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

https://doi.org/10.1136/ebn.1.1.28

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    Gravelle AM. Caring for a child with a progressive illness during the complex chronic phase: parents' experience of facing adversity. J Adv Nurs 1997 Apr; 25 : 738 –45. OpenUrlCrossRefPubMedWeb of Science

    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 …

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    Footnotes

    • 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.