Life-changing research breaks down barriers to family planning

Professor Matthew Brookes, Consultant Clinical Gastroenterologist at the Royal Wolverhampton NHS Trust and Professor of Gastroenterology at the University of Wolverhampton has been working to improve the lives of people living with digestive and eating disorders.

Crohn's disease and Colitis often affect people in their 20s and 30s - a time when many are thinking about starting a family. Women with inactive Crohn’s or Colitis usually have no more difficulty becoming pregnant than those without the conditions and can expect to have a normal pregnancy and a healthy baby. However, many women with Crohn's or Colitis and their partners delay parenthood or have fewer or no children.  

Professor Matthew Brookes and his team carried out a research study with an aim to benefit patients by providing a detailed account of women’s needs during key reproductive stages, and intervention development that aims to support patients and their partners.

Previous studies found that women with poor knowledge of pregnancy‐related issues were more likely to choose not to have children and those who had pre-conception counselling were more likely to choose to become parents.

The research team conducted in-depth interviews with 12 women with Crohn’s, 11 women with Colitis and 4 male partners, at different stages of family planning.  The participants shared their experiences and worries about starting a family. The six main themes identified were: 

1. How the diagnosis and symptoms of Crohn's and Colitis changed family planning 
2. The importance of relationships and family planning 
3. Concerns related to pregnancy in Crohn's and Colitis and how this changes family planning 
4. The potential problems and challenges after the delivery 
5. Using information resources to help with family planning 
6. Understanding that improving care might affect family planning 

Women who were not yet pregnant wanted more information about the impact of their condition on pregnancy, the effect of medicines on the baby and the risk of passing on Crohn's or Colitis. Those who were already pregnant or had given birth wanted practical advice and support around breastfeeding and looking after the baby. Those who decided not to go down the family route also said they needed counselling and support.   

Based on the findings from the previous studies and interviews, focus groups were prepared with the aim of developing an intervention to help the decision-making. In joint discussions, people with Crohn’s and Colitis and health professionals shared their thoughts on the type and content of interventions needed.

This study has given people with Crohn’s and Colitis an opportunity to voice what they want from reproductive services, from pre-conception to pregnancy and post-delivery.

The research will help develop the intervention and to ensure it addresses all the necessary concerns people with Crohn’s and Colitis may have when deciding to have children. 

Professor Matthew Brookes said: “It has been a privilege and remains one, to be able to work with our patients to develop and deliver the types of digestive disease research that will have a meaningful impact across our diverse population.

“Collaboration across stakeholders has enabled us to undertake research in the laboratory, translational, clinical trials, qualitative and behavioural fields of research.

“We hope our research will raise awareness among healthcare professionals of the key issues around Crohn’s and Colitis and family planning.”

Following the outcome of this research, it became clear that there is a lack of awareness for people living with such diseases and there needed to be a way to communicate facts, advice and support to those in similar circumstances.

Professor Matthew Brookes has also worked to improve communication with patients and colleagues through developing a number of helpful resources with key stakeholders including a short family planning animation and supported the Crohn’s & Colitis UK ‘In my shoes’ app which have both received excellent feedback.