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Tools for Grantees: TA Call Report: Outreach - Getting People into Care June 2002

Contents:


Summary: Outreach - Getting People into Care
AIDS has often been on the front pages of the nation’s newspapers for over 20+ years and yet many people living with HIV, perhaps most, may not be in care. Of the estimated 850,000 to 950,000 people living with HIV in the U.S., anywhere from 42-59 percent are “untested, untreated, or both,” according to estimates released in early 2002 by the Centers for Disease Control and Prevention (CDC). CARE Act programs are at the center of the battle to change this given thinking — put into law in the form of the CARE Act Amendments of 2000 — that care programs are a good place to do more HIV outreach. The legislation does this by broadening the CARE Act role in early intervention and integrating care and prevention work by endorsing expanded use of outreach and HIV counseling and testing.

With this mandate, CARE Act programs that are already serving an estimated 533,000 persons — those living with HIV and their families — have to make room for more outreach. Strategies for enhancing outreach were explored in a June 2002 HRSA HIV/AIDS Bureau national teleconference with CARE Act grantees. In the call, HRSA/HAB outlined its new outreach policy and provided a forum for grantees to share their ideas about conducting outreach. This issue of CARE Act TA Call Report summarizes the call’s presentations and listener questions, which included the following.

  • Outreach: The Need and the Policy. Reasons why people may not be in care are varied, suggesting that outreach efforts should be adapted to local circumstances. National data cited above about people not in care are backed up by CARE Act data from Title III that show many new clients are entering care late in their HIV disease as evidence by low CD4 counts. The Bureau’s outreach policy, released in June 2002, gives grantees guidance in tackling their mandate to undertake outreach through these steps: (1) plan, (2) focus on high-risk persons, (3) link clients to services that reflect their needs, (4) ensure quality in the outreach that is done, and (5) measure its effectiveness.
  • Consumer Ideas on Outreach. From a consumer perspective, providers can be more effective in getting people with HIV into care, and help them stay there, if they keep in mind the consequences facing many clients who admit they have HIV disease. Stigma, loss of family and friends support, violence, and lost of employment often influence a person’s decision not to seek care or to disclose their illness. Providers must establish long term partnerships with clients, including focusing on services they need to help them stay in care, like support services and information about HIV medications and living with side effects. Providers should also broaden their outreach by raising HIV with all their clients and offer HIV counseling and testing as appropriate. Consumers, for their part, need to respond to the changes in lifestyle that HIV disease requires, which can be better managed through skills learned in HIV client education.
  • Views from the Field. Grantees are approaching outreach from many angles.
  • Minnesota is assessing its current outreach activities to plan and implement needed changes. This includes using surveys and other means to examine ways in which current care and prevention programs are working together.
  • A grantee program in New York City has made HIV care integral to all of its primary care clinic work and is now absorbing more prevention work in the clinical setting. The program also runs multiple street and peer-based outreach efforts to bring more clients in care.
  • A minority community grantee in St. Louis with a track record in outreach is one of 17 new programs funded by the Bureau’s Special Projects of National Significance (SPNS) program to evaluate the effectiveness of outreach strategies.

In follow-up to the call, the Bureau worked to address listener questions and requests for more details about outreach and has compiled a selection of tools and resources, such as assessment tools used by Minnesota and an outline of how some grantees train their staff.

“Outreach: Bringing HIV Positive Individuals Into Care” is the topic of the June 2002 issue of HRSA CAREAction, the Bureau’s CARE Act program newsletter. See the issue at http://hab.hrsa.gov (Publications) or contact the HRSA information Center at 888.ASK.HRSA. To subscribe to the newsletter, email tlewis@circlesolutions.com.

