Guide to children’s participation in decisions about their health
International human rights instruments recognise that children are rights holders with evolving abilities to make decisions in all aspects of their lives, of which health care is a part.
Research also provides evidence of multiple benefits of meaningful participation relating to health and health care, and this has increasingly been considered an important contributor to high-quality care for children and to enable them to achieve the best possible state of health.
However, there is often uncertainty as to how to support the practical realisation of effective child participation in real-world health care situations that are often complex, and accounting for differing legislative frameworks and the roles of other actors such as parents and health professionals. As a result, children currently experience a wide spectrum of practice across member states of the Council of Europe and there is always room for improvement.
The Guide provides practical guidance, primarily for health care professionals, about how to involve all children in decision-making processes concerning their own health. It provides the reader with a concise understanding of the theoretical and legal context and progresses to describe important components of the decision-making process, helping health professionals to understand their role in supporting children, families, and other professionals to enact this in practice. Key concepts of consent, assent, and ‘best interests’ are discussed, as well as common health care situations where participation in decision-making may sometimes be perceived as more challenging. Examples and links to good practice are provided throughout.
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.
Through its work, the Council of Europe strives to make this right a reality in its member states. The Committee of Ministers Recommendation CM/ Rec(2012)2 on the participation of children and young people under the age of 18 provides guidelines on the implementation of active and meaningful child participation, which it defines as children having “the right, the means, the space, the opportunity and, where necessary, the support to freely express their views, to be heard and to contribute to decision-making on matters affecting them, their views being given due weight in accordance with their age and maturity”, recognizing their evolving capabilities.
Further institutional guidance includes Listen – Act – Change - Council of Europe Handbook on children’s participation - For professionals working for and with children (2020)
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. Meaningful participation has increasingly been considered as a key standard for achieving high-quality care for children, as reflected in the Guidelines of the Committee of Ministers of the Council of Europe on child-friendly health care (2011). Through its current Strategy for the Rights of the Child (2022-2027) and its Strategic Action Plan on Human Rights and Technologies in Biomedicine (2020-2025) , 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) to understand what their role is in supporting children, families and other professionals working to participate in the process,
- 2) to 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.
The Guide focuses on the participation of children in individual health-care decisions. However, 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 (section IV).
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 was prepared by a group of government The drafting group comprised members of Council of Europe Steering Committee for Human Rights in the fields of Biomedicine and Health (CDBIO) and of the Steering Committee for the Rights of the Child (CDENF).;and independent experts and then submitted for consultation to key stakeholders (Council of Europe delegates, representatives of scientific societies, research organisations, health care institutions, etc) and its content was also discussed with a group of children Focus group discussions were held by TEDDY network and TEDDY Kids with 20 children aged 12-18 from six countries (Albania, France, Greece, Italy, Latvia, and Malta).The text was subsequently revised and enriched based on these contributions.
This video was developed by TEDDY Network and TEDDY Kids, in coordination with the Council of Europe. A group of children took part in its design; they were aged between 12 and 18 years, coming from Italy, France, Greece and Albania, and included young patients and healthy children. It targets children of a similar age group.