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本文引用的文献

1
Traumatic brain injury caregivers: A qualitative analysis of spouse and parent perspectives on quality of life.创伤性脑损伤患者的照料者:配偶和父母对生活质量看法的定性分析
Neuropsychol Rehabil. 2017 Jan;27(1):16-37. doi: 10.1080/09602011.2015.1051056. Epub 2015 Jun 8.
2
The Importance of Understanding Military Culture.理解军事文化的重要性。
Acad Psychiatry. 2015 Aug;39(4):416-8. doi: 10.1007/s40596-015-0285-1. Epub 2015 Feb 18.
3
Health-related quality of life in caregivers of individuals with traumatic brain injury: development of a conceptual model.创伤性脑损伤患者照顾者的健康相关生活质量:概念模型的构建
Arch Phys Med Rehabil. 2015 Jan;96(1):105-13. doi: 10.1016/j.apmr.2014.08.021. Epub 2014 Sep 17.
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A comparison of health outcomes for combat amputee and limb salvage patients injured in Iraq and Afghanistan wars.对在伊拉克和阿富汗战争中受伤的战斗性截肢和保肢患者的健康结果进行比较。
J Trauma Acute Care Surg. 2013 Aug;75(2 Suppl 2):S247-54. doi: 10.1097/TA.0b013e318299d95e.
5
Impact of blood pressure dysregulation on health-related quality of life in persons with spinal cord injury: development of a conceptual model.血压调节障碍对脊髓损伤患者健康相关生活质量的影响:概念模型的建立。
Arch Phys Med Rehabil. 2013 Sep;94(9):1721-30. doi: 10.1016/j.apmr.2013.02.024. Epub 2013 Mar 14.
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2003-2009 marital functioning trends among U.S. enlisted soldiers following combat deployments.2003年至2009年美国士兵战斗部署后的婚姻功能趋势
Mil Med. 2012 Oct;177(10):1169-77. doi: 10.7205/milmed-d-12-00164.
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Identification of health-related quality of life (HRQOL) issues relevant to individuals with Huntington disease.鉴定与亨廷顿病患者相关的健康相关生活质量(HRQOL)问题。
J Health Psychol. 2013 Feb;18(2):212-25. doi: 10.1177/1359105312438109. Epub 2012 Mar 16.
8
High prevalence of chronic pituitary and target-organ hormone abnormalities after blast-related mild traumatic brain injury.爆炸相关轻度创伤性脑损伤后慢性垂体及靶器官激素异常的高患病率。
Front Neurol. 2012 Feb 7;3:11. doi: 10.3389/fneur.2012.00011. eCollection 2012.
9
Traumatic brain injury patient-reported outcome measure: identification of health-related quality-of-life issues relevant to individuals with traumatic brain injury.创伤性脑损伤患者报告结局测量:确定与创伤性脑损伤患者相关的健康相关生活质量问题。
Arch Phys Med Rehabil. 2011 Oct;92(10 Suppl):S52-60. doi: 10.1016/j.apmr.2010.12.046.
10
The invisible side of war: families caring for US service members with traumatic brain injuries and polytrauma.战争的无形一面:照顾患有创伤性脑损伤和多发性创伤的美国军人的家庭。
J Head Trauma Rehabil. 2012 Jan-Feb;27(1):3-13. doi: 10.1097/HTR.0b013e3182274260.

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.

DOI:10.1682/JRRD.2015.07.0136
PMID:27997672
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5180206/
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。