The impact of prenatal counselling on mothers of surviving children with hypoplastic left heart syndrome: A qualitative interview study

Abstract

Objective To explore the role of antenatal counselling in how parents make treatment decisions following an antenatal diagnosis of Hypoplastic Left Heart Syndrome (HLHS). Background Antenatal counselling is a critical part of patient management following a diagnosis of fetal congenital heart disease; however, there is a very limited evidence base examining how parents actually experience antenatal counselling and make decisions in this context. Methods Semi‐structured interviews were conducted with women who had received an antenatal diagnosis of HLHS. Interviews were digitally recorded, anonymised and transcribed verbatim. A thematic content analysis was performed using a constant comparative approach. Results Eight mothers of surviving children with HLHS were interviewed. Eight key themes emerged including new perspectives on how women receive antenatal counselling and how it affects their decision making. Three themes in particular are new to the literature: (a) Mothers of children with HLHS reported feelings of intense guilt that arose in the antenatal period around potentially causing the condition in their child. (b) For this group of women, recollections of perceived pessimism during antenatal counselling had a lasting impact. (c) Despite support from partners or extended family, women nevertheless experienced a strong sense that antenatal decision making was largely a ‘maternal’ responsibility. Conclusions When recounting their experiences of antenatal counselling, mothers of surviving children with HLHS offer new perspectives that can guide fetal cardiologists in how best to support their individual patients. Further research is needed to comprehensively understand the experience of prospective parents counselled for severe forms of fetal congenital heart disease.

Prenatal diagnosis of congenital diaphragmatic hernia: Parental counselling and support needs

“…Again in line with our findings, parents of CHD children also expressed need for more comprehensive knowledge, preparation for postnatal‐care and the likely need for life‐long care for the child, as well as parental emotional support 51 . Comparable to our observations, additional (online) contact with peers was considered as a valuable additional source of support 51,52 …”

“…51 Comparable to our observations, additional (online) contact with peers was considered as a valuable additional source of support. 51,52 Our study clearly demonstrates the huge impact prenatal diagnosis of CDH has on parents. In line with observations made in CHD, it can be expected that this may induce mental health problems as well and we suggest this should be a reason to initiate follow-up routines for parental mental health.…”

‘We did everything we could’– a qualitative study exploring the acceptability of maternal‐fetal surgery for spina bifida to parents

“…Some parents even experienced feelings of guilt for having considered TOP. This memory remained powerful, and parents often reflected on it, both after surgery and the birth of their child, a finding also seen in mothers who have experienced severe congenital heart defect in their unborn child 29 . The parents in this study valued information and care focusing on the future from the healthcare providers, and the recognition of the fetus as a future child, similar to prenatal diagnostic trajectories of parents of children with Down syndrome 30‐32 .…”

“…This memory remained powerful, and parents often reflected on it, both after surgery and the birth of their child, a finding also seen in mothers who have experienced severe congenital heart defect in their unborn child. 29 The parents in this study valued information and care focusing on the future from the healthcare providers, and the recognition of the fetus as a future child, similar to prenatal diagnostic trajectories of parents of children with Down syndrome. [30][31][32] A perceived break in the continuity of care between treatment centre and referral centre caused additional stress to an already intense trajectory.…”

What is Known About Critical Congenital Heart Disease Diagnosis and Management Experiences from the Perspectives of Family and Healthcare Providers? A Systematic Integrative Literature Review

“…Eighteen articles gathered cross-sectional information. Recruitment often occurred at large tertiary teaching hospitals and studies were conducted in Australia [44,48], Canada [49,50], Korea [51,52], Norway [53], Sweden [54][55][56], Switzerland [57], the United Kingdom (UK) [34,45,58] and the United States of America (USA) [40-43, 46, 59, 60].…”