Tracing the patient journeys of pregnant women with heart disease: a qualitative study

Background Heart diseases (HD) are a group of heterogeneous conditions that increase maternal and fetal risk during pregnancy. Contemporary guidelines recommend multidisciplinary care for the management of HD in pregnancy, but how women experience such care needs further exploration. This study examined the patient journeys of pregnant women with HD who accessed specialized cardio-obstetric services in Queensland, Australia, examining the barriers, facilitators, and structural factors shaping their experiences across diverse social and geographic contexts. Methods Women who had accessed cardio-obstetric care in the past year were recruited consecutively during their postpartum cardio-obstetric clinic visits at two public hospitals. In-depth interviews were conducted with participants. Participant-generated diagrams were used as a visual elicitation method to support discussion. Narrative analysis was conducted from a critical-pragmatic perspective, providing an action-oriented focus while attending to power and inequity. Results Twenty-one women participated. The patient journeys of pregnant women with HD in Queensland were summarised with a fixed vector map. Entry into the care journey (whether HD was diagnosed before or during pregnancy) altered the power dynamics women experienced throughout their care. Care touchpoints varied substantially and were arranged into the care journey through different models. How well care experiences aligned with women’s expectations was determined by multiple factors, including the characteristics of the care model, comorbidities, and carer capability. Within and outside of health care encounters, women bear a significant burden in making decisions to navigate their risk within constraining biological, social, and structural contexts. Care access came at considerable financial and time cost, with geographic remoteness and socioeconomic disadvantage contributing to significant inequities. Conclusions This study offers a holistic account of how the care experiences of pregnant women with HD are shaped by complex care pathways, geographic location, and socioeconomic circumstances. Responses across health and non-health policy domains that recognize geographic, economic, and social vulnerabilities are needed to reduce the inequities experienced in accessing care. Structured pathways for referrals and obtaining guidance for clinicians is important. Our findings also offer clinicians and health planners a window into the lived reality of women who have pregnancies complicated by chronic conditions, with the hope that this understanding translates into more empathetic and responsive care.