The WRISK project regularly asks contributors to share their perspectives on a range of issues related to risk communication in pregnancy to further understanding of the challenges faced by scientists, clinicians, policy makers, and of course women themselves when trying to navigate risk messaging. These represent individual and personal viewpoints, and are aimed at encouraging reflection and discussion, rather than reaching conclusions.
In this blog, Rhiannon Phillips discusses some of the challenges that women living with long-term health conditions sometimes face when thinking about starting a family. Rhiannon is a Health Psychologist based at the PRIME Centre Wales, Cardiff University. Her research focuses on improving the health and well-being of women of reproductive age and children, using a variety of approaches that aim to build skills, knowledge, and confidence.
Today an increasing number of women with long-term health conditions may become pregnant. There are a number of reasons for this, including a global rise in the number of people who have chronic and non-communicable diseases, people starting families at later age, medical advances in the treatment of many diseases, and changing social attitudes towards pregnancy and parenting for people who have a long-term illness or disability (Malouf et al. 2014, Steel et al. 2015). Surveys have found that around one in ten women who have recently given birth in the UK report having a long-term limiting illness or disability (Sumilo et al., 2012, Malouf et al. 2014).
Maternity services need to take into the account the needs of all women, including those with long-term health conditions and disabilities. We don’t know enough about designing pre-conception services for women with a wide range of long-term conditions that can affect people of childbearing age, from fairly common conditions such as Type II diabetes through to rarer conditions like Multiple Sclerosis (Steel et al. 2015). Women who have disabilities say that support during pregnancy, birth, and the postnatal period could be improved, especially support with improving emotional wellbeing (Malouf et al. 2014).
The STAR Family Study
What happens when women with long-term illnesses want to start a family? Does anyone talk to them about their options? Are they able to get enough information on fertility, pregnancy, and parenting? Is there any emotional support available? Around half of pregnancies in the UK are unplanned (Wellings et al. 2013), so what about contraceptive options for women with long-term health conditions who don’t want to start a family at the moment?
These were some of the questions we set out to answer in the STAR Family Study (‘Starting a Family when you have an Autoimmune Rheumatic Disease’). ‘Autoimmune rheumatic diseases’ are diseases where the immune system starts attacking its own cells by mistake. They include illnesses like rheumatoid arthritis, Lupus, and vasculitis. These diseases can affect the whole body and cause people to feel very unwell. Pain in joints and muscles, stiffness, and tiredness are common symptoms. Many women with these diseases are able to have children, but there are some risks that they need to think through, and parenting can come with some extra challenges.
Learning from lived experience
We carried out an online survey with 128 women who had an autoimmune rheumatic disease, asking them about their experiences of planning a pregnancy, being pregnant, and looking after young children (Phillips et al. 2018a). As part of the same study, we carried out in-depth one-to-one interviews with 22 women and eight health professionals.
Women told us that they found it difficult to get the information that they needed about starting a family. They especially wanted more support with deciding when was the best time to try to get pregnant, and help with planning for this.
“It [pregnancy] has to be planned because at the moment I can’t just have a child you know”
(Interview with woman with vasculitis)
Women with autoimmune rheumatic diseases sometimes need to change or stop their medications several months before they started trying to get pregnant. They also needed to think about their own health, with doctors often advising they wait until their illness was under good control before they starting trying to get pregnant. The flip side of this was that women were also worried about getting older and leaving it too late to start trying, especially if they were concerned that they might have difficulties with getting pregnant and could need fertility treatment.
Women wanted more information about what would happen to their disease if they got pregnant and had a baby. Was it likely to get better or worse? Could the disease be managed safely while they were pregnant and breastfeeding?
“I’ve got my own kind of, 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?”
(Interview with woman with vasculitis, no children)
The support women received when they were thinking about starting a family was patchy. Some women had excellent support from their rheumatology team, their GP, and their midwives. Others felt that they had no support at all. The health professionals agreed with women that the services available were not consistent across different areas.
“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”
(Interview with a hospital doctor)
Information, counselling, emotional support, practical support, and a chance to talk to others who were in a similar situation were all important to women. They especially wanted more opportunities to discuss and share decisions about starting a family and the management of their disease with their clinical teams.
Improving support for women
With this in mind, what can we do to improve the support that women with autoimmune rheumatic diseases receive? Women in different areas of the UK and with different diseases don’t get the same access to pre-pregnancy counseling or well coordinated care during pregnancy and birth at the moment. We need to make sure that women have more equal access to these important services.
We need to raise awareness about working with women with long-term illnesses and disabilities amongst a range of health professionals who work with women during pregnancy and after birth to make sure women are getting the holistic support that they need. This includes midwives, health visitors, physiotherapists, occupational therapists, and social care professionals.
“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.”
