Parents’ Perspective on the Hybrid Approach

  • Sharon L. CheathamEmail author


The diagnosis of HLHS can be devastating for parents, whether diagnosed prenatally or after birth. The parents’ perspective on the hybrid approach to managing infants with HLHS, and the psychosocial impact, have not been well reported. Parents need and expect honesty, empathy, and compassion during delivery of the diagnosis and therapeutic options. The information needs to be presented in layman’s terms, avoiding too much clinical jargon and utilizing pictures to help provide a clear understanding of the severity of the disease and surgical options. During the interstage period, parents are faced with other stressors before undergoing Comprehensive Stage II. Parents are fearful of their child not surviving and, if they do, what will the neurodevelopmental outcomes be for their future. Health-care providers need to better support patients and families from the initial diagnosis, whether a fetal or postnatal diagnosis. All options need to be explained to parents free of bias. Every single-ventricle patient should be enrolled in a home monitoring program with 24/7 availability and access to support from the single-ventricle cardiac team, as this is a stressful time for families. Every family needs psychosocial support and counseling. The financial burden alone warrants assistance due to frequent evaluations, echocardiograms, hospital admissions, cardiac surgeries, and interventional cardiac catheterization procedures. Family financial resources are often exhausted throughout early childhood for financial burdens do not end with the third-staged surgery. Care providers need to continue to evaluate neurodevelopment throughout childhood, providing interventions and support for patients, for the best possible outcomes.


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Copyright information

© Springer International Publishing Switzerland 2016

Authors and Affiliations

  1. 1.The Heart Center, Nationwide Children’s HospitalColumbusUSA

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