Journal
NEUROMUSCULAR DISORDERS
Volume 18, Issue 12, Pages 983-988Publisher
PERGAMON-ELSEVIER SCIENCE LTD
DOI: 10.1016/j.nmd.2008.09.001
Keywords
Child; Neuromuscular disease; Parent experience; Home mechanical ventilation; Phenomenology; Family-centered care
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Funding
- Alberta Children's Hospital Foundation
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We describe the experience of parents caring for children with neuromuscular disease (NMD) on home mechanical ventilation (HMV). Data was obtained from semi-structured interviews and analyzed using a phenomenological framework. Fifteen families including 19 parents of children with DMD (n = 3), SMA (n = 5). and other NMD (it = 7) participated. The central theme of these parents' experience was being the lifeline for their child's life and quality of life. The families' lives changed significantly with the decision to place their child on HMV: over time, these changes became part of their new normal. Despite becoming expert caregivers, the parents experienced a recurrent sense of loss and uncertainty. Those who perceived insufficient support felt the weight of responsibility as sole care providers for their child with NMD. Beyond recognizing the parents as experts, more Support by health care professionals, their extended family, and their community are needed to enable parents to fulfill their vital role. (C) 2008 Elsevier B.V. All rights reserved.
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