Journal
SOCIAL SCIENCE & MEDICINE
Volume 284, Issue -, Pages -Publisher
PERGAMON-ELSEVIER SCIENCE LTD
DOI: 10.1016/j.socscimed.2021.114211
Keywords
Veterans; Gulf war illness; Medically unexplained symptoms; Contested illness; Qualitative research; Institutional betrayal
Funding
- Merit Review Award from the United States (U.S.) Department of Veterans Affairs Clinical Sciences Research and Development [I01CX001053]
- Career Development Award from VA Health Services Research and Development Program [IK2HX001369]
- VA Office of Academic Affiliations Advanced Fellowship Program in Health Services Research
- Center for Healthcare Organization and Implementation Research (CHOIR)
- VA Bedford Healthcare System
- Center for Innovations in Quality, Effectiveness and Safety in the Michael E. DeBakey (VHA Medical Center, Houston, Texas) [VA HSRD CIN 13-413]
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People living with medically unexplained symptoms (MUS) often have poor quality of life and health outcomes, struggling to trust in healthcare systems. Experiences of institutional betrayal may shape perceptions of medical care. Future research and policy should consider the concept of institutional betrayal to improve healthcare for people living with MUS.
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.
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