Pregnancy and motherhood with congenital heart disease: exploring lived experience, difficulties, resources and coping strategies

Abstract

Background: For the first time in history, a generation of women with congenital heart disease (CHD) stands before the question of procreation. Medical research has recently established precious knowledge and guidelines regarding these high-risk pregnancies, embedded in a bio-medical perspective. The present qualitative study explored lived experience of mothers with CHD aiming to identify potential difficulties and disclose specific resources as to improve health services. Methods: Semi-structured interviews were conducted with five women aged 33 to 41 years, who gave birth to a healthy baby. We analysed discourses using grounded theory, and elaborated theoretical results embracing an embodied-societo-psychological perspective. Findings: Pregnancy and motherhood were not only times of joy and pleasure, but were also subject to specific concerns, anxiety and automatic thoughts, which lead up to restraining emotional implications towards the future baby. In order to clarify symptoms, women used medical communication and information as main resources. Exchanging their experience and emotions with partners, family, friends and especially within patient’s association provided strong means of support. Furthermore, women developed specific behaviours, such as limiting daily and professional activities while organising help, in order to keep physical risks under control. Becoming a mother seemed to have an important impact upon their own and other’s perception of living with illness, normality and sense of belonging. Discussion: In this specific context, health psychologists may provide adequate counselling, ideally starting during pregnancy or earlier. Moreover, patient education is essential, allowing women to adopt a health protective behaviour.