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Table 3 Themes and representative quotations

From: “The medications are the decision-makers…” Making reproductive and medication use decisions among female patients with rheumatoid arthritis: a constructivist grounded theory

Decision-making process Decisional aspects Representative Quotations
Having children Considering personal desires and beliefs about having children ‘Once I finally came to the decision of not having kids then it was almost freeing in a way. I didn’t have to be like, “Is this something I want to do? Is this something I can do?” and then kind of sitting down with myself and realizing that “no, this isn’t what I want”.’ (Participant 7)
‘We were always on the fence about having kids, so we had kids older. Then we loved that idea and we wanted our child to have a sibling so that’s why we were trying for a second. But even before I got diagnosed, age was always on my mind. And then [after] the diagnosis [we] pretty much just said, “Yeah, no, let’s not push it”.’ (Participant 21)
Considering personal impacts of disease on having children ‘The medications are pretty much the decision maker. They rule this decision. Even if me as an individual decide, “Okay I want to get pregnant”, it’s waiting: “Well, how long does this medication, how long do you need to be off it so you can actually conceive?” And then, “How long can I be on another dose while in the gestation process, so it doesn’t affect the baby?” [My medication] rules all my decisions that I make before and throughout that whole process.’ (Participant 2)
‘I have a really great mom and I always worried that if I had a child that that child wouldn’t get the same experience because maybe I would have too severe of arthritis and I wouldn’t be able to play with them or things like that […] always in the back of my mind was, “It wouldn’t be fair to them because I have such a good mom, I want [my child] to have one too”.’ (Participant 10)
Considering avenues of support for growing a family ‘Another thing that factors in is the fact that [my partner] has a chronic disease and my mom, the grandmother [who has RA] would also have one […] Usually, let’s say me and [my partner] are really struggling, we could have grandparents come [help out] but [my mom’s] health is really not good right now and that makes me think.’ (Participant 1)
‘[Having children is] not just a conversation between you and your partner, it’s a conversation between you, your partner, and your relevant healthcare providers.’ (Participant 11)
Considering personal capacity to have children ‘I started talking to my husband about having kids very early on. [On] the first date I told him, “I want kids. If you don’t, there’s no point here.” He’s a couple years younger than me so the clock was ticking so we started talking about it very early on: “Do we want kids? How many do we want?” And I said, “We gotta start having them soon ’cause I’m a little bit older than you,” and I explained to him all the stuff with my RA and medications and how it went.’ (Participant 14)
‘I got the big “absolutely not, you should not, even if you think there’s a possibility that you could get pregnant do not be on this medication” or at least that’s the fearmongering I got from my [rheumatologist]. [My rheumatologist] made the assumption that I’m done with my family and so this is the medication you have to take […] and it just felt like [they] were forcing this [medication] on me, like this choice that I wasn’t making for myself, that [they were] assuming my family plans are done and so it’s not a problem, just take this medication and that’s it, right? […] I’m fortunate in that I already have children but if I hadn’t and, “Wait a minute, am I even done having kids? Why is that decision being taken from me?”.’ (Participant 19)
Planning pregnancy Considering experiences trying to conceive ‘[Methotrexate] was one of the [medications] I dropped right away because if it needs to be out of my system for six months or whatever the timeframe was, I wanted an extra few months because I don’t wanna take the risk […] That [medication] still made me a little bit nervous.’ (Participant 16)
‘I remember when I went off of methotrexate and my husband [asked], “So how long do we keep trying if it doesn’t happen quickly?” There’s a limit to how much pain I can handle, even just mentally, but month to month when it impacts not just your day-to-day life, your work, how to get to and from work and household tasks. So that was definitely a part of [trying to conceive] and just being in constant pain without having full access to the [treatment] tools you could usually access when you aren’t pregnant or trying to become pregnant.’ (Participant 11)
