31 Scoping review pediatric patient engagement Figure 3. Overview of the articles (% of total) that include pediatric patient engagement per country Setting of patient engagement Pediatric patients were asked for their opinion or experiences in different settings: in clinical care (81%), research (10%), and intervention development (9%). One study on adolescents’ beliefs about making treatment decisions and trial participation decisions following a cancer diagnosis was included in both the clinical care and research setting [21]. Clinical care: The majority of the included articles were about pediatric patient engagement in clinical care. The aims of these studies were diverse. For example, children’s perspectives on the disclosure of medical errors were asked [22], children were asked about their experiences with postoperative pain and pain management [23], and adolescents’ preferred level of involvement in the decision-making process in cancer care was investigated [24]. The ultimate goal of engaging pediatric patients in these kind of studies was improving daily clinical care. Research: In the field of research, pediatric patients were mainly involved to gain more understanding into the reasons why pediatric patients do or do not participate in research, what factors influence their decision, and what adolescents’ preferences were regarding the organization of research participation [25,21,26-28]. With this information, researchers aimed to improve recruitment strategies. In addition, a few studies evaluate the benefits and limitations of the use of a specific study design, for example a participatory research approach with chronically ill children as co2
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