Abstract
Background
Women with inflammatory bowel diseases (IBD), such as Crohn’s disease or ulcerative colitis, have normal fertility and can have healthy pregnancies and children. However, many have fewer children than the general population, with up to a third of women choosing “voluntary childlessness.” Given that IBD diagnoses can elicit reproductive concerns related to contraception choice, pregnancy, and parenthood, this study explored the reproductive health decision-making experiences and preferences of women with pediatric-onset IBD.
Methods
In this qualitative study, we recruited women ages 18–44 years old with a childhood diagnosis of IBD who are followed by gastroenterology at one pediatric and one adult academic medical center in Western Pennsylvania to participate in individual, semi-structured interviews. We conducted interviews between July 2019 and July 2020, exploring experiences and attitudes toward parenthood, pregnancy, contraception, and family planning care provision. Interviews were audio-recorded and transcribed verbatim. Two independent coders performed analyses using a deductive and inductive coding approach and identified dominant themes and representative quotations. We conducted interviews until thematic saturation was reached.
Results
Twenty-one women with IBD participated in interviews (average age 24.7 +/-5.9 years, range 18–43 years; average age of diagnosis 14.1 +/- 2.0 years). Five women had been pregnant, and 16 wanted to have children in the future. We identified 4 key themes: (1) Nulliparous women who do not currently desire pregnancy appear to lack reproductive health knowledge; (2) Women with IBD lack clarity regarding the role IBD plays in contraceptive choice; (3) Related to pregnancy, women are concerned about the heredity of IBD, antepartum disease activity, and the safety of their current medications; (4) Women with IBD typically default to their women’s health provider for reproductive healthcare and counseling, but they expect their gastroenterologist to initiate relevant reproductive health discussions with them and to provide information in the context of their disease.
Conclusions
Women have concerns about the effects of IBD on pregnancy, parenthood, and contraceptive choice; however, many have had limited or no discussion with their gastroenterologist about these topics. They have gaps in their reproductive health knowledge and report receiving conflicting advice from different providers. Obtaining the perspectives of a larger sample of women with IBD and both women’s health and gastroenterology providers may further guide the development of interventions to improve this aspect of comprehensive care.
EXPLORING THE REPRODUCTIVE HEALTH DECISION EXPERIENCES AND PREFERENCES OF WOMEN WITH INFLAMMATORY BOWEL DISEASES
