During COVID, and given the shift to online support, I began to wonder, how do we help HCPs understand the importance of lived experiences and peer support in facilitating better pregnancy outcomes and successful pregnancy journeys for women with diabetes?
I realised the answer could be by helping create a resource that is useful for both the women and HCPs alike.
Pre-COVID 19 at my local hospital the waiting room bustled with different family dynamics. Newly pregnant couples, women in work uniforms who have rushed to make the afternoon-only clinic, and mothers with children after successfully navigating school/daycare pickup to keep their appointment – often resulting in a waiting room filled with alert chatting adults, mostly women, and (usually) children keeping themselves (and each other) entertained. Every Thursday afternoon you could add to this scene two queues of women forming at two check-in areas parallel to each to present for their diabetes or an obstetric appointment. Connections would be made and friendships formed as the women became familiar with each other at their regular check-up. In effect, the waiting room became an impromptu village and source of support.
As COVID-19 sent the region into lockdown, with the hospital and its surrounding suburbs deemed a “hotspot” area, all appointments other than those deemed necessary for a physical examination moved to Telehealth. Waiting rooms were largely empty, women sat apart and started stilted conversations while the majority sought support in a distanced capacity, usually online. The village necessarily dispersed and so many women, as a result, lost the experience of regularly connecting with other women in person in their shared lived experience of becoming motherhood.
For women with diabetes in the pre-contemplation/contemplation stages of pregnancy in particular, the influence of peers is more valuable than that of their medical team (Edwards et al., 2016). This is particularly valid for women who have had diabetes for a long time, where medical intervention and the “medicalisation” of key points in their life can be seen as a perceived removal the personalised continuity of nature of care, with less emphasis on them as a person and more focus on them as a “patient” (Woolley et al., 2015)(Dahlberg & Berg, 2020). Add to this the frequent nature of medical appointments, and a pregnant woman with pre-existing diabetes may be filled with an overwhelming sense of medical scrutiny, as well as the need to seek assurance that what she is going through is normal.
This peer assurance normally happens in the informal conversations between the women in waiting rooms. Whether it be comparing stories of insulin pumps (and breast pumps), to sharing grievances with the unpredictable nature of blood glucose changes, or even the stress of getting to so many appointments around work or parenting commitments. Without physical waiting rooms cum support village, where do the women turn to?
Enter online peer support.
I found my “village” of diabetes and pregnancy support three days after my son was born, in the form of a Facebook group recommended to me by a Coeliac Disease Peer Support Facebook group. To this day, I feel that it was thanks to the support of this group that I was able to navigate the hardest part of my pregnancy journey – the 4th trimester AKA the first 12 weeks of our child and us getting to know each other ‘earth-side’.
However, I also am filled with regret and frustrated that I didn’t know such a resource existed when my partner and I were in the planning stages of our pregnancy journey. I had spent SO many nights anxiously googling information… seeking encouragement that my pregnancy journey was normal, and trying to appease feelings of diabetes distress, judgement and guilt – feelings that commonly stop women with diabetes engaging with their Health Care Professionals (HCPs) when planning their pregnancy (Murphy et al., 2010). Little did I know then about the strong impact of social media in updating women’s knowledge and confidence in terms of diabetes management and peer engagement (Sina et al., 2018).
During COVID, and given the shift to online support, I began to wonder, how do we help HCPs understand the importance of lived experiences and peer support in facilitating better pregnancy outcomes and successful pregnancy journeys for women with diabetes?
I realised the answer could be by helping create a resource that is useful for both the women and HCPs alike.
At the start of the COVID lockdown a fellow member of the diabetes and pregnancy Facebook group reached out seeking co-hosts to start a diabetes and pregnancy podcast. I had eagerly been looking for a way to give back to the peer support community which had helped me so much, and with my background in media and communications I felt this was the perfect opportunity. With another member also volunteering to co-host, we launched MamaBetes: a podcast for women with diabetes, by women with diabetes. Our aim: to share the lived experiences of women with diabetes and their pregnancy journeys, as well as supportive stories from diabetes advocates and HCP spots to answer any questions about the pregnancy journey.
Alongside these regular spots/topics we covered topics not widely discussed and those deemed sensitive; these ranged from issues in hospital settings, stories of pregnancy loss, stigma in diabetes, advocating for yourself in your clinical care, cultural representation and support, as well as stories of complications and when things hadn’t gone to plan.
Little did we know how needed a resource it was! After each episode aired women contacted us thanking us for the resource – many reported finally gaining confidence in advocating for themselves and their care, whilst others also shared their relief at feeling less alone on their journey – especially during a pandemic! Women were even contacting us wishing to share their stories as special guests – giving back to the community in support.
We have also been approached by several state and national diabetes organisations eager to promote the podcast to their customer base! Also, we have been invited to sit on panels as consumer representatives, sharing our stories of peer support and explaining how the podcast has helped us and other women with diabetes manage our pregnancies.
Our podcast virtual village continues to grow! We average roughly 150 unique listeners per episode. We were also successful in receiving funding to help resource the podcast (as we were volunteering our time – any additional support was greatly appreciated!) Currently we have three episodes until the end of our first season, and have a quite full schedule of special guests for episodes for season 2 (releasing in early 2021). Each of us hosts have gained so much towards our motherhood journeys (even if we’re in different stages), through the shared lived experiences on the podcast.
For me, the podcast and Facebook group also continues to be one of the main motivators to continue my PhD research – it is a living, breathing example of a consumer-created peer support resource.
And post COVID I cannot wait to spread the word about this online virtual support village and podcast in my local hospital waiting room and – to engage with women/ consumers and HCPs alike in our online community/village!
If you have topic or question you would like more information on or to discuss on MamaBetes please message me!
Reference List
Dahlberg, H., & Berg, M. (2020). The lived experiences of healthcare during pregnancy, birth, and three months after in women with type 1 diabetes mellitus. International Journal of Qualitative Studies on Health and Well-Being, 15(1). https://doi.org/10.1080/17482631.2019.1698496
Edwards, H., Speight, J., Bridgman, H., & Skinner, T. C. (2016). The pregnancy journey for women with type 1 diabetes: a qualitative model from contemplation to motherhood. Practical Diabetes, 33(6), 194-199a. https://doi.org/10.1002/pdi.2036
Murphy, H. R., Temple, R. C., Ball, V. E., Roland, J. M., Steel, S., Zill-E-Huma, R., Simmons, D., Royce, L. R., & Skinner, T. C. (2010). Personal experiences of women with diabetes who do not attend pre-pregnancy care. Diabetic Medicine, 27(1), 92–100. https://doi.org/10.1111/j.1464-5491.2009.02890.x
Sina, M., MacMillan, F., Dune, T., Balasuriya, N., Khouri, N., Nguyen, N., Jongvisal, V., Lay, X. H., & Simmons, D. (2018). Development of an integrated, district-wide approach to pre-pregnancy management for women with pre-existing diabetes in a multi-ethnic population. BMC Pregnancy and Childbirth, 18(1), 1–14. https://doi.org/10.1186/s12884-018-2028-2
Woolley, M., Jones, C., Ewins, D., & Joseph, F. (2015). Type 1 diabetes and pregnancy : a phenomenological study of women ’ s first experiences. 32(1), 13–18.