I qualified as midwife in 2003, with a Diploma in Midwifery, and completed the BSc in Midwifery shortly afterwards. I went on to complete a Masters in Midwifery in 2012, and found the research element of it really interesting but really challenging – I loved finding out new things and the concept of generating new knowledge but found some of the processes difficult to navigate (ethics in particular) and how everything fitted together.

My passion for research was heightened following a personal experience, which gave me a really passion for a topic, and the need to find out more; I was diagnosed with Inflammatory Bowel Disease after the birth of my second child, and following my return to work, I looked after women who were pregnant or given birth who also had IBD.

(Helen has written an overview of IBD that was published in the March 2023 edition of the MIDIRS Midwifery Digest. ‘Inflammatory bowel disease and pregnancy: an overview of anatomy and physiology. vol 33, no 1, March 2023, pp 39-42’)

Having developed some personal knowledge and lived experience of IBD and pregnancy, I started to question why there was not the same care provision for these women as there was for women with other long term conditions such as diabetes or hypertension. I looked at the NICE guidance and found that there wasn’t any comprehensive guidance about how to care for these women, and given midwives do not receive any training about IBD it wasn’t surprising that care pathways were disjointed and the apparent lack of understanding.

However, I was conscious that my lived experiences may well be influencing my view, and how did I know if that was actually a problem or something, which I personally perceived to be a problem?

I looked at the literature and found a real paucity in evidence about what the experiences of pregnancy were for women living with IBD and it was then I knew I needed to research this idea.

I applied for the HEE NIHR Masters in Clinical Research and was awarded a place, during which I undertook a small exploratory study.  This consisted of an online survey for women who had given birth within the last 12 months whilst living with IBD, and primarily highlighted that the experiences of pregnancy were being negatively affected by midwives lack of knowledge about IBD (ref H Janiszewski – MIDIRS).  I also recognised that if midwives were not correctly identifying women as having IBD, they would not be referred for appropriate care and surveillance during pregnancy, increasing their risk of complications such as a small baby or preterm birth. Given the lack of formal training midwives receive about IBD either pre or post graduate it was not surprising that midwives knowledge was perceived to be lacking; however, it was important to understand this was affecting their experiences of pregnancy negatively.

To help address some of the findings of my study, I developed an online learning module for midwives, on the RCM I-Learn platform about IBD and pregnancy, which aims to provide midwives with knowledge about IBD and how it can interact with pregnancy, and some scenarios to stimulate thoughts and reflections on care. If midwives are the first point of contact for most pregnant women, it is important that they have some knowledge about IBD, appropriate care pathways and surveillance to reduce recognised risks.

Immediately after completing the HEE NIHR Masters in Clinical Research I started a PhD, which gave me an opportunity to really explore what shapes the experiences of pregnancy for women living with IBD and to hear first-hand what women wanted from their care. Women who had a diagnosis of IBD and given birth were invited to complete an online survey, whilst women who had given birth within the last 5 years were invited to participate in a one to one interview.  I am in the process of publishing this work.

Key findings from this research have been shared nationally with midwifery and IBD specialist nurses, to help inform practice and optimise experience of pregnancy for women living with IBD.

I am now also undertaking an NIHR postdoctoral bridging award to action some of the recommendations.

Although I didn’t recognise it at the time, research has been an integral part of my midwifery training and career development – the formal research modules were challenging, but I was always wanting to know why we did things like we did, was there a different way, a better way.  It was my own lived experience which really motivated me to take the next step, to explore this phenomenon in the most robust way I could – through a formal research programme including a Masters in Clinical Research and then a PhD.

My current role enables me to continue to develop my own portfolio of research, combining clinical practice and academic work.

Research underpins everything we do, it is vital that we all have an understanding of where evidence comes from, how new evidence is developed and how we can contribute to this.