1 University of Borås, Sweden.
2 Akademiska Sjukhuset, Uppsala, Sweden.
J Fam Nurs. 2019 Aug;25(3):469-492. doi: 10.1177/1074840719863916. Epub 2019 Jul 29.
Over the past few decades, there has been an increase in the number of children receiving home mechanical ventilation (HMV), and in many ways, families have taken responsibility for the required advanced homecare, which has placed considerable time demands on the family unit. Little is known about the life situation of the siblings of HMV-assisted children; their own voices and an insider perspective are missing. The aim of this study was to illuminate the everyday life experiences of siblings of HMV-assisted children. Data were obtained via interviews with 10 siblings with a median age of 9 years. Data were analyzed using a phenomenological hermeneutical method inspired by the French philosopher Ricoeur. Four themes emerged, all of which suggest that a complex and profound intertwined sibling bond develops that links the past, present, and future. The findings of this study provide valuable information from an insider's perspective about the meaning of having an HMV-assisted sibling. Family-focused care with particular attention and support for siblings of HMV-assisted children can encourage the development of internal strengths, self-confidence, and resilience.
在过去的几十年中,接受家庭机械通气(HMV)的儿童数量有所增加,在许多方面,家庭已经承担了所需的高级家庭护理的责任,这给家庭单位带来了相当大的时间需求。关于接受 HMV 辅助治疗的儿童的兄弟姐妹的生活状况,人们知之甚少;他们自己的声音和内部观点缺失。本研究的目的是阐明接受 HMV 辅助治疗的儿童的兄弟姐妹的日常生活体验。通过对 10 名年龄中位数为 9 岁的兄弟姐妹的访谈获得数据。使用受法国哲学家利科启发的现象学诠释学方法对数据进行分析。出现了四个主题,所有主题都表明,一种复杂而深刻的交织兄弟姐妹关系正在发展,将过去、现在和未来联系在一起。这项研究的结果从内部人士的角度提供了有关拥有接受 HMV 辅助治疗的兄弟姐妹的意义的有价值的信息。以家庭为中心的护理特别关注和支持接受 HMV 辅助治疗的儿童的兄弟姐妹,可以鼓励他们发展内在力量、自信和适应能力。