As emphasised in this Guide, participation is a rolling process that encompasses different considerations. Importantly, even where, according to national legislation, children may not be able to give their consent to a treatment or intervention, their views and opinions should nevertheless genuinely influence decisions. This means that children’s views and opinions should be taken seriously and given due weight in any final decision. This should be done by taking children’s evolving capacities into account. Childhood is not a single, fixed, universal experience. At different stages in their lives, children require different degrees of protection, provision, prevention, information and participation. Children’s wishes should be considered seriously, most of all in relation to health care and biomedical research. 

The issue of seriously considering children’s views is a fundamental one. At times, children may be listened to only when the issue at stake is trivial. The more serious the situation, the less likely it may be that the child’s views are considered, particularly where they may be different from the views of adults. 

Also, when children’s views differ from those of adults, whether parents or professionals, they might be simply disregarded and children do not receive explanations as to why another option was finally decided upon, other than the one they preferred. However, professionals do have a duty to ensure that children’s rights to participate in their own care is respected and the severity of a situation does not alter this right, which is equally important in all situations. 

Conversely, matters that may appear trivial to adults can have great importance for a child. Neglecting to recognise children’s participation in those decisions can erode the child’s trust in larger ones and in the people around them. In more severe circumstances, failure to recognise and facilitate a child’s right to participate in significant decisions and ensure that these are demonstrably given consideration, may not only erode a child’s trust, but also create further divisions and difficulties later, at a time when the supportive relationships that are often so important for a child, may already be strained or damaged. This may be particularly so in situations where a child may be considered as competent and their viewpoint well-informed.

The level of children’s participation should be informed by their abilities and preferences.  Children must be guided throughout the process and adults must ensure the conditions in which these can be met, by providing appropriate information, listening to the children and taking their opinions seriously into account. All efforts should be done to maximise the opportunity for any child to choose to participate in decisions regarding their health if they choose, at the highest level of his/her ability. The confidence and competence to be involved will be gradually acquired through practice, but this does not mean that young children should not be involved as well as older children. For example, enabling children to take part in decisions of “lesser importance”, such as whether they would prefer an injection on the right or left arm or to be seated or lying down during a treatment, can instil a culture of child participation in daily clinical practice.

A starting point for identifying a reasonable treatment decision for a child involves weighing the benefits against the burdens of a proposed treatment or research in the context of what is known of the patient’s values, beliefs, family relationships and cultural norms. Children can form and express views already from an early age but the nature of their participation, and the range of decisions in which they are involved, will necessarily increase in accordance with their age and evolving capacities. This requires professionals to recognise the diverse capacities of each individual child and tailor their interactions with them in a way that neither overestimates nor underestimates their capacity. For some professionals or other adults, this may be a fundamental shift from the way they view children, by not seeing age as a barrier. Clearly, very young children or for instance, some children with disabilities, cannot do certain things just as some adults have limited capabilities. This should not bring into question or negate the capacities that they do have, nor the need to support them in expressing these or having them recognised. Children can make or contribute to complex decisions.