Saturday, January 15, 2022
Independence BR C, ML 4 (Marriott Marquis Washington, DC)
* noted as presenting author
Veterans living with Gulf War Illness (GWI) often report poor quality of life and health outcomes. Many struggle to engage with and trust in healthcare systems. An underexplored component of the experience of GWI is Institutional Betrayal; situations in which the institutions people depend upon for safety and well-being cause them harm (Smith & Freyd, 2013). This qualitative study examined how experiences with institutions influence perceptions of medical care applying the theoretical framework of institutional betrayal to narratives of U.S. military Veterans living with Gulf War Illness (GWI). A team of researchers coded transcripts of semi-structured interviews (N=100) for descriptions of institutional betrayal. Researchers applied the definition of institutional betrayal to the transcripts in the initial coding process, identifying descriptions of experiences of institutional betrayal. In the second round of coding, open and in vivo codes were identified to analyze themes and establish a theoretical framework (Saldana, 2016). 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 health care 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 non-VA 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 Veterans should consider the concept of institutional betrayal.