Caring for Youth With HIV

Winter 2008/2009

Caring for Youth With HIVAdolescence 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 propensity 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
  • Stigma
  • Older teens and young adults may be more able than their less mature siblings 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 career.

    Providing Support

    HIV Transmission Routes

    Young Males

    Sex with men: 76%
    Sex with women: 11.5%
    Injection drug use: 7.5%
    Sex with men and injection drug use: 4.5%
    Other: 0.5%

    Young Females

    Sex with men: 85%
    Injection drug use: 14%
    Other: 1%

    Young men who have sex with men (YMSM) are at particularly high risk for HIV. The CDC's Young Men's Survey found that 14% of African-American YMSM and 7% of Latino YMSM aged 15-22 have HIV. In the 33 states that report HIV cases, African-Americans accounted for 61% of cases in 13 to 24 year olds. Young women are increasingly at risk -- in 2003, they accounted for 50% of HIV cases among those aged 13-19 and 37% of those aged 20-24.

    AIDS Cases

    In 2004, an estimated 2,174 young people received an AIDS diagnosis, bringing the total number of youth living with AIDS to 7,761. Treatment advances have contributed to the growth in the number of youth living with AIDS. Between 2000 and 2004, there was a 42% increase in their number.

    Minority youth have been disproportionately affected by HIV since the beginning of the epidemic. According to the CDC, in 2004 African-Americans made up 73% of all AIDS cases among youth, and Latinos 14%. In 2004, females made up 43% of AIDS cases among 13 to 24 year olds.

    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, case workers, 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, 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 health care system. In fact, a recent survey of African-Americans aged 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.

    Cultural Concerns

    Racial and ethnic minorities make up a growing number of people living with HIV. The current makeup of AIDS cases in people aged 13 to 19 is as follows:

    • 70% African-American
    • 15% white
    • 13% Latino
    • <2% Asian/Pacific Islander and Native American

    In many families, certain issues are not discussed with younger members. Secrets regarding substance use or sexual behavior may be off limits. Some families may be hesitant to "air their dirty laundry" and want to maintain privacy. Among African-Americans, this is sometimes related to the historical experience of racism and the need to be cautious because of the risk of mistreatment, sometimes referred to as "healthy cultural paranoia." The stigma associated with HIV may intensify a family's need to be protective of its members.

    The use of disease as a strategy for colonization, a history of unethical research, and underfunded reservation-based medical care have left many Native Americans distrustful of medical providers. An extended family is the recognized center of Native American life, so it is critical for the provider to identify those who are considered to be family members. Family distrust can become an issue if family members who usually take on the responsibility of making treatment decisions are ignored by the care provider. Without trust by the family, the person with HIV may not trust either the clinician or the treatment. The HIV-positive young person may have access to rites of passage or activities that can help foster growth and development. Adolescence is seen as a preparation to assume community responsibilities and live productive adult lives. There may be community-based programs available to assist with this.

    Among Latino youth, particularly Latina teens, the common adolescent desire to fit in may displace many traditional cultural norms, including the protective effects of familismo (attachment to the family) and taboos against certain risk-taking behaviors. Many Latino families have a respect for the authority of a health care provider that can help to engage the family in issues around medical care. Language can be a barrier or a valuable tool in building relationships with Latino families. People are often more able to discuss emotion-laden topics in their primary language.

    White youth are the minority in most HIV clinics. They often describe "standing out" and are concerned about not fitting in or not being taken seriously because of their skin color and assumptions about their lifestyle.

    Cultural Beliefs & Mental Health

    Beliefs concerning mental health treatment vary between different cultural groups, many of which reject conventional Western methods. In communities where there is a strong sense of spirituality, families may consult spiritual leaders for help. Some may accept conventional medical treatment while also using approaches grounded in their own traditions.

    Among Latinos, the use of spiritualism, Santeria, and other religious approaches to both physical and mental health is common. Community storefronts that offer spiritual readings or the neighborhood curandero that promotes the use of herbal treatments, special diets, and spiritual prescriptions can influence people to reject their clinician's recommendations for psychiatric medications and psychotherapy. Of special concern are the adverse effects and interactions between certain holistic treatments and conventional medications. All people with HIV should give detailed information to their care providers regarding all treatments they are using, including herbs and vitamins.

