Table 3.

Participant quotations to support themes

Quote Number	Quotation
1	“They’re not going to need to spend as much time in hospitals or sort of in casts and things like that… It would have big implications for families being able to access more schooling and more social time.” Luke, health professional from an OI specialist team
2	“…if there was a treatment that reduced a risk of fractures and then, then we would certainly be open to looking at it and considering it. Because I think what’s, what’s really hard about OI is, is that constant fear of fracturing” Carmel, parent of a child with OI
3	“I think it would have a massive positive effect on bonding, development, everything else if you just knew that the chances of them fracturing was going to be less, I think you’d feel a lot more robust about it.” Sally, health professional from an OI specialist team
4	“With the more severe types, obviously as soon as they start to move around in the womb they fracture so anything that could reduce this risk is good.” Mary, adult with OI, who has a child with OI
5	“You feel entirely powerless with a genetic issue. So it would be amazing to be able to have and feel like you could influence or to improve, improve the situation” Annie, parent of a child with OI
6	“I was quite overjoyed. I think when I first started reading about [SCT] because I was thinking instantly about my family, my future family and how that would be hugely beneficial.” Nathan, adult with OI
7	“…if I did have a child that has multiple breaks and I have got the condition myself it would be very difficult for me on a practical side moving a child that’s got lots of breaks.” Mia, adult with OI
8	“I think it’s really exciting that, you know, something new for the OI community and yeah could potentially be really life changing for people” Lily, adult with OI
9	“I think you’d probably ask whether you could introduce any other diseases or other conditions through doing that” Sam, parent of a child with OI
10	“I would say after pregnancy just purely because of the risk of miscarriage” Jill, adult with OI
11	“Obviously there’s a risk that there’ll be no difference or things might not go, you know, they may even get worse.” Ben, health professional from an OI specialist team
12	“How many children have had it already? How much has this been tested? Because I think you’d have to be very brave to, you know, be one of the first” Olivia, adult with OI who has a child with OI
13	“Stem cells are in the paper all the time, ‘magic new therapy’. And again I do worry a little bit about some families which will go ahead and say ‘yes, yes’ and think that possibly, the outcome may be different than what it will actually be.” Julie, health professional from an OI specialist team
14	“I think going through the process of treatment and then not having the outcome you wanted would be really, really difficult.” Laura, adult with OI
15	“We want to do everything we can and to help to make sure that they’re making an informed decision that isn’t just a, sort of, reaction to the situation that they’re in, is really challenging because you can say, yeah, that the acute grief will make them quite vulnerable to maybe making a decision that they wouldn’t make in a different setting” Emma, genetic counsellor
16	“If I put myself in the shoes of when we were pregnant… if I didn’t have an OI child I think I might be reluctant to do something, I’d be honest, but if I had an OI child my God I’d be wanting to try everything… And I think it will be quite hard for someone who doesn’t fully understand what OI means.” Alex, parent of a child with OI
17	“I would have had the treatment bar the risks, bar wherever the stem cells are from or I would have given it a go and I would have had to because I couldn’t in six months’ time be sitting by that baby in the hospital with two cracked femurs because how could I then say to myself I did everything I could for you because I didn’t take that risk.” Ameenah, adult with OI who has a child with OI