Pediatric heart disease is a leading cause of mortality in children in the US. Pediatric cardiac transplantation (PCT) has been offered for two decades to prolong the lives, often into adulthood, of thousands of children with end stage heart disease. Previous research has focused primarily on survival, functional status and medical morbidity. Few studies have interviewed the children about their lives or assessed their quality of life (QOL). This is especially important since PCT recipients are surviving for many years with chronic illness related to transplantation and side effects of potent medications. Therefore, it is vital to examine QOL issues in PCT recipients to provide the best possible chance for a full, productive life.
The specific aims of this study are to: 1) describe the child's and parents perceptions of the child's QOL post PCT including key elements that may impact the child's QOL and 2) compare the child's and parent's views of the child's QOL post PCT. Focused ethnography will be used to elicit the subjective perceived experience of participants. Twelve to fifteen parent-child dyads will be recruited from the Arkansas Children's Hospital PCT Clinic. Demographic data will be collected in the clinic followed by separate, semi-structured interviews of the child and parent in the family's home. Follow-up interviews will occur in a quiet, private location in the Clinic. Data will be analyzed using constant comparison. Analysis will yield child and parent descriptions of the child's QOL, description of the factors they believe are important to the child's QOL, and provide the basis for comparing the child's and parent's perspectives. This study will provide the foundation for future research in QOL in PCT, the development of instruments to measure QOL for PCT recipients, and the eventual development of tailored interventions to maximize QOL in this vulnerable, high-risk group.
| Green, Angela; Meaux, Julie; Huett, Amy et al. (2009) Constantly responsible, constantly worried, constantly blessed: parenting after pediatric heart transplant. Prog Transplant 19:122-7 |
| Green, Angela L; McSweeney, Jean; Ainley, Kathy et al. (2009) Comparing parents' and children's views of children's quality of life after heart transplant. J Spec Pediatr Nurs 14:49-58 |
| Green, Angela; McSweeney, Jean; Ainley, Kathy et al. (2007) In my shoes: children's quality of life after heart transplantation. Prog Transplant 17:199-207;quiz 208 |
