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April 2003
Current Knowledge
Because of the use of newer and more effective treatments,
increasing numbers of persons living with HIV in the United States are
living longer. CDC estimates that 850,000 to 950,000 persons in the
United States are living with HIV, and that 25% of these individuals are
unaware of their serostatus.1,2 Although numerous effective
prevention interventions have concentrated on HIV-negative populations,
to date only a small number have focused on HIV-positive persons.3-5
Most people who find out that they are HIV-positive reduce their sexual
and drug-use behaviors5. However, some HIV-positive persons
have intermittent or ongoing difficulties with changing their behaviors
and focusing on HIV prevention. For some people, a relatively less
intensive intervention (e.g., a support group or structured
risk-reduction, skills-building group) will be sufficient to lead to
significant change in behavior. Other HIV-positive persons may need more
intensive prevention services (e.g., a couples or individual-level
approach) or may benefit from a combination of prevention services.
Often people who require more intensive services are struggling with
other psychosocial factors (e.g., mental illness, substance abuse,
domestic violence, homelessness, and economic stressors) that affect
their risk behaviors. The presence of psychosocial challenges may
adversely affect HIV-positive persons, decreasing their ability to
obtain and adhere to proper medical care or to reduce their HIV risk
behaviors. Integrating consideration of these issues into prevention
programs for HIV-positive persons is crucial. Agencies should 1) provide
or have access to referrals for a range of services of different
intensities, including psychosocial services and medical care; and 2)
screen HIV-positive persons and refer them to the needed level of
services.
Initially, it is important that persons who are newly diagnosed with HIV
are enrolled into medical care. Helping HIV-infected persons enter into
medical care so they can receive treatment, e.g., combination
antiretroviral therapy can help suppress viral loads to very low levels
and slow disease progression. HIV-infected persons who are receiving
medical care may also benefit from prophylaxis for opportunistic
infections and receive treatment for other health problems. Recent data
from the Antiretroviral Treatment Access Studies (ARTAS) found that
newly diagnosed persons or those otherwise not in medical care were more
likely to get into care if they had a case manager to help them compared
to those persons who were provided with passive referrals to care.6
In the ARTAS study, the case managers helped clients find a provider and
then assisted with insurance, transportation, childcare, and other
issues. This emphasizes the role for Ryan White Case Managers (RWCMs),
funded by the Health Resources and Services Administration (HRSA)
through their numerous grantees. These case managers actively link their
clients with HIV/AIDS primary care and help them to overcome other
barriers to supportive services. The work of the case managers usually
results in more clients actually becoming a part of the HIV primary care
system. A similar system tested in a statewide program in Minnesota used
disease intervention specialists (DIS) to actively and successfully link
HIV-positive youth, ages 13-22 years, to medical care and other relevant
services.7
Agencies helping HIV-positive persons enter into medical care and
providing a broad range of other services, either directly or through
actively linked referrals, could have a significant effect on reducing
the toll of the HIV epidemic in the United States. Important ancillary
services for HIV-positive persons may include
- Behavioral interventions to reduce risk behavior
- Interventions to improve adherence to complex medication schedules
- Substance abuse treatment
- Mental health treatment
- Domestic violence prevention
- Benefits counseling
- Family planning services
- Housing
Many of these services may be obtained through referrals from a HRSA-funded
RWCM. The Ryan White CARE Act is the purchaser of HIV care and services
for persons without insurance or eligibility for other programs.8
The RWCMs attempt to link HIV-positive persons to care and other
services through benefits counseling and referrals. While the RWCMs are
permitted to discuss HIV risk reduction with clients, this is not the
focus of their work, and they usually are not trained to do
risk-reduction counseling.
Agencies that choose to focus on prevention interventions for persons
living with HIV may be challenged by the newness of prevention
activities for this target population and the small number of programs
that have been evaluated for effectiveness. Several programs do exist
for HIV-positive persons that range from less intensive, group-based
interventions, to intensive, individualized interventions. These
established interventions give agencies a range of prevention options to
offer to HIV-positive persons. More than 10 other interventions are now
being tested by researchers. Those found to be effective should be
available for wider use in the next few years.
