Table 2

Parental strategies regarding their child’s participation identified in this study

Parental strategyDescriptionExample case
Allowing the child to steer their own participationUsing this strategy, parents attempted to let their child take the lead with as little interference as possible, in order to promote the child’s self-sufficiency and autonomy. 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.’
Normalising the situationUsing this strategy, parents promoted the belief that their child participates just like his/her healthy peers. They also either avoided or tried to change the perspective of others who view their child as limited compared with his/her peers. She now thinks her situation is normal; maybe she’s always in pain, but she doesn’t know any better. She just does everything. She says herself that this is her “normal” and that she doesn’t know any better than this. It has been like this since she was 5, and she doesn’t really know what normal is.’
Relieving the child from burdensUsing this strategy, parents attempted to relieve their child from obligatory activities such as school, appointments, their therapeutic regimen or the child’s responsibility to disclose his/her limitations to others. So, we said it was OK to get a dog, but everyone will have to walk the dog every day, especially J, even in bad weather. But that’s not strictly true. I often do it in bad weather, because this time of year (fall), her symptoms are often worse.’
Facilitating the childUsing this strategy, parents adjusted their own life and their family life as much as possible. The resources for achieving this strategy can be personal (eg, time investment such as a parent who quits his/her job in order to be home for the child), social (eg, siblings taking over the child’s tasks) or financial (eg, buying additional equipment). J. is going to high school next year, and we wonder how he’s going to get on. Right now, his bag is packed for him, including snacks; his exercise is arranged, and his bike is ready for him outside the door. His brother does all that for him now, but next year he’ll have to do it himself. Other 11-year-old boys can be allowed to bike to the gym on their own, but not J; we have to take him there and pick him up.’
DisclosureUsing this strategy, parents directed the disclosure of their child’s disease and limitations to the outside world. In some cases, the parents deliberately chose not to disclose the child’s condition, or even temporarily withdrew the child from participating, in order to hide their child’s illness or limitations. Other parents chose to disclose the child’s disease and limitations on their child’s behalf so that the child did not have to do this him/herself and the environment could still be adjusted to accommodate the child’s capabilities.Ex. 1) ‘She went into a new class, and we said that no one was allowed to ask M. anything about her condition. If they wanted to know anything, they were to come to us, and we would explain what happened and that she is now better. M. didn’t want to talk about it then, but now she’s opened up a bit.’
Ex. 2) ‘Because J. had a group of close friends, it wasn’t necessary to communicate it to the entire class. When he went to play with a friend, I just said that J. had a problem with his immune system and that there were some minor hygiene rules to follow, especially when he eats (he has to take pills before he eats anything). We keep it vague, so people don’t start Googling and labelling him; he can just be J.’
Redirecting the childUsing this strategy, parents directly tried to influence the child and what he/she could do either by explicitly telling the child what he/she can and cannot do (eg, they cannot go on a school trip because it would make them too tired) or by attempting to persuade the child to do or not do certain activities (eg, to take their medication when away from home or to stop physical exercise when they experience pain). 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.’
Redirecting the outside worldUsing this strategy, parents tried to influence their child’s environment, for example, by asking the child’s teacher to give him/her a different seat in class so the child would be less cold, or persuading other parents to invite him/her to a party, even though their child may not be able to participate in all of the activities. When she started at a dance school, we spoke with them beforehand. But within two weeks she was sitting on the side for three-quarters of the hour. So we stopped taking her there. She’s now at another dance school; we spoke to the new dance teacher first, and she includes E. in everything. Her teacher even choreographs special dances for her, so she can take part in performances and demonstrations.’