25 Scoping review pediatric patient engagement Introduction In 1989, over 190 countries, including the Netherlands, signed the United Nations Convention on the Rights of the Child (UNCRC) [1]. The UNCRC describes the human rights for every child, such as self-determination, freedom of thoughts and religion, and the right to have a say in matters that affect them. It is with this convention that the engagement of children in health care, research and intervention development became more important [2,3]. From that moment on, clinicians, researchers and policymakers more often tried to carry out their health care projects and decision-making together with pediatric patients rather than about or for pediatric patients [3]. Involving children in decision-making about daily clinical care, research and intervention development is referred to as ‘pediatric patient engagement’ [4,5]. The extent to which children influence the decision-making processes can vary from consultation (e.g., patients are asked for their opinion, but have limited influences on decision-making) to active partnership (e.g., patients cooperate as equal partners with other stakeholders and share responsibility) [6,7]. Notwithstanding the extent of involvement, pediatric patient engagement has important value for health care. Previous research shows that pediatric patient engagement increases children’s self-confidence and sense of control, which results in better treatment outcomes [8]. Moreover, pediatric patient engagement leads to higher inclusion rates in research and improves the translation from research to clinical practice [9]. Although the importance of pediatric patient engagement is acknowledged, pediatric patients are not always involved in the decision-making process in health care [8,10]. Clinicians, researchers, and policymakers are, for example, reserved in involving pediatric patients in health care as they doubt the capacity of children required for participating, and they lack experience in engaging children [8,11,12]. In addition, pediatric patient engagement is complicated by the tendency of adults to protect children from making difficult decisions [8,11]. Professionals therefore need more support to involve pediatric patients meaningfully and usefully [13]. In the last years, a few systematic reviews on pediatric patient engagement in clinical care have been conducted [2,3,14]. These systematic reviews are relatively outdated (over 10 years old), given the fact that pediatric participation is a developing practice. The focus of the conducted systematic reviews were only on engagement in the decision-making process in the consultation room and the challenges involved [2,14]. Also, in one paper, the included articles are only summarized and interpreted by 2
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