 

“We know that getting people into care is complicated because clients have complex problems. What is more certain is that many people with HIV who are not in care will likely become CARE Act clients because their poverty and lack of insurance are certainly chief reasons they are not in care.”
— Dr. Deborah Parham,
HRSA/HAB Administrator

HRSA/HIV/AIDS Bureau Perspective: Outreach and the CARE Act TOP
Angela Powell-Young, Acting Director, Division of Training and Technical Assistance:

Outreach is not new to the CARE Act and started when the very first grantees did case finding 12 years ago to bring clients into their new programs.

With the advent of treatment advances, outreach is more critical because there is more to offer clients. Many persons get CARE Act services—over 500,000 persons living with HIV and their families. However, national data indicate that a large segment of the population with HIV/AIDS, estimated to be 42% - 59%, is not receiving care. This is a combination of those who know their HIV status and those who are unaware they are HIV-positive. (The CARE Act’s focus is on the roughly one third of HIV-positive individuals who know their HIV status but are not receiving care (about 200,000 persons), although grantees can conduct activities to identify those who do not know their HIV status.)

These numbers may underestimate the magnitude of people with HIV not being in care because many enter care fairly late in their disease. The HIV Cost and Services Utilization Study (HCSUS), the nation’s largest HIV/AIDS patient study shows this, as do HRSA/HAB data from the Title III Early Intervention Services (EIS) program. Nearly 75 percent of new Title III EIS clients enter a care system when their CD4 counts are under 500. Over half already have had an AIDS-related condition or have showed symptoms of HIV infection. Other data show the same, such as CDC’s Serostatus Approach to Fighting the Epidemic (SAFE) project, where 43 percent of individuals learned their HIV status within one year of developing AIDS.

These numbers may underestimate the magnitude of people with HIV not being in care because many enter care fairly late in their disease. The HIV Cost and Services
Utilization Study (HCSUS), the nation’s largest HIV/AIDS patient study shows this, as do HRSA/HAB data from the Title III Early Intervention Services (EIS) program. Nearly 75 percent of new Title III EIS clients enter a care system when their CD4 counts are under 500. Over half already have had an AIDS-related condition or have showed symptoms of HIV infection. Other data show the same, such as CDC’s Serostatus Approach to Fighting the Epidemic (SAFE) project, where 43 percent of individuals learned their HIV status within one year of developing AIDS.
“Failure to get into care not only delays receipt of beneficial HIV treatment but also decreases the potential for education efforts to prevent the spread of HIV to others.”
— Angela Powell Young

The statistics show that CARE Act programs still need to reach a large number of people. Outreach can play a role. This is a challenge, because research indicates that those living with HIV/AIDS forego or drop out of care for a number of reasons. Many are quite obvious, such as simply not knowing one’s HIV status, having never been tested for HIV and not returning for test results. Other reasons include:

  • Lack of health insurance
  • Substance abuse issues
  • Low educational attainment
  • Unemployment
  • Competing needs like the lack of food, clothing, or stable housing
  • Complex nature of health care systems such as hours of operation, locations, and limited clinician skills in working with HIV clients
  • Not understanding how to get care
  • Side effects of HIV medications, and
  • Not feeling sick and therefore not recognizing the importance of seeing a physician.

HIV/AIDS Bureau’s Outreach Policy TOP

HAB’s policy on outreach reflects the most robust message found in the CARE Act Amendments of 2000, which is: identify more individuals with HIV disease and get them into care. It explains how grantees can conduct outreach with CARE Act funding by enabling more flexibility in Titles I and II to fund and operate outreach activities. The policy allows outreach that focuses on HIV-infected persons who do and do not know their HIV status. However, the priority for CARE Act grantees is on outreach targeted to those who know they are infected but are not in care and to address those least likely to be in care. CARE Act outreach cannot focus on uninfected individuals and should not duplicate HIV prevention outreach, such as social marketing.

The policy directs grantees to do the following.

Plan Outreach Strategies. Grantees should use their needs assessments, priority setting, and comprehensive plans to design outreach strategies to meet local needs. In particular, local needs assessments will help grantees tailor strategies to meet the needs of diverse populations. Additionally, outreach strategies should be coordinated with State and local HIV prevention programs to avoid duplication of efforts.

