Table 2

Aspects of full participation and example quotes by children with a chronic disease

AspectIllustrative quotes*
Sense of belonging“In the end, we were not so much into playing games anymore; the guys still played soccer, but the girls just sat together. I liked that best, because then I could keep up best, just chatting. We walked outside with all the girls and I just walked… Then we went somewhere and sat and chatted, and it went very naturally.” —Girl with systemic sclerosis, 11 years old
“I feel the same as everyone, but I am not the same, no.” —Boy with CF, 10 years old
“In no time felt like I fit into the group.” —Girl postcancer treatment, 11 years old
The ability to affect social interactions“Most of the time I am ordering them to do this and that, because I cannot do all those heavy tasks… So everyone comes to me to ask, ‘What can I do today?’ And I say, ‘Well, this needs to be done or that needs to be done.’ It feels nice that I can arrange something from home… Then I do feel part of it.” —Boy with CF, 18 years old
“I cannot do it the same way they do, but I can do it in my own way.” —Girl with systemic sclerosis, 11 years old
“[I made that decision with] my best friend, because I went with her every day and I slept over there… We decided, okay, we cannot go in the afternoon, but we can go in the evening and cut loose.” —Girl postcancer treatment, 15 years old
Being able to keep up with others“You have to strive really hard to attend everything. Being there is an important part of participation. And of course, those girls are at school every day and they talk to everyone. So, they kind of have a head start on you. Yes, that may sound stupid, because they do all kind of things with other children, but it makes you think, ‘Oh, I wish they did that with me; they don’t do anything with me anymore.’” —Girl postcancer treatment, 15 years old
“I play a sport now at physiotherapy, so that is different. I used to play hockey, but I stopped because it hurt. Now I am not the only one who has something, so that is different.” —Girl with CF, 15 years old
“I think it is good for me to take the stairs [instead of the lift] and that is also more fun, because then I can walk together with my classmates.” —Girl with systemic sclerosis, 11 years old
  • *Some quotes were edited slightly to increase readability.

  • CF, cystic fibrosis.