Abstract
Introduction: Individuals with congenital heart disease and acquired heart disease are at increased risk for medical complications during the postpartum period, yet their specific experiences, barriers, and preferences for care remain poorly understood. As more individuals with cardiac disease reach childbearing age, there is a pressing need to develop patient-centered postpartum care models that address the unique challenges faced by this high-risk population.
Methods: This convergent mixed methods study was conducted at a tertiary care hospital specializing in multidisciplinary care. Eligible participants included individuals with congenital heart disease or acquired heart disease were identified through the hospital’s maternal cardiac database. Quantitative data were collected via an electronic survey sent to 316 eligible participants, with 128 completing the survey. Qualitative data were gathered through in-depth phone interviews with a sample of 20 participants with congenital heart disease, including 16 who also completed the survey. Interviews were conducted in English or Spanish and analyzed using grounded theory methodology to identify key themes. Findings from both datasets were integrated to provide a comprehensive understanding of postpartum experiences.
Results: Participants reported substantial barriers to postpartum care, including insufficient information about potential complications, physical limitations due to cardiac symptoms, and logistical challenges such as childcare and transportation. Thirteen percent of respondents reported significant difficulty accessing medical care within the first two months postpartum, despite 87% attending at least one postpartum visit. Unmet needs were common: 44% identified a lack of breastfeeding support and 40% reported insufficient mental health resources, often resulting in increased reliance on family or partners. Many participants expressed a desire for earlier and more frequent postpartum follow-up, with 23% preferring their first visit within one week and 38% within two weeks of delivery. Flexible care options were highly valued, with 59% preferring telehealth, 41% favoring home visits, and strong interest in multidisciplinary support.
Conclusion: Postpartum individuals with heart disease face significant barriers to comprehensive care in the fourth trimester, including informational, physical, and logistical challenges. Patient-centered interventions, such as earlier and more frequent follow-ups, expanded telehealth services, integrated mental health and lactation support, and multidisciplinary care, are essential to improve outcomes and address the complex needs of this growing population.