(Interview with health visitor)
Making sure that mother and baby groups are accessible for women with disabilities, and ensuring that they have tailored support with breastfeeding, could make a big difference. For example, putting babies down at floor level during mother and baby groups can be a problem for women who have problems with pain or mobility, so it’s important to make sure that activities are accessible to everyone in the group. The Breastfeeding Network has a drugs and breastmilk information service, which can answer questions about medication and breastfeeding. Service users have described this as ‘a lifeline when no one else gives you an answer’.
More evidence is needed
We asked a group of women, health professionals and researchers what the highest priority areas were for research to help improve the support that women with autoimmune rheumatic disease get during pregnancy planning, pregnancy, and early parenting (Phillips et al, 2018b). Creating opportunities for women to discuss family planning and pregnancy with their clinical team so that they could share decisions about pregnancy and the management of their disease was the highest priority area for our stakeholders. Women and health professionals felt that discussions about starting a family should start as soon as possible after diagnosis, and to continue over time so that the issue could be talked about regularly.
We are now looking in more detail at how we can support both women and health professionals in having discussions about starting a family, and sharing decisions about treatment and planning for pregnancy that take into account women’s individual needs and preferences. This is likely to involve providing women with the information that they need, giving them tools to help them make decisions (for example, helping them to weigh up the pros and cons of different options), and building their confidence in talking to health professionals about starting a family. It is also important for health professionals to have the necessary knowledge and skills that they need to have good conversations with individual women about their options, needs, and preferences.
Since starting this project, we’ve been contacted by our local lung, kidney, and neurology services who are all keen to provide better support for women with decisions about starting a family. Health professionals find it especially difficult to advise women with rarer diseases, like Parkinson’s Disease and Cystic Fibrosis, about the potential risks of pregnancy for them and their children because there isn’t enough evidence available at the moment to provide them with accurate information. Working with data from large registries of patients with these diseases could help us provide doctors and patients with better information in the future to guide their choices.
Find out more about our research
Our latest work on supporting women with inflammatory arthritis with decisions about pregnancy is part of Zoë Abbott’s PhD project, the FAMILIAR Study. You can follow her on Twitter @FamiliarStudy for information and updates.
Arthritis Research UK information on arthritis and pregnancy: https://www.versusarthritis.org/about-arthritis/living-with-arthritis/pregnancy/
Breastfeeding Network drugs in breastfeeding service information: https://www.breastfeedingnetwork.org.uk/wp-content/dibm/BFN%20Drugs%20in%20Breastmilk%20Info%20Poster%202.pdf
Shared Decision Making resources from The Health Foundation: http://personcentredcare.health.org.uk/shared-decision-making
Brown, A, Finch, G, Trickey, H, Hopkins, R (2019). ‘A lifeline when no one else wants to give you an answer’. An evaluation of the Breastfeeding Network drugs in breastmilk service [Executive summary], https://breastfeedingnetwork.org.uk/wp-content/pdfs/BfN%20Executive%20summary.pdf
Malouf, R, Redshaw, M, Kurinczuk, J, Gray, R. (2014). Systematic review of heath care interventions to improve outcomes for women with disability and their family during pregnancy, birth and postnatal period. BMC Pregnancy and Childbirth, 14:58, https://doi.org/10.1186/1471-2393-14-58
Phillips, R., Pell, B, Grant, A. et al. (2018a). Identifying the unmet information and support needs of women with autoimmune rheumatic diseases during pregnancy planning, pregnancy and early parenting: mixed-methods study. BMC Rheumatology 2: 21. https://doi.org/10.1186/s41927-018-0029-4
Phillips R, Williams D, Bowen D et al (2018b). Reaching a consensus on research priorities for supporting women with autoimmune rheumatic diseases during pre-conception, pregnancy and early parenting: A Nominal Group Technique exercise with lay and professional stakeholders. Wellcome Open Res, 3:75, https://doi.org/10.12688/wellcomeopenres.14658.1
Steel, A, Lucke, J, Adams, J. (2015). The prevalence and nature of the use of preconception services by women with chronic health conditions: an integrative review. BMC Women’s Health, 15:14. https://doi.org/10.1186/s12905-015-0165-6
Sumilo, D., Kurinczuk, J. J., Redshaw, M. E., & Gray, R. (2012). Prevalence and impact of disability in women who had recently given birth in the UK. BMC pregnancy and childbirth, 12, 31 https://doi:10.1186/1471-2393-12-31
Wellings K, Jones KG, Mercer CH, et al (2013). The prevalence of unplanned pregnancy and associated factors in Britain: findings from the third National Survey of sexual attitudes and lifestyles (Natsal-3). Lancet. 382(9907):1807–16. DOI https://doi.org/10.1016/S0140-6736(13)62071-1