Lorynn Teela

263 Discussion Reflection on the findings & clinical implications Part 1: Pediatric patient engagement Despite the increase in pediatric patient engagement in recent decades, there are still challenges that hinder the involvement of children in clinical care, policy, and research. Literature suggests that lack of uniformity about the definition of pediatric patient engagement, limited information about ways in which children can be engaged, insufficient resources for pediatric patient engagement, difficulties adapting to the shifting dynamics of control of decision-making, and little support for clinicians to engage pediatric patients meaningfully hinders engagement (4-7). These challenges, especially the struggles with the changing degree of influence and control, can even lead to tokenistic engagement (i.e., symbolic or perfunctory form of patient engagement, in which pediatric patients have no influence on the decision-making process (8, 9)). The reduction of these challenges is not easy and requires more uniformity in pediatric patient engagement, as well as more support for clinicians in the form of guidelines, shared lessons, and support tools. In this thesis, we have taken a first step towards this goal: 1. Shared lessons The literature overview in Chapter 2 can inform clinicians, policy makers and researchers about the different ways in which patient engagement can be shaped. It gives them information regarding the methods used in earlier studies and goals for patient engagement. This knowledge can help clinicians to feel more confident and can guide them to engage pediatric patients meaningfully and usefully in their practice. 2. Support tools In Chapter 3 the development of the engagement tool All Voices Count was described. Since the development, All Voices Count was used (or will be used in the near future) to include the opinion of adolescents in several projects in our hospital. Table 2 provides an overview of these projects and related questions for pediatric patients. In addition, the game has been translated to English to extend the scope. 9

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