Table 3 Topics covered and illustrative text excerpts for descriptive themes

 Making decisions about planning and experiencing pregnancy

Making decisions about becoming pregnant

• Factors impacting pregnancy decisions

• Fear of IA impeding ability to raise a child

• Childbearing alternatives (e.g., adoption)

• Pregnancy prevention and termination

[Women] were careful in considering their capacity to manage pregnancies and motherhood. These considerations were important in their decision-making, and based on, as one participant commented: ‘...an honest appreciation of the reality of the situation’ which is unlike that of ‘other couples [who] get pregnant and then consider the consequences’.

[20]

One woman, who expressed fear of not being able to take care of a child and therefore had chosen not to have children, confronted another participant in the group.

‘You had the courage to have children … despite this (fatigue). I know that it is not an option for me … where would I get the energy for that from?’

[21]

Making decisions about using medications

• Factors impacting medication decisions

• Wanting more information and decisional support about taking medications

Medication safety was an important topic, and members expressed concerns over the use of biologics and prednisone during pregnancy, indicating that they would rather not take medications during the pregnancy if there were even a slight risk to the foetus.

[29]

‘But nobody’s told me what the side effects of steroids are during pregnancy, they just say it’s kind of the safest option really and that they’ll judge it when they get to it depending on how bad I am. So I’m walking into the unknown, I have no idea.’

[5]

Making decisions about breastfeeding

• Factors impacting breastfeeding decisions

• Wanting more information and decisional support about breastfeeding

‘By about 4 weeks my mum was saying please stop breastfeeding and she’d been very pro-breastfeeding, but she could obviously see I was struggling (with mobility and pain), but I marched on and then at 6 weeks I dropped the child.’

[20]

Needing to prepare for pregnancy and parenthood

• Factors influencing conception and pregnancy planning

• Parenting while managing post-partum flares

• Establishing support systems (e.g., family members, mothers with IA)

The process of acceptance necessitated planning, as spontaneity regarding conception is not an option for women with RA. For some, it meant facing realities such as financial burdens: ‘...it is really important ... to have significant savings in the bank prior to falling pregnant. I did, which helped immensely because I was unable to continue the biologic medication, I was unable to work and had to rely on my savings to pay for medicine, doctors, etc.’

[20]

[One participant], who had been pregnant once, described openness in her pregnancy timeline because of her Lupus diagnosis: ‘Yeah, so if I’m like 26, and they are like, yeah, you are in remission, and I’m in a good place with everything else, I figure that might be the time. So I would not want to wait necessarily in case I get sick again.’ Although [she] would prefer to wait until age 27 or 28 to become pregnant, she also recognized the need for flexibility in those plans because she could not predict the status of her lupus […] Because of this, she said, ‘Family planning for me would probably go around when I’m in remission.’

[27]

Prioritizing the needs of mother and child

• Trade-offs between pregnancy/breastfeeding desires and potential harms of IA management

• Self-advocacy

Another member described why, even after discussing the risks of pregnancy and the appropriate medications to take, women may move forward with their own pregnancy plan even against their rheumatologist’s recommendation, ‘I know [getting pregnant] is not the best for me…but I want to get pregnant.’

[26]

 Experiencing pregnancy and parenthood

Trying to conceive

• Challenges with fertility, disease activity, and conception

• Emotional impact of conception with IA

‘Two years, no child. Some of them [in-laws] are going to say, “You must take this one out, this is a barren [woman].”’

[28]

‘With the rheumatologist advising certain medication-free timeframes before conception and the obstetrician/gynaecologist recommending surest ways to conceive on the first try, I felt like a science experiment for a while.’

[20]

Experiencing disease activity during pregnancy & post-partum

• Perinatal flares and pregnancy complications

• Perinatal medication use

‘It was the last four weeks of my pregnancy that I finally had some relief from RA but within a week of giving birth again I was in severe pain and not being able to lift my baby’.

[20]

[One participant] said she felt very depressed after giving birth, and it was hard to know if it was a post-partum flare in her RA or post-natal depression:

‘Well they could not pinpoint it really, whether it was the flare in my arthritis or post-natal depression, all I did was cry, I felt like I was going mad.’

[15]

Experiencing the impacts of disease on ability to be a mother

• Impacts of IA on motherhood (e.g., caring for children, breastfeeding)

Two patients reported that the disease had limited their family size, in one case preventing her from having any children.

