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Published on: July 18, 2014
Parents' experiences of having a child undergoing congenital heart surgery: An emotional rollercoaster from shocking
Holly Wei1, Cecelia I Roscigno2, Kristen M Swanson3
1School of Nursing at the University of North Carolina at Chapel Hill, Carrington Hall, CB #7460, Chapel Hill, NC 27599-7460, USA.
Insights
Parents of children with congenital heart disease (CHD) experience significant emotional challenges during surgery. Key stressors include diagnosis, pre-surgery separation, and post-operative intensive care unit stays.
Area of Science:
- Pediatric Cardiology
- Child Psychology
- Surgical Patient Experience
Background:
- Congenital heart disease (CHD) affects approximately 40,000 newborns annually in the U.S.
- Limited research exists on parental experiences during a child's CHD diagnosis and subsequent heart surgery.
Purpose of the Study:
- To explore and describe the lived experiences of parents whose children underwent heart surgery for congenital heart disease.
Main Methods:
- A descriptive phenomenology approach was utilized.
- Data were collected through two in-depth interviews with 13 parents.
Main Results:
- Parents reported a significant emotional "rollercoaster" throughout the process.
- Critical emotional periods included receiving the diagnosis, the handover to the surgical team, and post-operative pediatric intensive care unit (PICU) visits.
- Major stressors included surgical outcome uncertainty, loss of control, child's altered appearance, and the ICU's technological environment.
Conclusions:
- Parental emotional fluctuations mirrored the child's clinical status and the parents' adaptation process.
- Understanding these experiences is crucial for providing effective family-centered care in pediatric cardiac surgery settings.
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.
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