Focus on High Risk Communities. Grantees should target outreach to those most likely to have HIV or to those at highest risk. One way to do this is to coordinate with “key points of entry” to care, such as shelters, hospital emergency rooms, HIV counseling and testing sites, STD clinics, correctional facilities, and other places that CARE Act clients may seek services. (Information on how to coordinate with these programs is included in the “Early Intervention Services” chapter in the newly-updated Title I Manual and Title II Manual.) Targeting also means doing outreach in a way that will be receptive to clients, like the location or time of day or the cultural appropriateness of the outreach.

Link Clients to Services. The focus of outreach, for the CARE Act, is to connect people with HIV to primary health care. This can only happen if grantees consider the barriers that prevent clients from seeking care, and reflect those in their outreach activities. For example, if a client’s substance abuse has kept him from seeing a doctor, then a grantee should coordinate the provision of substance abuse treatment as a way to help that client keep appointments.

Provide Quality Outreach. Grantees should use trained staff to conduct outreach activities. Outreach workers should know how to implement strategies and effectively link clients to care. Training should also include clinical providers and others who play an important role in keeping an HIV-positive client engaged in the health care system.

Ensure Effectiveness. Grantees must measure and document the effectiveness of their outreach activities. Outcome measures could include the number of individuals in care who were previously not in care, or the increase in number of individuals who know they are HIV-positive but were previously unaware of their HIV status.

The CARE Act enables grantees to tailor outreach programs to the distinctive needs of their client populations, the availability of other resources, and other factors unique to the environment in which they operate their programs.

Closer ties between prevention and care can enhance outreach. The CARE Act Amendments of 2000 promote closer ties in care and prevention planning and require better links with prevention providers. Additionally, HRSA is working with CDC on research and evaluation and development of guidelines such as how to do HIV counseling and testing. One example in particular is the push for care providers to do prevention work with their HIV-positive clients, such as addressing risky sexual and substance abuse behaviors—and risk reduction.

Evaluating Outreach: Some Tools

  • Client chart reviews (e.g., examination of case-management and medical records; review of biological markers that show changes in disease progression; and notes on patient behaviors, such as kept or missed appointments).
  • Client surveys (e.g., measure client satisfaction, changes in knowledge about treatments, and changes in health beliefs and self-reported practices).
  • Consultation among service providers and weekly project team reviews
  • Individual interviews with provider staff.
  • Assessment of interventions to see if they match best practices models.
  • Process evaluation to ensure that implementation takes place according to plans.

From the Field TOP
Below are presentations from three grantee speakers on the National TA Call on Outreach. Minnesota engaged in a statewide review of its outreach capacity. Grantees from New York and St. Louis have multiple outreach efforts underway—from clinic-based to street efforts. Their insights range from how to train staff to how to work with other programs to get the outreach job done.

A Consumer Perspective: Tony’s Story
Tony believes he has been HIV-positive since 1982. He only found out six years ago.

It all started one day when a college professor noticed that Tony was coughing all the time and that he was coughing up blood. The professor urged him to go to the campus medical clinic, where they tested him for Tuberculosis. They also suggested an HIV test.

In hindsight, Tony realizes that he showed symptoms of HIV for years. Lesions on his back and buttocks and chronic pneumonia were two of them. Yet, his physicians never screened Tony—in part he thinks because he doesn’t fit the “profile” of a person who would have HIV.

After being diagnosed, Tony was referred for care and received case management. He credits his case manager with helping him stay in care and “getting control of his life.” Tony said he was able to get housing, join a support group, and receive help in creating a budget. He also began combination therapy, which he stuck with despite experiencing “horrible side effects.”

