Parent’s experiences of counselling and their need for support following a prenatal diagnosis of congenital heart disease - a qualitative study in a Swedish context

Abstract

BackgroundPrenatal screening for foetal cardiac abnormalities has been increasingly practiced in Sweden during the last 25 years. A prenatal diagnosis may have medical benefits but may also cause sustained parental psychological distress. The aim of this study was to explore pregnant women’s, and their partner’s, experiences of counselling and need for support during continued pregnancy following a prenatal diagnosis of a cardiac defect. A second aim was to use this information to propose a structured follow-up programme for continued support after the first counselling.MethodDesign: Qualitative study, using interviews performed 5–9 weeks after a prenatal diagnosis of congenital heart disease.Setting: A tertiary foetal cardiology unit in SwedenSample: Six pregnant women and their 6 partners, consecutively recruited after a prenatal diagnosis of an isolated and significant cardiac defect.Data analysis: Qualitative content analysis.ResultsThe analysis resulted in three themes. 1/ Counselling and making a decision - the importance of knowledge and understanding: Short waiting time for specialist evaluation together with clear and straightforward information was essential. Parents called for written information together with a high-quality website with relevant information about congenital heart disease. 2/ Continued support during pregnancy: Continued and easy access to health care professionals, including a paediatric specialist nurse, throughout pregnancy, was important. Contact with couples with similar experiences and social media were also considered valuable sources of support. 3/ Next step – the near future: Practical and economical issues during the postnatal hospital stay and the initial period following the hospital stay were common concerns.ConclusionsThe following aspects should be considered in a structured follow up program during pregnancy after a prenatal diagnosis of CHD; written information, access to a safe web-site with information of high quality in their native language, support from parents with similar experiences and continued contact with a specialist liaison nurse with experience of paediatric cardiology.

Objective Assessment of Counselling for Fetal Heart Defects: An Interdisciplinary Multicenter Study

“…Repetitive counselling did not affect overall counselling success or any dimension positively, in contrast to previously published data [13,14]. However, we could demonstrate a trend for more counselling success for "Transfer of Medical Knowledge" after being counseled by cardiologists in one center.…”

Diagnosis of a severe congenital anomaly: A qualitative analysis of parental decision making and the implications for healthcare encounters

“…Whilst provision of additional information is frequently advocated as a solution to support complex decision making, the difficulties associated with this have also been highlighted. 18,27 These findings further support the need for a more nuanced view of informing parents-to-be due to the complexity and variability of the information-seeking process enacted. In this study, the influence of the Internet and technologybased health literacy skills were key to many parents-to-be.…”

“…“Information seeking” was a prominent mechanism employed by parents‐to‐be to overcome uncertainty. Whilst provision of additional information is frequently advocated as a solution to support complex decision making, the difficulties associated with this have also been highlighted . These findings further support the need for a more nuanced view of informing parents‐to‐be due to the complexity and variability of the information‐seeking process enacted.…”

Fetal iGRASP cine CMR assisting in prenatal diagnosis of complicated cardiac malformation with impact on delivery planning

“…Limited acoustic windows due to suboptimal fetal position, patient habitus and skeletal calcification towards term may constrain ultrasound to adequately visualize the heart and large vessels. This may result in inappropriate delivery planning and management and cause parental uncertainty and anxiety (Bratt et al, 2015). Advanced cardiac care is increasingly centralized to specialized centres.…”