While the number of existing, effective interventions is limited, a
recent review examined the correlates of sexual risk among HIV-positive
persons.9 This article provides some guidance for agencies
developing programs by highlighting what is known to be and not to be
associated with sexual risk among HIV-positive persons. In addition, it
is likely (but not known) that existing interventions for HIV-negative
persons could be adapted for HIV-positive populations. Messages in
adapted interventions should reflect the needs of HIV-positive persons
to protect their partners as well as themselves.
This document provides a brief overview of interventions with a range of
intensities from the less intensive group-level interventions to the
most intensive risk-reduction intervention for persons with HIV,
prevention case management.
Group-Level Interventions for HIV-Positive Persons
Since the beginning of the AIDS epidemic, many of the interventions
designed for HIV-positive persons were used in support groups or in
structured group programs in which the focus of the program and the
outcomes of interest were improving mental health, social support, or
coping rather than decreasing risk behavior.10-15 Some of
these programs did measure changes in risk behaviors, and some have
found that a focus on coping or mental health is related to decreased
risk behaviors.16 After 1996, when new, more successful HIV
medications began to be used, risk reduction interventions for
HIV-positive persons became a major focus of research and programmatic
interest. More studies of HIV risk-reduction programs for HIV-positive
persons have been conducted in the past few years, although the results
are available for only three studies.
All three studies that have evaluated group-level interventions designed
to reduce HIV risk behaviors among HIV-infected persons have found that
the participants receiving the intervention reduced their HIV risk
behaviors more than the comparison group(s) on at least one measure of
risk behavior.3, 4, 17 In one study, small groups of
HIV-infected men and HIV-infected women attended a 5-session
intervention based on social-cognitive theory or a 5-session health
maintenance support group.3 The intervention condition
focused on strategies for practicing safer sexual behaviors; developing
coping skills; enhancing decision-making skills for disclosure of HIV
status to families, friends, and sex partners; and developing skills to
maintain safer sex. Those who received the intervention reported less
unprotected intercourse and greater condom use 6 months after the
intervention ended than did the participants in the comparison groups.
In another study, participants were HIV-positive persons who inject
drugs and who were entering a methadone maintenance program.4 For 6
months, participants received one of two interventions:
- Comparison intervention, which included daily methadone, weekly
individual substance abuse counseling, case management, and a
6-session HIV risk-reduction intervention
- Harm-reduction intervention, which included everything in the
comparison condition plus manual-guided group psychotherapy sessions
two times a week.
At follow-up, people assigned to the harm-reduction intervention
reported lower addiction severity scores, and they were less likely to
engage in high-risk sex- and drug-related behaviors
Finally, in the study by Rotheram-Borus and her colleagues,
HIV-positive youth were provided with 1 or 2 different modules (Stay
Healthy, a 12-session group, and Act Safe, an 11-session group).17
Those who participated in the first module had increased coping in
various domains, while participants in the second module had fewer
unprotected sexual acts, fewer sex partners, fewer HIV-negative sex
partners, and less substance use. This intervention was tested prior to
HAART and has now been updated and is named “CLEAR: Choosing Life:
Empowerment, Action, Results Intervention for youth living with HIV.”
(The manuals for the updated intervention for youth and for other
interventions by that research group are available online. The website
is included in the Resources section below.)
Two of the three effective group interventions are targeted to
particular HIV-positive populations (i.e., persons entering a methadone
program4 or youth17). Agencies working with these
populations should review the intervention materials available and use
these interventions with the identified populations when possible.
Agencies working with a more general population of HIV-positive persons
should consider adopting the intervention by Kalichman and his
colleagues for persons more suited for a group-level intervention.3
Two other studies highlight promising interventions for men with
haemophilia and their partners and men being released from prison.18,19
In both studies, however, the research or evaluation design was
inadequate to measure the effect on behavior change. Agencies working
with men with haemophilia or men about to be released from prison should
review these interventions and talk to the authors about more recent
information they might have about these programs.
Individual-Level Interventions for HIV-Positive Persons
Individual-level interventions may be appropriate for persons for
whom group-level interventions are inappropriate or are not effective in
accomplishing reductions in risk behavior. Studies that have evaluated
the effectiveness of individual-level interventions have reported mixed
results.
