Table 4 Reproductive health topics that were prominent within focus group discussion

Ability to bear children (e.g. effects of medication and disease on fertility; physical ability to have sex and/or safely carry and deliver)

• Post-high school: My grandma tells me [my blood] has the Rh-negative factor, and that can cause my blood or something to attack the child [fetus]. And it runs in my family and along with that and the immune disorder, I just, I’m afraid [a successful pregnancy] is not going to be able to happen

• High school: They do discuss some of the long-term effects with me, but not particularly to like reproductive health … [But] I still think about the future … Sometimes I lay in bed and I’m like, I want to have this many kids, I want to name them this, you know? They don’t really talk about that.

• High school: My hips and knees get, like, really bad, so just thinking about having sex, it would hurt for me, because my legs don’t move in that position … Simply the act of having sex would be really painful.

Interaction between disease, medications, and maternal outcomes pre- and post-partum (e.g. ability to continue medications, risk of flares)

• Post-high school: How would pregnancy affect the disorder itself? Like if it would worsen it or not … I know a lot of people who get like gestational diabetes. Would something like that make my immune condition worse kind of thing? It’s not really a thing of getting pregnant, it’s while you’re pregnant- it’s not a short-term thing … If being on this medicine typically makes you go into labor? Just stuff like that that you don’t necessarily think about, and you’re put on it.

• Parent: [After my daughter temporarily stopped her medications], I saw just how symptomatic she became and how she was unable to manage pain... She and I had a conversation at that time about, “Is this what’s going to happen if I ever want to have kids? Am I going to have to endure this kind of progression of my disease and this kind of pain if I wanted to clean my body out to be able to safely have kids?”

• Conference group: I have a hip replacement and my surgeon is kinda talking about getting pregnant with that, and was talking about with giving birth it could become dislocated, it could crack, it could do all these things while you’re birth on top of that that could like ruin my actual hip. And I don’t know what outweighs the other.

• Conference group: I have dermatomyositis and I’m currently in remission. But if, like, if I were to have a kid in like 10 years or whatever, would I trigger a flare?

Interaction between disease, medications, and fetal outcomes (e.g. heredity of disease, length to wash out medications, birth defects)

• High school: When you think about how even just getting something like psoriasis can give you like all kinds of other stuff because you’re more susceptible, it’s kind of like scary to think about, like passing that on. Because it is hard to deal with all of the issues and like getting to so many appointments and stuff. It’s kind of hard to think about, putting that on somebody else too.

• Conference group: What’s the chance for our kid getting this because, I mean, we make the best of it but it sucks. I don’t want my kid to have this life … I’m at that point, like, I don’t wanna have kids if they’re gonna have this because I feel like this is terrible. We do what we can with it but like, it sucks. So like I just wanna know what the chances are I guess.

Obtaining safe, effective contraception

• High school: [Compared to my friends], it’s kind of a big deal for me because I can’t go to a pharmacy and like pick out birth control … but I kind of have to go further and like talk to my doctors, talk to my parents, and then I don’t know, figure it out more, see what’s, what is more safer for me.

• Parent: For my daughter, the doctor prescribing those birth control pills is not her rheumatologist, you know, someone who certainly knows her history, but who isn’t a specialist in that area, and so is there the level of trust that: Does the GP have the knowledge base to know that these are a good idea or not a good idea [given her rheumatology medications]? and I should point her in some other direction?

Effects of disease, medications on routine reproductive healthcare (e.g. managing menstrual cycle, obtaining HPV vaccine)

• High school: We know what tampons and pads are and stuff like that, but like with my limited movement and stuff, sometimes it’s hard to like take care of myself in a way that’s like good for my body and stuff … Schools aren’t necessarily the best at like telling everybody how to properly take care of yourself.

• Conference group: I could list my medicines off, but can that mess with your menstrual cycle?

• Conference group: [After discussion on HPV], being on immunosuppressants, are we at a higher risk for things like cervical cancer?

Ability to take care of a child (e.g. Need a supportive partner to share the load)

*Not discussed at conference-focus group

• Post-high school: The symptoms that I get are so bad that I feel like if I were to tell my partner or something that they wouldn’t understand and they will just automatically think that there is something wrong with me, like sexually wrong with me, and there isn’t but it’s hard to talk about when you get symptoms like that.

• Parent: All the big picture sort of decisions that go along with having a daughter who very much wants to be a mother. I mean, [my daughter] has been that girl who babysat everybody’s babies, and I know that’s something that she really will want in her life … What is that going to mean for her disease? And for her whole family structure? And yeah, will she have a partner who gets it?