Cindy Fair and alumna Ashley Jutras ’20 jointly publish research on lived experiences of caregivers for adolescents and young adults living with HIV

Professor Cindy Fair and Ashley Jutras ’20 published research highlighting stories of discrimination, hope, stigma, support, and resilience told by caregivers of adolescents and young adults living with HIV in the peer-reviewed journal Families, Systems, and Health.

Starting in January of 2020, Public Health Department Chair Cindy Fair and Ashley Jutras ’20 began collaborating on qualitative research focused on highlighting the lived experiences of families of adolescents and young adults living with HIV.

Cynthia Fair, Watts-Thompson Professor and department chair of Public Health Studies

Utilizing data collected from phone interviews with a variety of caregivers (biological parents, adoptive parents, step-parents, and extended family) the data was coded and organized by theme. Titled “I Have Hope, but I’m Worried”: Perspectives on Parenting Adolescents and Young Adults Living with Perinatally-Acquired HIV,” many families were met with the juxtaposition of hope for the future and worry stemming from past experiences of discrimination and stigma. Other common themes that arose from the data include day-to-day concerns related to treatment adherence and safer sex practices, especially as these adolescents step into the independence of adulthood.

Jutras, a 2020 graduate who double-majored in public health and human service studies at Elon, spoke of the important intersection of this research between the medical field and social work.

Ashley Jutras ’20

“For many of the families who participated, a common theme was a lack of support and respect they received from the medical community at large,” Jutras said. “By providing medical professionals with the knowledge and comfortability in discussing sexual health, addressing both implicit and explicit biases, and improving referral pathways to mental health support, patients will feel better supported and likely have improved health outcomes. For many folks, and particularly individuals living with HIV, going to the doctor is not only about medical needs, but socioemotional needs as well”.

After two and a half years of coding, writing, and revising, Fair and Jutras published their research in the peer-reviewed journal Families, Systems, and Health. Today, Jutras is an MSW/MPH candidate at Boston University continuing her studies in medical social work.

“It is heartwarming to know that even after graduating from Elon I still have such strong connections with the community,” Jutras said, reflecting on her collaborative work with Fair. “It speaks a lot to Dr. Fair’s passion for her work that she continued collaborating virtually after I left Elon. It has been an honor to work alongside her and learn from such a leader in the field of public health”.