Family planning and IBD

What this research looked at?

Crohn's and Colitis often affects 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.  

The researchers wanted to find out: 

• Why do many women with Crohn’s or Colitis choose not to have children or have fewer children? 
• What worries do women with Crohn’s or Colitis have around becoming pregnant? 
• How can pregnancy services for those with Crohn’s or Colitis be improved? 

To answer these questions, the researchers looked at previous studies to find out what is already known to influence family planning decisions. They interviewed women with Crohn’s or Colitis and their partners to explore their experiences and family choices. Using these findings, the researchers carried out focus groups to identify what resources are needed to support people to make informed decisions about family planning that are right for them. 

What this research found  

Exploring the evidence 

The review of previous studies found that women with poor knowledge of pregnancy‐related issues were more likely to choose not to have children. They also showed that those who had pre-conception counselling were more likely to choose to become parents. 

Interviews 

The researchers 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 around starting a family. The six main themes identified were: 

• How the diagnosis and symptoms of Crohn's and Colitis changed family planning 
• The importance of relationships and family planning 
• Concerns related to pregnancy in Crohn's and Colitis and how this changes family planning 

• The potential problems and challenges after the delivery 
• Using information resources to help with family planning 
• Understanding that improving care might affect family planning 

Women who were not yet pregnant wanted more information around 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.   

Developing an intervention 

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 feedback will be used to 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. 

The next phase of the study will go on to develop the information sources to address the fears women with Crohn’s and Colitis have around family planning and pregnancy. 

These are likely to be: 

• Written information – providing accurate information to address the fears around family planning that people with Crohn’s or Colitis have expressed. 
• A short video – exploring fears and concerns around family planning and pregnancy. 

What the researchers think this could mean for people with Crohn’s and Colitis 

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 researchers hope this will raise awareness among healthcare professionals of the key issues around Crohn’s and Colitis and family planning. The resources in development will help women and their partners make an informed choice about their family planning and support training for healthcare professionals. 

Who is leading the research: Prof Matthew Brookes, Royal Wolverhampton NHS Trust 
Our Funding: £72,653 
Duration: 24 months 
Official title of the application: The lived experience of family planning of female patients diagnosed with inflammatory bowel disease (IBD) and their partners during key reproductive stages – a qualitative study. 
Tags: Pregnancy; family planning