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


METHODS
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.


CONCLUSIONS
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.
Oncology Unit, Royal Alexandra Hospital for Children, Camperdown, New South Wales.
J J
JJ
Collins
M M
MM
Stevens
P
P
Cousens
D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D003657:Decision Making; D005260:Female; D006701:Home Nursing / Q000523:psychology / Q000706:statistics & numerical data; D006801:Humans; D007223:Infant; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000150:complications / Q000451:nursing*; D009517:New South Wales; D010146:Pain / Q000188:drug therapy / Q000209:etiology; D010166:Palliative Care / Q000523:psychology / Q000706:statistics & numerical data; D012944:Social Support