Though he had support services in place, at times Tony felt alone and abandoned. He also realized that having HIV was a problem for some of the people in his life. He turned to a person close to him for support. That person wound up beating him. When he reported the beating to the police, Tony says they were not helpful. His efforts to seek support from his church were also disappointing. In Tony’s words, they let him know that he was “someone they didn’t want to deal with.” The impact of stigma, he said, is real and devastating. He feels the fear of being rejected by family and friends can, and does, prevent people with HIV/AIDS from seeking help or support. (See A Word About Stigma.)

A Word About Stigma

Research indicates that HIV/AIDS-related stigma can have a strong influence on a person’s decision to be tested for HIV. And with good reason. A Kaiser Family Foundation survey, conducted in 2000, found that 33% of Americans would be concerned that people would think less of them if they found out they had taken an HIV test. The survey also found that 28% of people said they would feel uncomfortable working with someone who is HIV-positive.

A 2001 review of HIV intervention studies, conducted by the Population Council, suggests that the effects of stigma can be reduced by providing information and counseling, fostering consumer coping skills, and increasing provider contact with clients. The review examined interventions that sought to increase acceptance of people living with HIV/AIDS among the general populace, as well as help those living with HIV respond to stigma.

See Stigmatization and Discrimination, a fact sheet written by the Population Council for health professionals and others that reports on studies concerning stigmatization and discrimination against persons living with HIV/AIDS and their potential impact on HIV prevention activities.

As a volunteer for an AIDS service organization and as a member of a Title I planning council, Tony has taken his experiences and turned them into opportunities to help others. He also says, “In the six years since my diagnosis, I’ve learned many things I wish I had known earlier in my illness.” He has some recommendations for those working with people who are living with HIV:

  • Getting People In the Door. Outreach workers and care providers must be sensitive to how hard it is for someone to admit that they have HIV/AIDS. Health care providers should also discuss HIV with all their patients, regardless of how they assess risk.
  • Helping People Stay in Care. Support services are critical to keeping people in medical care. HIV drugs can also provide an impetus for clients to stay in care. However, physicians/providers should provide clients with clear instructions about how to take HIV/AIDS medications, and information on possible side effects. Also, providers must be clear with clients about the consequences of interrupting drug regimens, and urge clients to contact them if side effects become severe or unbearable.
  • Client: Face the Need for Change. It is important that clients recognize the need for lifestyle changes after a diagnosis. Client education activities should address this issue.

Outreach Terms

Street outreach means delivering activities in the community where people live, work, socialize and have sex, such as bars/clubs, community centers, parks, gay pride festivals, churches, STD clinics and others.

Peers are clients who work in programs and who come from the same social, socioeconomic, and demographic backgrounds as potential clients of the program.

Outposting involves placing peers or staff at partner agency sites to conduct outreach.

Inreach involves recruiting clients from other programs within an agency.

Partner notification involves working through clients to connect their sex partners to HIV testing, and prevention services and, if necessary, care services.

Assessing the Need for Outreach Minnesota Establishes a Path to Care TOP
The Linkages project in Minnesota is looking at ways to better integrate HIV prevention and care programs (planning, administration, implementation) so they can better identify people with HIV and refer them to care. The effort also seeks to integrate HIV prevention services for HIV-positive individuals. Work is being conducted by an ad-hoc workgroup, whose formation was a collaboration by the two Statewide planning bodies for HIV care and prevention, convened by the co-chairs of each group. The workgroup will meet for one year and then make recommendations back to the Statewide planning groups on strategies for increasing coordination in the areas of HIV testing, counseling and outreach, and other services such as health education/risk reduction, discharge planning, and case management.

“Due to the historical distinction between prevention and care in funding streams,” said Debra Ehret, consultant with the State health department and coordinator of the Linkages workgroup, “Minnesota currently has no comprehensive system for [coordinating care and prevention activities].” The Linkages workgroup, explained Ehret, seeks to address this disconnect.