[17]

Making adjustments

• Impacts of IA on children

• Parenting strategies

‘You get to learn to do things differently as a parent with a chronic illness. My kids know I cannot pick them up too often, so they climb up onto me for cuddles. Some days we had PJ days and they loved it as much as I did’.

[20]

Needing support

• Childcare support

• Emotional and peer support

‘I would not have been able to make this decision if I did not have the support from family and my husband’.

[20]

 Navigating pregnancy and parenting with chronic disease

Worrying about unknown effects of disease on pregnancy and parenting

• Uncertainty of pregnancy progression, perinatal disease management, and ability to meet parental responsibilities

‘I’m just so nervous about taking anything it’s like my gut instinct telling me not to. If I do and something goes wrong then I’d never forgive myself you know. At the same time I do not want to end up in so much pain that I cannot care for my baby. It’s so scary.’

[29]

‘I’m hoping and praying that none of the [my] children will get this [RA] ... because I would hate for any of them [my kids] to get arthritis. Well, you do not want them to be ill anyway, but you know, it’s a condition that’s not very kind.’

[13]

Informants who were mothers were concerned about shortcomings in care and participation in their children’s life, and about the children’s health and chances of inheritance of rheumatic diseases.

[16]

Struggling to cope with personal limitations

• Coping with personal limitations (e.g., ability to meet reproductive goals)

For many women, their [autoimmune rheumatic diseases] led to them feeling restrained by their physical symptoms, and they felt that they were unable to do some of the things that ‘normal’ mothers do.

[5]

‘The sense [feeling] of not feeling entitled to something; it’s painful. It’s a bit emotional. If I cannot wash my clothes, if I cannot clean for myself or cannot carry heavy things, how is it going to be possible for me to maintain kids, you know?’

[30]

‘I find it hard to come to terms with that. My mantra has always been, ever since I could speak as it were, that I wanted to have children. But I never had the nerve to take the initiative … There are too many obstacles and limitations, I reckon, which stop me from ever having children. Those fears run deep. I would dearly love to have children, but I do not have the courage.’

[18]

Facing judgement from self and others

• Navigating guilt and stigma

• Encountering judgement from healthcare professionals and peers

The women perform self-stigmatization in the form of self-blame and guilt when they cannot accomplish what they want in the role of mother because of fatigue, pain, or physical limitations. One of the women who had just given birth was disappointed and sorry that she did not live up to the expectations she had of herself as a future mother.

[24]

Finding value in motherhood

• Source of purpose and motivation

‘My son and the baby that grows within me are my shining light. They are the little beings that get me out of bed in the morning when I am so stiff and sore and riddled with pain that I do not know if I can face the day’.

[20]

Creating a self-identity beyond their disease

• Impact of self-identity (e.g., as a parent, caregiver, employee) on reproductive decisions

The women prioritize and direct the bulk of their time and energy to their working life. This is interpreted as, first and foremost, their desire to identify with the role associated with working life, rather than the identity that is solely associated with motherhood or with [rheumatoid arthritis]. The women feel that the role of worker is attractive because it gives status, and because it allows them to be self-supporting.

[24]

The impact on women’s identity was often discussed, with women wanting to be a ‘normal’ parent and to be seen as a whole person not a disease.

[5]

 Seeking information and resources for pregnancy planning

Encountering poor understanding of disease

• Feeling uninformed about pregnancy and IA management

• Encountering poor understanding from family, community members, and public agencies

‘I’d say the first five years of having [rheumatoid arthritis] … I had no idea, information was scarce, I had done millions of Google searches and went to libraries and there was nothing. Nothing about pregnancy, breastfeeding and [rheumatoid arthritis]. And even my doctors were really… did not seem to know much about what medications were safe, and they’d have to go and ring other doctors, and it was really just like… I thought gee, am I the first person in the entire world to have RA and be pregnant?’

