Home care for the dying child. A parent's perception.

OBJECTIVES: To identify the benefits and difficulties of families caring for a dying child at home and to assess the parents' adjustment following their child's death.
METHOD: Semi-structured interview and questionnaire.
RESULTS: The benefits of home versus hospital care included greater freedom, more privacy and less disruption to family life, and that caring for the child was a positive experience for most families. Despite this experience many families expressed many fears and concerns about the symptomatic care of their children and requested more support. DISCUSSION: Hospital-based treatment teams have a responsibility to ensure adequate support can be provided before home care is recommended for dying children. The experience of home-based palliative care reported by these parents and their suggestions for change will assist all who care for dying children and to improve services supporting home-based palliative care.