ABSTRACT
OBJECTIVES: To describe parents' experiences when their child with congenital heart disease (CHD) underwent heart surgery. BACKGROUND: About 40,000 children are born with CHD in the United States each year. Very few studies have explored parents' experiences when their child was diagnosed with CHD and underwent heart surgery. METHODS: Descriptive phenomenology informed this study that consisted of two interviews with 13 parents. RESULTS: Parents experienced a "rollercoaster" of emotions. Critical times were when parents received their child's diagnosis, handed their child over to the surgical team, and visited their child in the pediatric intensive care unit after surgery. Related stressors were the uncertainty of outcomes after surgery, the loss of parental control, the physical appearance of their child, and the fear of the technological atmosphere in the intensive care unit. CONCLUSIONS: The ups and downs of parents' emotions reflected their child's changing condition and parents' adjustment to the condition.
Subject(s)
Emotions , Heart Defects, Congenital/surgery , Parents/psychology , Adult , Child , Fear , Female , Humans , Intensive Care Units, Pediatric , Male , Middle Aged , Uncertainty , United States , Young AdultABSTRACT
In 2000 and 2002, the National Heart, Lung, and Blood Institute launched two initiatives to encourage treatment innovations and research on children with heart disease and their families. Since then, no systematic reviews have examined the evidence regarding the impacts of having a child with congenital heart disease (CHD) on families. This review synthesized key findings regarding families of children with CHD, critiqued research methods, described what has been done, and provided recommendations for future inquiry. Databases searched included PubMed, CINAHL, Family & Society Studies Worldwide, Women's Studies International, and PsycINFO. The literature search followed the PRISMA guidelines. As a result, ninety-four articles were reviewed. Four major themes were derived: parents' psychological health, family life, parenting challenges, and family-focused interventions. In conclusion, while they found parents having psychological symptoms, researchers did not explore parents' appraisals of what led to their symptoms. Research is needed to explore parents' experiences and expectations.
