Petruik Courtney, Mack Cheryl, Conway Jennifer, Buchholz Holger, van Manen Michael
University of Alberta, Edmonton, Alberta, Canada.
Pediatr Transplant. 2017 Nov;21(7). doi: 10.1111/petr.13049. Epub 2017 Aug 29.
A VAD is a mechanical pump used to support the functioning of a failing heart. As a pediatric therapy, a VAD is used as a temporary solution for poor heart function, a bridge to transplantation or recovery, or a destination therapy. The goal of this qualitative study was to explore the perspectives of family and professional caregivers of children who are supported by VADs in outpatient settings. Semi-structured interviews were conducted with 22 caregivers of school-aged children discharged home on VAD support. Interviews were transcribed, and data were analyzed using qualitative content analysis. Caregivers identified issues facing children on VAD support in the contexts of home, school, and other childhood places including being physically connected to a device; experiencing changes; living a medical life; negotiating restrictions; cost of care; family, kinship, and community; and, present and future living. While a child with a VAD may have much in common with other medically complex children, the technological complications and risks of living with a VAD are uniquely identified by caregivers as an issue, especially when considering the way that children with a VAD are connected to their device-implanted yet exterior, mobile yet restricted, and autonomous yet dependent.
心室辅助装置（VAD）是一种用于支持衰竭心脏功能的机械泵。作为一种儿科治疗手段，VAD被用作心脏功能不佳的临时解决方案、移植或康复的桥梁，或一种终末期治疗方法。这项定性研究的目的是探讨在门诊环境中由VAD支持的儿童的家庭和专业护理人员的观点。对22名在VAD支持下出院回家的学龄儿童的护理人员进行了半结构化访谈。访谈内容被转录，并使用定性内容分析法对数据进行了分析。护理人员确定了在家庭、学校和其他儿童场所中接受VAD支持的儿童所面临的问题，包括与设备存在身体连接；经历变化；过着医疗化的生活；应对限制；护理费用；家庭、亲属关系和社区；以及当前和未来的生活。虽然使用VAD的儿童可能与其他患有复杂疾病的儿童有许多共同之处，但护理人员特别将使用VAD带来的技术并发症和生活风险视为一个问题，尤其是考虑到使用VAD的儿童与他们植入体内但位于体外、可移动但受到限制、自主但又依赖的设备之间的连接方式时。
