Medical advances have allowed children infected with HIV/AIDS to live longer than ever before, and for families and doctors, that creates new challenges as teenage patients grow older. New research by associate professor Cynthia Fair outlines steps that families and medical providers should consider to ease what can be a difficult transition from pediatric to adult care.
Fair’s scholarship appears in an upcoming issue of Psychology, Health, & Medicine. “Best practices in transition for HIV-infected youth: Perspectives of pediatric and adult infectious disease care providers,” co-authored with Elon University assistant professor Kristen Sullivan and Elon alumna Amy Gatto ’09, offers three areas that need to be addressed: patient preparedness, provider communication and the system gaps within the network.
To function successfully in the adult medical system, Fair and her colleagues argue that young adults must be capable of taking responsibility for their own medical treatment, such as knowing what medications they take as well as following up with appointments.
That level of responsibility takes time to develop. And it requires caregivers in the family to give up some control, which can be difficult since parents or guardians have oftentimes been in that role ever since the patient’s birth.
“Many providers recognized that building the skills and knowledge necessary to function well in the adult clinic environment takes extensive time, often years, and discussed the importance of early preparation of the patient for the actual transition to the adult clinic,” they wrote.
For the article, the team conducted interviews with 19 North Carolina health care professionals who provide care to youth living with HIV: nine were nurses and doctors and 10 were social workers. Many agreed that a clinic for patients ages 16-24 would most effectively address current issues.
“I would love to support a young adult clinic that would follow youth 16-24 with developmentally appropriate care,” Fair said. “But it’s hard to get funding for a program like this.”
Prior to her career with the university, Fair worked as a social worker for families with HIV-infected children. She said the treatment for the child is very expensive and often puts a strain on the entire family.
Britten Ginsburg ’06 co-authored research with her former professor on the stigma and discrimination faced by infected adults. The article, “HIV-Related Stigma, Discrimination, and Knowledge of Legal Rights among Infected Adults,” is based on research Ginsburg conducted as a human service studies major while at Elon and appears in Journal of HIV/AIDS and Social Services.
“The importance was instilled in me of how important it is to look at HIV/AIDS in a different way,” Ginsburg said. “My life would not have been the same without her.”
Colleagues also praise Fair’s work and applaud her dedication to mentoring undergraduates.
Sullivan has collaborated with Fair on previous research projects and cites her demeanor with Elon students as a boon for the university. “She’s an amazing teacher and mentor to students, an accomplished scholar, and is very involved in service to the university,” Sullivan said. “Cindy’s energy never ceases to amaze me.”
Fair has published several articles in recent years, mostly dealing with HIV/AIDS and service-learning with children. She works with students on independent projects, including Lauren Taylor ’10, a student in the inaugural class of Lumen Scholars at the university who studies HIV-related maternal care in South Africa.
Fair earned her bachelor’s degree in psychology from Davidson College and her masters in social work and doctorate in public health from the University of North Carolina at Chapel Hill. In her dissertation, she focused on the emotional and educational functioning of HIV-affected children.
“I got interested in working in the field of pediatric HIV/AIDS while working in a San Francisco school for children with emotional problems in the late 1980s,” Fair said. “At that time HIV in children was just being recognized and many of the children I was working with were born into families with an extensive history of substance abuse and violence. I don’t know if any of the children I worked with in that school were HIV-positive, but it peaked my interest.
Chair of the Department of Human Service Studies since 2006, Fair has developed and taught five original classes, including childbirth and human services research methods.
– Written by Samantha King ‘12