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.
A network of paediatric hospitals involve children and young patients in view of improving quality of care (Sweden)
The network aims at improving the quality of paediatric care, with the involvement of young patients, parents and staff. It has its foundation in a set of quality criteria derived from law, professional standards, knowledge of care environment, and the expressed opinions of children (primary and high schools) from Patient Reported Experience Measure (PREM) surveys and young adviser groups (YPAGs).
The health facility self-evaluates its practices and includes children and families in the process. The evaluation reports are developed by receiving feedback from children and families, and are exchanged with a similar clinic to do a thorough mutual collegial examination. When the final reports have been exchanged the clinics have a clear idea of what to improve, including improvements to be done with children. In terms of methodology, routines for how staff involve children patients in planning their care, communicating their opinions and preparing for medical measures or interventions are required. The clinic carrying out the evaluation on its practice has to demonstrate how the staff has these skills.
The network offers advice and sample questions to be used, for example in PREM surveys, and methods for involving children in care environment surveys.
"Imagine Your Hospital" – Hospital selects three projects presented by children during its first-ever Children’s Users’ Commission (France)
In France, each hospital has a users’ commission (commission des usagers) that examines complaints addressed to the establishment and makes proposals to improve the stay and care of patients and their relatives. Typically, the committee is composed of adults. In 2022, the University Hospital (CHU) in Reims set up its first users’ commission exclusively dedicated to children, with the aim of collecting their voices, regardless of their age and experience of hospitalization. It was composed of ten children aged 4 to 17, their parents, the hospital director, other representatives of the hospital and external associations. This was a first-time experience in France.
For an entire month, hospitalized children were asked to fill in questionnaire similar to the user satisfaction surveys that are usually released to adults at the end of their hospital stay. Topics included the way in which patients had been welcomed, the quality of meals, accommodation or the management of pain. Children and parents were also invited to submit ideas and projects. Four proposals were selected and projects will see the day within the following year: 1) allowing children to meet with their pets during hospitalization, 2) creating an app for parents to be informed of how their child’s stay at the hospital is going, 3) providing all children with access to Disney+ platform, 4) introducing à la carte meals (rather than a set menu for all).
The hospital wishes to conduct such consultations on a yearly basis.
Learn more on reseau-chu.org