Skip to main content

Table 3 Quotations to support themes

From: Quality of life in children and adolescents with Osteogenesis Imperfecta: a qualitative interview based study

Theme Quotation
Being safe “Erm, there is an LSA that takes me into lessons, erm so that sort of if people were running and I sort of got knocked or something, there would be someone there.” Child (C7).
“Yeah and what I would often see is she would do they same, but she would be right on the periphery.” Parent 9 (P9).
“He wouldn’t do anything that would put him at risk, you know, he is not one for climbing trees, or sitting on someone’s shoulders or anything like that, so he is quite sensible (laughs).” P8.
“They are very protected, and they are very cautious about who they allow near them, and so their social experiences are quite limited in those early days and the handling and the bonding is reduced.” Health Professional 1 (HP1).
Reduced function “It’s, sometimes it can restrict me, but…I don’t know, it’s, I’m not the same if that makes sense....Yeah, because you are in a wheelchair like, sometimes it’s like harder to do things that other people could do with ease.” (P9).
“He doesn’t do any after school activities, because by 3 o clock he’s wacked, he is whacked. He comes in erm, and he can like lay on the sofa for half an hour, an hour and just not do anything. (P3).
“A lot of them don’t want to be reliant on someone to help them and they want to be able to manage by themselves but yet they have to accept, you know, help and just practical tasks like toileting and bathing and you know, getting in and out of bed of a morning, if you have a fracture, becomes that bit more difficult and time consuming.” (HP3).
Pain “When I have a fracture, it is obviously very painful, but what upsets us the most is the fact of the consequences, because I mean I have had that many I believe that I am used to the pain and in comparison the screaming and the crying as I grew up, now I don’t really cry, I just you know, emphasise that I am in pain, but the worse thing is the consequences. (C10).
“It’s just really hard sometimes and for me when I see her in pain I feel quite guilty about that, because I know that it’s obviously come from me. (P2).
“Earlier pain management and almost the parent is the only person really who is there early enough, because you never get the same doctor twice and you never get the same treatment twice, and I think there needs to be some sort of care plan in place where the parents know that they are allowed to give..” (HP4).
Fear “More scared of breaking a bone, I was always, it would hold me back a lot from doing more activities.” (C1).
“I’d love to take the kids there, but I couldn’t, I’d, I’d, I’d just be too scared, I’d be just, there’d be too many people who were going in their own directions and I would be too frightened to do that.” (P7).
“When they first go to school, schools are terrified of them whether they are mildly affected or severely affect, it doesn’t really matter, they are all terrified. And the child will be excited about going to school, and everybody is missing that.” (HP1).
Independence “I’ve always been independent, because I’d prefer to be independent. They have said I can have a scribe for my GSCEs, but I don’t want one, I’d rather write it myself.” (C2)
“Because they are very independent now they have been on pamidronate, well, no, Erin especially, she doesn’t rely on wheelchairs very much at all now, so she’s her own independent 12 year old.” (P7)
“When it comes to independence at home…and there is this sort of letting go process, and they learn to drive, and have their independence that way and it’s a very exciting time for them, but it is very nerve racking for families to let them go.” (HP1)
Isolation/being different “It makes me feels a bit left out because I can’t do a lot of things that I want to do.” (C8).
“The birthday party invite would come, it’s a skating party, it’s a roller blade-ing party. It’s a horse riding party, no we can’t go.” (P9).
“They are not going to be able to engage in the same range of activities. They may be limited sometimes in terms of what they do, not simply in terms of their physical disability, but by other people’s perceptions of what that disability means.” (HP5)