Research as Intervention: Dealing with Disease
Mon, 11/05/2012 - 4:33pm
Psychosocial issues surrounding HIV/AIDS has forced some to fall out of treatment, turning back the clock on all the progress made in the last two decades.
Cindy Fair, professor of human service studies at Elon Univ. in Elon, N.C., recently returned from a yearlong sabbatical studying the fertility desires and intentions of youth living with perinatal HIV infection—or, put more simply, whether young adults born with HIV want to or expect to have children. Although never prepping a sample or examining a culture, Fair says she sees her work as “research as intervention.” Though she’s not providing direct care to the people she works with, she’s able to offer them an opportunity to make positive changes in their lives.
“Children who were born with HIV in the 1980s and 90s weren’t expected to live past age two, but because of the advances in medicine, they are now reaching their 30s,” Fair explains. But support for the psychosocial effects the disease has on patients and their families hasn’t exactly kept pace with technology. “They’re asking questions about how to navigate relationships, about whether they want to or should have children,” Fair continues. “They need the knowledge and tools to manage the disease in this new phase of life.”
Some of the problems facing these young people are systemic. Many adolescents with maternally transmitted HIV have received care via Medicaid, but that often ends at age 18 unless the person enrolls in college or has private insurance. The pediatricians these patients have grown up with typically see 60 to 100 patients in a practice, while the adult physicians they’re transitioning to might see more than 1,000, spreading time, technological and financial resources thin.
Other problems are more personal. Adolescents born with HIV often develop strong bonds with their pediatricians over several years and find it difficult to forge comparable rapport with their physicians in the adult clinic. These patients may not feel comfortable talking about their disease status or asking questions about sex and the potential for transmitting HIV.
There are many implications for this phenomenon, but one of the most alarming is that many patients are falling out of treatment altogether, which could turn back the clock on the progress that’s been made in bringing HIV/AIDS under control in the United States.
Using her professional connections with local agencies, the National Institutes of Health and Duke Univ. Medical Center, where she served as a clinical social worker and researcher for five years in the late 1990s, Fair spent hundreds of hours in the past year studying young adults with HIV, their families and medical providers via interviews, focus groups and surveys.
She’s found that a patient’s level of disease knowledge is directly related to the quality of their interaction with their doctors; that a creative writing therapy group is an effective, low-cost means of helping teens with HIV become comfortable talking about the disease; that the overwhelming majority of young adults with HIV intend to have children; and that providers aren’t informing teens considering motherhood about the proper ways to ensure they don’t pass HIV on to their children.
“In the early 1990s, before treatments were approved, mothers with a high viral load had a 30 percent chance of passing the virus to their children. Now, with treatment and education about how to interrupt maternal transmission of the disease, mothers have less than a one percent chance of passing HIV on to their children,” Fair says. “But our research found that few patients were being asked by providers, ‘Do you want to have a child?’ or ‘Do you know that you can have a healthy child?’”
Fair’s interest in HIV/AIDS—particularly the psychological aspects of the disease—dates to the year after she graduated from Davidson College in 1987. She was an assistant teacher at a school for children with emotional problems in San Francisco, where many of the school’s children were bussed from Oakland. At the time, Oakland was gaining a reputation as the crack cocaine capital of the world, and the Bay Area was becoming ground zero for the emerging HIV/AIDS epidemic.
For many of the children she worked with, HIV was quickly becoming a fact of life. Fair, who grew up with a mother who suffered from diabetes, found herself able to relate to some of their struggles.
“If you take away the stigma of HIV/AIDS, it’s just like having a family member with any other chronic disease, like multiple sclerosis,” she says.
The experience and her personal history led her to work as a clinical social worker at the National Institutes of Health and Duke and later complete doctoral studies in public health at the Univ. of North Carolina at Chapel Hill. In her nearly 20 years as a scholar, she’s published more than 30 articles in leading journals and made more than 25 presentations at national and international professional and scholarly conferences.
“When people in our field conduct a literature review or are learning about HIV/AIDS and children, Fair’s name will come up, or her academic publications will come up,” says Lori Wiener, head of the pediatric psychosocial support and research program at the National Cancer Institute. “Her work guides practice and informs interventions.”
Teaching the future
Fair’s scholarship attracts some of the best and brightest students. She has mentored nearly two dozen undergraduate research projects since 1999, and those relationships have not only produced presentations and publications, but also professionals contributing to the field of HIV/AIDS care.
“My work with Fair is why I do what I do now,” says Elon graduate and Fair mentee Britten Ginsburg Pund, a senior manager of healthcare access for the National Alliance of State and Territorial AIDS Directors. “She instills a sense of confidence in your ability to take ownership of a project, and the knowledge base and experience to succeed as a professional. The skills I learned from her, I use every day.”
Fair’s most recent mentee, Jamie Albright, is already making waves in the HIV/AIDS research community, despite being a senior in college.
One of Albright’s projects dovetails with Fair’s current research about the reproductive decisions facing young adults born with HIV. She worked closely with Fair in the past year conducting interviews with patients and surveying providers to find places where their perspectives intersect and diverge. Last September, Albright joined Fair and Wiener at a “think tank” at the NIH that brought together leading scholars and practitioners in the fields of social work, psychology, medicine, nursing and more to address the issue of the adolescent HIV transition.
Albright coauthored a study Fair presented at the 19th International AIDS Conference in July and two other abstracts accepted for presentation at October’s national American Public Health Association meeting. By the time Albright graduates in May, Fair estimates, she likely will have four coauthored journal articles to her credit.
Fair may never write a prescription for medication or counsel a young woman born with HIV through her difficult decision of whether to have children. But Wiener, for one, is certain Fair’s research will have a lasting impact with the patients she studies—and people well beyond.
“This work will make a difference because nothing is out there about this at this point. It’s not only applicable to HIV and AIDS, but also other infectious diseases,” Wiener says. “It’s pioneering work, and it will have implications not only for our country, but also for the rest of the world over time as people struggle with these issues."