Boroughs Deborah S
Special Program Development, BAYADA Home Health Care Pediatric Specialty Practice, 5 Terri Lane, Suite 11, Burlington, NJ 08016, USA.
Children (Basel). 2017 Apr 29;4(5):33. doi: 10.3390/children4050033.
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).
直到25年前，儿童长期机械通气的选择还很有限，大多数儿童在医院接受护理。然而，随着技术的进步，儿科重症监护病房已从医院转移到家庭环境中，因为医疗需求日益复杂的儿童现在常常由家庭成员照顾。最复杂的护理情况之一涉及呼吸机和气管造口术支持。增强自然呼吸功能的先进呼吸技术延长了呼吸功能不全儿童的生命；然而，这种护理往往伴随着严重风险，包括呼吸肌损伤、呼吸衰竭和慢性肺病。在许多情况下，无创辅助通气和通过气管造口术进行的辅助通气都可以延长患者存活至成年；然而，在家中进行机械通气是一项高风险的干预措施。随着时间的推移，护理的复杂性不断增加，这就需要由专业护理人员提供并支持对家庭护理人员进行持续的技能培训；然而，医院之外很少有提供额外培训的机会。最近的数据证实，反复的护理人员教育对于成年学习者记忆和技能的保持至关重要。本研究分析了社区中针对被诊断患有脊髓性肌萎缩症（SMA）的呼吸机依赖儿童的家庭护理人员开展继续教育和培训的情况。
