Guide to children’s participation in decisions about their health
Key stakeholders in the decision-making process:
the roles of children, parents and health professionals
The therapeutic relationship in child healthcare is typically triadic, involving the young patient, their parents or legal representative, and the health professionals.
Meaningful child participation in healthcare decision-making involves doing away with practices based on the assumptions that a parent or doctor automatically “knows best” (based on age, life experience and professional expertise). It requires for a shift towards a shared decision-making model which respects 1) the views and the emerging capacity of the child patient, 2) the parental authority and 3) the knowledge and the expertise of the health care professionals. Under this new paradigm, adults and children work together to reach decisions.
A good decision must take account of, consider and balance what the child wants, what is needed to secure the child’s health and wellbeing (including their survival, healthy life and development), what the parents and health professionals want, and what is genuinely in the best interests of each child.
Children
Children should be at the centre of the decision-making process.
Their views should always be sought, obtained, and given due weight.
A child’s age or degree of maturity does not determine the existence of their right to participate, but rather the weight that ought to be given to their view.
Children should be considered as individuals, with specific characteristics and needs to be taken into account.
The level of a child's participation will differ according to their capacity, life experience and individuality.
While some children will easily take part in the process, others may not feel authorised or comfortable to do so, and will need to be invited, sometimes repeatedly, and encouraged, using appropriate methods. Other children, especially those who are not used to being consulted, may be inclined to to self-censorship.
The level of a child's participation also dependent on the attitudes of adults, who need to promote and encourage participation and to create an environment and conditions in which it can happen.
Children will have different views as to their parents’ involvement in decisions.
Many of them will want their parents to be involved. Some will want to be heard and have their views considered but may find it overwhelming to decide and will want to leave the final say to their parents. Such wishes must be equally respected and are an equally valid form of child participation.
While participation in decision making processes is extremely important, and all efforts should be made to ensure the conditions for children to participate (particularly children who have not been previously encouraged to do so), children should not be put in a position where they are asked to carry the burden of decision making if they are not comfortable with this.
Children should be guided by adults, who should draw on their experience and expertise, but importantly, that should always be from a place of respect and consideration in relation to children and ensuring that there is the necessary space for children to interact.
Parents
Parents, and other holders of parental responsibility, are key players in this shared decision-making model.
Parents are legally required to provide their children with the “appropriate direction and guidance” (UNCRC Article 5) and are critically important in their protection and in the achievement of their best interests. In many legislations, parents are the de facto decision-makers (or substitute decision-makers), required to authorise medical acts on behalf of their children until the latter reach either a certain age or stage of maturity.
Parental duties and responsibilities are however limited in time, as determined by the evolving capacities of the child, limited in scope as determined by the child's best interests, and functional in nature as they are to provide for the care, protection and well-being of the child (Roberta et alRoberta R., Volnakis D., Hanson K. (2017). The inclusion of ‘third parties’: The status of parenthood in the Convention on the Rights of the Child, Children's Rights Law in the Global Human Rights Landscape, Isolation, inspiration, integration ?, Edited by Brems E, Desmet E, Vandenhole W, Routledge Research in Human Rights Law (pp.71-89, pp. 82-83).
See also: Jonathan Law, Elizabeth A. Martin, A Dictionary of Law, 7th edition, Oxford University Press (2014).). Parental duties and responsibilities change and usually diminish over time: “(T)he more a child knows and understands, the more his or her parents will have to transform direction and guidance into reminders and gradually to an exchange on an equal footing” (General comment No. 20 (2016) on the implementation of the rights of the child during adolescence, paragraph 18).
Parents’ degree of involvement in decision-making varies depending on their life experiences, cultural background, parenting cultureParenting culture refers to the way parents involve their children in matters of daily life. and degree of health literacyHealth literacy is linked to literacy and entails people’s knowledge, motivation, and competencies to access, understand, appraise, and apply health information in order to make judgments and make decisions in everyday life concerning health and healthcare..
For example, some parents are not involved or listened to by clinicians and may feel powerless and uncertain about their child's healthcare - which in turn limits their ability to support their child (Tallon M.M. et alTallon M.M., Kendall G. E., Snider P. D. (2015). Development of a measure for maternal confidence in knowledge and understanding and examination of psychosocial influences at the time of a child's heart surgery. Journal for Specialist in Pediatric Nursing, 20, (p.36–48). https://doi.org/10.1111/jspn.12096, Edwards, M. et alEdwards, M. , Davies, M. , & Edwards, A. (2009). What are the external influences on information exchange and shared decision‐making in health care consultations: A meta‐synthesis of the literature. Patient Education and Counseling, 75, (p.37–52). https://doi.org/10.1016/j.pec.2008.09.025).
