Lorynn Teela

32 Chapter 2 researchers [29], or asked pediatric patients with chronic conditions about their research priorities [30,31]. Intervention development: Pediatric patients were involved in the development and evaluation of various tools, such as a toolkit for advanced care planning [32], a therapeutic platform that provides health information to pediatric patients to prepare them for hospital procedures [33], a smartphone app developed to enhance medical adherence [34], and educational videos to motivate adolescents to become more actively involved during the outpatient visit [35]. Used methods for pediatric patient engagement In the included articles different methods were used for pediatric patient engagement, as shown in Fig 4. The most commonly used method to engage pediatric patients in clinical care, research and intervention development was an individual interview (227 studies), followed by focus groups (40 studies), and draw & write/tell techniques (30 studies). Other used methods were an openended questionnaire (11 studies), photo and video techniques (9 studies), sentence completion (8 studies), and keeping a diary (4 studies). Multiple methods were sometimes used in one study. Below is an overview of the different techniques used in the studies and examples of studies that used these methods to include pediatric patients in their projects. Individual Interview In individual interviews, the interviewer questions the pediatric patient about the experienced facts and perception of the topic of the research question [36]. In the included studies, pediatric patients were for example interviewed about their expectations regarding the quality of the nursing care [37] or about their experiences and wishes with regard to their first conversation about epilepsy with their clinician [38]. The interviews were conducted in different ways. Almost all studies used a semi-structured interview [38-40], but a few studies conducted an unstructured interview [41]. Furthermore, the majority of interviews were held face-to-face in the clinical setting [37-39] or at the patients’ home [40], and a few interviews were conducted by telephone [39]. Focus group A focus group is a group interview with several participants (the number of participants varies per study from 2 to 8 participants) [25,36,42,43]. Focus groups were held about a wide variety of research questions, for example ‘What do

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