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

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).

An Official American Thoracic Society Clinical Practice Guideline: Pediatric Chronic Home Invasive Ventilation.

BACKGROUND: Children with chronic invasive ventilator dependence living at home are a diverse group of children with special health care needs. Medical oversight, equipment management, and community resources vary widely. There are no clinical practice guidelines available to health care professionals for the safe hospital discharge and home management of these complex children. PURPOSE: To develop evidence-based clinical practice guidelines for the hospital discharge and home/community management of children requiring chronic invasive ventilation. METHODS: The Pediatric Assembly of the American Thoracic Society assembled an interdisciplinary workgroup with expertise in the care of children requiring chronic invasive ventilation. The experts developed four questions of clinical importance and used an evidence-based strategy to identify relevant medical evidence. Grading of Recommendations Assessment, Development, and Evaluation (GRADE) methodology was used to formulate and grade recommendations. RESULTS: Clinical practice recommendations for the management of children with chronic ventilator dependence at home are provided, and the evidence supporting each recommendation is discussed. CONCLUSIONS: Collaborative generalist and subspecialist comanagement is the Medical Home model most likely to be successful for the care of children requiring chronic invasive ventilation. Standardized hospital discharge criteria are suggested. An awake, trained caregiver should be present at all times, and at least two family caregivers should be trained specifically for the child's care. Standardized equipment for monitoring, emergency preparedness, and airway clearance are outlined. The recommendations presented are based on the current evidence and expert opinion and will require an update as new evidence and/or technologies become available.

The relationship between home nursing coverage, sleep, and daytime functioning in parents of ventilator-assisted children.

This descriptive study examined the relationship between home-care nursing support, sleep, and daytime functioning in familial caregivers of ventilator-assisted children. Thirty-six primary caregivers (27 mothers, 7 fathers, 1 foster mother, and 1 grandmother) of ventilator-assisted children completed measures of home nursing support, sleep, depression, fatigue, and daytime sleepiness. Daytime nursing coverage was not related to caregiver sleep or daytime functioning, but caregivers with less nighttime nursing coverage had significantly shorter sleep onset latency than caregivers with some night nursing (16-48 hours/week). Caregivers with regular night nursing (>48 hours/week) had a total sleep time of almost 1 hour more than caregivers without regular night nursing (

A multidisciplinary approach to the care of the ventilator-dependent child at home: a case study.

An estimated 4,300 children in the United States are managed at home on mechanical ventilation. Despite frequent overwhelming challenges, most families are able to maintain a safe and enriching life for the child if they are supported in the home by a multidisciplinary professional team. The Pennsylvania Ventilator Assisted Children's Home Program (VACHP) is a statewide program that coordinates the care of children at home on mechanical ventilation and advocates for the support of families in the community. In this case study, VACHP illustrates the importance of a multidisciplinary approach to care in order to ensure a safe and successful home management of children on mechanical ventilation.