Table 3 Top three most bothersome aspects of living with achondroplasia
Concept | No. participants naming concept amongst top 3 most bothersome aspects of achondroplasia | Example quotes | ||||
|---|---|---|---|---|---|---|
0–2 (N = 7) | 3–7 (N = 7) | 8–11 (N = 12) | 12–17 (N = 6) | Total (N = 32)* | ||
Reaching | 1 | 2 | 5 | 3 | 11 | – 05-[12-17]-P: Reaching the top shelf. […] I use a step stool, but there have been places where there have been no step stools. […] Once in a while, there’ll be a situation where I just can’t reach things, at all |
Pain | 0 | 1 | 4 | 5 | 10 | – 32-[8-11]-P: Knee pain. Sometimes when we go on a field trip and we’re doing hiking, sometimes we have to leave early because my knees are killing me |
Short height | 0 | 3 | 2 | 3 | 8 | – 08-[3-7]-CG: It’s his height, […] ‘cause he’s shorter than everyone and it makes sometimes him feel like he’s the baby |
Disproportionality (Short limbs) | 3 | 2 | 2 | 0 | 7 | – 07-[3-7]-CG: I think a big thing would be that her arms would be longer, so that she could reach and do what she wants easier |
Health issues | 3 | 1 | 2 | 0 | 6 | – 20-[0-2]-CG: He was on antibiotics all the time for ear infections |
Unable to participate; Keeping up with peers | 2 | 1 | 1 | 1 | 5 | – 01-[12-17]-P: Not being able to do sports that I really enjoy, and not being able to do them with my friends |
Negative attention/comments | 0 | 0 | 4 | 1 | 5 | – 31-[8-11]-P: Um, staring and pointing – 39-[8-11]-P: When people laugh |
Physical activities | 0 | 0 | 4 | 1 | 5 | – 06-[8-11]-P: Not being able to run as fast, or walk longer distances |
Limited independence | 2 | 1 | 1 | 0 | 4 | – 30-[3-7]-CG: The being independent, as far as, like, reaching things and that type of thing |
Motor development | 3 | 0 | 0 | 0 | 3 | – 29-[0-2]-CG: Not being able to move the way he wants to, is definitely number one |
Frequent appointments/hospitalizations | 2 | 1 | 0 | 0 | 2 | – 29-[0-2]-CG: The medical stuff, the physical stuff, it’s just been his life from the beginning. […] He just wants to be okay. He wants to be normal, and he just gets kind of upset about it, pretty frequently, actually |
Limited mobility/range of motion | 0 | 2 | 0 | 0 | 2 | – 14-[3-7]-CG: A dexterity thing. Like, being able to hold things in his arms, being able to catch balls easier, that sort of thing would be huge for him |
Speech development | 1 | 0 | 0 | 0 | 1 | – 20-[0-2]-CG: The speech delay |
Limited clothing options | 0 | 0 | 0 | 1 | 1 | – 04-[12-17]-P: Clothes is really annoying and, like, having small feet, like, now, like, especially when I was younger, and, like, only, like, the Velcro shoes were in my size and stuff, and, like, now, like, if I want a shoe, they’re not in my size, it’s definitely annoying and clothes |