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Managing chronic illness: Parents with a ventilator-dependent child

Authors
Journal
Journal of Pediatric Nursing
0882-5963
Publisher
Elsevier - WB Saunders
Publication Date

Abstract

Abstract Ventilator-dependent children are surviving longer and increasing in number. This qualitative study was undertaken to describe the impact of a ventilator-dependent child on 10 families and to describe the management styles used by the parents. In five families, the child remained hospitalized due to the disability while in the other five the child primarily lived at home. Three major themes in managing were elicited: barriers, resources, and parenting. Parents believed they should try to normalize their child's experiences, that interactions with health care professionals required negotiation and assertiveness, and that they needed some support person(s) outside of the family.

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