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Learning to Live Into Adulthood: Challenges and Opportunities for Perinatally Infected Youth

By the Team at the Pediatric HIV/AIDS Program at Children's Hospital and Research Center, Oakland, California

June 2006

People living with HIV are living much longer now than early in the epidemic, including children who were perinatally infected (in whom HIV was transmitted through the birth process from their mother). In the earlier years, many children who were infected through mother-to-child transmission in the U.S. died from AIDS-related illnesses. Today, however, children with HIV benefit from many of the same medications that are extending the lives of adults. This means that many perinatally infected children have now grown and are in their teens and early twenties. While this is a wonderful blessing for these children and their families, it has also brought challenges for the teens, their families, and for providers.

As we all know, the teen years can be both an exciting and challenging time for young people. It is a time of growth, exploration, and learning through trial and error. Youth are becoming more aware of themselves and their bodies. They are experiencing a growing sense of self and personal power. They are learning how to make decisions, setting and testing their own limits, exploring their sexuality, and coping with peer pressure and shifting identities. All of this can be made even more complicated if a young person is dealing with a chronic illness.

For teens born with HIV, fitting in and feeling "normal" is just as important as it is for most teens. With an HIV diagnosis, the feelings can become even more challenging. Teens with HIV have lived their lives with the stigma that HIV still carries. Issues of disclosure to their peers and potential sexual partners can be very frightening, overwhelming, and isolating. Most guard their HIV status as a secret. While they may desire to be like their peers, having romantic relationships and experimenting with sexual behavior, they carry the burden of knowing that they risk infecting another. Disclosing their HIV status to a potential romantic or sexual partner may mean rejection. While parents and providers may hope that the decision to act responsibly (disclosing to a potential partner, using condoms, etc.) will take effect, is it fair to expect more from them than we do of other teens or adults?

Independence and future planning may also not come easily for teens who are growing up infected with HIV. Because the treatment and survival outlook for people in the earlier years of the epidemic was not very optimistic, many families may not have planned for their HIV+ child's future. Many children were treated as fragile in their early years, and may not have been expected to live. Their parents may have been understandably overprotective of them. They may not have attended school regularly, with the idea that their futures were uncertain or that their health was too fragile for them to be around other children. They may not have had consistent limit-setting or discipline because their parents felt guilty, sorry for them, or that they didn't need to be prepared to be adults. They may have gotten more toys and gifts, received more attention and not received the same discipline as their siblings who were not infected. Such special treatment did not prepare these children for becoming teens and young adults.

Teens with chronic illness are often challenged with adhering to their medication regimen. Taking medications on a regular schedule may not fit well with active, teen lifestyles. The need to adhere to a strict medication regimen may feel like a disruption. Teens may be put to the test negotiating how to spend the night at a friend's house and still take their medications without being "found out." If not successful they may end up skipping doses. The inconsistent adherence can result in the development of drug resistance and an increase in viral load. When these issues are discussed with teens, they tell us they are trying to balance the importance of taking the medication and being with their peers. Moreover, understanding the importance of medication adherence may be difficult for youth who may question why they need medications now when they are healthy and may have never been seriously ill, and when medication side effects make them feel sick.

Regardless of what they hear from their families and healthcare providers about HIV being a chronic illness that can be controlled by medication, teens with HIV may still feel that their futures are uncertain. This uncertainty can cause ambivalence about planning for the future. They may not have focused on getting good grades and preparing for employment. As they enter adulthood, they are faced with learning how to live independently.

In the midst of all of these obstacles, perinatally infected youth are growing into young adults and learning each day to live more responsibly and cope with HIV as a chronic disease. Coping means dealing with all of the feelings that come with having a chronic illness including sadness, disappointment, worry, fear, vulnerability, confusion and anger. It also includes learning about the disease, its treatment, and prevention of transmission. And it includes acceptance, or coming to terms with living with HIV. Any of these stages of coping can come and go as youth pass through the different stages of life. For youth who are perinatally infected and coming of age, it's important to begin taking control of their lives. This means playing an active and informed role in their health care and treatment. Becoming educated about the disease and its particular impact upon themselves and their bodies can be empowering. Living positively can be made easier through the support of other HIV+ youth, sharing the challenges and encouraging each other's positive growth and development. And it means keeping things in perspective. As more medicines are being developed, there are more options for health and well-being for people living with HIV. It is important for perinatally infected youth to recognize and embrace the future to which they are entitled, a future of possibility and opportunity, as they draw upon the strength and resiliency that they have acquired through their lives.

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