273 Discussion constraints, and problems with scheduling meetings with a group of adolescents. These barriers were also observed in other studies in different research domains (7, 56, 57). Directions for future research Part 1: Pediatric patient engagement Challenges regarding pediatric patient engagement Lack of uniformity in defining pediatric patient engagement and tokenism are major issues regarding the engagement of children and adolescents in clinical care, policy, and research. This is further exacerbated by external pressure from funders to include pediatric patients in research. As long as the added value and impact of pediatric patient engagement are not fully recognized, and challenges as funding, representativeness, and letting go of control are not yet overcome, it remains challenging to break through these issues (4, 58). Uniformity in pediatric patient engagement, as well as more support for clinicians in the form of guidelines, shared lessons, and support tools is necessary. In this thesis, we have taken a first step towards this goal (sharing information around pediatric patient engagement and development of an engagement tool). However, to work towards a more uniform way of (reporting on) pediatric patient engagement, we recommend the development of a guideline in co-creation with all stakeholders. This guideline should include information regarding the operationalization and goal of pediatric patient engagement, setting, participants, used methods, feasibility, and shifting dynamics of control. Changing power dynamics requires a paradigmatic shift and is often seen as the main reason for resistance among clinicians (59). Information regarding the shifting dynamics of control can facilitate patient engagement. The importance of uniformity regarding (pediatric) patient engagement is recognized by other researchers in the field. For example, a scoping review will be conducted by Oravec et al. (60) to gain a better understanding of how patients and caregivers been engaged in scoping reviews that followed the methodology of Arksey and O’Malley (61) and Levac (62), and to work towards a guideline regarding the engagement of patients in scoping reviews. Such a guideline will help researchers to involve patients as partners in conducting scoping reviews. This can help to better understand patients’ health conditions and experiences. In addition, there is limited information available regarding the used methods to engage pediatric patients. Yet, methods are chosen based on availability of patients to participate, age of the participants, and target group (4, 7). Future research should focus 9
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