Guide to children’s participation in decisions about their health
Children's participation for better healtcare
General Comment 12 of the CRC (paragraph 104) states that children should “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 healthcare delivery, children should be given the opportunity to provide confidential or anonymous feedback on their healthcare 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 groups 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 involves 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. The committee is typically 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 hospital experience. It was composed of ten children aged 4 to 17 years, of parents, hospital director, other representatives of the hospital and of external related organizations. This was a first-time experience in France.
For an entire month, hospitalised children were asked to fill in a questionnaire similar to the user satisfaction surveys that are usually released to adults at the end of their hospital stay. Topics included the manner in which patients had been welcomed, the quality of meals,
accommodation or pain management. Children and parents were also invited to submit ideas and projects. The following four proposals were selected for implementation: 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).
Find out more about this initiative (in French)
Find more about the 2022 and 2024 editions (in French)
PEDSTART and Kids France get children involved in pediatric clinical research in France - France
A unique initiative in France, the KIDS France group (Involving young people in clinical research in France), supported by PEDSTART, the INSERM/F-CRIN network of excellence in paediatric clinical research, regularly brings together young people aged 11 to 19, both patients and nonpatients, around a common goal: to make pediatric clinical research more adapted to young patients, and more accessible and understandable to all. Recognized by international institutions such as the European Medicines Agency for its contribution to improving understanding, communication and innovation in pediatric medical research, this initiative has already led to the completion of numerous projects.
Over the past 6 years, these young people have been involved in selecting European projects, writing information leaflets for therapeutic studies, disseminating clinical study results, running disease awareness campaigns, creating mini-films on clinical research (e.g. "Clinical research: from molecule to drug"), and reviewing pediatric research protocols (design, procedures, ethics, etc.).
They have also taken part in national and international conferences, in the production of a TEDx, of booklets for young children (e.g. on the ophthalmological effects of a rheumatoid arthritis) and in the creation of a national vaccinology platform for children (COVIREIVAC enfant).
Through these activities, the young people in the group learn about clinical research methodology and help to improve therapeutic innovation in paediatrics.
PEDSTART and Kids France get children involved in pediatric clinical research
Advice and resources for setting up and facilitating the work of a YPAG – UK and Europe
The first YPAG emerged in the UK (GenerationR) in 2006 with and is now a model adopted across Europe (see European YPAG network or eYPAGnet) and globally via the International Children’s Advisory Group Network.
GenerationR, has developed, sometimes in partnership with YPAGnet, extensive resources on how to involve children and young people in health research, including:
- Guidance on how to involve young people in research design
- Activities (icebreakers, ideas for agendas, etc)
- Online Toolkit on how to set up a Young Person’s Advisory Group
- Resources on designing age-appropriate patient information sheets (Guidance for patient information sheets, Checklist for patient information sheet, Strategies for improving assent forms for children’s participation in health research).
OECD reports:
'Health at a glance' monitors PREMS in outpatient care in 19 countries, the results of which are published every two years.