Considering experiences of medication use ‘When I found out I was pregnant, I went to see a walk-in doctor and that doctor panicked, “What? You’re on methotrexate? If it was up to me, I would give you the pill so you can have an abortion.” What?! So, that was probably one of the worst most frightening weekends I ever had in my life […] and this family doctor said stop all medications so with all the stress I didn’t take any medications on that weekend. And then on the Monday, I went back to the rheumatologist and [they] said, “Calm down, I’m not an expert but I don’t think you have to get rid of your child, not yet,” and [they] referred me to a specialist. But then for that specialist, they say you have to be 12 weeks pregnant to see [them] […] a five week wait, until I got to see the specialist was a complete nightmare. And my arthritis flared up horribly. […] I had no true management for those five weeks while I waited for this other doctor. Everybody was scared of saying anything to me.’ (Participant 12) 
‘[My rheumatologist] was very clear. “[…] Having chronic inflammation in your body, that’s not good for your growing baby either so you need to do something right now that we know is relatively safe for you and the baby and is gonna help you function,” and I’m so glad that I have taken the medications ’cause it’s made my quality of life so much better and it’s given me an opportunity to enjoy this pregnancy because between morning sickness and then joint pain, I hadn’t had a chance to do that at all.’ (Participant 8)
Considering emotional and physical experiences of pregnancy ‘[During both pregnancies] I worried the whole entire pregnancy. So, the first pregnancy, I wasn’t worried so much about my baby other than regular worries that you have. I was more, “Am I gonna get my arthritis under control? Is my medication gonna work again [after pregnancy]? If it doesn’t, then I’m gonna have to go on [another] medication, what if that doesn’t work? What if I can’t pick my baby up?” All of those worries. And then my second pregnancy, it was just constant worry about what the medication is doing to the baby and guilt, constant guilt, “Should I have done this? Was this selfish just because I wanted another baby?” So, it definitely impacted my mental health with stress and anxiety […] I still have daily guilt, daily worry, and daily stress.’ (Participant 14) 
‘I remember when we were trying to conceive in particular, all of my medical decisions were being made based on what was best for a person that didn’t even exist yet and so there was six months where I was switching medication and then there was the almost two years of trying and then there was the nine months of pregnancy and then there was the breastfeeding and I got really, really fed up with it ’cause I just didn’t feel like I was my own person anymore. I was just the host for the baby so that kind of played on my mental health a lot.’ (Participant 10)
Considering experiences interacting with healthcare providers ‘[With an RA diagnosis] it is automatically a risky pregnancy, so it’s immediately in the hospital. I hate hospitals, I hate residents who look at you as a case number and not like a person. I am someone who is hypersensitive to everything already therefore the fact of giving birth in the hospital, it stresses me out. In addition, the thought of giving birth it stresses me more, because of the facts of giving birth [as] someone with rheumatoid arthritis. I want to be like, “[…] can my baby just like materialize out of my body?”’ (Participant 6)
‘I remember being quite annoyed about it actually, that it was like I stopped existing because I was pregnant… [My rheumatologist] was basically like, “Well, this medication that you’re on is not working so stop it and then since you’re gonna try and get pregnant, let’s not bother with anything until after ’cause your next step is a biologic and you can’t do that and be pregnant. So, that’s the only kind of treatment that they offer is: you’re on this medication or you’re not. And if you’re not on a medication, then, “Why would we see you?” So they said, “You just revert to the care of your [general practitioner, GP], don’t call us, we’ll call you.” […] After that, when I was in pain, I was phoning my GP and she was like, “Oh, it’s your round ligaments,” and I’m like, “It’s not my frickin’ round ligaments, it’s my joints!” and she was like, “Sorry, [your rheumatologist] won’t see you while you’re pregnant.’ (Participant 15)
Parenting Considering experiences of disease management post-partum ‘[When] my two youngest were tiny, breastfeeding was also difficult because it involves your hands a lot and my hands and elbows are my most strongly affected and so even that was difficult in the early parenting days where I was having to hold a baby for hours a day […] I would do nursing side lying or just reclined so I tried to do as much of that as I could just to save my hands. I also used a lot of topicals, a lot of cold packs, NSAIDs, Voltaren [diclofenac] became my best friend. Obviously, you have to be a bit careful with the baby ’cause you don’t want him getting all numb but a lot of that and then just kind of sucking it up and coping with it.’ (Participant 18)
