Constantly responsible, constantly worried, constantly blessed: parenting after pediatric heart transplant

Abstract

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.With advances in health care, children with heart disease who require heart transplantation now live to adulthood.Although transplantation prolongs life, it is palliative, not curative, and brings with it a whole new set of responsibilities for parents caring for their children.Unfortunately, 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 caring for that child.After transplant, parents face many complicated short-term and long-term challenges.Most posttransplant care is now provided at home, which leaves most of the responsibility for care with the parents.The responsibility for medical care, parents' concerns about complications, and the normal tasks and concerns associated with raising a child can combine to place a great deal of stress on parents.