Mental Health Experiences and Needs of Women With Congenital Heart Disease in Pregnancy and Postpartum: A Qualitative Participatory Study

BACKGROUND AND AIM: In the United Kingdom, mental health and maternal health are now key priorities for research among adults with congenital heart disease. However, worldwide, research on the mental health of pregnant and postpartum women with congenital heart disease is scant, and no UK-based participatory studies on the topic have been conducted. Our research aim is to explore the mental health experiences and needs of UK women with lived experiences of pregnancy and congenital heart disease. METHODS: We conducted a qualitative participatory study, in which women with lived experiences of congenital heart disease, pregnancy, and birth participated in a series of semi-structured online group discussions focused on their mental health experiences and needs and on co-designing future research on the topic. Discussions were recorded and automatically transcribed; transcripts were analysed using inductive thematic analysis. RESULTS: Eleven women with a range of congenital heart disease diagnoses and experiences took part. Five themes were developed through the analysis: women with congenital heart disease (1) feel they have very little control over preconception-, pregnancy-, and birth-planning; (2) experience anxiety around pregnancy and childbirth; (3) feel that experiencing a high risk, complex pregnancy can be isolating; (4) experience complex relationships with healthcare professionals during pregnancy; and (5) need more postpartum support. A thread running through the first four themes is the need for additional support during the pregnancy journey, in both healthcare and social contexts. CONCLUSION: Distress and anxiety were common experiences during preconception, pregnancy, and the postnatal period. These experiences were exacerbated by wider relational and systemic stressors, namely, social isolation, traumatic healthcare experiences, and lack of psychological support during pregnancy and postpartum. Future research should investigate service gaps and points of intervention for improved cardiac maternity care, as well as explore the potential of peer support programmes to reduce the social isolation experienced by women with congenital heart disease. PATIENT OR PUBLIC CONTRIBUTION: The study followed a participatory design, whereby lived experience participants co-produced the research with the study team. The lived experience participants took part in a series of four small-group meetings, focused on sharing experiences and critically reviewing a draft research agenda and questionnaire, developed by the research team based on the groups' shared experiences. Following these meetings, the lived experience participants provided feedback on our analysis and contributed to this manuscript as co-authors.