The workgroup has suggested research into what it terms a “path to care” in planning outreach and referral activities. They see that people with HIV take many routes into a care system; often, the first stop is not the doctor’s office. While medical care is important, other client needs may take precedence, and addressing those needs can help pave the way for the client’s entry into treatment. Depending on the person’s needs, he or she may seek housing assistance or enroll in substance abuse treatment or meal delivery program. “By interviewing individuals who have tested positive,” said Ehret, “community agencies can identify the most common immediate needs and effective methods for keeping people on a path to care so as not to lose them once the [HIV] diagnosis is made.”

The Linkages workgroup is also examining ways to increase awareness of the symptomology of HIV and AIDS among both providers and the public. “That means building knowledge about what people with HIV experience as signs of their illness,” said Ehret. The goal is to respond to an identified need for providers to better identify clients who might be HIV-positive. (The call’s consumer presenter echoed this potential gap in his ideas for expanding risk assessment of all clients.)

Ehret added that part of enhancing provider knowledge is training and public awareness campaigns to help dispel misperceptions about who is at risk for HIV and to help get individuals into care sooner. They did a resource inventory of current resources in the State to determine training underway to support outreach activities. Next, they will identify any training gaps and ways to improve provider capacity. Among current training efforts identified: the Midwest AIDS Education and Training Center under CARE Act funding has risk assessments and quick reference cards for clinicians. The Minnesota AIDS Project maintains a directory of referral sites for counseling and testing centers, and the State health department offers free HIV/STD 101 sessions.

The group is also identifying “points of entry” sites where HIV counseling and testing is occurring, or could take place, and assessing capacity to do this work. These “points of entry” are sites identified in the CARE Act as places that grantees should coordinate with, such as hospital emergency rooms and STD clinics. Linkages is also looking at other agencies they know of that serve high risk populations, such as methadone clinics and youth health centers. Ehret conducted a targeted telephone survey of 35 sites to ask: (1) do programs conduct risk assessments of their clients; (2) do programs have a protocol for recommending HIV testing and what is it; (3) what kinds of HIV tests are being used; (4) how are people informed of their test results; (5) what percentage of clients come back for test results; and (6) how are staff trained to perform HIV testing and counseling.

Barriers. Among the results to date is discovery of barriers to providing HIV counseling and testing services at points of entry sites, such as:

  • Cost of staff time in doing post-test counseling.
  • Cost of HIV tests.
    * Difficulty in following up with clients in short-term facilities, such as emergency rooms or other acute care settings.
  • Staff discomfort with, or lack of training, in counseling people.
  • Staff rotations and schedules, which preclude specialization in HIV and can result in those most qualified to conduct HIV testing and counseling not being available when a client comes in.
  • Inability to obtain informed consent or deliver positive test results due to the client’s state of mind (e.g. if they are mentally ill, intoxicated or severely depressed).
  • Staff fears about delivering positive test results.
  • Staff perceptions regarding the adequacy and appropriateness of their current outreach activities.

Gaps in Capacity. The survey also helped identify where there was limited capacity for HIV counseling, testing and referrals due to barriers like the above. However, said Ehret, this creates opportunities for collaboration, where prevention staff from other organizations could potentially establish regular hours at these sites to perform outreach and case finding.

Next year, the State plans to use supplemental funding from CDC to implement some of the recommendations provided by the workgroup to improve outreach and increase coordination between care and prevention programs to bring more people living with HIV into care. Part of this effort will include putting an evaluation component in place to see if recommendations have been implemented and if they improved things.

Ehret’s recommendation to grantees: “focus your efforts” because while there are many points of entry, more intensive work in certain high-traffic sites could yield better results. To find out, the Linkages workgroup may recommend research at a few select points of entry to determine, for example, whether there are more people with HIV seeking care at emergency rooms or substance abuse treatment facilities as compared to other sites. This, in turn, could result in more concentrated outreach efforts at high-traffic locations.

