Transitions: Working with GLBTQ Youth
Volume 14, No. 4, June 2002 This Transitions is also available in [PDF] format. By Jennifer Augustine, HIV/STI Prevention Program Associate, Advocates for Youth
In a homophobic society, many people equate sexual orientation with HIV infection. Knowledgeable youth-serving professionals know and can assure youth that no such connection exists. Most gay, lesbian, bisexual, and transgender people are not infected with HIV. Many people who are HIV-infected are heterosexual. HIV-infected youth, regardless of sexual orientation, need a supportive environment in order to remain healthy. They need to feel respected and safe and to have their right to information and services acknowledged.
Half of all new HIV infections occur among young people under 25 years old and every hour, two Americans under age 25 are infected with HIV.24 Far too many HIV-positive youth are unaware of their HIV status because they have not been tested. In a nationally representative survey, only 27 percent of sexually active youth ages 15 to 17 reported that they had been tested for HIV and only 48 percent knew "for sure" where they could go to be tested.25 Moreover, linking HIV-infected youth to health care is difficult. Most HIV-infected youth do not receive adequate health care, even when it is available.26 Barriers to health care for HIV-infected youth include lack of financial resources and insurance, mistrust of health care professionals, difficulty negotiating complex health care systems, complex medical regimens, a shortage of providers with expertise in both HIV and adolescent medicine, and concerns about confidentiality. Also, fear, denial, and cultural perspectives may play a role in a youth's reluctance to go for care. However, research pinpoints major components of effective programs that serve HIV-positive youth. Youth-Friendly Services Youth-friendly services help HIV-positive youth overcome barriers to health care. Youth-friendly services offer - Flexible hours on weekends and evenings to minimize conflict with school or work
- Accessibility through convenient locations, public transportation or tokens, and/or travel vouchers
- Intensive case management to assist youth in adjusting to complex issues, such as disclosure and partner notification, and to provide links to other services, such as mental health care, substance abuse treatment, transportation, housing, and appointment reminders
- The active involvement of young people in all program aspects, including design, planning, operations, and evaluation
- Staff's cultural competency, including sensitivity to youth culture, racial/ethnic cultures, gender, sexual orientation, and HIV status
- Décor, materials, and atmosphere that are youthful and welcoming
- Informational materials appropriate to the literacy level(s) and language(s) of the youth served.
Comprehensive Health Care HIV-positive youth need multidisciplinary case management and care—integrating primary and reproductive health care with HIV-specific care, mental health services, and secondary prevention. Youth usually prefer age-appropriate, "one-stop shopping" health care settings and providers who are familiar with their needs.26 Also, health care providers' attitudes, such as respectfulness or its opposite (i.e., condescension toward youth and homophobia) appear to be major factors in drawing youth into or deterring them from using the health care system.
A primary concern when working with HIV-positive youth is helping them adjust to their HIV status. Overall goals of primary care include determining the stage of HIV disease; monitoring immune function and viral load; identifying and addressing psychosocial needs; and providing ongoing health maintenance, access to state-of-the art treatment, education about HIV and risk reduction, and access to appropriate clinical trials.5 Like adults, youth have a range of psychosocial issues, ranging from emotional support, treatment adherence, and discrimination and isolation, to basic needs for food, shelter, and transportation. In addition, youth must deal with the developmental, cognitive, and emotional changes of adolescence. Comprehensive Mental Health Services Providers need to assess the support available to HIV-positive youth, identify support systems and available resources, and encourage HIV-positive youth to use them. Support networks may include family, friends, sexual partners, health care providers, teachers, counselors, clergy, and adult role models. Providers should also assess youth's awareness of and involvement with community-based HIV/AIDS programs. Working with speakers bureaus, volunteering, and participating in community planning groups can promote the well-being of HIV-infected youth. HIV-positive youth can also benefit from peer support groups.
Many HIV-positive youth also struggle with mental illness and substance abuse. Providers may need to deal with these issues by directly providing or by linking youth with substance abuse and mental health programs before a young person's HIV-specific care can be adequately implemented. Other Issues to Consider In addition, other issues may be important to providing quality services to HIV-positive youth. - Respect—Youth want to be treated with respect and may fail to seek needed services if they perceive a lack of respect.
- Confidentiality—Providers should assure youth that the information they share is confidential. HIV-infected youth may experience rejection, discrimination, and violence if their confidentiality is breached.
- Disclosure—Making decisions about disclosure of HIV status is an important step for HIV-positive youth who may fear rejection, harassment, and violence from family, friends, and partners. GLBTQ youth may also face added stigma due to their sexual orientation and/or gender identity. Youth may need guidance and support, including referral to support groups.
- Secondary Prevention—HIV-positive youth need information about how to prevent re-infection and new infections (with different strains of HIV and with other STIs) which could damage their immune system and interfere with health regimens. Secondary prevention offers a chance to empower HIV-positive youth with a sense of control over the future direction of their illness.
Youth-serving organizations (YSOs) and AIDS-services organizations (ASOs) play an integral role in serving HIV-positive youth. Although YSOs may have a greater understanding of youth culture, ASOs usually have more experience with HIV care and treatment. Through collaborative partnerships and coordinated services, agencies can overcome barriers to health care for HIV-positive youth.
HIV infection in young people is a challenge for youth, health care providers, and policy makers alike. Effective and sustainable programs that adequately serve HIV positive youth can be difficult to achieve. However, society has a responsibility to provide services to HIV-infected youth and the benefits are noteworthy and far-reaching. Young people have a right to services that are affordable, accessible, confidential, and youth-friendly. HIV-infected youth also have a right to be treated with respect. National Resources for HIV Positive Youth Click here to view the endnotes.
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Transitions (ISSN 1097-1254) © 2002, is a quarterly publication of Advocates for Youth—Helping young people make safe and responsible decisions about sex. For permission to reprint, contact Transitions' editor at 202.419.3420.
Editor: Sue Alford
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