Background Parents of children with congenital heart disease (CHD) experience significant parenting and personal stress. This can have profound effects on family functioning as well as a large influence on the patient’s health and overall outcomes. Most studies investigating parental stress in CHD have focused on the child’s illness and have not comprehensively evaluated the broader parental experience and coping mechanisms. Specifically, there have been no studies investigating parental resiliency and factors that positively and negatively impact their ability to cope with the stressors related to caring for their child with CHD. Methods Mothers and partners were recruited to complete a survey using a secure online platform or an in-person paper copy after a diagnosis of CHD was made by fetal echocardiogram during a routine Prenatal Clinic visit. The survey included measures to assess resilience resources (Connor-Davidson Resilience Scale), social supports (Social Support Survey from the Medical Outcomes Study), family functioning (Family Adaptability and Cohesion Scale), as well as health related behaviors and perceived communication with the medical team. The survey was based on previously published work in the pediatric cancer population. Survey responses were compared to previously published population norms for each individual measure (Rosenberg et al, 2014). Results Twenty-five parents consented to participate and 19 completed survey materials (mean gestation 32 ± 4.1 weeks; range 25-38 weeks). Table 1 provides demographic characteristics of survey respondents. Prenatal diagnoses included coarctation of the aorta, dextro-transposition of the great arteries and hypoplastic left heart syndrome. Compared to population norms, parents with a fetal diagnosis of CHD had similar resilience resources but higher levels of psychological distress (p <0.001). Despite this, they reported higher levels of social support compared to the general population (p <0.001) and had similar levels of family adaptability and cohesion. Conclusion Parents of children with prenatally diagnosed CHD are at risk for higher psychological distress compared to the general population. This may be modified by enhanced resilience resources and social supports. Further research is necessary to evaluate how these characteristics change over time and the effects on short- and long-term postnatal outcomes.
Resiliency in Families Affected by Prenatal Diagnosis of Congenital Heart Disease
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Elizabeth Caris, Lani Wolfe, Kiana Siefkas, Bailey Brinks, Bhawna Arya; Resiliency in Families Affected by Prenatal Diagnosis of Congenital Heart Disease. Pediatrics March 2021; 147 (3_MeetingAbstract): 364–365. 10.1542/peds.147.3MA4.364
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