The study with the most successful outcome focused on HIV-positive women
and found that peer support and services, including a component that is
similar to peer-based case management, were effective in reducing risk
behavior.20 In this study, HIV-positive women were randomized
to one of two 6-month interventions. The interventions included a
comparison condition, which provided comprehensive reproductive health
services including health education and counseling on relevant topics,
or the enhanced condition, which included comprehensive reproductive
health services plus peer advocate services. HIV-positive peer advocates
worked with the women individually or in groups to share information on
condom use with the primary and secondary partners. The peer advocate
also provided information on contraceptive use. Optional support groups
met weekly while individual sessions occurred on an as-needed basis.
Three types of individual sessions were held:
- Warm-up encounters to help develop rapport
- Stage-of-change encounters in which peers counseled the
participants on specific target behaviors using stage-appropriate
messages
- Other encounters in which the peers addressed other urgent needs,
such as housing or
child custody. This last type of encounter appears similar to peer
case management.
At follow-up, the researchers found that women who were in the
enhanced intervention had improved consistency in condom use, perceived
condoms as more advantageous, and increased their level of self-efficacy
for condom use. The researchers cited four reasons for the
intervention’s success:
- Use of HIV-positive peers, which, during formative research, the
women said they preferred,
- Close collaboration with case managers and community referral
agencies due to the high unmet needs of participants,
- Tailoring of the behavior change message to address current
motivations, intentions, and partner characteristics, and
- Reinforcement of intervention messages for women in primary care
settings because most were receiving medical care.
Two studies of individual-level interventions for HIV-positive
persons found no differences in risk-reduction behaviors between the
intervention group(s) and the comparison group.21, 22 In the
study that found no differences in risk reduction between peer-based
case management and usual care,22 the authors proposed that
their findings may have been due to the brevity of contact between the
peer case managers and the participants, or to the extensive services
for HIV-positive persons available in the study city (San Francisco)
which may have made it harder for their intervention to make a
difference in the risk behavior of the participants.
Prevention Case Management
A more intensive intervention may be necessary to meet the specialized
needs of HIV-positive persons with multiple medical, social, and
economic challenges. Prevention case management (PCM) is an intensive
intervention that combines individual HIV risk-reduction with case
management to provide intensive on-going support.23-24 The
intervention is intended for persons having or likely to have difficulty
initiating or sustaining practices to reduce or prevent HIV
transmission.23
As defined by CDC’s PCM Guidance, PCM consists of the following
components:
- Identifying, recruiting into the program, and engaging clients
with the greatest need
- Screening and assessment to determine a client’s risk behavior
and psychosocial needs
- Developing a client-centered plan for reducing risk behaviors
- Conducting multiple sessions of HIV risk-reduction counseling to
maintain preventive behaviors
- Coordinating services with follow-up regarding success of
referrals and need for additional services including coordinating
with other types of case managers such as Ryan White funded case
managers, Medicaid case managers, or other case managers, if
appropriate.
- Monitoring and reassessment of clients’ needs, risks, and
progress
- Discharging from PCM upon attainment of risk-reduction goals
PCM guidelines also indicate that the following are essential:
- Small client load (12–20 clients) to allow intensive case
management
- Integrated services and coordination of community and other
service providers
- Well-defined evaluation plan
Objective
The purpose of this document is to encourage and guide health
departments and community-based organizations in providing specialized
assistance through PCM to HIV-positive persons with multiple and complex
HIV risk-reduction needs.
Procedures
- Identify potential clients and collaborate with community-based
organizations (CBOs), health departments, sexually transmitted
disease (STD) clinics, HIV clinics, hospitals, clients, and others
to refer high-risk HIV-infected clients to PCM. The PCM approach is
based on the premise that some people may not be able to give high
priority to HIV prevention when faced with problems that they view
as being more important or more immediate. PCM should be reserved
for persons willing to discuss intimate sexual and drug-use
behaviors. Eligibility for PCM should be prioritized to include
clients presenting with multiple risk factors, such as a recently
acquired STD, multiple sex or needle-sharing partners in the past 3
months whose HIV status is unknown or negative, and psychosocial
issues that impact these risk factors (e.g., mental illness,
substance abuse, homelessness, and violence/coercion).
