Guide to children’s participation in decisions about their health  

Improving health care provision of all children through child participation

This Guide mostly focuses on how a child can be involved and supported in individual decisions regarding his/her health. 

However, greater routine integration and inclusion of child participation and perspectives at other levels of policy, planning, service design, delivery and evaluation can result in better informed decisions that also bring great benefit to children in general and individually.

General Comment 12 of the CRC (paragraph 104)  states that children should also “contribute their views and experiences to the planning and programming of services for their health and development”, including on “how to promote children’s capacities to take increasing levels of responsibility for their own health and development”. 

In relation to health care delivery, children should be given the opportunity to provide confidential or anonymous feedback on their health care experience after they have used services by means of “experience of care” feedback, satisfaction questions or other methods. 

Tools such as Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs)  are increasingly being adopted in paediatric population. PREMS are validated questionnaires, that gather patients' and families' views of their experience receiving care and are commonly used to measure the quality of care, with the goal to make care more patient and family centered. PROMs are questionnaires measuring patients’ views of their health status. PREMs and PROMs have been fast developing in over the last 15 years. 

 

Similarly, engaging children in the design of training curricula for health professionals, of information material or of new health facilities brings important insights and benefits for children that use services in future. 

Enabling and facilitating children to discuss and share their views collectively, by participating in regular children’s councils, advisory groups (for example of ‘expert-patient’ children with specific chronic conditions) or other forums and networks, not only provides channels for informed feedback to influence change in care delivery or design, but can also increase mechanisms of peer-support between children. 

 Young Persons Advisory Groups’

Young Persons Advisory Groups’ (YPAGs) have already been set up across Europe and at international level to underpin clinical trials. The YPAGs include young people aged between 8-19 years (although some groups have older young adults up to the age of 21) who are patients, regular attenders at hospital, and/or healthy youths having an interest in science and healthcare. YPAGs are predominantly facilitated by a professional involved in a clinical research facility, children’s hospital, or academic institution. They are recruited by means of schools, associations, hospitals and the patients’ and families associations, and were selected according to their motivation and interest in being involved in this kind of empowerment activities. YPAGs provide a platform for children and young people to have a voice, share their opinions, and apply their experience to a variety of issues relevant for biomedical research.

This type of structured participation is increasingly institutionalised in hospitals or other health organisations and rely on participatory approaches where the child is not only a respondent but also engaged in meaningful dialogue. When integrated and facilitated on a regular basis within health services, these approaches also provide platforms to increase the accountability of decision-makers and health professionals to children.

Good practices