Drugs developed to treat HIV have improved dramatically in the past 20 years, with many children born with the infection reaching adulthood.
While this is good news, the reality is that many young people living with HIV aren’t ready for adulthood or the responsibilities that come with it because no one—not their doctors or their family—thought they would live that long.
As a former social worker at the National Institutes of Health in the early 1990s, Cynthia Fair, professor of human service studies, first worked with children with HIV who were getting treated through clinical trials because there were no drugs approved for pediatric use. Since then, Fair’s scholarship has focused on the changes in the HIV epidemic.
Understanding the challenges that come with typical rites of passage, from dating to relationships to planning for a family, that young people living with HIV have to navigate and learning how to best support that maturing population is the crux of Fair’s most recent research.
“They have a highly stigmatized illness that’s not discussed frequently outside of the family, therefore, they are faced with having to negotiate intimate relationships with an illness that is not easily disclosed,” Fair says.
Research indicates that this population of young people engages in behavior typical for their age group. They are having sexual relationships, and many want to have children someday.
“They follow the same path that many of their uninfected peers do,” Fair says. “My research sought to shine a light on not just the behaviors but the process.”
For example, in the state of North Carolina if people have HIV, they are required by law to tell their partner before engaging in sexual intercourse. During her research, Fair found that young people with HIV are told that information, but they are frequently not given any other guidance.
“You’ve got to tell. Now, how do you do that?” Fair says. “When do you do that? How do you prepare for that conversation? I wanted a broader look at the whole person.”
Similarly, Fair found the same population is told not to transmit the virus, get pregnant or get someone pregnant, so they think having children is out of the question. In a related project, recent Elon graduate Jamie Albright ’13 found some health-care providers don’t tell them otherwise.
During a yearlong sabbatical in 2011-12, Fair was a co-facilitator of an NIH think tank about the factors that influence the reproductive decisions of a young person living with HIV. As a result, “Reproductive health decision-making in perinatally HIV-infected adolescents and young adults” was published in Reviews in Antiviral Therapy & Infectious Diseases and Maternal and Child Health Journal.
“What we found is that they have very high fertility intentions and desires—higher than any other study we could find among adults with HIV infection,” Fair says. “This is a group of young people who really do want to have children. The problem is many of them have a misunderstanding of the risk of mother to child transmission.”
If a woman is on an anti-viral treatment, her viral load is undetectable and has about a 1 percent chance of having an HIV-infected baby. It’s a risk that used to be has high as 30 percent, Fair says.
“That means they have a really good chance of having a healthy baby,” Fair says. “There is a lot of misinformation about that among this population. They have a high desire and low knowledge. What I’d like to see is for providers and family members to talk intentionally.”
Fair wants her research to be a catalyst for conversations focused on healthy family planning with a supportive partner who understands the challenges of living with HIV. Much of that responsibility will fall to the young person’s health-care providers, although even that presents challenges.
“You’ve had the same pediatrician, the same nurse and the same social worker caring for you your entire life and you hit 18, 20, 21 and now you are supposed to go to the grown-up doctor,” Fair says. Many adolescents with perinatal HIV infection are very close with members of their pediatric health-care team as Fair’s research with Duke Children’s Hospital social worker, Rachel Dizney, published in AIDS Patient Care and STDs indicates.
As children born with HIV, many were chronically ill and were often sheltered. They didn’t make their own appointments or keep track of their medication, making the transition to adult care challenging. “They are entering into a system that has a lot more patients per provider, and they don’t get the same support they had in the pediatric clinic,” Fair says.
Prior to her sabbatical, Fair also collaborated with Linda Connor, another Duke social worker, and two Elon students, Emily Wise ’11 and Jamie Albright ’13, to evaluate a creative writing group for HIV-infected teens that gave the youngsters an opportunity to express themselves through poetry, art and other creative ways. As a result, they published, “I’m positive I have something to say: Assessing the impact of creative writing group for youth living with HIV,” in Arts in Psychotherapy.
“That’s one unique intervention that is low cost that is useful to all kinds of people but really particularly those who have this stigmatizing illness,” Fair says.
Fair joined Elon’s faculty in 1999. She received a bachelor’s degree from Davidson College and master’s degrees in social work and public health as well as a doctorate in public health from the University of North Carolina at Chapel Hill. She teaches several courses that she developed, including childbirth, human service studies research methods, human service studies and public health studies senior seminars, and a pediatric AIDS lab for the UNC School of Public Health. She also has three papers related to her recent research under review for publication.