Continuing pregnancy following a prenatal diagnosis of a cardiac defect: What support do parents need?

• Purpose To explore pregnant women´s/couples’ experiences of counseling and need for support during continued pregnancy following a prenatal diagnosis of congenital heart disease (CHD). Conceptual framework Couples choosing continued pregnancy need support from the time of prenatal diagnosis until delivery. Method Design: Qualitative study, using in-depth interviews 4-8 weeks after prenatal diagnosis. Setting: A tertiary center fetal cardiology unit in Sweden Sample: 12 pregnant women and their partners, consecutively recruited after a prenatal diagnosis of an isolated and significant cardiac defect in their fetus. Data analysis: Qualitative content analysis. Major findings The analysis resulted in four themes: Making the decision: Short waiting time for specialist evaluation together with clear, honest and straightforward information was essential. The importance of knowledge: Parents called for written information together with a high-quality regulated website with information about CHD. The importance of support: Continued and easy access, throughout pregnancy, to health care professionals, including a pediatric specialist nurse, was important. Other parents with similar experiences and social media were also valuable sources of support. Future and daily life: Practical and economical issues during the hospital stay and the initial period after the hospital stay were common concerns. Conclusion The results provided valuable knowledge of how to improve information and support during pregnancy. Short waiting time from first suspicion to definitive diagnosis and continued support throughout pregnancy emphasizing the role of the pediatric cardiology specialist nurse was important. Web-based information was warranted Clinical implications These results provide important information for a future intervention study of a structured follow-up program in collaboration between antenatal- and pediatric cardiac caregivers.

Ämnesord

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences (hsv//eng)

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