For the first time in human history, individuals with hemophilia are living beyond their 30s and 40s. Advances in treatment including the use of synthetic blood products have changed the life trajectory of people with hemophilia and individuals who received earlier treatments. Older adults with bleeding disorders face uncharted territory not knowing if symptoms are related to the natural aging process, disease or comorbidity of multiple health conditions, resulting in a struggle to plan for the future. Wayne State University School of Social Work Associate Professor Tam Perry, PhD, is working with Wayne State students and experts from across the U.S. to explore enhanced service delivery practices and concrete ways in which we can better support older members of the bleeding disorders community.

Perry, the first non-physician investigator to win the National Hemophilia Foundation's (NHF) Innovative Investigator Research Award, has been named a 2021-22 Resident Scholar by the Wayne State Humanities Center. Perry’s residency will allow her to further develop analysis, presentations and publications for her NHF funded project “Navigating Time and Space: Experiences of Aging and Hemophilia” otherwise known as “Project Survivor”.

Project Survivor aims to examine the lived experiences and time horizons of aging persons with hemophilia (APWH) in order to characterize this community and to enhance service delivery practice after examining needs, facilitators and barriers experienced by APWH. Along with Perry, the research team includes Sara Schwartz, PhD, MSW, clinical assistant professor at the University of Southern California Suzanne Dworak-Peck School of Social Work and a board member of the National AIDS Memorial Grove, Dana Francis, MSW, a social worker in the Adult Hemophilia Program at the University of California San Francisco Hemophilia Treatment Center, and Charles Kaplan, PhD, associate dean of research and research professor at the Hamovitch Center for Science in the Human Services at the Suzanne Dworak-Peck School of Social Work at the University of Southern California. With support from the WSU Undergraduate and Research Opportunities Program (UROP), Project Survivor also includes a student research team comprised of five pre-med students eager to put theory into practice through engaged research and mentorship with Perry.

As a Humanities Center Resident, Perry will maintain physical office hours at the Center contributing to a community of humanities and arts faculty from various disciplines across campus. It is the Center’s hope that this arrangement will facilitate the formation of valuable research networks and promote interdisciplinary collaborations. As a scholar, Perry will meet with fellow faculty to share progress, experiences and emerging conclusions from her research.

Being trained in both social work and anthropology has affirmed my value of interdisciplinary communities. I am excited for the vibrant intellectual community I am joining and look forward to moving Project Survivor towards the finish line with the support of the Humanities Center. - Social Work Associate Professor Tam Perry

Perry and colleagues will present this work nationally on November 17, 2021 for the National Hemophilia Foundation's Webinar series and at the Gerontological Society of America in a talk titled, "Changing time horizons and trust: Experiences of Aging with Hemophilia."