Considering physical and emotional experiences of becoming a caregiver ‘It makes me emotional. […] I felt like a bad mother. I couldn’t pick her up. My husband always carried her. He did the toilet training. I couldn’t even lift her to put her on the toilet. She still goes to daddy for toilet ’cause that’s what she’s used to. Yeah, it was tough. Again, I still have fatigue issues, so breakfast time is daddy. […] Kids understand when mom is sick, so I think it’s affected her. She’s always very concerned when I’m not well, if I sneeze or anything, she’s, “Mommy are you okay?” She does artwork for me, so it’s definitely affected our way of living our life.’ (Participant 21)
‘I honestly don’t know if I could handle being in a two-income household. Having my husband home is a huge help ’cause I don’t have to do a lot of cleaning. That is one thing that is a bit challenging ’cause of my wrists so the less repetitive strain that I have to put on my body to scrub shower stalls and stuff is a really big help. […]And having a bit of financial and childcare support from my family, it’s huge. It enables the lifestyle that we have ’cause if we had a two-way family household with daycare, it would be different. I would not be so functional.’ (Participant 20)
Using medications Considering attitudes and experiences using medications ‘I'm someone who doesn’t like to take even [ibuprofen] or [acetaminophen]. I know that there is a place and a time for that but I’m not someone that runs to my medicine cabinet all the time. So, it was kind of a curve to come to the acceptance that I did need it [medications to manage my RA].’ (Participant 9)
‘I struggled a long time to find [a medication that works]. I was on one medication and it was fantastic and then it stopped working after about eight years. And then there was about a year and a half of trying other things and trying to get myself settled again and that was really, really tough. I went from being able to walk and behave fairly undetected, most people didn’t even know I had RA, to everybody asking me what was wrong with me. It was huge. So, the idea of then stopping [my medication], that was terrifying. I didn’t know what I would be without it. […] I know some people can come off their medication and feel okay. I don’t think that I'm one of those people.’ (Participant 7)
Considering attitudes and experiences managing personal health ‘It does make me wish that there was more of a holistic approach but it’s not really readily available or supported here. […] To say, just blanket, “Everything that is not medication [is not effective]” – no. And that’s [my rheumatologist’s] approach. [They are] completely and entirely drug focused. […] There’s not really any, “Here are your resources or here are supports that you can use to help you.” None of that is offered. And I think that's a damn shame.’ (Participant 15)
‘I wanna be in good shape as much as possible to be able to take care of my kids and do things, so I constantly worry more now about, “If I take this, what could be the side effects for me in a couple years?” And, “If I do this, is this a smart thing or a good thing to do?” And it’s just made me a lot more anxious. In a way it’s good because I pay a lot more attention to that stuff now and I’ve learned a lot more about my body, but then I also found that, in terms of mental health, it’s just made me a lot more anxious in general.’ (Participant 13)
Considering medication options for pregnancy and breastfeeding ‘I'm only on sulfasalazine and hydroxychloroquine now but probably moving to a biologic very soon but obviously trying to be in the realm where they’re all pregnancy safe type medications first. And obviously if my symptoms increase or they’re not receptive to what I’m taking then I’ll cross that bridge when I get there but that’s the mindset and the approach that I’ve been taking now because why would I start on medication that I would have to just stop or reduce or do something for my symptoms to recur when there are options out there that I could take?’ (Participant 17)
‘It’s challenging to just dive on drugs or to change them up because there’s not that many options that you can use when you’re trying to get pregnant. My options are even more limited [because I’ve changed my therapy several times]. I don’t even know how many more [medications] there are for me to try. But it’s challenging to have to rely on something working to make your life livable.’ (Participant 4)
It’s just a fear of, “What could happen?” […] It's the unknown, in terms of, “Could this impact a successful pregnancy? Could this cause cognitive issues or some sort of issues in my child down the road by taking such a strong medication?” Those are the things that I fear. […] To me [targeted DMARDs] haven’t been out that long so what I think of [is a scenario of] a woman who’s pregnant now and her 20-year-old has some sort of medical issue down the road and it’s because [she] took a biologic.’ (Participant 5)