A study chronicling the experiences of women with inflammatory bowel disease (IBD) during and after pregnancy found nurses and midwives were often unable to provide information and advice.
The qualitative research, led by the University of Leeds, is based on detailed interviews with 22 women who have both been diagnosed with the condition and have given birth to children.
“Participants concluded that most GPs, midwives, and nurses knew little about pregnancy with IBD”
It draws on previous studies that have shown women with IBD sometimes decide not to have children or limit the size of their family, because of fears pregnancy could make the condition worse and concerns about complications.
This is despite the fact such fears are often unwarranted with some women actually seeing an improvement in symptoms during pregnancy, said researchers.
The Leeds University study – published in the journal Qualitative Health Research – confirmed a lack of accurate information from health professionals could be an issue for women with IBD contemplating starting a family.
Some women who took part in the study said they feared they would definitely pass IBD onto their baby, while others worried about how they would cope with a small child during times when their condition flared-up.
“Learning to live with a chronic illness has helped the women prepare for motherhood”
Meanwhile, some thought it would be difficult to get pregnant given the lengthy periods of ill-health they had experienced.
However, most reported nurses and midwives did not seem to know enough to give reassurance, accurate information and advice.
“Participants concluded that most general practitioners, midwives, and nurses knew little about pregnancy with IBD and one recalled how she ‘went to the midwives and they were like “Oh…I don’t know…um”. So they looked it up and printed off some information and gave me it’,” the study said.
Researchers found the reality was many of the mothers with IBD that they spoke to got pregnant fairly quickly and made the transition to motherhood relatively smoothly.
In fact the study – funded by the charity Crohn’s and Colitis UK – found that living with a chronic illness could be valuable preparation when it came to dealing with the challenges of becoming a parent.
For example, one mother said that years of being careful about her diet made it easy to maintain healthy food choices during pregnancy.
Another said coping with the unpredictability of IBD had helped her adapt to the “massive change” involved in becoming a parent.
“If they had access to that information, they may make an entirely different choice”
“One of the main points to emerge from the study is that learning to live with a chronic illness has helped the women prepare for motherhood. These women coped well with being parents,” said psychologist Professor Anna Madill, who supervised the research.
Professor Madill, who has IBD herself, said it was vital that with women with the condition got good information and advice to help them make informed choices about starting a family.
“It is desperately sad that women are opting to remain childless, because they are unable to get an accurate picture of the risks they face,” she said.
“If they had access to that information, they may make an entirely different choice,” said Professor Madill.
She added: “The healthcare system needs to make sure that women living with IBD have access to all the facts necessary to make a full-informed decision.”