81 Development of a patient engagement tool; All Voices Count Table 2. Overview of the identified themes and associated quotes (Step 1), and the adjusted names for the engagement game (Step 2) Identified themes Name in the game Quotes Visiting the hospital My hospital ‘I like the shops in the hospital’ ‘The things they organize for patients are very nice so I won’t get bored’ Participating I can (not) do this ‘When I’m admitted to the hospital, it feels like I’m missing a few weeks of my life’ ‘I miss normal things, like hanging out with friends or going to school’ Disease & treatment My disease & treatment ‘I don’t like that I am getting tired due to the antibiotics that I have to take’ ‘They made some mistakes in my treatment, for example once I got too much morphine’ Social environment Me & others ‘It is nice when people sympathize, because then I know that there are people who care about me’ ‘My friends always tell me that they can’t imagine how it is to have juvenile arthritis’ Feelings I feel this ‘I was always really afraid that something was wrong when I got the results back’ ‘It feels very lonely when you think about your friends who are not sick’ Dealing with staff The people in my hospital ‘Sometimes doctors talk for hours and ask a lot of questions. I don’t want that’ ‘I like doctors and nurses to be honest, don’t tell me that it won’t hurt if it will hurt’ Acceptation I am okay ‘I just want to be normal, I want to participate in class and not feel tired or sick’ ‘I feel a bit of an outsider’ Autonomy I do (not do) it myself ‘Because I am young, they don’t take me seriously. That is annoying’ ‘I take care of myself’ Disclosure Talk about it ‘I’m not willing to tell my life story’ ‘I like to share my story’ Chronically ill peers Just like me ‘They understand me better than my normal friends’ ‘Kids who are sick too are more interested in my illness’ Note. All quotes were translated into English Step 2: Evaluation of the draft version of the game The opinion of 13 adolescents (mean age: 15.5 years, range: 13-18 years, 61.5% female, Table 1) was asked about the draft version (Figure 2) of the engagement game in three focus groups and five interviews. Overall, the adolescents were positive about the game as it gave them the opportunity to get involved and it helped them to express their views. They indicated that the use of themes and images made it easier for most adolescents to associate and think of other topics to express their opinion on. The game element was appreciated; it was fun, exciting and motivates competition. Furthermore, the design of the game was attractive and easy to play. Suggestions for improvement were about the explanation of the game and the images on the playing cards. Although adolescents mentioned a preference for images rather than clip-arts, the majority mentioned that the images on the cards were not clear and that the persons in the images were too old, preventing them to relate to the depicted situation. Therefore, we adapted the images and tried to match the age group of 12-18 years. A few adolescents suggested the 3
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