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Table 3 Summary of key themes from survey open text questions, interviews with women with ARDs, and interviews with health professionals

From: Identifying the unmet information and support needs of women with autoimmune rheumatic diseases during pregnancy planning, pregnancy and early parenting: mixed-methods study

Main themes Sub-themes Exemplary quotes Survey responses (n = 118) Interviews with women (n = 22) Interviews with health professionals (n = 7)
Information needs Timing of information & planning “It has to be planned because at the moment I can’t just have a child you know, and that doesn’t help because like most people’s family they aren’t planned you know, because I need to find someone who is willing for that as well”
(P2, vasculitis, no children)
Timescales involved with planning a pregnancy were challenging for women: i.e. changing medication a long time in advance of trying to conceive, needing to wait until condition is stable enough to conceive. Risk of unplanned pregnancies & what to do if this happens was a concern. The importance of receiving a timely diagnosis was highlighted. Women wanted timely, high quality and accessible information. Women recognised that starting a family is a complex process requiring planning. They felt that information about planning a family should be presented and discussed from the point of diagnosis. Some women expressed a need for information about the alternatives to pregnancy, e.g. adoption. There is an unmet need for quality, timely, written information for women. Pregnancy needs to be planned carefully.
  Disease activity & safe disease management “I’ve got my own kind’ve own concerns about you know being at a point where I’m well enough to become pregnant, being well during the pregnancy, can I stay well enough for 9 months that I don’t need extra medication that would impact on the pregnancy?”
(P10, vasculitis, no children)
Women wanted high quality condition specific evidence and advice on pregnancy with ARDs, including information on: the impact of reducing or changing medication while staring a family on disease activity; flare-ups, whether their condition was hereditary, and; what the implications of changes in serum antibody activity were for conception and pregnancy outcomes. Several women had concerns about unpredictability of ARD following medication change and keeping ‘well’ long enough to conceive. The safety of medications during pregnancy and breastfeeding were often discussed by women, as they felt they had insufficient information about this. Secondary care physicians felt that women need to be in good physical state with well-managed ARD when trying to conceive.
  Miscarriage “You never prepare yourself for having a miscarriage, but we were working on the basis that if I had a successful pregnancy it’s a bonus because the odds were against us as the doctors had said”
(P16, non-specific inflammatory arthritis, two children)
Several women expressed concerns about risks, lack of support following miscarriage, not knowing the cause of miscarriages (i.e. ARD related or other factors). Women talked about concerns about miscarriage risk, the emotional impact of miscarriage, and not knowing the cause of miscarriage. Secondary care physicians identified that there is a risk of miscarriage associated with some medicines used to manage ARDs, and that women are likely to need more information and support with this.
  Birth choices “I feel like I have less options”
(P5, Systemic Lupus Erythematous, no children)
Challenges women faced included coping with premature births, and lack of involvement in decisions about method of delivery. Women often experienced a lack of information, and expressed a need for collaborative conversations when discussing options for birth. Need for collaborative conversations during discussions about birth options was highlighted by secondary care physicians and midwives.
  Infant feeding “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”
(P9, non-specific inflammatory arthritis, two children)
Lack of information & evidence about efficacy and safety of medication to manage disease and pain during breastfeeding was identified as a challenge by several women. Desire to breastfeed baby whilst also being able to manage ARD symptoms, such as impact of disease flare and pain, was often challenging for women. Women felt that there was a need for more awareness about the impact of chronic conditions on breastfeeding amongst midwives/health visitors. Midwives identified a need to utilise midwifery expertise in supporting breastfeeding through advice on infant feeding as well as positions for holding the baby.
Multi-disciplinary management Unmet need “This time around I think I didn’t get monitored closely enough during the pregnancy really. I think it must be resources and there’s never any communication between rheumatology and the obstetricians”
(P6, psoriatic arthritis, one child)
Despite requiring input from a range of health and social care services, examples of formal multi-disciplinary team input were rare. Poor communication was important to women, who reported receiving inconsistent advice, not being listened to, and not being believed as challenges. Some women were discouraged from getting pregnant by doctors due to their disease. Several women felt that there was a lack of multidisciplinary management that included secondary and primary care services. Women felt that their clinicians often focused on the management of their disease, and that they did not view them holistically. Secondary care physicians reported that women who are planning a family were already managed through multi-disciplinary teams, but acknowledged that this might not be available to women ion all areas of the UK.
  Value of multi-disciplinary care “And so it’s actually getting everybody that might need to be involved to see it in a more holistic way.”
(HP1, health visitor)
Women valued care from a range of services in addition to rheumatology, including primary care physicians, obstetrics, counselling, physiotherapy, occupational therapy, and midwifery and health visiting services. Women who received care from a multidisciplinary team with an open line of communication, usually those receiving their treatment at national centres of excellence, found the approach helpful. Women recognised the value of a multi-disciplinary approach, especially input from midwives and health visitors from the early stages of pregnancy onwards. High level of consensus that multidisciplinary care is needed.
Accessing support Regional differences “So a lot of the things that are available are area specific and not needs specific you know so your need might meet the threshold but be outside of the area”
(HP1, health visitor)
Travel to specialist services, and ability to access to fertility services were challenging in some areas. Women acknowledged that there was considerable variation between regions in the availability of services, including social care and psychological support. Some women reported that travel to secondary care/specialist services can be difficult. Health professionals recognised that pre-conception counseling was not always available due to regional variation. It was also acknowledged that not all regions within the UK have a multidisciplinary set-up.
