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Home care for the dying child. A parent's perception
J J Collins1, M M Stevens, P Cousens
1Oncology Unit, Royal Alexandra Hospital for Children, Camperdown, New South Wales.
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.