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Life threatening illness and hospice care.

A Stein1, G C Forrest, H Woolley

  • 1Department of Psychiatry, University of Oxford, Warneford Hospital.

Archives of Disease in Childhood
|May 1, 1989
PubMed
Summary

This study on a UK children's hospice found most families felt well-supported, but unmet needs and significant psychological distress persisted. Chronic illness impacts families substantially, requiring ongoing support beyond symptom management.

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Area of Science:

  • Pediatric Palliative Care
  • Family Support Services
  • Childhood Illness Impact

Background:

  • Children's hospices provide specialized care for terminally ill children.
  • Understanding family perceptions and the holistic impact of chronic illness is crucial.

Purpose of the Study:

  • To evaluate family perceptions of care at the UK's first children's hospice.
  • To assess the psychological and practical impact of chronic, life-threatening illness on families.

Main Methods:

  • Retrospective study design.
  • Involved 25 families and 26 children from a UK children's hospice.
  • Examined family-reported experiences and needs.

Main Results:

  • 72% of families reported feeling well-supported and valued the hospice atmosphere.
  • Significant psychological distress was observed in parents, children, and siblings.
  • Unmet needs included childcare, and financial/employment difficulties were common.

Conclusions:

  • Hospice care is largely perceived positively, but specific needs require attention.
  • Chronic life-threatening illness has a profound, wide-ranging impact on the entire family unit.
  • Further support services addressing practical and psychological needs are essential for families.

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