BLOG: Fulfilling children´s right to participate and be involved in complex settings such as hospital treatment, child protection, court proceedings, is difficult to realize. However, in the health sector the support of a psychosocial professional is a promising solution to securing children’s rights that may be considered within in other sectors.
Blog post by Amarens Matthiesen, recent PhD graduate, sessional instructor and research assistant in the School of Child and Youth Care at the University of Victoria in British Columbia, Canada. She is also a certified child life specialist who has providing psychosocial care to children and families in hospitals across Canada.
In child rights scholarship and practices, the notion of children’s representation broadly involves speaking or acting on behalf of children. This principle underscores how children’s ‘voices’ are formalized in decision-making processes and the political dimensions in how children and childhood are understood. Despite a prominent recognition of children as autonomous decision-makers in child rights scholarship, children often rely on a person or a group of people (usually adults) who represent(s) them in various social practices and institutions (Sandin et al., 2023). Therefore, children’s representation remains a complex and dynamic issue.
In the pediatric healthcare sector, hospitalization can restrict one’s sense of control, self-determination, and freedom of choice – for children and family members alike (Delvecchio et al., 2019). Children have reported that their participation in decision-making[1] can act as a useful strategy to enhance their sense of control over their health and minimize hospital-related fears (Salmela et al., 2010). While participation in decision-making is recognized as a fundamental children’s rights principle in healthcare, adults (e.g., caregivers, healthcare providers) play a prominent role in representing children’s best interests in decision-making (Dorscheidt & Doek, 2018).
Complicating factors shaping children’s decision-making in healthcare
Despite the legal backdrop of the UNCRC and healthcare-specific guidelines[2] and toolkits[3] on promoting children’s rights, research suggests that children have insufficient opportunities for decision-making in hospitals (Coyne et al., 2011; Quaye et al., 2019). Children’s decision-making is primarily complicated by the involvement of adult caregivers and health care providers in ‘shared’ decision-making triads (Coyne et al., 2016). In such triads, children and adults have individual beliefs, preferences, and understandings of children’s decision-making. Adults’ developmentalist beliefs about children’s decision-making ‘capacities’ often promote the idea that children’s capacity to make decisions increases with age. However, such age-based ideas do not recognize the decision-making capacities of younger children with significant social maturity and/or previous health care experience, for example (Salbatello et al., 2018).
A child’s medical status can also shape the degree to which children can participate. Particularly acute- and/or palliative conditions may necessitate caregivers to take a leading role in decision-making (Matthiesen, 2022). Moreover, national guidelines that outline the legal age at which children can provide informed consent to medical treatment differ between countries, provinces, and states – creating confusion around when and how children are deemed as ‘capable’ of participating (Aarthun et al., 2019; Lipstein et al., 2015). Children’s rights may therefore be at stake in medical care, particularly when difficult medical-ethical issues arise pertaining to the decision-making autonomy of children with disabilities and/or medical complexities, children in foster care, children with life-limiting conditions (including euthanasia), as well as in prenatal care (Dorscheidt & Doek, 2018; Russell et al., 2014).
The role of child life specialists in facilitating children’s participation rights
Given the complexity of children’s participation rights in healthcare, children require varying degrees of support from healthcare providers to facilitate children’s involvements in making health(care) decisions. In Canada and the United States, a child life specialist[4] is a healthcare provider dedicated to providing psychosocial support to children and young adults. Child life specialists help hospitalized children cope with hospitalization and the uncertainties of illness, injury, trauma, loss, and bereavement (ACLP, 2023a; Romito et al., 2021). They aim to enhance the optimal wellbeing and development of children by providing assessment, intervention, education and advocacy for children and families (ACLP, 2023a). Through a family-centered lens, child life specialists are trained to provide emotional support to children and family members (e.g., siblings) using developmentally appropriate and play-based techniques.
Compared to other members of healthcare teams, child life specialists play a unique role in promoting children’s participation rights. By preparing children for medical procedures in developmentally appropriate manners, child life specialists aim to enhance children’s social agency. In therapeutic and trust-based relationships with children and families, child life specialists also aim to promote the self-advocacy skills of children and families in making decisions regarding the child’s health and healthcare. Despite these promising elements of child life practice, an explicit recognition of the value that child life specialists offer in enhancing children’s participation rights remains underreported (Matthiesen, 2022).
A global perspective on child life practice
In Western contexts, child life practice represents a relatively novel profession that emerged in the 1950s as hospitals began to attend to the emotional needs of hospitalized children. Across North America, child life specialists are currently well-integrated into most major pediatric hospitals and some out-patient care settings (e.g., pediatric dentistry). There are currently 5,908 child life specialists practicing in the United States and 337 in Canada (Wittenberg et al., 2020). In other countries such as Japan[5], there are currently 54 practicing child life specialists (Wittenberg et al., 2020). In Australia, ‘child life therapists’[6] also hold similar job responsibilities to child life specialists and are also relatively well-integrated members of pediatric healthcare teams.
