Many Veterans who served in the 1990-1991 Gulf War developed chronic symptoms that could not be explained by established medical diagnoses or standard laboratory tests. These included physical symptoms like widespread pain, muscle aches, headaches, persistent problems with memory and thinking, fatigue, breathing problems, digestive problems, and skin abnormalities. Accompanying these physical challenges were changes in behavior and challenges in interpersonal relationships. The cluster of symptoms is referred to as Gulf War Illness (GWI) and is estimated to have affected 175,000 to 250,000 of the nearly 700,000 troops deployed to the Gulf War. Despite being over two decades out since the war, there have been no studies to date that focus on the individual and unique experiences of Veterans with GWI including their perceptions of the impact of the illness, differences in experiences related to aspects like aging and gender, quality of care received, barriers faced, and the related impact on interpersonal relationships and quality of life.

The main research questions for the study are as follows: What are the perceptions and experiences of Veterans with GWI regarding symptoms of physical health, cognitive functioning, quality of life, as well as the quality of care they receive? In addition, the study will explore experiences related to the natural process of aging; differences in experiences across demographic characteristics (e.g., gender, race/ ethnicity, type of exposure, etc.) as well as capture the perceptions and experiences of healthcare providers who serve Veterans with GWI. Data for the study will include narrative interviews as well as collage self-portraits of Veterans’ experiences of living with GWI. This research will lead to the development of an educational resource for healthcare providers, namely, a Massive Online Open Access Course (MOOC) that will include recent research on GWI and qualitative perspectives from a range of Veterans living with the illness.

The timeline for the study is 3 years. Years 1 and 2 will involve data collection in the form of interviews with Veterans and healthcare providers and analyses of these data. Year 3 will be focused on the development of the MOOC curriculum based on findings from the study.

Given that there is significant concern that the needs of this population have not been adequately served, the findings could help educate healthcare providers through the voices and portraits of Veterans with GWI. This in turn could help advance the mission to provide personalized care to patients with GWI and integrate them more effectively into the healthcare provided through the Department of Veterans Affairs, Department of Defense, and other federal agencies.