The Experiences and Care Needs of Parents whose Children are Born with Congenital Heart Disease Public Deposited

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  • March 19, 2019
  • Wei, Holly
    • Affiliation: School of Nursing
  • Congenital heart disease (CHD) is the most prevalent birth defect in the United States. Little research was found regarding parents’ experiences of having a child with CHD and their desires for providers’ actions in healthcare environments. The purposes of this dissertation were to synthesize research regarding the experiences of families of children with CHD; phenomenologically describe parents’ experiences of having a child with CHD; and explain parents’ perspectives on healthcare providers’ actions during their encounters. To achieve these purposes, four separate, but related, papers were written. They were: 1) a literature review synthesizing families’ experiences of having a child with CHD; 2) a methods paper detailing steps of conducting a phenomenological study; 3) a phenomenological study exploring parents’ experiences of having a child with CHD; and 4) a directed content analysis evaluating parents’ perceptions of healthcare providers’ actions guided by the Swanson’s Caring Theory. Four major foci were addressed in the published research on families of children with CHD in the last 15 years. The foci were: parents’ psychological health, impact on family life, parenting challenges, and family-focused interventions. The methods paper described the philosophy of phenomenology and strategies of choosing sample size, interviewing, and analyzing data using an interdisciplinary team. Examples were provided about the contribution of an interdisciplinary team to enhance the quality of a phenomenological research project. Parents experienced a “rollercoaster” of emotions as their child underwent surgery. Critical times were when parents received their child’s diagnosis, were informed that their child required heart surgery, handed their child over to the surgical team, and visited their child for the first time after surgery. Related stressors were the uncertainty of outcomes after surgery, the loss of parental control, the physical appearance of their child after surgery, and the fear of the technological atmosphere in the intensive care unit. Parents’ experiences moved from shocking to blessing. The five caring processes of the Swanson’s Caring Theory captured parents’ perspectives on providers’ actions. Providers’ caring actions carried parents through their critical times. This study suggested that future research was warranted to better understand how providers could best meet these parents’ caring needs.
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Rights statement
  • In Copyright
  • Roscigno, Cecelia
  • Hanson, Cherissa
  • Swanson, Kristen
  • Hudson-Barr, Diane
  • Black, Beth
  • Doctor of Philosophy
Degree granting institution
  • University of North Carolina at Chapel Hill Graduate School
Graduation year
  • 2015
Place of publication
  • Chapel Hill, NC
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