Födsel och föräldraskap bland vuxna med medfött hjärtfel : registerstudier och perspektiv från föräldrar och barnmorskor

Background: Today, more than 95% of children with congenital heart disease (CHD) reach adulthood, allowing many to consider parenthood. While research has focused on pregnancy-related morbidity and mortality, universal situations of childbirth and parenthood for this group remain sparsely explored. Given the lifelong follow-up and increased health risks for adults with CHD, the condition may influence parental experiences. The aim of this thesis was therefore to improve understanding of the universal aspects of childbirth and parenthood in adult CHD, by integrating reported outcomes with the perspectives of affected adults and midwives. Methods: This thesis includes four studies. In the register studies (study I and II), data were obtained from two national quality registers. to compare women with CHD with matched controls in terms of self-rated health before, during and after pregnancy (study I), and breastfeeding two days and four weeks after birth (study II). In the other, semi-structured interviews were used to explore experiences of parenthood among adults with CHD, and how midwives articulate their role in the childbirth of women with CHD. Results: During and after childbirth: No significant difference in the prevalence of good self-rated health after childbirth was observed between women with CHD and their matched controls (CHD 81% vs. controls 82%, p = 0.46). However, breastfeeding rates four weeks after birth differed between the two groups (CHD 84% vs. controls 89%, p = 0.006), although the difference was relatively small. Sociodemographic factors demonstrated strong associations with both poor self-rated health and lower breastfeeding rates among women with CHD. Parenthood with adult CHD: Parenthood led to the vulnerability due to CHD becoming more apparent. The presence of a co-parent and social network was emphasised as supportive in daily life. Also important was the opportunity to process life experiences and emotions with professionals. Midwives’ role when women with CHD give birth: Midwives described an interprofessional communication gap. They experienced stress due to the great responsibility they felt, in combination with a lack of background knowledge about CHD. This resulted in an ideological dilemma, as the time they would have used to provide normal childbirth support was instead devoted to medical tasks. Conclusions: Parenthood with CHD is highly individual and shaped not only by the condition itself but also by sociodemographic factors and personal health perception. Nevertheless, the need for emotional support must be acknowledged, as becoming a parent may heighten one’s sense of vulnerability. Furthermore, communication between the professionals involved in childbirth among women with CHD needs to be improved to strengthen the understanding of responsibilities and knowledge.