    Among Native Americans, the use of traditional medicine varies from group to group. Traditional practices can include ceremonies specifically for the community or for the individual and family. Traditional medicine represents vast systems of prevention and treatment that operate at several levels, with practitioners who dedicate a substantial portion of their lives to healing. As a result of the trauma of colonization and subsequent abuse, Native Americans have long been at risk for behavioral, emotional, and mental health problems. With the strengthening of tribal culture in recent years, there has been an increase in the availability of tribal services and culturally sensitive mainstream mental health services.

    Sexual Orientation

    Stages of Lesbian/Gay/Bi Identity Development

    Stage One: Sensitization

    Before puberty, children experience feelings of being different from their peers, based on gender role choices or behaviors. Few see themselves as sexually different before age 12.

    Stage Two: Identity Confusion

    After puberty, adolescents become aware of same-sex thoughts and feelings. Negative stereotypes of homosexuality lead to cognitive dissonance and confusion as they struggle to make sense of their emerging identity. Many hide their sexual identity, or adopt a bisexual identity.

    Stage Three: Identity Assumption

    During mid- to late adolescence or early adulthood, youth begin to self-identify and disclose their sexual identity (come out) to other gay people. Over a period of several years, they interact with lesbian and gay peers, and positive experiences strengthen self-esteem and dispel negative stereotypes. Access to an organized LGBT community provides opportunities for socialization, developing relationships, and finding positive role models. They learn a variety of strategies to manage their stigmatized identity.

    Stage Four: Commitment

    Self-acceptance generally leads to incorporating sexual identity into all aspects of one's life, usually during adulthood. Sexual identity is shared increasingly with non-gay friends and close family members. But integration depends on various factors, including access to support and positive role models, personal strengths and vulnerabilities, and experiences with discrimination.

    Lesbian, gay, bisexual, and transgender (LGBT) adolescents come from all racial and ethnic groups, economic levels, and religions. They live in large cities and small towns, and are members of single-parent, two-parent, blended, and foster families. They are student leaders, athletes, and active members of civic groups as well as school dropouts and street youth. For the most part LGBT youth are indistinguishable from their heterosexual peers -- in fact, most are invisible.

    The struggle to develop and integrate a positive adult identity -- an important task for all adolescents -- becomes an even greater challenge for LGBT youth, who learn from earliest childhood the profound stigma of a homosexual identity. Unlike many of their heterosexual peers, LGBT youth have no built-in support system or assurances that their friends or family members will not reject them if they acknowledge their sexuality. The social and emotional isolation experienced by LGBT youth is a unique stress that increases vulnerability and the risk of developing a range of health and mental health problems.

    The psychosocial stresses to which LGBT adolescents are particularly prone include:

    • limited knowledge among providers about sexuality
    • stress from coping with stigma
    • lack of support or overt hostility from family and friends
    • need for secrecy
    • lack of appropriate outlets for socialization and exploration of sexual identity (which can lead to high-risk, anonymous behaviors)
    • lack of clear HIV prevention messages that include LGBT youth

    For many members of ethnic minority groups, race and ethnicity are core parts of personal identity. By the time an adolescent becomes aware of a same-sex orientation, that identity is already well established. In a society that discriminates on the basis of race and ethnicity, strong connections with family and ethnic community are essential for survival, but support is rarely available for an adolescent's homosexual identity.

    Only among some Native American groups is homosexuality acknowledged in language and lore as part of cultural tradition, although even in many of these communities acceptance has largely been replaced by more negative mainstream attitudes. The stress of managing multiple levels of stigma, including race, ethnicity, homosexuality, and gender, requires additional sensitivity and knowledge of community resources.

    Other Stresses

    For young people who are at risk for HIV, the normal stresses of adolescence are often aggravated by poverty, violence, racism, homophobia, broken families, homelessness, and child abuse. These greatly increase their risk of becoming substance users or developing mental disorders, which can lead to risk-taking behaviors that may expose them to infections, including HIV.