This will also vary according to the type of medical act that is being considered. In certain circumstances, families may feel that standardised protocols leave them little room for choice (Coyne et alCoyne I., Amory A., Kiernan G., Gibson F. (2014) Children’s participation in shared decision-making: children, adolescents, parents and health care professionals’ perspectives and experiences. European Journal of Oncology Nursing 18:(p.273–280)).
It is essential that parents are sufficiently empowered to take an active role in the decision-making process and support and guide their child. , They are partly dependent on if, how and when healthcare professionals involve them in the decision-making process. Generally speaking, the more parents are informed, the better they will be able to support the child.
While involving parents is crucial, it is important that the process remains child-centred. The child must be informed directly and included in discussions. It should not be assumed that information given to the parents will be shared and discussed with the child. Research on interactions during paediatric consultations has suggested that children's contribution to the interaction with the doctor tends to be inversely proportionate to the contribution of the parent(s) (Wassmer et alWassmer E., Minnaar G., Abdel Aal N., Atkinson M., Gupta E., Yuen S., Rylance G. (2004), « How Do Paediatricians Communicate with Children And Parents? », Acta Paediatrica, 93, (p. 1501-1506) cited in Stefania Fucci, “L’écoute des enfants dans les contextes de soins”, Revue des sciences sociales, 63 | (2020, p.88-95).).
Healthcare professionals
Healthcare professionals, while not decision-makers per se, play a significant role in medical decision-making regarding children.
They have a legal responsibility and professional duty to ensure that the rights, dignity and safety of children are upheld. Consequently, they play a central role in advocating for and facilitating child participation in practice.
This includes a duty to provide patients and other persons involved with the necessary and adequate information. It also requires investing time and building trust so that the child feels comfortable and safe throughout the process (Sjöberg et alSjöberg C, Amhliden H, Nygren J M, Arvidsson S, Svedberg P, (2015) The perspective of children on factors influencing their participation in perioperative care, Journal of Clinical Nursing, 24, (p.2945–2953), https://doi.org/10.1111/jocn.12911) and can effectively co-construct the decision concerning them. A child’s participation will therefore very much depend on how and if the professional(s) or team of professional(s) prompts and supports them to do so.
Most of the time, health professionals partner with parents/legal representatives, for example, to simplify complex treatment regimens whenever possible and educate the family to avoid behaviours that will put the child at risk. However, sometimes they may need to challenge the views of parents when these do not seem to reflect the child's best interests (Beauchamp et alBeauchamp, T. L., & Childress, J. F. (2013). Principles of biomedical ethics. New York, NY: OUP.).
The Guide considers some avenues for how to address conflicts that may arise during the decision-making process, among the different stakeholders.
From theory to practice
While it is increasingly recognized that child participation is desirable, that children can understand and act competently and that direct communication between health professional and child yields benefits, in practice, adults still often tend not to involve (or to disregard) children in decisions regarding their health.
It has been observed, for example, that in paediatric consultations, the healthcare professional will often involve children by asking them questions, in view of obtaining information, but will then turn to the parent(s) when providing explanations about a diagnosis and children are unlikely to participate in other parts of the discussion, such as treatment planning and discussion, and this regardless of the child’s age (Favretto and ZaltronFavretto A.R., Zaltron F. (2013), Mamma non mi sento tanto bene. La salute e la malattia nei saperi e nelle pratiche infantili, Roma, Donzelli Editore.).
Moreover, if a health professional is talking with a child and a parent interrupts, the consultation is likely to revert to conversation between adults. As a result, adults often dominate and control consultations (Cahill and PapageorgiouCahill P., Papageorgiou A. (2007). Triadic communication in the primary care paediatric consultation: a review of the literature. British Journal of General Practice, 57(544):904-11. DOI: 10.3399/096016407782317892. PMID: 17976292; PMCID: PMC2169315.).
Professionals sometimes justify this by invoking factors such as a lack of time or bad organization or other. It may however also point to other reasons, such as a difficulty to share decision-making power, not knowing the patient well enough, wanting to protect the child or a lack of adapted communication skills (CoyneCoyne I. (2008), « Children’s Participation in Consultations and Decision-Making at Health Service Level: A Review of the Literature », International Journal of Nursing Studies, 45, 11, (p. 1682-1689). https://doi.org/10.1016/j.ijnurstu.2008.05.002, cited in: Stefania Fucci, “L’écoute des enfants dans les contextes de soins”, Revue des sciences sociales, 63 | (2020, p.88-95). ).
A lot can still be done, from the part of healthcare professionals, to ensure that children are enabled to participate meaningfully and actively in decisions regarding their health. Health professionals of all levels need to receive regular training and supervision, about how to support children’s (and their families’) individual participation needs, capacities, preferences, and expectations, and to help them better respond to those needs and develop their communication skills for children of all ages and all developmental stages.
The next section looks at how health professionals can support child participation throughout the decision-making process.
