It’s National Fertility Week, so we asked Professor Helen Steed and her team to tell us about the work they have done on Crohn’s, Colitis, and choices around parenthood and pregnancy.
We are proud to have funded this important research project, as well as supported the recruitment of people with Crohn’s and Colitis to take part. We will continue to work with the researchers to help them promote the innovative resources that have been developed.
Parenthood and pregnancy are life choices that have the potential to impact so many people.
Crohn’s and Colitis are conditions that, for most people, can start before the age of forty. This means you may be thinking about becoming a parent, expanding your family, or deciding not to become a parent when you’re already living with Crohn’s or Colitis.
It’s also important to recognise that for around 25% of people that decision will be unplanned, so you need to be prepared even if you aren’t thinking about it!
It’s often said that having a baby is life changing.
But, if you’re reading this blog then the chances are that you or someone you love has already gone through the life-changing experience of being diagnosed with a lifelong disease. As a healthcare professional I’ve witnessed how traumatic and challenging that can be. Therefore, it won’t surprise you to know that decisions around parenthood and being pregnant are associated with high levels of anxiety for people living with Crohn’s or Colitis.
The good news is that a lot can be done to lessen and manage those worries and concerns to keep yourself and your potential baby well.
For our research, the team spent some time reviewing the medical research that is already out there and found that about half of patients had limited knowledge about pregnancy related issues.
We also found that those with better knowledge made different choices and were more likely to choose to become a parent.
We identified that there was limited research on the pregnancy and parenting experiences of people with Crohn’s or Colitis.
So, we interviewed a series of women and their partners who were at different stages of their family planning journey: thinking about it, already pregnant, recently had a baby or deciding not to become parents.
These interviews were analysed in detail, looking at what was said, the way it was said, and what was left unsaid. Here are some examples:
This person was already worrying about the impact of being diagnosed on her ability to have children, ‘When I was diagnosed, the first thing and the only thing I asked was if that was going to affect having children’.
Another example illustrates the sense of fear that some women may experience ‘it’s always a bit of a shadow over your shoulder at any point, and I do always have that awareness in the back of my mind, that it could kind of flare up’.
There were also examples of positive experiences, including how the healthcare team could offer support, ‘they answered all of my questions and then some, they gave me more information than I’d asked for, and it was very reassuring’.
Writing for a medical journal is not a very accessible way for most patients and their families to understand the research.
The team have already published some of the results in a medical journal but after hearing from our patient representative we were keen to produce some resources for people living with the conditions.
We had some previous experience using art to represent research findings so decided on this approach and hired 3 artists to produce individual pieces using the raw interview data. The artists were chosen based on their passion for the subject, their empathy, their previous work, and their differing styles.
What they came up with were three very different types of resource.
We have a short, hand-drawn, animation by Sorrel Milne, emphasising the relationship with the healthcare team. There’s a graphic leaflet by Rae Frances, with hand-rendered elements to provoke thought about different aspects of family planning. The leaflet also encourages questions and reflections. Finally, an illustrated comic series by Jess Butcher tells the emotional story of different characters and shows positive behaviours that may help.
The reaction to the resources has been very positive to date and the artists have really embraced our challenge to be as inclusive as they can. To expand on that ambition, were looking at creating versions using sign language, text and being translated into other languages.
I hope you enjoy the art resources both visually and emotionally. We’ve really enjoyed producing them. The hope is that they inspire you to seek out more information, particularly before you decide to start a family or if you have concerns about the prospect of starting a family.
Have those conversations with your partner, family, friends, nurse, and doctor.
As our animation says, ‘Whatever your choice, come and talk to us. We’re here to support you.’
Please tell us what you think about using art to interpret research.