256 Chapter 9 The ultimate goal of this thesis was to study and enhance pediatric patient-centered care (PCC). Therefore, this thesis focused on scientific approaches and development of tools to provide PCC. Specifically, three aspects of PCC were studied; pediatric patient engagement (part 1), Patient Reported Outcome Measures (part 2), and Patient Reported Experience Measures (part 3). This chapter provides an overview of the main findings and includes a reflection on the main findings, the clinical implications, methodological considerations, and directions for future research. Main findings Table 1 summarizes the main findings presented in this thesis. Part 1: Pediatric patient engagement To help clinicians with the engagement of pediatric patients in clinical care, policy, and research, the first part of this thesis provides information and tools to engage children meaningfully. Chapter 2 gave an overview of the available literature about pediatric patient engagement in the past decades. This review showed that there is a growing attention for pediatric patient engagement in recent decades. Pediatric patients, especially in the age range 9- 17 years, are increasingly being asked for their opinion in health care (projects). The individual interview is the most commonly used method to engage pediatric patients, followed by focus groups (for older children) and draw & write/tell techniques (for younger children). Although pediatric patient engagement is increasing, the scoping review also showed that children are still rarely engaged in research projects. This suggests that researchers need more tools and support to engage pediatric patients. Therefore, Chapter 3 described the development of a patient engagement tool, called All Voices Count. Working together with adolescents, we co-developed this tool in several steps. During the first step, ten important themes for adolescents with a chronic condition regarding their illness, treatment and hospital care were identified: visiting the hospital, participating, disease & treatment, social environment, feelings, dealing with staff, acceptation, autonomy, disclosure, and chronically ill peers. Based on these themes, the tool was developed. Subsequently, the tool was evaluated multiple times with adolescents and further developed based on the received feedback. Overall, adolescents were pleased with All Voices Count as it enables them to express their opinion regarding different topics in health care more easily.
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