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Issues at a Glance
Serving
HIV-Positive Youth
Also available in [PDF] format.
Half of all new HIV infections in the United States occur among people under
age 25 (1). Every hour, two Americans aged 13
to 24 are infected with HIV.(1) Moreover, far too many HIV-positive youth
are
unaware of their HIV status because they have not been tested. Relatively
few youth
know where to go for HIV counseling and testing. In a nationally representative
survey of teens, ages 15 to 17, only 27 percent of sexually experienced
youth said they had been tested for HIV and only 48 percent knew "for sure" where
they could go to be tested (2).
Linking HIV-infected youth to health care is difficult. Most HIV-infected
youth do not receive adequate health care, even when it is available (3).
Barriers to health care for HIV-infected youth include lack of financial
resources and/or insurance, mistrust of health care professionals, difficulty
negotiating
complex health care systems, complicated 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 contribute to a young
person's reluctance to go for care. However, research pinpoints important
components
of programs that effectively 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, including weekends and
evenings, to lessen conflicts with school or work
- Walk-in appointments, to encourage youth
to use health care services
- Accessibility—through convenient locations,
public transportation, tokens and/or travel vouchers,
and transportation assistance for rural youth
- Intensive case management to assist young
people with complex issues, such as disclosure
and partner notification, and to link youth to mental health care,
substance abuse treatment, transportation, and
housing, as needed
- Active involvement of young people in
all aspects of the program's planning, operations,
and evaluation
- Culturally competent staff who are sensitive
to youth's culture and to racial/ethnic cultures
as well as to issues of gender, sexual orientation, and HIV status
- Services appropriate to the clientele—for
example, street outreach for homeless youth and
tailored support groups for gay, lesbian, bisexual, transgender,
and questioning (GLBTQ) youth, substance users,
and teen parents
- Culturally appropriate services, designed,
planned, staffed, and operated, at least in part,
by members of the target population
- Décor, materials, and atmosphere
that are youthful and welcoming
- Informational materials appropriate to
the language(s) and literacy level(s) of the youth
served.
Comprehensive Health Care
Research shows that
HIV-positive youth need multidisciplinary case management and care. Such
care integrates primary care with HIV-specific care, mental
health services, sexual health care and secondary prevention (3).
Moreover, youth usually prefer age-appropriate, "one-stop shopping" in health
care settings and from providers who are familiar with their needs (3).
Health care providers' attitudes, such as respectfulness or its opposite (i.e.,
condescension towards youth and/or homophobia), appear to be major factors
in drawing youth into or deterring them from using the health care system.
When working with HIV-positive youth, another significant issue is helping
them adjust to their HIV status.
Overall goals of primary care include
- Determining the stage of HIV disease
- Providing ongoing health maintenance
- Monitoring immune function and viral load
- Providing education about HIV and risk
reduction
- Providing access to state-of-the art treatment
and to appropriate clinical trials
- Identifying and addressing psychosocial
needs (3).
HIV-positive youth have a wide range of psychosocial needs. They need
emotional support to promote quality of life and treatment adherence.
They need support to end isolation and to challenge discrimination. They
also need food, shelter, and transportation. In addition, HIV-infected
youth must deal with the developmental, cognitive, and emotional changes
of adolescence. The goals of psychosocial care for HIV-positive youth
include
- Identifying and addressing crises (i.e.,
suicidal behavior, homelessness)
- Providing access to benefits, entitlements,
and services
- Promoting adherence to medical regimens
- Assessing and expanding social support
- Supporting youth in self-care and life-enhancing
practices
- Identifying and treating chronic problems
(i.e., depression, substance abuse)
- Promoting skills to live independently
and to make the transition to adulthood
- Reinforcing and sustaining safer sex behaviors
- Promoting harm reduction and encouraging
drug treatment (4).
Comprehensive Mental Health Services
Providers
need to assess the emotional support available to HIV-positive youth.
Providers can help youth to identify support systems and available resources.
They can encourage youth to use resources and support. 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 and with
other HIV-infected people. Working with speakers bureaus, volunteering, and/or
participating in HIV community planning groups promotes young people's well-being.
HIV-positive youth can also benefit from participating in peer support groups.
Such groups reduce the isolation and stigma of HIV and provide emotional support
as well.
Many HIV-positive youth struggle with mental illness and substance abuse.
These issues may strongly affect how the young person copes with his/her
HIV status,
including adhering to a treatment regimen. Before implementing the young
person's HIV-specific care, providers may need to deal with these issues,
either by
providing substance abuse and/or mental health care or by linking youth with
such services.
Other Issues to Consider
In addition to offering
youth-friendly services and comprehensive physical and mental health
care, agencies serving HIV-positive
youth need to consider
other issues that affect youth's ability and willingness to seek and profit
from health care.
Respect—Youth want to be treated with respect. HIV-infected
young people may fail to seek needed services or may refuse services
if they perceive a lack of respect.
Confidentiality—Providers should assure youth that the
information they share is confidential. Research shows that fearing their
confidentiality
will be breached is a major deterrent to many young people's seeking
health services. The issue is particularly important for HIV-positive
youth, who
may experience rejection, discrimination, and/or violence if their confidentiality
is breached.
