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Résumé :
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"Cystic fibrosis (CF) affects over 100,000 people worldwide. Despite advances in CF care, sexual and reproductive health (SRH) care continues to lag behind other care priorities. Although partners of females with CF play a critical role in providing support and care, their perspectives of SRH care remain unexplored. During a mixed-methods study, interviews were conducted with 20 partners of females with CF, transcribed verbatim, and analyzed using thematic analysis to determine SRH-related knowledge, experiences, preferences, and concerns. Findings indicate limited progression in CF-related SRH care. Patient-initiated discussions, paternalistic provider views, and a perceived lack of provider collaboration reinforce outdated notions that parenthood in CF is not an option. Partners provide tangible, daily support to reduce disease burden for females with CF and desire inclusion in the decision-making unit. Incorporating partners in SRH discussions and providing SRH-specific training for CF clinicians are imperative to improve patient-centered care."
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