[4]

Seeking high quality, timely, consistent, and accessible information

• Patient-specific pregnancy information (e.g., disease heredity, fertility, pregnancy complications, perinatal disease management, birth choices, and breastfeeding)

• Information for early parenthood (e.g., practical strategies for managing pain/fatigue)

• Information addressing prevailing misconceptions about IA

‘Some practical information as to how to do certain daily tasks without the use of certain limbs. So, you know, if my hands are so swollen that I cannot dress myself, how do I pick up my baby using my forearms, how do I…how can I carry my baby to minimise the impact on my arms and shoulders and back and wrists etc. Clothing to put the baby in…that was a big thing for me, you know, most baby clothes have… stupid press-studs, yeah, which were just the bane of my life back then. So and I managed to find clothing that was much easier for me to get on and off the baby - so that was, you know, that was a big thing. And, you know, even just…every day household tasks, you know, tips as to how to, you know, reduce your fatigue and cut down on your household duties and to…minimise your energy output’

[4]

‘I think my problems differ from older people. I was just looking for people who work, for people with young children and how they manage their lives while having a rheumatic disease. I also wonder how I could combine work and home.’

[23]

Seeking support services

• Avenues for emotional support (e.g., counseling; peer support groups)

• Role of practical support services (e.g., social workers, hired help)

• Barriers to accessing support

Some commented on the lack of resources for mothers with arthritis and desired a person or place to go to when facing specific challenges. Participants referred to 3 types of support: practical (help with child care or cleaning), emotional (help dealing with feelings), and moral (someone to listen and share). Sources of support included family and friends, health professionals, and hired help.

[14]

Learning from peers with similar experiences

• Pragmatic information and resources

• Source of emotional support and motivation

• Role of online forums/support groups

Members stated that participating in the online community was a positive way for them to share concern, anxiety, or questions they had about arthritis and pregnancy.

[29]

Discussing with others how best to talk to your children about your rheumatic disease

[…] Hearing from others how they involve their partner in child care

[…] Hearing from fellow patients how they decided whether or not to have children

[23]

 Interacting with healthcare providers

Receiving care from several providers

• Value of multi-disciplinary healthcare

• Barriers to patient satisfaction (e.g., care coordination/continuity, provider knowledge)

Women’s experiences varied widely, but most felt that there was a lack of well-coordinated multi-disciplinary management between different secondary care departments, as well as primary care, and this could undermine women’s trust.

‘I’ve always been the go between, the departments do not really talk to each other and I’ve many a time been in a position when I, I’ve said to either my GP [general practitioner] or my consultant you have lied to us because you are both telling me different things.’

[5]

‘It’s confusing – the doctors from haematology told me that chloroquine is not safe for the pregnancy, I must stop it. At rheumatology the doctors said it’s OK for the baby. At haematology they told me that I must stop breastfeeding her because I must go back to the medication.’

[30]

Discussing pregnancy planning

• Value of timely, collaborative discussions

• Barriers to discussing reproductive goals (e.g., patient-provider relationship)

Most women, regardless of education level or socio-economic status, reported feeling intimidated by their rheumatologist and therefore hesitant to speak up about their true pregnancy desires.

[26]

Younger women described feeling that they needed to get the doctor’s permission if they wanted to embark on a pregnancy.

[19]

Seeking and receiving information

• Information on medication use and safety pre-conception and during pregnancy

• Role of trust in patient-provider relationship

Focus group participants also expressed trust in their rheumatologist, but regularly sought additional sources of information (primarily from online sources) in order to make informed treatment decisions.

[4]

Requiring compassionate and holistic care

• Approaches to compassionate patient communication

• Value of provider knowledge about IA and reproductive care

Good communication, clear advice, being open to questions, compassion, kindness, understanding, encouragement, and honesty from health professionals were viewed as being important aspects of care.

[5]

 Providing reproductive healthcare

Understanding professional responsibility

• Rheumatologists’ role in reproductive care

• Role of interdisciplinary collaboration

All rheumatologists expressed a sense of responsibility to provide some aspects of [family planning counseling and reproductive health care] to female patients of reproductive age. When asked how they defined [family planning counseling and reproductive health care], rheumatologists’ definitions unanimously centred on clarifying women’s pregnancy intentions and timing, educating patients about the associations between their diseases and pregnancy, and optimizing women’s health and anti-rheumatic drug regimens in anticipation of pregnancy.

[25]

‘There is a tendency to say, “well, somebody else will talk to [patients] about contraception, somebody else will talk to them about family planning”.’

