News article
Who has the final say when a child is a patient?
When a child needs medical care, difficult considerations sometimes arise between medical expertise, parental responsibility, and the child’s right to be heard. Since the Convention on the Rights of the Child gained stronger legal status in Sweden, the issue of children’s participation in healthcare has become increasingly central for healthcare services, social services, and the legal system. New research shows that children’s voices can both be strengthened and silenced in healthcare decision-making processes, often depending on the adults around them.
Who has the final say when a child needs care? The Convention on the Rights of the Child establishes children’s right to be heard, while both guardians and healthcare professionals have a responsibility to act in the child’s best interests. When posed directly, the question may seem simple.
– In one sense, it is not at all difficult to answer the question – decisions are ultimately made by those with medical responsibility, says Johanna Schiratzki, Professor of Family Law at Stockholm University and principal investigator of the research project "Who Decides on a Child’s Healthcare?"
In practice, however, decision-making pathways in pediatric care can be complex. Collaboration – one of the key principles of children’s rights – is intended to safeguard the child’s best interests in situations where the child is in a particularly vulnerable position. This means that decisions are shaped through processes in which several actors interact: healthcare professionals, guardians, and the child.
Legislation reflects this complexity. Healthcare services are responsible for medically sound decisions, while the Swedish Children and Parents Code establishes guardians’ right and duty to make decisions for the child, taking into account the child’s views in accordance with their age and maturity. It is within these grey areas that the researchers operate.
– In their role as patients, children become dependent on social interaction and good relationships.
Johanna Schiratzki
Professor of Family Law at Stockholm University
Voice carriers and gatekeepers
In the project, the researchers examine how children’s right to be heard actually functions in healthcare settings. To describe the roles of adults, they use the concepts of voice carriers and gatekeepers.
– The child’s right to be heard means that the adults around the child – both guardians and healthcare professionals – must listen to the child and take their views into account, says Johanna.
Guardians can function as voice carriers by conveying and reinforcing the child’s perspective in relation to healthcare providers, something the project’s preliminary findings show is common. But they can also, often with the child’s best interests in mind, limit the child’s influence.
– Sometimes a guardian may instead limit the child’s influence, acting as a gatekeeper, in favor of other interventions that are considered to be in the child’s best interests.
Johanna and her colleagues also see how crucial the role of healthcare professionals can be.
– Children and guardians depend on key individuals within healthcare, both to make their voices heard and to ensure that medical interventions are carried out in ways that young patients feel comfortable with, she says.
Child patients tend to value how they are addressed – both regarding medical decisions and other aspects of hospital stays – more than whether they are allowed to decide about their care.
Ylva Lorentzon
Ylva Lorentzon, Associate Professor at Stockholm University
Participation does not always mean making decisions
An important finding is that participation does not mean the same thing to everyone.
– We have been surprised by how many different understandings there are of what participation can mean, says Ylva Lorentzon, Associate Professor at the Centre for the Study of Children’s Culture at Stockholm University and one of Johanna’s colleagues in the research project.
Children’s experiences are influenced by healthcare hierarchies, the severity of the illness, the child’s age, and the family’s circumstances. The researchers note that children often find themselves in a difficult position. They have less knowledge and power than healthcare professionals, yet must relate to decisions that affect their lives. However, for many children, participation is less about making decisions and more about being treated with respect.
– Child patients tend to value how they are addressed – both regarding medical decisions and other aspects of hospital stays – more than whether they are allowed to decide about their care.
Understanding why a measure is being taken can be more important than being able to say yes or no.
Knowledge for better interaction
The researchers emphasize that children’s rights should not be interpreted as meaning that children are always autonomous in relation to adults.
– In their role as patients, children become dependent on social interaction and good relationships, says Johanna.
This applies to relationships with guardians, but also to healthcare professionals with the right expertise and communicative skills.
– An important reflection concerns professional actors: genuine collaboration and interprofessional communication are required. Healthcare services bear significant responsibility for communicating not only with child patients and their families, but also with other actors in society.
The best interests of the child in healthcare
The Patient Act and the Health and Medical Services Act state that particular consideration must be given to the best interests of the child when providing healthcare to children. Since 1 January 2020, the Convention on the Rights of the Child has also been incorporated into Swedish law.
Healthcare professionals must, as far as possible, ascertain the child’s views regarding the care or treatment in question. The child’s opinion must then be taken into account in light of their age and maturity. Healthcare professionals assess whether the individual child is sufficiently mature to make their own decision in the specific healthcare matter.
A particular challenge may concern access to a child’s medical record. Guardians are able to log in and manage the child’s healthcare matters until the child turns 13. Children aged 16 or older can access their medical records by logging in themselves.
Source: The National Board of Health and Welfare and 1177
More about the research
The research is conducted by Professor Johanna Schiratzki, Professor Ann-Zofie Duvander, researcher Johanna Finnström, PhD Ylva Lorentzon, and Associate Professor Kavot Zillén. The project has been ongoing since 2023 and will conclude at the end of 2026.
Read more about the research on the Stockholm University website. External link.
Michelle Bornestad (English translation by Forte)