    Adolescents with HIV also face other problems such as loss and bereavement, cycles of wellness and poor health, barriers to care and social services, anxiety, and depression. Poor coping skills or difficulty adapting to their diagnosis makes them vulnerable to abusing alcohol and other substances.

    Children with HIV have an increased risk of central nervous system diseases, leading to mental, language, physical, and behavioral impairments. Each of these conditions can have a significant impact on the ability to learn and on academic achievement. For example, poor memory may be related to psychological distress, but can also be a symptom of HIV-related cognitive impairment.

    Youth with HIV are at increased risk of psychiatric illness during childhood and early adolescence, and a diagnosis of major depression during adolescence appears to be on the rise. Youth with psychiatric illness also may be particularly vulnerable to HIV infection, since low self-esteem may increase the probability of risky behavior.

    One of the greatest health disparities in the U.S. is the lack of mental health and substance use treatment services for adolescents. In 2002, it was estimated that 1.4 million young people between the ages of 12 and 17 needed substance use treatment. Only 7% of substance use centers provided services for patients younger than 18, however, so only 10% of the youth needing these services actually received them. The scarcity of affordable mental health and substance use services increases risks of HIV infection, untreated mental health issues, academic failure, and homelessness.

    Mental Health Stigma

    People with mental disorders often feel stigmatized by their illness and can experience shame, grief, and anger over their diagnosis. In addition to their HIV diagnosis, adolescents in particular can perceive psychiatric care as stigmatizing. Many already see themselves as stigmatized because of their appearance, behaviors, and attitudes, so they may be resistant to accepting mental health services.

    In recent years, mental health providers have recognized the importance of bringing the service to the patient in an effort to minimize barriers to care: At-home therapy provides services to children, adolescents, and their families where they live. Although not ideal for everyone (some patients tightly guard their privacy and prefer that staff not visit them at home), this approach can be useful for some stable families. It also avoids referring adolescents to mental health services in the community, where they are known to their peers and neighbors.

    Alternative approaches can be tried in the event a mental health provider is not available in a particular community. Information on how to obtain support via the internet can fill this gap, especially for those living in rural areas. Some websites offer valuable resources that address many of the concerns associated with a new diagnosis and provide updated information on current treatments. Several youth sites have chat rooms with instant messaging. If a young person is reluctant to seek services in the community for fear of recognition, this cyber approach may be a good alternative. Having an array of choices appeals to youth who are seeking to be more involved in the decision-making process regarding their health.

    The Rights of Youth

    The parents of an adolescent generally have the legal right to consent to treatment, although many conditions exist in which the adolescent may provide consent. Adolescents have a right to confidentiality in almost all situations in which they have the right of consent. Some situations do arise in which the clinician must assess the patient's competence and determine whether a parent or guardian should be notified.

    Open communication between adolescent and adult caregiver is important, but providers are bound by the principle of patient privacy. This can become complex when culture-based family practices are introduced. For example, in some cultures, the family plays a strong role as a unit in the decision-making process, and excluding family members from that process is viewed as disrespectful. It ís best to ask privately whether the teen wants a parent or guardian present, as this acknowledges their position of authority within the family.

    Certain issues, such as physical or sexual abuse within the family, drug use, poor mental health, STIs, pregnancy, and homosexuality, will be difficult to introduce into discussions with certain parents or guardians. Mental health care providers can provide extra support in addressing these sensitive issues with parents and other family members. Discussion of these issues may cause anger, sadness, disbelief, and anxiety in the parent. Follow-up counseling is important for helping to ensure their emotional well-being.

    Adapted from, edited by Donna Futterman, M.D., and Stephen Stafford.

    Want to read more articles in the Winter 2008/2009 issue of Achieve? Click here.

    This article was provided by ACRIA and GMHC. It is a part of the publication Achieve. Visit ACRIA's website and GMHC's website to find out more about their activities, publications and services.
    See Also
    Read More Articles in the Winter 2008/2009 Issue of Achieve

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