Parents’ experiences of receiving an antenatal versus postnatal diagnosis of complex congenital heart disease

Abstract

Aim: To explore parents' experiences at the time of diagnosis of complex congenital heart disease (CHD) for their infant, and to compare whether experiences differ when receiving an antenatal versus postnatal diagnosis. Background: The time point at which parents receive a diagnosis of CHD has changed over the years due in part to advancements in fetal ultrasound; however, CHD still remains undiscovered until after birth in some cases. The psychological impact of time of diagnosis on parents' experiences has not been well researched. Method: Descriptive and thematic analysis of primary mixed qualitative and quantitative data, collected during 2012-2013, from an online survey of parents (n=28) of infants who had undergone stage one surgery for a functionally univentricular heart. Findings: Four themes emerged: parents' understanding of the condition, parents' feelings at the time of diagnosis, sources of support and sources of additional information. Conclusion: There are implications for practice in terms of who provides the diagnosis and more importantly how well this is explained. Professionals need to assess parents' emotional status, information needs and level of understanding irrespective of time of diagnosis, so that support is individualised, sensitive and time appropriate.

The Voice of Parents of Children With a Congenital Anomaly – A EUROlinkCAT Study

“…The research questions identified that informing parents of their child's condition, both pre-and postnatal, requires careful presentation of the diagnosis and its impact on the child's life. Studies concerning parental perspectives about being informed of an anomaly in their child have been widely studied (16)(17)(18)(19)(20) and recommendations for information strategies have been presented when a congenital anomaly is diagnosed prenatally (21) and postnatal (22). We identified that parents requested more holistic information about the diagnosis and the prognosis taking the child's abilities and future possibilities in consideration.…”

Prenatal detection and evaluation of differences of sex development: A qualitative interview study of parental perspectives and unmet needs

“…32 Prenatal diagnosis offers time for families to process and prepare for the birth of a child with a complex medical condition. [33][34][35][36] It is key, though, that this gift of time be used well, with appropriate medical evaluation, thorough prenatal counseling, and consultation with subspecialists as indicated; otherwise, prenatal diagnosis risks becoming "toxic knowledge" that only increases stress levels during pregnancy. 37 As noted, many parents recalled surprise, shock, and worry at the time of diagnosis, though on the quantitative DRS most parents indicated low levels of regret about the testing decisions they made during pregnancy.…”

“…Age in years at time of delivery, a median (range) 35 (23)(24)(25)(26)(27)(28)(29)(30)(31)(32)(33)(34)(35)(36)(37)(38)(39)(40)(41)(42) Age in years at time of interview, median (range) 37 (24-43)…”

Vigilance in the Decision-Making Process Regarding Termination of Pregnancy Following Prenatal Diagnosis of Congenital Heart Disease—Application of the ‘Conflict Decision-Making Model’

“…Previous studies reported that parents’ support groups, blogs, and websites are important sources of support for parents after receiving the diagnosis of congenital heart disease in a fetus. Medical professionals (physicians and nurses) were described as the main sources for information and reassurance [ 22 , 23 , 24 ]. Our findings can be explained by the limited time frame for recruiting participants for the study (2–4 weeks after the initial diagnosis).…”