Guide to children’s participation in decisions about their health  

Providing appropriate information

Any decision-making process should be based on clear information about what is known and what can be expected both in terms of the process itself and the roles of different stakeholders involved. In healthcare, informing children can help them understand their situation, overcome possible fears and anxiety surrounding treatments and generally empower them. Information is also a pre-requisite for meaningful participation and is applicable to all children, independently of their age, background, or health status. 

Some children face additional challenges or barriers to being included in decision-making processes, for example, children with a disability, children experiencing mental health problems or a specific health condition, young children, as well as children from vulnerable groups. Therefore, targeted and appropriate support should be provided on a case-by-case basis, to enable the equal exercise of children’s right to participate.

Children should be provided with appropriate and necessary information to enable them to acquire competence for making decisions, to weigh the aim, methods involved, necessity and usefulness of a proposed treatment or intervention against its risks and the discomfort or pain it will cause.  Information, communication and education should also enable children and families to play active roles in achieving, protecting and sustaining their own health.

 Information should be given about the following aspects:

 The specific situation the child is going through, such as information about a new illness, developments of a chronic or other long-term illness or planned hospitalisation experience

 Type of treatments and duration, benefits to the child and related risks or possible effects (i.e. what could go wrong, cause problems or make the child worse)

 Any alternatives to treatment that are suitable to the child

 Any additional needs that may influence the choice of treatment

 What might happen if the child does not receive the proposed treatment

 Which healthcare professionals they will meet, who they are, and what their role is

 Children’s right to be informed throughout the process, to ask questions, express their views and how they will be involved in the decision-making process 

 Children’s rights concerning their participation in paediatric research and clinical trials, where applicable.

A sensitive issue sometimes is whether and how to talk to children about serious consequences. One may be tempted to avoid mentioning possible fatal outcomes, pain, risks of disability, etc. This requires an assessment of children's maturity in receiving this type of information and their capacity to express their opinion on the subject, as well as a thorough evaluation on the timing and best way to communicate, but it should not be assumed that such serious subjects should be avoided with children. The giving of information actively helps many children to cope with even the most difficult of circumstances, and the absence of information may exacerbate fear and distress. Information to children about serious consequences should always be given carefully and psychological support should be offered to children and their families throughout the information process.

The information provided by healthcare professionals must be sufficiently clear and suitably worded, for example, professionals should avoid the use of medical jargon and include terms that the child can understand. Conversely, if the language used is too childish, the child may feel patronised, so the right balance is important. Sometimes it may be necessary to give information in stages that can be understood and absorbed, and it may be useful to repeat the same information at different times and stages or to complement verbal information with written information where possible and appropriate. In the case of non-native speakers, information should be made provided in a language the child understands (see also examples of linguistic and cultural mediation services in the decision-making phase).

Child-friendly information materials can be used to support the communication and mutual understanding of children, parents and healthcare professionals. It also helps children to reflect on the information they received orally and to identify questions for a follow-up conversation with the healthcare professionals. Child-friendly materials may cover any of the topics listed above and can be developed with a participatory methodology to be better adapted to children’s needs and understanding. Possible formats of child-friendly information material include brochures and leaflets, videos, information accessible through social media, specific websites or applications, games and other. Professionals may also use dolls or toys for “pretending” or simulating. 

In any case, it is important that healthcare professionals who interact with the child make sure they coordinate among themselves to avoid giving potentially contradictory information or repeating the same information too many times.