- Engage in PCM with HIV-infected persons who report high-risk
behaviors for HIV transmission. Because the clients who need PCM
have multiple risk factors, substantial resources may be needed to
identify, engage, and recruit them.
- PCM should be conducted by professional counselors and social
workers with experience working with high-risk clients (e.g.,
licensed social workers). Client case loads should remain small
(12–20 per prevention case manager). If a jurisdiction has ample
case management resources, the prevention case manager may perform
fewer case management tasks and more risk-reduction activities. In
such a case, the case load may be slightly larger for the prevention
case manager.
- Develop screening and assessment instruments customized to the
target population, including some or all of the following topic
areas: health, adherence to treatment, incidence of STD,
substance/alcohol use, history of incarceration, mental health,
sexual history, social support, skills to reduce transmission,
barriers to safer behavior, strengths and competencies, and
demographic information. Develop guidelines for data collection and
performance evaluation measures. These data are crucial for
determining referral and client needs and providing effective PCM.
- At the time of initial assessment, case managers must provide
clients with a voluntary informed consent document to be signed that
assures confidentiality for the activities related to PCM.
Communication with other providers or referral sources about a
particular client requires obtaining written, informed consent from
that client to allow for sharing relevant information. All
information about clients should be securely stored in locked
cabinets, and this should be communicated to clients. Providing
these safeguards is one of the first steps to building a trusting
relationship with PCM clients and engaging them in the process.
- Prevention case managers, in collaboration with individual
clients, should develop a client-centered prevention plan with
measurable behavioral outcomes for reducing high-risk behaviors and
maintaining low-risk behaviors. Risk-reduction activities should
include an individualized risk-reduction session and may be
supplemented by counseling for couples or groups. Risk-reduction
activities should be theory-based and tailored to a person’s life
circumstances. Clients must be provided education about the
increased risk of HIV transmission associated with having other
STDs. In addition, clients must be provided with partner counseling
and referral services (PCRS) so that partner may be confidentially
notified of their potential exposure to HIV.
- Prevention case managers should provide active coordination of and
linking to supportive services such as medical services,
psychological treatment, substance abuse treatment, STD treatment,
various social services, and other HIV prevention services.
Agreements should be established to ensure availability and access
to key service referrals for the target population. A standardized
referral process should be developed including a referral tracking
system.
- Prevention case managers should meet with clients regularly so
that they can provide monitoring and reassessment of the clients’
needs, risks. At regularly designated times the case manager and the
client should revise the Prevention Plan and accompanying activities
as appropriate.
- Prevention case managers should establish a time frame for
discharge from PCM after the client meets his or her risk-reduction
goals or if the client is no longer participating in the program.
- Incentives may be considered for use any time during PCM from
engagement until discharge, if the jurisdiction and the funding
source approve of their use. Appropriate incentives may include
transportation cards or tokens, vouchers for food or other
necessities, or in some cases, cash. The use of cash and non-cash
incentives should not be excessive so as to be coercive.
- Prevention programs should provide a well-defined evaluation plan.
Working with Partners and Integration into Existing Services
- Clients may be identified and referred to PCM through a variety of
sources including HIV testing facilities, such as public clinics and
primary care facilities. Agencies that currently serve HIV-infected
persons in an integrated setting (e.g., a setting where numerous
services related to HIV are available, such as medical and pharmacy
services and psychosocial support resources) or CBOs that are
closely linked to these services, in a way that makes them highly
accessible, are most appropriate for PCM programs. Clients who are
referred to PCM but are not eligible should be referred to other
appropriate services.
- In some PCM settings, clients may already have a Ryan White or
other case manager. The PCM Guidance provided two standards that
should be followed in all jurisdictions:
- Explicit protocol in place for structuring the relationship
with Ryan White CARE Act case management providers or other case
management providers must be established and should detail how
to transfer and/or share clients
- No duplication of Ryan White or other case management for
persons living with HIV, but PCM may be integrated into these
services.
In practice this means that jurisdictions should work together to
coordinate services between these two programs. Generally, Ryan
White-funded case management is intended to ensure coordination and
continuity of needed entitlements, medical care and treatment,
housing, and other social services. They are allowed to discuss
risk-reduction behaviors with clients, but they often do not have
the time or the training in behavioral theory to do so in an
effective manner. PCM is first and foremost an HIV-prevention
activity to reduce the transmission of HIV infection. The
integration of these two services is affected by the services
available in the community and the eligibility requirements for the
various programs.
