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关爱我们受伤的战士:对军事相关创伤性脑损伤患者照料者健康相关生活质量的质性研究

Caring for our wounded warriors: A qualitative examination of health-related quality of life in caregivers of individuals with military-related traumatic brain injury.

作者信息

Carlozzi Noelle E, Brickell Tracey A, French Louis M, Sander Angelle, Kratz Anna L, Tulsky David S, Chiaravalloti Nancy D, Hahn Elizabeth A, Kallen Michael, Austin Amy M, Miner Jennifer A, Lange Rael T

机构信息

Department of Physical Medicine and Rehabilitation, University of Michigan Medical School, Ann Arbor, MI.

Defense and Veterans Brain Injury Center and Walter Reed National Military Medical Center, Bethesda, MD.

出版信息

J Rehabil Res Dev. 2016;53(6):669-680. doi: 10.1682/JRRD.2015.07.0136.

Abstract

The purpose of this study was to develop a conceptual framework that captures aspects of health-related quality of life (HRQOL) for caregivers of individuals with military-related traumatic brain injury (TBI). We analyzed qualitative data from nine focus groups composed of caregivers of wounded warriors with a medically documented TBI. Focus group participants were recruited through hospital-based and/or community outreach efforts at the Walter Reed National Military Medical Center, the University of Michigan, and Hearts of Valor support groups (Tennessee and Washington). Participants were the caregivers (n = 45) of wounded warriors who had sustained a mild, moderate, severe, or penetrating TBI. Qualitative frequency analysis indicated that caregivers most frequently discussed social health (44% of comments), followed by emotional (40%) and physical health (12%). Areas of discussion that were specific to this population included anger regarding barriers to health services (for caregivers and servicemembers), emotional suppression (putting on a brave face for others even when things are not going well), and hypervigilance (controlling one's behavior/environment to prevent upsetting the servicemember). Caring for wounded warriors with TBI is a complex experience that positively and negatively affects HRQOL. While some aspects of HRQOL can be evaluated with existing measures, evaluation tools for other important components do not exist. The development of military-specific measures would help facilitate better care for these individuals.

摘要

本研究的目的是建立一个概念框架,以捕捉与军事相关的创伤性脑损伤(TBI)患者的照顾者的健康相关生活质量(HRQOL)的各个方面。我们分析了来自九个焦点小组的定性数据,这些焦点小组由有医学记录的TBI受伤战士的照顾者组成。焦点小组参与者是通过沃尔特·里德国家军事医疗中心、密歇根大学和英勇之心支持小组(田纳西州和华盛顿州)的医院和/或社区外展工作招募的。参与者是遭受轻度、中度、重度或穿透性TBI的受伤战士的照顾者(n = 45)。定性频率分析表明,照顾者最常讨论的是社会健康(评论的44%),其次是情绪(40%)和身体健康(12%)。针对这一人群的特定讨论领域包括对医疗服务障碍的愤怒(针对照顾者和军人)、情绪压抑(即使情况不佳也为他人摆出勇敢的面孔)和过度警觉(控制自己的行为/环境以防止让军人不安)。照顾患有TBI的受伤战士是一种复杂的经历,对HRQOL有积极和消极的影响。虽然HRQOL的某些方面可以用现有措施进行评估,但其他重要组成部分的评估工具并不存在。开发针对军事的措施将有助于为这些人提供更好的护理。

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