jabbrv-ltwa-all.ldf jabbrv-ltwa-en.ldf Her Heart, Her Health: Lived Experiences of Healthcare Transitions and Unmet Women’s Health Needs in Adult Females with Congenital Heart Disease

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Abstract

Objective: To explore lived healthcare transition experiences of adult females with congenital heart disease (AF-CHD) and to identify their unmet women’s health needs. Design: Qualitative phenomenological inquiry using in-depth, semi-structured interviews. Setting: A single academic medical center in the southern United States with a dedicated adult congenital heart disease (ACHD) program. Population: Twenty-four females between 21–30 years old at the time of interview, with childhood diagnosis of congenital heart defects or congenital arrhythmias. Methods: Demographic survey and semi-structured interviews with thematic analysis. Main Outcome Measures: Thematic analysis describing participants’ healthcare transition experiences and their perceptions of unmet women’s health and primary care needs post-transition. Results: Three key themes emerged: (1) Complex Cycles —highlighting menstruation challenges and lack of coordinated gynecologic care; (2) Heartfelt Choices —reflecting uncertainty and risk navigation in reproductive decision-making; (3) Refining Motherhood —exploring motherhood expectations and genetic concerns. Conclusions: Adult females with CHD face unique, evolving healthcare needs that remain unaddressed following transition to adult care. Integrated, sex-aware, and gender-sensitive care models are essential to support this population across the reproductive lifespan.

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