Table 4

Quotes illustrating the barriers to full participation in children with a chronic disease

BarriersIllustrative quotes*
Physical barriers“I cannot run so far, because I get short of breath.” —Boy with CF, 15 years old
“We switched to injections for my disease, which I have to get once a week. This is usually on a Friday, but it has an impact on the next few days.” —Boy with CVID, 14 years old
“You always live in a blur of fatigue.” —Girl with JIA, 15 years old
“For example, last weekend I went to a birthday party, but I forgot my medication, so I could not eat any crisps.” —Girl with CF, 12 years old
“I was not allowed to jump, because of my bone condition, but then I was invited to a party where we went to a trampoline park. That was a bummer, and I thought, ‘Then please do not invite me, or plan something else.’” —Girl postcancer treatment, 15 years old
“After I received radiotherapy for my bladder and bowels, I noticed that I need to go to the bathroom a lot more often now.” —Boy postcancer treatment, 18 years old
Mental barriers such as feeling ‘down’ or feeling unable to fit in“In the beginning, I was kind of depressed when I first heard that I had a disease that would never go away. But then I went to see a psychologist and she helped me. And I thought, ‘I just want to be the same as [everyone else]; this is not fun, I can barely do a thing.’ I always want to be the same as everyone else, and sometimes I still try to adapt, but then I have to remind myself, ‘No, you need to be yourself.’” —Girl with systemic sclerosis, 11 years old
“My mom makes me go to school when I am rested, even though I’m still cranky and sad. Yes, I really do not want to go, but in the end it is better and I know it.” —Girl with CF, 16 years old
“I have a stoma… It can make noise and that is difficult, especially in a quiet room. So now I can take my exams alone with just a proctor present; if I had to take the exam in a quiet classroom, 60% of my attention would be focused on one thought: ‘Oh god, what if it makes noise?’” —Boy postcancer treatment, 18 years old
Unpredictability of the disease’s manifestations“You can never plan anything, because there is always something that can disrupt your plans. You may say, ‘I will finish my education in three years, and then I will do this, and then I will find my own place to live, etc.…’ But now I have to say, ‘I know I am doing this study, but it might take one year or three years or maybe two years longer.’ You just do not know how it will go with my health, and that makes all the difference.” —Boy with CF, 18 years old
“You just know, it can always happen that I can wake up in the morning and my disease will suddenly flare up. It can always happen.” —Boy with JIA, 14 years old
“I see it as a flow, and I’ll see what happens. I do not plan very much anymore. You cannot plan anyway. So I just try to go with the flow.” —Boy postcancer treatment, 18 years old
Not being invited to participate or not being actively involved“You cannot do what other people can. And then you feel a bit… I don’t know, not really excluded, but a bit of an outsider.” —Girl with JIA, 15 years old
“Yes, it’s a social setback, with friends and everything, that they went to meet with someone else, and I thought, ‘Well, I don’t even know who that is.’” —Girl postcancer treatment, 15 years old
“When nothing happens, I don’t mind, but most of the time when the weather is nice they go to an outside terrace, and then I have to choose not to go, because I can’t.” —Boy with CF, 18 years old
Not being able to keep up with respect to performance“Well, in the beginning it was very easy [to play a computer game], but now people have become so much better at it that it… Yes, if you see certain things that people do in the game, you think, ‘How do they do that?’ And a lot of my friends are pretty good too, but I played less. And what I notice is that I do not play with random strangers on the internet anymore, because I’m afraid that they will get angry because I am not good enough.” —Boy postcancer treatment, 18 years old
“I would not feel comfortable going back to playing field hockey, because I cannot keep up with the others. My physiotherapist says I can do everything, but I know I cannot.” —Girl with CF, 16 years old
“It’s really a bummer when I have to tell friends, ‘I cannot do that, sorry.’” —Girl with JIA, 15 years old
  • *Some quotes were edited slightly to increase readability.

  • CF, cystic fibrosis; CVID, common variable immunodeficiency; JIA, juvenile idiopathic arthritis.