Putting Children’s Psychology First
Sharon Nichols, PhD works in the Department of Psychiatry at the University of California, San Diego. She has over 20 years of experience working with children living with HIV, with a focus on the cognitive and behavioral functioning of children living with HIV who took part in clinical trials for new medications. She also serves in the Behavioral Leadership Group of the Adolescent Trials Network for HIV/AIDS Research. She took some time to sit down with us and talk about her work and the psychological challenges children and young people living with HIV face.
What are the biggest psychological challenges for children living with HIV? Children and youth with HIV face all of the same challenges as other young people, and many of them are also growing up in environments with major obstacles such as poverty, and exposure to trauma and violence. They may have mental health, learning, or developmental challenges that are unrelated to their HIV status. HIV is often not the only, or even necessarily the biggest, challenge they face. Children still may have uncertainty and anxiety about their future, and that of other affected family members, such as their mothers. They may worry about whether they will have the opportunity for families of their own someday. They may feel angry about having HIV and its treatments, and rebel by not taking medications. Knowing when, and how, to tell others about their HIV can be difficult for young people and families and cause anxiety.
How have those challenges changed as treatment regimes have improved? How do those challenges affect young people living with HIV as they transition from pediatric to adult care?
The treatments that have been developed have completely changed the possibilities for children with HIV. They can have hope for the future. But as treatments have enabled children to live to adulthood, and hopefully to old age, they and we face the challenge of preparing them for that. This means getting ready for relationships, employment, and living successfully with HIV. Youth may become discouraged or depressed and lack motivation to care for their illness at times.
Transitioning to adult care can be a difficult issue for young people with HIV. For young people, just finding a clinic’s number and calling to make an appointment can be intimidating. Learning to navigate the health care system, deal with insurance issues, and all those steps that go into getting medical care takes time and preparation. Taking responsibility for their own medication adherence is vitally important but challenging for many youth for a variety of reasons.
In your paper, you mention the cognitive effects of HIV on growing brains. Can you explain those, and why that occurs?
HIV interacts with the brain in a complex manner that involves both direct and indirect effects. High levels of HIV activity in the brain can produce damage that may not recover completely, which is one reason that treatment is now focused on preventing immune deficiency rather than treating it when it occurs. We also know that some parts of the brain that are particularly vulnerable to HIV, such as the white matter containing the fibers different areas use to communicate with one another, continue to develop throughout childhood and into young adulthood. We are still learning about the effects of HIV during this period of life, and how it may interact with other risks of adolescence, such as alcohol and drug use.
How important is the psychological aspect of HIV care and treatment? Why is it important to keep in mind? The psychological aspects of HIV care are very important, and the more we learn about HIV treatment and prevention, the more we realize that. We have long recognized the need for counseling, support and psychiatric care to address the emotional impacts of HIV on children and families for the purpose of reducing suffering and increasing their quality of life. However, it is also important in addressing the obstacles to medical management and adherence, reducing risk behaviors, and helping young people transition to adulthood successfully. I should note that young people who are keeping HIV in check, resisting substance use, and have the skills to negotiate safe sexual practices and disclosure of their HIV status are also less likely to transmit HIV to sexual partners.
Jane Coaston is Media Relations Coordinator for the Foundation, based in Washington, D.C.