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Children 2017, 4(5), 33; doi:10.3390/children4050033

An Evaluation of a Continuing Education Program for Family Caregivers of Ventilator-Dependent Children with Spinal Muscular Atrophy (SMA)

Special Program Development, BAYADA Home Health Care Pediatric Specialty Practice, 5 Terri Lane, Suite 11, Burlington, NJ 08016, USA
Academic Editor: David Hall
Received: 27 February 2017 / Revised: 24 April 2017 / Accepted: 25 April 2017 / Published: 29 April 2017
(This article belongs to the Special Issue Children with Complex Health Care Needs)
View Full-Text   |   Download PDF [163 KB, uploaded 29 April 2017]

Abstract

Until 25 years ago, there were limited options for long-term mechanical ventilation of children, and the majority of children were cared for in hospitals. However, with improving technology, the pediatric intensive care unit has moved from the hospital to a home setting, as children with increasingly complex healthcare needs are now often cared for by family members. One of the most complex care conditions involves ventilator and tracheostomy support. Advanced respiratory technologies that augment natural respiratory function prolong the lives of children with respiratory compromise; however, this care often comes with serious risks, including respiratory muscle impairment, respiratory failure, and chronic pulmonary disease. Both non-invasive assisted ventilation and assisted ventilation via tracheostomy can prolong survival into adulthood in many cases; however, mechanical ventilation in the home is a high-stakes, high risk intervention. Increasing complexity of care over time requires perpetual skill training of family caregivers that is delivered and supported by professional caregivers; yet, opportunities for additional training outside of the hospital rarely exist. Recent data has confirmed that repetitive caregiver education is essential for retention of memory and skills in adult learners. This study analyzes the use of continued education and training in the community for family caregivers of ventilator-dependent children diagnosed with spinal muscular atrophy (SMA). View Full-Text
Keywords: pediatric ventilator dependence; spinal muscular atrophy; medically-complex children; complex home care; family caregivers pediatric ventilator dependence; spinal muscular atrophy; medically-complex children; complex home care; family caregivers
This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. (CC BY 4.0).

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Boroughs, D.S. An Evaluation of a Continuing Education Program for Family Caregivers of Ventilator-Dependent Children with Spinal Muscular Atrophy (SMA). Children 2017, 4, 33.

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