Guide to children’s participation in decisions about their health  

Introduction

Human rights instruments, notably the UN Convention on the Rights of the Child (UNCRC), recognise that children are rights holders with a progressively evolving ability to make their own decisions. This reflects a change in the general perception of the autonomy and protection of children regarding their capacity to participate in decision-making. Since the adoption of the Convention in 1989, considerable progress has been achieved at the local, national, regional and global level in the development of legislation, policies and methodologies to promote the implementation of the right of all children to express their views. 

The UNCRC recognises that children have a right to express their views in all matters that affect them, and to have these views properly taken into account. Health is one such matter.

Through its work, the Council of Europe strives to make this right a reality in its member states and has produced guidelines on the implementation of active and meaningful child participation.

Meaningful participation has increasingly been considered as a key standard for achieving high-quality care for children, and the Council of Europe seeks to further promote a child rights-based and participatory approach to health care and research.

Participation in health care in general, has been encouraged by the growing recognition that a patient is equipped with personal skills concerning their body and their state of health and that they are capable of actively contributing to the therapeutic relationship by collaborating and negotiating with the heath professional in order to achieve the best possible state of health.

Similarly, children have unique knowledge about their lives, needs and concerns and taking their views into account in decisions and actions that affect them brings significant immediate and long-term benefits for them, as well as for the community and enables to make better, more informed decisions. Children who actively participate in individual decision-making processes which concern them are likely to be more informed, to feel better prepared, and to experience less anxiety about the unknown. Participation instils children with a sense of control, which results in increased cooperation with procedures, better adjustment and adherence to treatment, which helps to reduce conflicts that may arise during these processes. Children develop competence and confidence, leading to their empowerment and increasing ability. Participation also helps to improve care, as the child brings unique expertise from their own experience.

However, there is often uncertainty as to how the increased recognition of children’s decision-making capacity in matters concerning their health and general well-being should be addressed in practice. Finding the right balance between autonomy (the right of children to be heard and their opinions considered) and protection (the responsibility of adults to protect children and to provide for them) is a challenge when considering that children’s rights are situated within a larger set of parental duties and responsibilities which also focus on their best interests.

 Scope and aim of the Guide

The Guide is intended to provide practical guidance about how to involve children in decision-making processes concerning their health. It aims, first and foremost, to help health care professionals, and other professionals involved: 

  • 1) understand what their role is in supporting children, families and other professionals working to participate in the process, 
  • 2) develop their practice in this area, informed by relevant principles, frameworks, legislation, and good practice.

It will also be helpful in sensitizing parents and/or legal representatives.

For the purpose of this document, a “child” refers to any person under the age of 18 years. The term “parents” must be understood as “parents or other holders of parental authority”.

The Guide focuses on the participation of children in individual health-care decisions. However, the last section briefly looks at how children’s involvement in the development of health policy and services also contributes to improving paediatric care generally, as well as individual decision-making processes.

 

 Methodology

The Guide was prepared by a group of government and independent experts.

The Drafting Group was co-chaired by Ms Ritva Halila (CDBIO member from Finland) and Mr Joost Van Haelst (CDENF member from Belgium) and included experts from France, Mexico, Sweden and United Kingdom.

The draft was then submitted for consultation to key stakeholders (Council of Europe delegates, representatives of scientific societies, research organisations, health care institutions, etc.).

It was also discussed with a group of children from the by TEDDY European Network of Excellence for Paediatric Research / TEDDY Kids. Focus groups discussions were held with 20 children aged 12-18 from Albania, France, Greece, Italy, Latvia, and Malta. 

The text was revised and enriched based on these contributions.