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Transitions
Volume 14, No. 4, June 2002
This Transitions is
also available in [PDF] format.
Serving HIV-Positive Youth
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.
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
Click here to view the Publications Catalog and/or
to order this publication.
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