Exploring the reproductive decision support needs and preferences of women with cystic fibrosis

Objectives As women with cystic fibrosis (CF) live longer, healthier lives, they increasingly face decisions related to their reproductive health. This qualitative study explores their unique decision support needs and preferences to aid in the development of a CF-specific reproductive goals decision aid. Study design Women with CF age 18–44 years participated in individual, semi-structured, telephone-based interviews, and women with CF age 18 years and older participated in semi-structured focus group discussions (FGDs). Both explored experiences and attitudes surrounding parenthood, pregnancy, contraception, and preferences for reproductive health care provision. FGDs also explored the use, content, and format of a reproductive goals decision aid for women with CF. We transcribed interviews and FGDs and conducted content and thematic analyses using an inductive approach. Results Twenty women (age range 20–42 years) participated in interviews and 18 women (age range 26–63 years) participated in three FGDs. Major themes identified included: 1) CF complicates pregnancy and parenting decisions; 2) Women make contraceptive decisions within the context of their CF; 3) Women with CF prefer to receive reproductive health counseling from their CF team; 4) Women with CF desire defragmented, coordinated reproductive health care; and 5) A disease-specific reproductive goals decision aid would encourage relevant parenting, pregnancy, and contraceptive discussions. Conclusion Women with CF have unique reproductive health care needs and often face uncertainty and disjointed care when making reproductive health and contraceptive decisions. Implications This study underscores the central role of the CF team and illustrates opportunities to better support women with CF in their decisions surrounding sexual and reproductive health, including through a patient-centered, disease-specific, reproductive goals decision aid.