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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 in the home, were audiotaped, and transcribed for analysis. Initial interviews (8 parents) were unstructured with trigger questions; second interviews (5 parents) clarified …
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