(BlackDoctor.org) — Adolescence is a time of dramatic physical, emotional, mental and social change. The transitions that occur usher youth into the social and sexual world as independent beings. These changes provide opportunities for positive growth experiences, but they also bring new vulnerabilities.
Unfortunately, young people in the U.S. and other parts of the world are particularly vulnerable to HIV infection. One of the hallmarks of adolescence is the formation of a sexual identity, while another is the inclination for taking risks. When mixed, these characteristics can be dangerous, as reflected in the fact that half of all new HIV infections each year are estimated to occur among youth aged 13 to 24.
The Challenges of Adolescence
Adolescence is marked by a move toward independence and a challenge to family traditions. But young people do not exist in a vacuum. They are a part of social networks that can make living with HIV easier or harder.
Young people with HIV face the same challenges as their HIV-negative peers, including experimental behavior and development of the skills needed for adulthood. But youth with HIV must address these challenges while living with the stigma of their disease. Their choices regarding intimate relationships, sexual activity, and experimentation with drugs and alcohol are complicated by:
• Fears of rejection
• Side effects of HIV drugs
• Uncertain life span
• Disclosure and transmission
• The impact of loss
Older teens and young adults may be more able than their less mature peers to take an active role in dealing with HIV. But even they require significant psychological and emotional support. And two other transitions to adult life common to all young people are experienced differently by those with HIV: planning for school and work, and dealing with the adult medical system.
It is critical to help them understand that HIV is a chronic illness that, when successfully managed, can allow for a long and healthy life that includes marriage or long-term relationships, children and a career.
A key task in working with young people who have HIV is helping them adjust to their HIV status. Without proper support, adolescents have enormous difficulty staying in care and adhering to treatment. Goals of psychosocial care for youth include:
• Identifying and addressing crises, such as suicidal behavior or homelessness
• Providing access to benefits, entitlements and services
• Promoting adherence to treatment
• Assessing and expanding social support
• Supporting development of self-care and life-enhancing practices
• Identifying and treating chronic problems like depression and substance use
• Promoting skills to live independently and to make the transition to adulthood
• Reinforcing and sustaining safer sex behaviors
• Encouraging drug treatment, if needed, and supporting recovery
Adolescence is a time of testing limits, marked by risk taking, struggles for independence, experimenting with adult behaviors, impulsivity and a sense of invulnerability, coupled with awakening sexuality. But normal adolescent behavior that would be relatively safe in other youth can damage the health of a young person with HIV, putting her or him at particular risk and making adherence to treatment difficult.
Adolescents strive for independence, but those with HIV are dependent on doctors, caseworkers, medicines, etc. Resentment and mixed feelings about such forced dependency are not uncommon and can lead to poor adherence or substance use. For adolescents infected at birth, there can be added challenges arising from the fact that they were not expected to survive childhood and therefore were not helped to develop the skills they would need for independent living.
For some youth, the impact of a new diagnosis is immediate. For others, it can take weeks or years for the emotional reality of the diagnosis to be absorbed. The particular traits of adolescence make it even more challenging to cope with HIV. These include a strong sense of invulnerability and immortality, being prone to peer pressure, difficulty grasping the long-term consequences of behavior, and a struggle between a sense of power and a lack of it.
For adolescents who have experienced poverty or living arrangements that brought constant threats and dangers, living with HIV is another burden in their lives. It is often perceived as proof that the world is untrustworthy.
Adolescents are very concerned about sharing their HIV diagnosis with others. Disclosure of one’s HIV status is complex and delicate, and each disclosure comes with consequences. Peer support groups, networks, or interactions may be helpful both before and after disclosure.
Adolescents who disclose their HIV status to peers and family have been shown to have:
• Better psychosocial outcomes
• Fewer symptoms of post-traumatic stress disorder
• Greater likelihood of disclosing to romantic partners
• More confidence with peers
• Greater resources and support from family and friends
On the other hand, sharing one’s HIV status with others can result in being shunned and even discriminated against. Referral to a mental health professional or a spiritual adviser who is informed about HIV can help adolescents decide when and how to disclose their status. Role playing can be a particularly effective way for teens to practice informing potential sexual partners.
Mental health problems often lead to poor adherence to treatment among adolescents. Adherence rates for adolescents and young adults taking antiretroviral medications range from about 29% to 61%. Adherence is influenced greatly by:
• Disclosure issues
• Peer relationships
• Difficult social conditions
• Substance use
• Family belief system
• Psychological distress and depression
• Complications with day-to-day routines
• Family perceptions of the value of medication
Some young people may have concerns regarding how well medications work for people from their racial or ethnic group. These concerns may come from adults in the family who have misgivings about the treatment of minorities by the healthcare system. In fact, a recent survey of African-Americans ages 15 to 44 found widespread belief in AIDS “conspiracies”:
• 53% believe a cure for AIDS is being withheld from the poor
• 44% believe people who take new medicines for HIV are “human guinea pigs” for the government
• 60% believe that information about AIDS is being held back from the public
Certain cultural groups often rely on traditional approaches to healing, but herbs and other supplements can interact with HIV medications. Also, the visible side effects of certain HIV drugs (such as rashes and changes in body shape) can be a barrier to adherence. Including adolescents in treatment decisions and listening to what they have to say about side effects can lead to better adherence and may improve their quality of life.