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Parents experienced cycles of defining and managing adversity in caring for a child with a chronic progressive illness

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Objective

To describe parents' day to day experiences as they manage their child's chronic, life threatening, progressive illness.

Design

Phenomenology.

Setting

Community study in British Columbia, Canada.

Participants

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.

Methods

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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