Context
Very little research has focused on the long-term caregiving demands associated with parenting a child after a transplant or on the parents’ perceptions of those demands.
Purpose
To describe parents’ experiences parenting a school-aged child after heart transplant.
Design
Focused ethnography.
Participants and Setting
Eleven parents of children who had undergone heart transplant 2 or more years before the study were recruited from a large children's hospital.
Data Collection and Analysis
Parents were interviewed in a private location of their choice. Verbatim interview transcripts were analyzed by using content analysis and constant comparison.
Results
The parents described their experiences in positive terms, yet acknowledged hardships. Key themes included (1) constantly responsible, (2) constantly worried, (3) constantly blessed, and (4) coping with life. The identified themes provide direction for interventions to help parents cope with the experience of parenting a child after heart transplant.
Participants described life after transplant by saying, "It has its ups and downs". Major themes included these: (1) I am normal and I am not normal, (2) I am grateful and I am resentful, and (3) I am managing and I am not managing. The themes reflect the dichotomous nature of the adolescents' experiences and provide insight into the complex needs of adolescents after heart transplant.
The incidence of pneumococcal bacteremia in cardiac transplant patients is higher than in the general pediatric population. Risks for infection were being African-American, being younger than 2 years at the time of transplant and being transplanted because of idiopathic cardiomyopathy. It is plausible that pneumococcal vaccine would decrease this risk.
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