Table 4

Illustrative quotes for the four scenarios mentioned in table 3

Way parents and child interrelate regarding the child’s participationExample case
Scenario 1: Parents take the leadThe mother of an eight year-old girl with mixed connective tissue disease described: ‘Yes, she didn’t need to make that decision. But that’s me; I make a lot of decisions on her behalf. I don’t know if this is a good thing or not, but both of us are very strict at home; we don’t believe much in that ‘yes, but’ culture. I am perfectly willing to explain why I made a certain decision, but we do what I decide we will do.” The girl herself described it as follows: “I sometimes want to do things, but then mommy says that it’s probably better not to, because it will make me too tired.’
Scenario 2: Both the parents and the child want to take the leadThe mother of a twelve-year-old girl with juvenile idiopathic arthritis (JIA) described: ‘She oversteps her boundaries. She is confrontational; she will become confrontational if she doesn’t want to do something or doesn’t want to admit something.”
The girl herself described: “Most of the time my mother asks if I took my medication… Sometimes I just say ‘yes’ even if I didn’t take it; it’s annoying.’
Scenario 3: Neither the parents nor their child want to take the leadOne mother of a 15-year-old boy with cystic fibrosis described her desire for her son to became more autonomous in terms of regulating his own therapeutic regimen and inviting friends over; however, when she saw that her son was not going to step up and take the lead and therefore jeopardized his well-being, she took back the lead: ‘I could tell him I wasn’t going to do it and back off. But then I know that it would all go wrong. I just think to myself, ‘Oh well, as long as he is at home and I am still able to do it for him.’
Scenario 4: The child takes the leadThe mother of a 10-year-old girl with JIA: ‘I’m not the one who should forbid it. For example, she tried dancing for six months, and it didn’t go well at all. I could have forbidden it, but thought it was better that she found out for herself. Now she really likes free running, even though she can’t keep up. But the kids there know that, and she does what she can. She’s getting exercise, and she enjoys being part of a group. I can see she is benefitting from it and that it’s going well. But do I think it’s sensible? No, I don’t.’
Her daughter: ‘We often play ‘show-jumping’, where you put down blocks, lay a hockey stick across them, and then jump over the stick. Even though it isn’t very easy, I still join in and play it a lot.’