"Because the country, it seems though, has turned their back on me": Experiences of institutional betrayal among veterans living with Gulf War Illness
"Because the country, it seems though, has turned their back on me": Experiences of institutional betrayal among veterans living with Gulf War Illness
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DOI：
10.1016/j.socscimed.2021.114211
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发表时间：
2021-07-13
影响因子：
5.4
通讯作者：
McAndrew, Lisa M.
中科院分区：
文献类型：
--
作者：
Bloeser, Katharine;McCarron, Kelly K.;McAndrew, Lisa M.
患有医学上无法解释的症状（MUS）的人通常生活质量和健康状况较差。许多人努力参与和信任医疗保健系统。这项定性研究探讨了如何与机构的经验影响医疗保健的MUS的应用制度背叛的理论框架的叙述美国退伍军人生活与海湾战争疾病（GWI）的看法。制度背叛指的是人们赖以获得安全和福祉的制度对他们造成伤害的情况。无论是在服现役期间，还是在首次寻求治疗时，机构背叛的经历似乎都塑造了这一样本中的医疗保健观念。退伍军人表示，军方未能保护他们免受环境暴露。退伍军人对后续医疗保健质量的担忧本质上与这样一种信念有关：尽管官方文件与此相反，但美国国防部和美国退伍军人事务部（VA）的主要范式是GWI不存在。退伍军人报告说，提供者没有得到足够的培训，治疗GWI，不相信退伍军人的描述，他们的疾病。退伍军人报告说，他们进行自我宣传，对自己的病情进行研究，并辞职以减少与VA医疗保健的接触或寻求非VA护理。这项研究的结果表明，机构层面的因素有一个深刻的影响，对护理的看法和病人与提供者的关系。未来旨在改善MUS患者医疗保健的研究和政策应考虑机构背叛的概念。
People living with medically unexplained symptoms (MUS) often have poor quality of life and health outcomes. Many struggle to engage with and trust in healthcare systems. This qualitative study examined how experiences with institutions influence perceptions of medical care for MUS by applying the theoretical framework of institutional betrayal to narratives of U.S. military Veterans living with Gulf War Illness (GWI). Institutional betrayal refers to situations in which the institutions people depend upon for safety and well-being cause them harm. Experiences of institutional betrayal both during active military service and when first seeking treatment appeared to shape perceptions of healthcare in this sample. Veterans expressed the belief that the military failed to protect them from environmental exposures. Veterans' concerns regarding subsequent quality of healthcare were intrinsically linked to a belief that, despite official documentation to the contrary, the predominant paradigm of both the U.S. Department of Defense and the U.S. Department of Veterans Affairs (VA) is that GWI does not exist. Veterans reported that providers are not adequately trained on treatment of GWI and do not believe Veterans' descriptions of their illness. Veterans reported taking up self-advocacy, doing their own research on their condition, and resigning themselves to decrease engagement with VA healthcare or seek nonVA care. The study's findings suggest institutional level factors have a profound impact on perceptions of care and the patient-provider relationship. Future research and policy aimed at improving healthcare for people living with MUS should consider the concept of institutional betrayal.