“The Mental Health Piece is Huge”: perspectives on developing a prenatal maternal psychological intervention for congenital heart disease

Abstract

Objectives: Women carrying a fetus diagnosed with congenital heart disease often experience significant distress because of their medical diagnosis. Given the well-documented impact associated with elevated prenatal stress and critical importance of developing targeted interventions, this study aims to examine stressors, coping and resilience resources, and mental health treatment preferences in pregnant women receiving a congenital heart disease diagnosis to inform the development of a psychological intervention to reduce maternal distress prenatally. Methods: Three groups of participants were included consisting of two pregnant women carrying a fetus with congenital heart disease, five women of children (4−16 months) with congenital heart disease, and five paediatric cardiology medical providers. Responses were gathered via semi-structured interviews and analysed using qualitative thematic analysis. Results: Information regarding four broad areas were analysed of emotional distress during pregnancy; experience of initial diagnosis; coping and resilience; and perspectives on a mental health intervention in pregnancy. Anxiety regarding baby’s future, guilt following diagnosis, and various coping strategies emerged as primary themes among the participant sample. Medical staff corroborated mothers’ heightened anxiety and viewed a psychotherapeutic intervention during the prenatal period as essential and complimentary to standard of care. Conclusion: We identified salient themes and preferred components for a future psychological intervention delivered prenatally. Practice Implications: Patients’ and providers’ perspectives regarding the nature of maternal distress, resilience and treatment preferences can inform the development of interventions to support the emotional well-being of pregnant women carrying a fetus with congenital heart disease to optimise care and potentially improve outcomes for fetal brain development.

Parents' experiences of receiving their child's diagnosis of congenital heart disease: A systematic review and meta‐synthesis of the qualitative literature

“…Regardless of timing, the CHD diagnosis was often accompanied by emotions of grief and sorrow, because parents lost their expected healthy child: ‘It was like mourning the pregnancy that I thought we would have… mourning the overall health of my baby boy’ (Espinosa et al., 2021, p.5). Another parent described: ‘I went through these stages of, I don't know, it almost felt like stages of grief even though nobody had died but maybe it was my perception of the ideal child did die’ (Woolf‐King et al., 2018, p.2789).…”

“…I'm very emotional in a crisis and my husband's a calm person. That's been helpful’ (Espinosa et al., 2021, p.5). Parents often emphasized the value of peer support, which seemed to offer a unique, shared understanding: ‘I met many mothers and their children who were in the same boat, with the same pain and grief… We all comforted one another’ (Lee & Ahn, 2020, p.7138).…”

Fetal Brain Development in Congenital Heart Disease

“… 62 , 63 Finally, recent data on prenatal stress suggest that behavioural approaches to reduce stress in pregnant women with fetal CHD may provide a complementary approach to improving outcomes. 64 …”

Perinatal Stressors and Consequences for Neonates with Critical Congenital Heart Disease

“…Besides the myriad of social stressors that expectant parents may be simultaneously contending with, including food insecurity, unemployment, discrimination, distance from medical care, and/or economic uncertainty, just undergoing a fetal echocardiogram has been shown to cause tremendous additive stress and anxiety [2]. That stress is only increased when the imaging confirms an abnormality [3,4]. Diagnosis of a fetal congenital heart defect leads to anxiety, depression, and traumatic stress in up to 65% of expectant parents given such a diagnosis [5][6][7].…”