Exploration of MyVoice: CF as a Reproductive Health Decision Support Tool for Adolescent Females With Cystic Fibrosis.

BACKGROUND

More people with cystic fibrosis (PwCF) are surviving to adulthood and considering their reproductive futures starting in the teen years. MyVoice:CF is a web-based reproductive health decision support tool for adult female PwCF. Given the evolving cystic fibrosis (CF) population, we explored the role of MyVoice:CF and further reproductive health resources for adolescent female PwCF.

METHODS

We conducted qualitative interviews with female adolescent and young adult (AYA) PwCF between age 13-26 years and their caregivers regarding their reproductive health experiences, the acceptability and usability of MyVoice:CF, and the desired additional resources for female AYA PwCF. We recorded and transcribed all interviews and analyzed them thematically using an inductive coding approach.

RESULTS

We interviewed 16 AYAs and 11 caregivers. Key themes included: (1) AYA females with CF are considering their reproductive health and are curious about how CF will affect their future reproductive goals; (2) Participants found MyVoice:CF informative, user-friendly, and relevant for adolescents; (3) Suggested additions include information about puberty, healthy relationships, and learning how to self-advocate in interpersonal and medical settings; (4) AYA participants were particularly interested in hearing about reproductive health experiences of peers and being able to use MyVoice:CF to connect with other PwCF; (5) Participants shared the importance of open parent-child conversations regarding reproductive health and the use of MyVoice:CF to supplement these discussions.

CONCLUSION

Participants found MyVoice:CF acceptable and usable for adolescent female PwCF and as a tool to initiate conversations between AYAs, caregivers, and providers.