Childbearing concerns, information needs and preferences of women with cystic fibrosis: an online discussion group

Objective: The life expectancy of women with cystic fibrosis (CF) has increased, enabling many to reach reproductive age. However, little is known about the childbearing concerns and information needs of women with CF or their preferences for information about the effect of their condition and its treatment on childbearing. The aim of this study was to identify the childbearing concerns and related information needs and preferences of women with CF. Methods: To ensure access to a diverse group of women with CF throughout Australia and to minimise the risk of cross infection, an online group was advertised and convened on Facebook from October through December 2017. In a closed-group moderated discussion, participants responded to questions about childbearing concerns and the related information needs and preferences of women with CF. Non-identifiable demographic information was sought via an online anonymous survey. The discussion transcript was analysed thematically. Results: Participants (n = 11) identified a number of concerns about childbearing including uncertainty about whether to have children; achieving or maintaining a pregnancy and giving birth; treatment and treatment adherence during pregnancy, breastfeeding and motherhood; and the impact of pregnancy and childbirth on future health. Women wanted information about childbearing as it related to their CF but reported difficulties accessing up-to-date accurate relevant information. Conclusions: Women with CF want to be better informed about childbearing, and identified a need for personalised information as well as regular reviews with their CF treating team so that they can make informed decisions about having children.