OBJECTIVE: This study explored the lived experiences of women with congenital heart disease (CHD) during pregnancy and early motherhood.
DESIGN: Qualitative study using semistructured interviews. Data were analysed according to interpretative phenomenological analysis.
SETTING: San Donato Milanese, Italy.
PARTICIPANTS: 12 adult women during pregnancy or early motherhood.
RESULTS: Three main themes emerged from the analysis that were labelled as follows: 'Being a woman with CHD'; 'Being a mother with CHD'; and 'Don't be alone'. Mothers described both positive and negative feelings about their pregnancies and transitions from childless women to mothers with CHD. They needed supportive care to improve the management of their health during pregnancy and early motherhood.
CONCLUSION: This study explored the lived experiences of women with CHD during pregnancy and early motherhood. The emerged themes represent an initial framework for implementing theory-grounded educational and supportive strategies that improve self-care, engagement and quality of life for women with CHD. Furthermore, the study's results provide guidance for operationalising the described experiences into items and domains for future cross-national surveys.