Introduction
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.
Methods
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.
Findings
Literature Review
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.
Interviews
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.
Artistic representation of findings
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.