Guide to children’s participation in decisions about their health
The key stakeholders in the decision-making process:
the roles of children, parents, professionals
The therapeutic relationship in child health care is typically triadic, involving the health professionals, the young patient and his/her parents or legal representative.
Meaningful child participation in health care 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.
As emphasised throughout the Guide, 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 other stakeholders (parents and health professionals) want and what is genuinely in the best interests of each child.
Children are at the centre of the decision-making process.
The views of children must always be sought, obtained, and given due weight.
A child’s age or degree of maturity does not determine the existence of his/her right to participate, but rather the weight that ought to be given to the child’s view.
Children must be considered as individuals, with specific characteristics and needs that need to be taken into account.
The level of participation of a child 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. Some children, especially those who are not used to being consulted, may be inclined to "self-censorship".
The level of participation of a child is therefore also very much dependent on the attitude of adults, who need to promote and encourage participation and create an environment and conditions in which it can happen.
Children will have different views on their parents’ involvement.
Many children will want their parents to be involved in decisions. Some will want to be heard and considered but may find it overwhelming to decide and will want to leave it 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 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 for decision making processes if they are not comfortable with this.
In all cases, children should be guided by adults, based on their experience and expertise, but provided from a place of respect and consideration in relation to children and ensuring that there is the necessary space for children to interact.
Parents, and other holders of parental responsibility, are key players in this shared decision-making model.
Parental duties and responsibilities evolve over time.
As in other areas of life, parents are legally required to provide their children with the “appropriate direction and guidance” (UNCRC Article 5) and have a key role in their protection and in the achievement of their best interests. In many legislations, parents will be the de facto decision-makers (or substitute decision-makers) as they are required to authorize medical acts on behalf of their children, until these reach either a certain age or stage of maturity.
But parents’ duties and responsibilities are to be considered as limited in time, as determined by the evolving capacities of the child, limited in scope as determined by his/her 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: whereas parents and legal guardians are the de facto decision-makers in early infancy, thereafter, their role evolves, ie “(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 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 and may feel powerless and uncertain about their child's health care - 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).
Parental participation 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 and supported, in order for them to take an active part in the decision-making process and so that they can in turn support and guide their child.
To start with, parents need to be adequately informed about their child's health condition and about the different options for treatment, in a way that they understand (Jackson et alJackson C., Cheater F. M., Reid I. (2008). A systematic review of decision support needs of parents making child health decisions. Health Expectations, 11, (p.232–251). https://doi.org/10.1111/j.1369-7625.2008.00496.x, Uhl T. et alUhl T., Fisher K., Docherty S. L., Brandon, D. H. (2013). Insights into patient and family‐centered care through the hospital experiences of parents. Journal of Obstetric, Gynecologic & Neonatal Nursing, 42, (p.121–131).) . A lot of the guidance on the kind of information a child must receive applies to parents. What differs is how the information will be given.
In that respect at least, parents are partly dependent on if, how and when health care professionals involve them in decision-making about their child's health.
Generally, the better parents are informed, the better they will be in a position to guide 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 a parent will be adequately shared and discussed with the child. In that respect, interestingly, 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).).
Health care providers, while not decision-makers per se, have a significant role in medical decision-making throughout childhood.
Healthcare professionals have a legal responsibility and professional duty to ensure that the rights, dignity and safety of children are upheld, and therefore have 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 the manner in which the professional(s) or team of professional(s) prompts and supports her/him to do so.
Most of the time, health workers will 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 health care 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 an adult–adult conversation. 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 health care 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.