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To describe parents' day to day experiences as they manage their child's chronic, life threatening, progressive illness.
Community study in British Columbia, Canada.
11 parents (5 mothers and 3 couples; 1 mother divorced, all others married) of 8 children volunteered through the Muscular Dystrophy Association of Canada and 2 community health departments. Children were 2.2–16 years old; lived at home; and had Duchenne's muscular dystrophy, spinal muscular atrophy type II, metachromatic leucodystrophy, Rett's syndrome, or cerebral palsy with microcephaly and respiratory distress. The children were not in the terminal phase of illness, but required specialised and time consuming care.
Parent interviews occurred …
Source of funding: not stated.
For article reprint: Ms A M Gravelle, Cystic Fibrosis Programme, Room 2C66, British Columbia's Childrens Hospital, 4480 Oak Street, Vancouver, British Columbia V6H 3V4, Canada. Fax +1 604 875 2349.