Complicating ‘Voice’ and ‘Choice’: The Role of Child Life Specialists in Shaping Children’s Health Care Participation Rights in the Netherlands

Abstract

Despite a growing trend towards the recognition of children’s participation rights, many children are not provided with adequate opportunities to participate in decision-making regarding their health and healthcare. Child life professionals, as members of the pediatric team, are often poised to promote children’s rights - in particular, the participation rights of hospitalized children. However, a lack of research exists on the role of child life professionals in shaping children’s participation rights. This paper reports on central findings from a qualitative study exploring the experiences of child life professionals with children’s participation in decision-making in pediatric hospitals in the Netherlands. Semi-structured interviews were conducted with two groups of participants, child life professionals (n = 12) and hospital directors (n = 5), and 17 pertinent legal, institutional, and professional documents were analyzed. The findings shed light on various complexities in shaping children’s participation rights. While child life professionals and directors associated value and importance to children’s participation, children’s involvement in decision-making were shaped by adult-dominated and (age-based) developmental discourses. Implications for the field of child life and broader pediatric healthcare policy developments are discussed.