applied?
We explore these issues in two sub-studies. The first is based on a unique material of all district court judgments in the years 2016–2022, where parents dispute custody. We identify and analyze judgements that mention the child's health and wellbeing. In the second study, young people are interviewed about their own experiences of how the custodians’ rights and duties to make decisions has affected their participation, decision-making and integrity in issues regarding their health and medical care.
Together, the two studies – the one on parental disputes where the child has a limited opportunity to be heard, and the interview study where the child's voice is direct – provide new knowledge on the balance between the child's right to autonomy in relation to the child’s right to protection. Such insight is relevant, since there is a lack of clear guidelines concerning children's influence over their own care. These ambiguities and conflicts of interest between children and custodians, well as between patient, custodian and health care staff” custodians, as well as in relation to health care staff, affects several welfare sectors. This includes, in addition to health care, social services, courts, patient organizations and other civil society actors where children and young people are directly affected and included.