Guide to children’s participation in decisions about their health
What is meaningful participation?
There are different principles that can help professionals to promote meaningful participation of children in decision-making processes. In this context, meaningful should be understood as involving children in a manner that is respectful, ethical and constructive.
These principles are listed as basic requirements for the implementation of the right of the child to be heard under General Comment 12 of the UNCRC (paragraph 134).
Participation in decision-making processes should be:
Transparent and informative
From the start, professionals should inform children about their right to be involved in decisions about their health. This means ensuring children understand their own role, their parents’ and that of professionals; and how decisions will take place.
Relevant
Children should be able to give their opinion and contribute to decisions and processes that build on their own knowledge and focus on issues, which are relevant to their lives. This also means that children should be involved in ways, at levels and at a pace appropriate to their capacities and interests.
Child friendly
Child-friendly approaches should include allocating sufficient time to communicate effectively with children, developing professionals’ attitude to children and to child participation itself, their capacity to adapt, as well as ensuring the availability of supportive resources, such as child-friendly information materials and an adequate physical environment.
Safe and sensitive to risk
Adults working with children have a duty of care. Professionals must take every precaution to minimise the risks to children of abuse and exploitation and any other negative consequences of participation. Professionals should be aware of and adhere to their legal and ethical responsibilities in line with their agency’s Code of Conduct and Child Safeguarding Policy.
Participation is supported by training of adults
Professionals working with children must have the knowledge and capacity to facilitate meaningful children’s participation.
Inclusive
Children’s participation must provide opportunities for children in vulnerable situations to be involved and should challenge existing patterns of discrimination. This means that participation should be flexible enough to respond to the needs, expectations and situations of different groups of children, taking into account their age range, gender and abilities. Professionals must be sensitive to the cultures of all children participating.
Respectful
Children should be treated with respect and provided with genuine opportunities to express their views and to be listened to. Professionals should also respect, and gain an understanding of, the family, school and cultural context of children’s lives. Participation should be a way to help children build knowledge, skills, self-esteem and confidence.
Voluntary
Children should have the possibility to choose the extent to which they want to be involved and the right to withdraw from any process, at any given time. Different children at different times might prefer to have varying degrees of involvement or responsibility. The level of involvement can differ from child to child and between circumstances. The child’s wishes in this regard should be respected.
Accountable
Following their participation, children must be provided with feedback and/or follow up regarding how their views have been interpreted and used, and how they have influenced any outcomes.
Participation is a continuous process and does not stop with children’s views being expressed, it also involves adults - notably health professionals and parents - and children co-producing decisions. Understanding participation in this way encourages children and adults to work together for meaningful participation. Participation contributes to improving practices by developing more effective partnerships with health care professionals.
Children’s participation should be based on their evolving capacities
Children’s participation should be based on their evolving capacities: The concept of the evolving capacities of the child is fundamental and enshrined in the Convention on the Rights of the Child as it recognises children’s developmental characteristics and needs, their competencies and emerging personal autonomy (LansdownLansdown, G. (2005). The evolving capacities of the child. UNICEF Innocenti Research Centre.). Children’s age, maturity, but also their life experiences should be taken into account when enabling a child to participate. This is not to say that young children should not participate, but that as children grow and develop, they should be ever more involved in decisions. The practical implication of this is that even if a child does not yet have fully developed capacity for all types of decisions and participation, that does not mean that they lack any capacity for taking of decisions.
Participation should contribute to achieving the best interests of the child
The principle of the best interests of the child is enshrined in the UNCRC and is crucial to any decision that concerns children. This principle, closely linked to the evolving capacities principle, places children at the centre of the decision-making process, looking at what is best for each individual child, taking into account their age, maturity, personal characteristics, but also the short, medium and long-term consequences of a given treatment and intervention to the life of that particular child. The child's best interests must not be seen as limiting his or her right to participate; on the contrary, the child's participation is a means of achieving his or her best interests.
