Table 3 Illustrative quotes for conceptual model of parents' impacts
Theme | Concept | Quotes |
|---|---|---|
Emotional impact | Difficulty anticipating future | “[Child name]’s young, there’s a lot of positive things happening in the world, we focus on that. We’ll deal with what comes when it comes, I don’t want to think about it, because I hope it won’t. […] I think [my partner] struggles with more of the MPS side, what’s going to happen” (Parent of patient 101) |
Frustration/bother | “There wasn't anything I could do, because the screaming was really [bad] … And our neighbors could hear the screaming. […] There was a bar with a terrace in front opposite our house. […] those people knew exactly what was going on. […] That is very frustrating” (Parent of patient 201) | |
“Sometimes when it's too much, I say: ‘Yes, you've got it…’ because it's too much even for me. Because he cries, he screams, he hits others, he hits himself, breaks things. […] There are moments when I give up” (Parent of patient 303) | ||
Overwhelmed/stressed | “So, what bothers me is that every minute of my day is filled up. I also like to sit down and have a coffee. And I don't have time for this. Because I'm always racing from appointment to appointment and errand to errand. Once a week I have physiotherapy with [child’s name], then I have speech therapy with [child’s name]. Then I go with [sibling] to gymnastics, [sibling] can't be short changed either. She [the child’s sibling] is important too after all. And all of this always right after work” (Parent of patient 301) | |
Worry/fear | “I also talk a lot with other MPS parents. […] we regularly go to MPS meetings and right before that I worry about it a lot. And it's really very important to exchange ideas with the parents and gather experiences. So, that's the time when I worry about it a lot. But during my daily routine I don't have any time at all to worry about what might happen in 2 years” (Parent of patient 301) | |
“What scares me the most is that he will be in a wheelchair because the majority of them [children with MPS IIIA] will find themselves in a wheelchair. I tell myself, today, he has lost some of his language skills. Well, we communicate differently, it’s not a problem. It’s more, […] the fact that he would be in a wheelchair, that, that would destroy me because I couldn’t handle it” (Parent of patient 402) | ||
Support | Caregiving support | “You don't let just anyone watch him because you don't want to expect that much of just anyone. […] So, there's someone in my circle of friends that you can count on. That is, if there are things they can help with, they do it. In terms of friends, we can't complain. Then there are some others who say: ‘We can't handle the situation’” (Parent of patient 302) |
“My mother and father are also there. And his [my partner’s] parents are also there, but it seems as if they don’t really get the situation completely. They know that [child’s name] is ill and ultimately, we are the ones who spend the most time with him. It’s simply too tough to spend a whole day with [child’s name]. Our parents are also at the age that this isn’t easy for them. They are definitely there to provide emotional support. I provide the care for [child’s name] and am also not happy to delegate it” (Parent of patient 202) | ||
Social and family life | Daily leisure | “Some things are a bit more tricky to take him to because he might get upset and start crying, he doesn’t want to sit down and sit still, if we go to a restaurant for dinner, go to a pub or something like that, he doesn’t want to sit at the table and sit still, he’ll keep getting down, running around and that sort of thing, so we’re a bit more conscious now, but we still try and do most things that we did before” (Parent of patient 102) |
Work impacts | Work | “It’s [child having MPS IIIA] affected her [my partner’s] work, she has to have time off work when he’s not well and hospital appointments and […] if nursery phone up and say, ‘Look, he’s not well,’ or he’s got a rash or whatever […], we’re a bit—[parent mimics discussion between him and his spouse] ‘Like I can go and pick him up, or can you pick him [up]?’—‘I can’t today I’m in a meeting, I can’t get out of it’” (Parent of patient 103) |
Daily life & sleep | Sleep | “We had decided it [to put the child in an institution] then as she awoke 10 times per night. I must get out of bed 10 times per day. She awoke our son [her brother], she awoke our entire house. At any given moment, you sit here and you just cannot anymore” (Parent of patient 205) |
“Especially the initial period was very much a period of… Not even the sleeping as such, but… It just eats away at you. You are not yourself. I am still noticing that I'm more irritable. I go to bed and sleep well. I've slept even since getting the diagnosis. Even when I kind of felt: how can this be? I still didn't mull things over in bed. I went to bed, fell asleep but would then wake up again. That was not fun. But well… It is what it is” (Parent of patient 201) |