[25]

Desiring more guidance

• Challenges of clinical decision-making and patient counseling for pregnancy

• Need for increased knowledge about IA, pregnancy, and motherhood among healthcare providers

Rheumatologists consistently expressed that they wanted access to consensus guidelines that gave them clear recommendations for managing diseases and anti-rheumatic drugs for women before, during, after pregnancy, and through lactation.

[25]

We suspect that these knowledge gaps and the rheumatologists’ lack of confidence in drug safety make it difficult for them to discuss medication use in pregnancy with their patients in a way that would encourage a woman to take the medication.

[26]

Fearing negative outcomes

• Impact of rheumatologists’ fear of managing high-risk pregnancies on patient-provider relationship

Most rheumatologists could recall at least one pregnancy conceived on a teratogenic medication or during a period of high disease activity. Some were afraid of managing this complicated situation and having little control of the outcome: “That’s part of the fear, I think ... They come in crashing, and then it’s like you are responsible, and you are not sure that you are going to be able to fix that.’

[26]

Having time restrictions

• Impact of time restrictions on reproductive care provision

Most rheumatologists expressed that competing priorities during clinic visits limited their ability to provide [family planning counseling and reproductive health care]. As one rheumatologist stated, ‘[There is] pressure to see patients in the shortest amount of time… I focus on things that only I as a rheumatologist could focus on— the disease process… there is a tendency to say, “Well, somebody else will talk to [patients] about contraception, somebody else will talk to them about family planning.’”

[25]

 Interacting with patients

Discussing pregnancy planning

• Engaging patients in reproductive health discussions

• Importance of understanding patients’ pregnancy intentions

• Factors facilitating pregnancy planning discussions

As one rheumatologist stated, ‘When you asked me about how many pregnant patients that I have had, despite the fact that I feel pretty comfortable discussing contraception, my heart did skip a beat. And I thought, you know, it’s not one of the most pleasant things to deal with in my practice. And it’s because of the fear. There is a fear that, what if something goes wrong?... I think that we are all always concerned that anything could happen, something could go wrong…’

[25]

Another rheumatologist noted the importance of bringing up the topic of pregnancy to aide in pregnancy planning, saying, ‘If you do not bring it up, they’ll just get pregnant.’

[26]

Providing counseling and managing medication use

• Approaches to reproductive care and perinatal medication use counseling

• Challenges managing IA pregnancies and providing medication information

Some rheumatologists use a different approach to discuss medication use in pregnancy that appealed to the patient’s desire for a healthy baby. These rheumatologists discussed medication use in pregnancy as a benefit to the baby, not primarily the mother:

‘I think they care more about the baby’s health than their own, so if I show them that there’s data that the baby actually has better outcomes in pregnancy if they are on the [medication], then they are more willing to do it. But if you say, “You’re gonna do better,” then they are not as convinced. So you have to convince them that it’s better for the baby.’

[26]

Building the patient-provider relationships

• Challenges building patient-provider relationships

• Role of patient trust in adherence to medical advice

Another rheumatologist described how feelings of fear and anxiety fractured the relationship with a newly pregnant patient, ‘I think I wasn’t able to build up a very good physician-patient relationship, because I think that I got so scared that I kind of blurted out all the data for every single one of the drugs that we were talking about. I think that kind of scared her [patient]. She did not follow up very well… the pregnancy went well, but she never really did the follow-up as well as she should, and I felt it was because she wasn’t trusting my judgment.’

[25]

One rheumatologist described the patient dilemma when receiving care for their disease during pregnancy as, ‘does this person want to hurt me and my baby, or do they want to help me and the baby?’

[26]

 Coordinating patient care with other providers

Collaborating on patient care planning

• Value of multi-disciplinary collaboration

• Barriers to patient care coordination

As one rheumatologist described: ‘Rheumatology and OB-GYN [obstetrics-gynaecology], it should be a collaboration. I do not think it’s reasonable to expect family practitioners [to manage reproductive care] when they manage so many diseases and so many medications.’

[25]

‘It’s actually getting everybody that might need to be involved to see it in a more holistic way.’

[5]

Providing support services

• Role of tailored support services for IA (e.g., pre-conception counseling, social/psychological supports)

Health professionals also felt that it was important to consider the specific support needs of women with [autoimmune rheumatic diseases].

‘I’m just thinking about the, there’s very specific anxiety and concerns that come for these women in the context of their parenting role having a chronic sort of autoimmune disorder.’

[5]