Table 4.

Missing parenthood domains and sub-domains from HRQoL instruments

Sub-domain	Direct quote
Impact on relationships domain
Loss of traditional parenthood
Concern over transmission to offspring	I worry about them (kids) getting cancer because of me but I just pray. I pray a lot Oh yes of course I’m worried about my future kids getting cancer. My mind goes to do I really wanna have kids; do I wanna put them through this…
Concern family will resent limited physical functioning	I just have this guilt that I shouldn’t carry I know but I would fear that my kids and husband would get tired of me always having health issues Whenever I have a bad migraine I think, what are you going to do if you have a kid? They won’t get the attention they need and end up hating me
Concern over fertility status	I’m 27 and still don’t have a kid. It’s embarrassing to me somewhat. As soon as I got out of the hospital I had questions but they said you’re fine, I still wonder though I’m afraid to say I do want to have babies because I’m going to become obsessed with it, but because it’s not something I can control it’ll tear my marriage apart if I can’t