In many European countries, similar practitioners exist but the profession remains less well represented compared to North America. In the United Kingdom and the Netherlands, ‘health play therapists’[7] and ‘medical pedagogical care providers’, respectively, also provide play-based psychosocial support to children and families. In Switzerland, one hospital currently offers a one-person child life program (ACLP, 2023b).
In Scandinavian countries such as Sweden and Norway, professionals who provide play-based therapy to children in hospitals exist, but their role remains more restricted compared to that of North American-based child life specialists (R. Ferguson, personal communication, January 13, 2023). In Denmark, psychosocial play-based professionals are not integrated in major pediatric hospitals. In these Scandinavian countries, other healthcare providers such as psychologists, social workers, and/or nurses may therefore have to take on an additional responsibility when providing psychosocial support to children.
A relational view of children’s participation rights
The challenges associated with realizing children’s rights in complex social systems underscores the need for practical and ‘child-friendly’ adult facilitators who can help guide children (and caregivers) in how to participate in decision-making. In healthcare, child life specialists are ideally positioned to fulfill this role. The need for adult facilitators of children’s rights is also relevant for other sectors, such as child protection. Compared to healthcare, this sector shares similar features and challenges in realizing children’s participation rights (Križ & Skivenes, 2015). For example, children involved in custody cases in court require assistance in decision-making and navigating the child protection system. In these cases, child welfare/protection workers and/or social workers can also act as practical facilitators of children’s rights.
Ultimately, implementing children’s meaningful rights to participation requires a recognition of the context and relationships within which children’s lives and decisions are situated (Abebe, 2019). In complex systems such as healthcare, the experiences of children and their caregivers can be diverse and characterized by changing degrees of (in)dependence. For example, while caregivers are the primary providers of support and assistance to their children, caregivers may also prefer to depend on healthcare providers to facilitate shared decision-making processes for their child. Therefore, in contrast to ‘straightforward’ conceptions of children as fully autonomous ‘beings’, children’s involvements in decision-making depend on “who children are with, what they are doing, and where they are” (Abebe, 2019, p. 8). In scholarship and practices, there is a need to recognize that children participate and exercise agency together with and alongside adults in social systems.
[1] Such decisions may take the form of ‘minor’ (e.g., deciding in which arm an injection is placed, what to eat/wear) and ‘major’ (e.g., deciding whether to pursue treatment or not) decisions (Coyne et al., 2021).
[2] In a European context, a core underlying principle of the Council of Europe’s Guidelines on Child-Friendly Health Care (2011) is that children hold the right to be informed, consulted, and heard, to give their opinions independently from their parents and to have their opinions taken into account in healthcare.
[3] The European Children’s Organization represents many leading pediatric hospitals across Europe and aims to serve as an ‘echo’ of children’s rights, as outlined in their ‘Child Rights Toolkit’ (2019).
[4] In North America, the child life profession is governed by the Association of Child Life Professionals (ACLP) from which child life specialists require certification in order to practice as a certified child life specialist (https://www.childlife.org/).
[5] In Japan, child life specialists’ practice is governed by the Japanese Association of Certified Child Life Specialists (http://childlifespecialist.jp/).
[6] In Australia, child life therapists’ practice is governed by the Association of Child Life Therapists Australia (ACLTA) (https://www.childlife.org.au/).
[7] In the United Kingdom, the National Association of Hospital Play Staff governs the practice of play therapists (http://www.nahps.org.uk/).
References
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Abebe, T. (2019). Reconceptualising children’s agency as continuum and interdependence. Social Sciences, 8(3), 81.
Association of Child Life Professionals (ACLP) (2023a). The child life profession. Retrieved from: https://www.childlife.org/the-child-life-profession
Association of Child Life Professionals (ACLP) (2023b). International child life groups. Retrieved from: https://www.childlife.org/resources/international-child-life-groups
Council of Europe (2011). Guidelines on child-friendly health care. Retrieved from: https://rm.coe.int/168046ccef
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Coyne, I., O’Mathúna, D. P., Gibson, F., Shields, L., Leclercq, E., & Sheaf, G. (2016). Interventions for promoting participation in shared decision‐making for children with cancer. Cochrane Database of Systematic Reviews, (11).
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Matthiesen, A. (2022). Children’s rights to participate in health care decision-making and the role of child life specialists in the Netherlands: A critical and focused ethnography. (Doctor of Philosophy), University of Victoria, Victoria, British Columbia, Canada. Retrieved from: https://dspace.library.uvic.ca/bitstream/handle/1828/14570/Matthiesen_Amarens_PhD__2022.pdf?sequence=1&isAllowed=y
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