Choices and control: parental experiences in pediatric terminal home care

Abstract

During the past decade, palliative care at home has become an alternative option to hospital care for terminally ill children. This study describes the experience of caring for a dying child at home from a parent's perspective. A qualitative research design was used to conduct and analyze data. Nonstandardized, focused interviews were conducted with 10 families. Thematic content analysis assisted in deriving themes from the transcripts of the interviews. "Choice and control" was the major theme that linked all the other concepts, and it appeared to be fundamental to parental coping strategies. Most parents were willing to take responsibility for the nursing care of their child, including administration of intravenous medication. The patient's home was the overwhelming choice of parents for delivery of terminal care, with most parents perceiving it as their child's choice also.