Walking a tightrope: Living with your child\u27s congenital heart disease

Having a child with congenital heart disease requires parents\u27 to face the chronic nature of their child\u27s disease process, the high technological environment of the pediatric cardiac intensive care unit and the uncertainty of the child\u27s future. The purpose of this study was to describe what it was like for a parent of a child with CHD to experience the critical illness of their child. The sample included 37 participants (28 mothers, 9 fathers) ranging in age from 24 to 43 years. Interviews were conducted using a semi-structured format. The grounded theory method was used to simultaneously collect and analyze the data using the constant comparison method.The findings of the study demonstrated that the experience of being a parent whose child has a both a chronic and a critical illness is a process that involves complex emotions and behaviors. The process that was identified began when the child was diagnosed with CHD, progressed through the PICU hospitalization and concluded with adaptation to home. The core category that emerged from the data was, Walking a Tightrope: Living with Your Child\u27s Congenital Heart Disease. The theme that runs through the entire process was one of balancing forces and trying to find the positive in the face of threats to the child\u27s life. Five major categories and twenty-one subcategories derived from the data represent the emotions, behaviors and experiences of the parents. Parents also identified things that helped and hindered their ability to cope with their child\u27s illness.The information obtained in this study provides insight into the process that parents experience from diagnosis, through a critical care hospitalization to the personal growth that the parents reported as a consequence of their experiences. The substantive theory that emerged can be used to promote a better understanding of the parents\u27 experiences and to design interventions to enhance the support provided to parents. Further research is needed to include parents from more diverse ethnic backgrounds as well as those whose children died as a result of their illness