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




Matthiesen, Amarens

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Children’s participation in decision-making is widely recognized as an important and beneficial legal right with moral and ethical implications. In pediatric health care settings, however, many children are not provided with adequate opportunities to express their wishes, needs, and desires regarding their care or hospital-wide decision-making. While adults (e.g., caregivers, health care providers) play a pivotal role in shaping children’s opportunities for decision-making, a lack of research exists on the role of child life specialists (CLSs) in shaping children’s participation rights. CLSs are psychosocial health care providers who are charged with garnering the trust of children and families and soliciting children’s views in health care contexts. Therefore, child life practice represents an ideal profession in which to explore children’s participation rights. Through a theoretical lens rooted in critical sociology- and nursing-based scholarship, the purpose of this study was to explore the role of CLSs in shaping children’s participation rights in the context of two children’s hospital in the Netherlands. Semi-structured interviews were conducted with CLSs (n=12) and hospital directors (n=5) and pertinent legal, institutional, and professional documentation (e.g., policies, hospital booklets) were analyzed. Thematic analysis of the data revealed that children’s participation in decision-making was characterized as a complex and relational process that was shaped by various inter- and intra-personal and contextual complexities. Findings demonstrated that participants associated value and importance to children’s participation in decision-making processes. However, children’s participation processes were predominantly conceptualized as adult-dominated and shaped by developmental discourses on children’s age-based decision-making abilities. The study findings underscore the potential for embedding relational and inherently critical understandings of children’s participation rights in pediatric health care practices (e.g., child life, nursing), education, and policy development. The knowledge generated by this study can contribute to efforts in bridging a gap between an idealized rhetoric of children’s participation rights and their implementation in complex health care contexts.



Children's participation, Children's rights, Decision-making, Child life specialist, Pediatric health care, Psychosocial care