Programmatic Considerations
- Risk reduction needs vary across persons and time. Agencies
working with HIV-infected clients should avoid a one-size-fits-all
approach to helping clients reduce their risk, but they should focus
their PCM efforts on those with the greatest prevention need (e.g.,
those who are most likely to transmit HIV to their sexual or drug
using partners).
- Intervention science has not developed to the point where there is
an easy formula to match clients to interventions. But given scarce
resources, agencies should focus on the most effective interventions
for clients who are at greatest risk for transmitting the HIV virus.
Vignette
In May 2000, the Kansas City Free Clinic, an AIDS service organization
offering a broad range of services to HIV-positive persons, established
a PCM program for high-risk HIV-negative persons and newly diagnosed
HIV-positive persons who were not already connected with the
community’s system of care and support. Clients are referred into PCM
services through a variety of clinic programs including HIV counseling
and testing, HIV primary care, Ryan White HIV-funded case management,
and prevention education, as well as from a variety of providers in the
community. Once they are eligible, the prevention case manager initially
meets weekly with participants and has telephone contact between visits
as needed. The content of a typical case management session includes the
review of the risk-reduction plan, follow-up on community referrals, and
utilization of behavior change techniques such as motivational
interviewing. Disclosure of HIV status is addressed in the ongoing risk
reduction counseling. Incentives such as bus passes, movie passes, gift
certificates, and safer sex supplies are utilized as funding permits.
PCM is integrated into the clinic through staff training, development,
joint client case conferencing, and client service delivery protocols.
The prevention case managers coordinate prevention services with the
Ryan White-funded case managers, HIV primary care providers, and the
peer-to-peer treatment adherence program. Prevention case managers have
completed training in HIV/AIDS/STD knowledge, prevention counseling, CDC
PCM Guidance, and prevention with HIV-positive persons, and they receive
ongoing training. Case managers each have between 30-60 individuals on
their caseloads each month, they meet with 40% of their clients monthly
for risk reduction counseling services, and in each quarter, about 5
clients are discharged from PCM. The clinic employs a variety of quality
assurance and evaluation methods for the staff and the program. For
example, in December 2002, the PCM staff conducted a focus group with
their HIV-positive clients, who were primarily MSM, to educate staff
about the prevention needs of MSM and strengthen the clinic’s PCM
program. The staff found that clients needed: 1) more support and
information on substance abuse, 2) flexible times to meet with PCM
staff, and 3) more information about topics such as daily struggles,
medications, HIV health conditions, and general health issues.
Monitoring Implementation
CDC grantees receiving HIV prevention funds will be required to
routinely report the following indicators to monitor their HIV
prevention interventions with persons living with HIV, including
prevention case management programs.
CDC’s HIV Prevention Program Performance Indicators*:
- Proportion of HIV infected persons who completed the intended
number of sessions in PCM (I.1)
- Proportion of the intended number of HIV infected individuals to
be reached who were actually reached (H.2)
- The mean number of outreach contacts required to get one HIV
infected person to access prevention case management services (H.3)
- Percentage of HIV infected persons who, after a specific period of
participation in a prevention case management program, report a
reduction in sexual or drug using risk behaviors or maintain
protective behaviors with seronegative partners or with partners of
unknown status (I.2)
Other program measures:
- Number of persons receiving prevention interventions that are
diagnosed with a new STDs, indicating transmission risk behavior
- Demographics of persons receiving prevention interventions and
overall HIV-infected persons in the community (e.g., race/ethnicity,
gender, socioeconomic status)
- Collection of HIV transmission risk data in accordance with CTR
Guidelines
* The CDC Technical Assistance Guidelines for Health Department HIV
Prevention Program Performance Indicators provides information on
setting baseline, target, and indicator specification including
appropriate data sources, calculations and reporting issues. Note:
Performance indicators may have been modified to reflect specific
population or setting characteristics.
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UCSF, AIDS Policy Research Center, Prevention with Positives Resources |