Pediatric pulmonology · 2025
Exploration of MyVoice: CF as a Reproductive Health Decision Support Tool for Adolescent Females With Cystic Fibrosis.
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Albanowski Maya L, Prangley Asher, Stransky Olivia M, Chang Judy C, Deal Ashley, O'Leary Raelynn, Phillips Rhiannon, Kazmerski Traci M
Аннотация
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.
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.