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This research project aimed to explore the lived experience of family planning for women living with IBD and their partners. The project wanted to explore this during the different phases of the reproductive journey, preparing to start a family, being pregnant and after having a child and for women who do not have children. We then hoped to take those insights and findings and use them in a way to support women living with IBD and their partners and healthcare professionals.
Research has shown higher rates of women of child-bearing age not having children when compared to the general population. This can only partly be explained by existing research on physical and psychosocial factors. The evidence also shows that women living with IBD have reported higher levels of pregnancy-related fears and worries.
This research aimed to review the existing literature and try to understand the impact of IBD on the different reproductive stages- planning to become pregnant, being pregnant, the postnatal period (having a newborn baby) and not having children. We then wanted to create a piece of work that would reflect the findings back to people living with IBD.
The research team undertook a literature review on pregnancy outcomes and factors affecting family planning decisions of men and women diagnosed with IBD and used these findings to design the structure of an interview with women and their partners in the various reproductive stages.
We interviewed 27 participants, 3 were planning to start a family, 9 were actively pregnant, 8 had already had their babies and 3 did not have children, in addition, 4 partners were interviewed. The interviews were the subject of thematic content analysis and are currently being analysed using interpretative phenomenological analysis.
The research team then recruited 4 artists; an animator, a comic illustrator, a graphic designer and a documentary maker. The artists were given some background on IBD from a healthcare professional and given the raw transcripts of the interview to interpret. The 3 artists created pieces of work based on their interpretation of the research data and the documentary maker captured the process.
A total of 41 articles involving over 7000 patients were included in the literature analysis and poor knowledge of pregnancy related issues were found to be associated with childlessness. Pre-conception counselling was associated with women choosing parenthood. There was limited data in several key areas including sexual dysfunction, the pregnancy, postpartum period and parenting experiences and little documentation of men’s experiences.
From the interviews we found that decision-making around family planning is complex. Women experienced a variety of IBD related fears related to disease status, pregnancy complications, medication and baby outcomes, the former two were the dominant factors in decision making.
The artists came up with 3 unique ways of representing the findings. Click to watch the video and to open the comics and leaflet, the researchers would like to gather feedback on the art pieces and you can use the QR codes at the end of each piece to complete a short questionnaire and share your thoughts.
The animator, Sorrel Milne, created a short film.
Our Comic Illustrator , Jess Butcher created a series of short colourful comics that illustrate and empower different stages of the family planning journey for different families living with IBD.
Our Graphic Deisgner, Rae Frances produces a series of leaflets that draw readers attention to key areas of family planning with IBD.
We plan to publish the scientific analysis of the data in the near future so it’s visible to health care professionals.
The research team and Art School will be hosting a live art event at the University of Wolverhampton on November 16th 2021 and following it up with an online launch event on November 30th, which we hope people with IBD will be interested to attend.
By Professor Helen Steed, Faculty of Science and Engineering, University of Wolverhampton on behalf of Dr S Purewal, Dr S Chapman, Ms W Czucher-Dochan, Dr C Selinger, Miss R Homer, Prof M Brookes Research Supported by: University of Wolverhampton, University of Bath, King’s College London, The Royal Wolverhampton NHS Trust, The Leeds Teaching Hospitals NHS Trust
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