Posted November 9, 2020

Dr. Girija Kaimal, Drexel University
Dr. Rebekka Dieterich-Hartwell, Drexel University
Dr. Bryann DeBeer, VA Rocky Mountain Mental Illness Research and Clinical Center (MIRECC)
Dr. Beatrice Golomb, University of California, San Diego

In FY17 the DOD Gulf War Illness Research Program (GWIRP) embarked on an effort to support qualitative research studies that sought to understand the experiences, perceptions, barriers, and beliefs of Veterans suffering from Gulf War illness (GWI) and those responsible for their care through a Qualitative Research Award (QRA). The outcomes of this research will ultimately be translated into educational materials and tools to better inform Veterans, caregivers, and/or healthcare providers about GWI and its care. This effort led to one funded QRA award that year and another in FY18. 

The FY17 study, being conducted by Drs. Girija Kaimal and Rebekka Dieterich-Hartwell at Drexel University and Dr. Bryann DeBeer at the VA’s Rocky Mountain Mental Illness Research and Clinical Center (MIRECC), investigates the perceptions and experiences of Veterans with GWI regarding their physical health symptoms and quality of life, as well as the perspectives of healthcare providers who care for them. The researchers are reviewing demographics to characterize the GWI population and interviewing both healthcare providers and Gulf War Veterans to answer these questions. A diverse sample of Gulf War Veterans is being sought so that many voices will be heard. In addition to the narrative interviews, the findings will include collage portraits created by GWI Veterans to deepen awareness of their experiences. Findings from the study will inform educational materials that can be incorporated into a massive open online course (MOOC) for health care providers. The purpose of the MOOC is to reduce misconceptions about GWI and empower providers with increased knowledge about the illness to support high-quality personalized care for Veterans with GWI. 

From Dr. Kaimal, “Our aim with this, the first qualitative study of Gulf War illness funded by the DOD, is to focus on understanding the lived experiences of Veterans with GWI. By understanding and sharing their perspectives, we seek to increase awareness of this illness and the wide-ranging impact on the lives of Veterans with GWI and the care they receive.” 

The FY18 QRA, led by Dr. Beatrice Golomb’s team at the University of California at San Diego, will survey a large sample of Veterans with GWI about their perceptions of interactions with healthcare providers and how that impacts 1) their attitude toward the healthcare community, 2) adherence to recommended treatments and follow-up and 3) the Veterans’ personal support network. Veterans’ survey responses will focus on their best, worst and most recent healthcare experiences. Outcomes from the study will include a concise information sheet for Veterans to share with their providers. A provider feedback tool will be created where Veterans can assess their providers’ attitude(s) and engagement. The results could be shared with the provider and/or with the healthcare system, to give feedback and stimulate change where needed. A mini-MOOC will also be produced to further educate providers about GWI. The course will stress GWI’s relevance to related conditions and relevant exposures to broaden the interest base. The study aims to provide data to validate what has been shared qualitatively by Veterans and influence providers to make any needed changes. 

Dr. Golomb told us, “Many Veterans with GWI have shared that adverse provider attitudes – that disbelieve, dismiss or disparage suffering or imply that Veterans’ problems are all in their head or are perhaps fabricated – have been responsible for these Veterans’ greatest emotional wounds and dishonor their service. This study seeks to capture how provider attitudes and behaviors influence Veterans’ experience of care, and the provision of care itself.” 

Links:

Technical and Public Abstracts (Dr. Kaimal): Veterans With Gulf War Illness: Understanding the Spectrum of Experiences Related to Aging and Demographics

Technical and Public Abstracts (Dr. Golomb): Impact of Physician Attitudes on Health Care in Veterans with Gulf War Illness

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