Disclosure—Making decisions about disclosure of HIV
status is an important step for HIV-positive youth who may have cause
to fear rejection
and violence from family, friends, and partners. GLBTQ youth may have
to confront additional stigma due to their sexual orientation and/or
gender
identity. Heterosexual
youth, infected with HIV through sexual intercourse or injection drug
use, may fear disclosing drug use and/or risky sexual behaviors (4).
Providers should initiate discussions about disclosure and partner notification
and inform the young person about the advantages and disadvantages of disclosure.
HIV-infected youth may need support and guidance about when and how to
disclose their HIV status to sexual partners and whether and how to disclose
to family,
friends, co-workers, and others. Young people may find assistance from
peer support groups in exploring their best options around disclosure.
Secondary Prevention—HIV-positive youth need information about
how to prevent new sexually transmitted infections (STIs) as well as re-infection
with different strains of HIV—any of which could damage the 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 life and illness. Successful secondary prevention programs promote
self-esteem
and self-efficacy, build communication and social skills, provide basic
information about safer sex and other risk reduction strategies, and
offer peer support.
Treatment Adherence—Youth's adherence to treatment may
be complicated by issues such as denial, fear, misinformation, lack of
trust
in doctors, doubt about medications' effectiveness, low self-efficacy,
lifestyle, and lack of social support. Adherence may be especially difficult
for youth
faced with issues, such as homelessness or substance abuse, that force
them to deal daily with finding shelter and surviving.
Providers can promote treatment adherence by keeping regimens simple
and by working in partnership with the youth to develop individualized
treatment
plans
and strategies that will overcome obstacles to adherence. Regimens should
fit an adolescent's developmental and cognitive stage. When developing
a treatment
regimen for HIV-positive youth, providers need to consider and address
whether the adolescent—
- Believes that medications will help
- Trusts the health care provider
- Has social support
- Has disclosed his/her HIV status and to
whom
- Has support systems and resources available
- Is ready to change risk behaviors
- Is ready to change behaviors that will
negatively influence the course of HIV illness.
Providers need to reward and positively reinforce youth's efforts at
treatment adherence. Youth may also need encouragement in order to sustain
behavior change.
Medical Insurance—Paying for care is a significant problem
for most young people. A recent study found that one in seven adolescents was
uninsured, and the proportion of uninsured youth was even higher among those
with a family income below federal poverty lines as well as among African American
and Latino youth (5). Providers can help tremendously
by assisting youth to obtain treatment through Ryan White services and Medicaid
(4).
Housing—Housing is an essential element in the safety net
of HIV-positive youth. Some youth are put out of their homes when their HIV
status becomes known. Other youth are at great risk for HIV infection because
they are homeless. Many homeless youth engage in survival sex—exchanging sex
for money, food, or shelter in order to survive on the streets.
Youth who are infected with HIV are more likely to follow complex medical regimens
and to remain healthy if they have a safe place to live, an address where providers
can reach them, and a place to keep medications and other necessities. Providers
can help by asking questions to ascertain whether youth have stable, safe housing.
If a young person is not living in a stable and safe environment, providers
can assist by linking youth with social services agencies, shelter services,
and AIDS-services organizations (ASOs).
Meeting the Comprehensive
Needs of HIV-Positive Youth
Youth-serving organizations (YSOs)
and ASOs both can play integral roles in serving the needs of HIV-positive
youth. YSOs generally have a greater
understanding
of youth and youth culture. ASOs have more experience with care and treatment
of HIV-infected people. Through collaborative partnerships and coordinated
services, YSOs and ASOs may overcome barriers to care for HIV-positive
youth.
Conclusion
HIV infection in young people is
a challenge for youth, health care providers, youth-serving
professionals, advocates,
and policy makers. Achieving effective
and sustainable programs to adequately serve HIV-positive youth is
important to assuring the health and development of these
youth. HIV-infected youth
as well as young people at risk for HIV infection need to be identified
in HIV
counseling and testing programs and linked to comprehensive mental
and physical health care. Youth 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.
Resources for
HIV-Positive Youth
National Resources
Other Web Site Resources
www.thebody.com
www.whatudo.org
State Resources
For resources searchable by
state, visit Advocates' online database .
References
- White House
Office of National AIDS Policy. Youth and HIV/AIDS
2000: A New American Agenda. Washington, DC:
The Office, 2002.
- Henry J. Kaiser
Family Foundation. National Survey of Teens on HIV/AIDS.
Menlo Park, CA: The Foundation, 2000. [http://www.kff.org/]
- Futterman D,
Chabon B, Hoffman N. HIV and AIDS in adolescents. Pediatric
Clinics of North America 2000; 47:171-87.
- Ryan C, Futterman
D. Lesbian and Gay Youth: Care and Counseling.
[Adolescent Medicine State-of-the-Art Reviews;
v 8, no 2] Philadelphia, PA: Hanley & Belfus,
1997.
- Brindis C et
al. Adolescents and the State Children's Health
Insurance Program (CHIP): Healthy Options for Meeting
the Needs of Adolescents. San Francisco,
CA: National Adolescent Health Information Center,
University of
California, 1999.
Written by Jennifer Augustine
November 2002 © Advocates for Youth
Updated March, 2008
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