  Pre-conception counselling “There are other areas of where it (pre-conception counselling) is much less developed and those sort of services tend not to be available and the general NHS approach to these patients is much more chaotic and it’s very much up to the patients to try to find out, you know, the advice”
(HP5, secondary care physician)
Though women talked about the need for more information and emotional support, pre-conception counseling services were not specifically discussed. Pre-conception advice occurred during secondary care appointments, but provision of advice was minimal for most women. Pre-conception counselling is fundamental in supporting women with ARDs, but is not universally available. There was variance between health professionals in perceptions of who is responsible for pre-conception counselling (primary or secondary care).
  Care planning “If I had an appointment made when I was pregnant so we could’ve planned those early weeks and planned a best case scenario and a worst case scenario (…) maybe it would’ve been nicer to have had a more realistic approach to what approach to what I could achieve”
(P9, non-specific inflammatory arthritis, two children)
Concerns about the potential of disease activity flare during pregnancy/post-partum and the management options. Frequency of appointments and lack of co-ordination of care were challenging for women. Some women had experienced a lack of rapid access/care planning for post-partum flare ups, but several women reported a lack of care planning. Continuity of care was felt to be particularly important during pregnancy and planning for birth. Women reported that they often had to explain their ‘story’ in relation to their ARD and pregnancy due to a lack of continuity of care. Health professionals felt there was a need for multidisciplinary care planning, including incorporating occupational therapists.
  Social & practical support “The health visitor got in touch with a local council with a (…) families team and I quickly got assigned a social worker the social worker (…) she used to take children (…) to school, she’d bring them in the afternoon and she would give them to the parents in the evening”
(P14, Systemic Lupus Erythematous, three children)
Social care, support from partners and family, and help with childcare were viewed as being helpful. These were areas where women felt that support needed to be improved, along with more support from employers, financial support, and greater understanding and awareness from social welfare agencies. Accessing healthcare could be challenging when caring for young children. Social and familial support vital for practical/physical demands of parenting was a prominent theme. Views of partners were important to women in making decisions about building a family. The provision and availability of social support was discussed by some health professionals. It was felt some social support might be available to help with practical aspects of parenting, such as getting children to school or providing care whilst the mother is attending hospital appointments or during hospital admission.
  Peer-support “What you really want is somebody else who’s been through that to say this is how they found it”
(P10, vasculitis, no children)
Peer-support and learning from the experiences of others were valued by women. Greater availability of peer-support was identified as an area for improvement. Women often reflected on the availability of online peer-support due to the lack of disease specific groups available. Women wanted to hear about the experiences of other women with ARDs. Not discussed.
  Tailoring existing healthcare services for women with ARDs “I mean we need more education, I’m thinking about health visitors but we need more education I think about attachment because it’s really key in these things and understanding how if you have, whatever it is really, if something hijacks your care-giving experience as an adult, how that affects the sort of longer term outcomes for the child and the relationship.”
(HP1, health visitor)
Women felt existing services should be improved by: providing more involvement in decisions about their health and building a family; provision of consistent and proactive care, and; specialist midwife/specialist nurse involvement during pregnancy. 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. Availability and suitability of mother and baby groups as a traditional form of support was frequently discussed. Women reported that they would attempt to engage in mother and baby groups, but would often struggle to fully participate due to their limited mobility. Some women felt there was a need for specialised mother and baby groups. Some women’s experiences with occupational therapy services were that they did not take into account their role as a mother who needs to look after a child. During pregnancy, health visitors and midwives felt that clinician training in the management of chronic conditions and their potential impact on the family unit was needed to help facilitate a multidisciplinary approach.
  Psychological support “I was again feeling totally useless because I should have been able to drive him (son), I should’ve been able to just get dressed, get him in the car and to the hospital and I could not put one foot in front of the other, I was so tired”
(P14, Systemic Lupus Erythematous, three children)
More emotional support and counseling was viewed as a way of improving care. Uncertainty about the impact of disease on pregnancy (and vice versa) and ability to cope with demands of parenting resulted in fear and anxiety. 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. Having realistic parenting ideals was perceived to be helpful. Positive aspects of parenting included motivation and sense of purpose. Women expressed a need for more psychological support. For many women, their ARD 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. Health professionals felt that it was important to consider the psychological support needs of women. They felt that support for anxiety and depression was needed due to the specific challenges associated with planning a pregnancy, changing medication, managing a pregnancy and coping with a young child whilst also dealing with ARD symptoms.
  Support with functional symptoms “(Daughter) was christened in October 2015 and I couldn’t even hold her, I could not stand up and hold her so when she got christened, I couldn’t even hold my daughter at the font”
(P4, non-specific inflammatory arthritis, one child)
Women expressed concerns about whether they would be ‘well enough’ to cope with caring for young children due to fatigue, exhaustion, lack of sleep, pain and mobility. Several women found that fatigue, pain, and mobility presented challenges when it came to caring for young children. Health professionals acknowledged a need for the provision of social and psychological support to help women cope with these symptoms.