Professionalizing Outreach

While outreach can bring more people into care, those who conduct this work are often underpaid, under-trained, and look at outreach as a stepping stone, rather than a job to grow into. In response, Minnesota is working through its CARE Act and prevention planning bodies to identify ways to “professionalize” the field by establishing outreach standards. Efforts include:

  • Developing core training for outreach providers, including a cultural component and an introduction to HIV and STDs.
  • Developing a competitive pay scale for outreach staff.
  • Creating retention strategies.
  • Incorporating outreach duties into the jobs of former outreach workers who move to other positions within organizations.
  • Creating continuity in the field, so that outreach workers build relationships with clients.
  • Developing mentoring programs that partner seasoned staff with new hires.

 

In the Center, in the Streets of New York TOP
Will Murphy, Director of Special Programs and Outreach, William F. Ryan Community Health Center, New York City

The Ryan Center, funded under multiple CARE Act Titles and through CDC prevention funding, has the largest caseload of HIV primary care patients of any free-standing ambulatory care center in New York State. Center staff are pursuing better outreach by integrating HIV care into the primary care services offered, and more recently, by incorporating HIV prevention into primary care services. The Center also conducts multiple forms of street and peer outreach as they go beyond their doors to find new clients living with HIV.

According to the Ryan Center’s Murphy, making HIV a fundamental component of primary care has long been a hallmark of the agency, and the emphasis on HIV prevention within the care setting is a further effort to normalize these activities as rudimentary parts of primary care. This has been done in part by cross-training of staff, and is exemplified in the case of a case manager who would both conduct an oral HIV test to identify a patient who is positive and then facilitate that person’s entry into a program of care. Gaining approval from funders to mix funding streams has been important. Additionally, the Center reorganized itself so that all HIV prevention and support service staff report to one director, and so that CDC-funded peer educators work in the CARE Act-funded clinic. (This internal change mirrors a larger change in the city, which has cross-representation on both the CARE Act Title I planning council and CDC prevention planning group.)

Murphy outlined other features of the Ryan Center’s outreach program: (1) the provision of intensive case management to hard-to-reach populations; (2) collaboration with key points of entry to the health systems (e.g., homeless shelters, emergency rooms, youth centers, etc.); (3) bringing concrete services to clients, and providing continuity with respect to the staff with whom clients interact; and (4) integration of counseling and testing services into outreach work. (See the Q/A below to learn more about the Ryan Center’s outreach activities.)

Q/A With New York
Following is an interview between HRSA/HAB and Will Murphy of the Ryan Center to learn more about their outreach work.

Q: HIV counseling and testing is done by lots of your staff. How do you train them?
We have an oral HIV testing program, where we go to various sites in the community at regularly scheduled times. We also do mass HIV testing events. These activities require more staff than we have in our HIV testing program, so we cross-train other staff in our organization to conduct HIV testing and counseling activities. We train our LPNs, care technicians, case managers, mental health specialists, and substance abuse counselors, and others. Roughly 40 people have undergone the training. The result is that the case manager who coordinates your services may also be the person who administered your HIV test, gave you your results, and accompanied you on your first visit to the doctor. This creates continuity and enhances the client’s trust in the staff.

The training is done in a two-hour segment in a group setting. Trainees sign a form to document that they were trained. We also offer annual refresher trainings. There are three basic components to a training.

  1. How to administer an HIV test.
  2. How to do counseling in the field, which includes how to find a confidential space and how to register a person for follow up.
  3. How to process an HIV test.

We also provide HIV-related training for all new employees. This includes an HIV 101 session, information on State confidentiality laws and HIV prevention methods. This training generally occurs within the first 1-2 weeks after someone comes on board. Additionally, we do smaller 45-minute trainings for all staff in the organization that have any kind of contact with an HIV-positive client.

Q: How do you provide post-test counseling in an off-site or street-based venue?
There are two basic ways. We have a van, which gives us a variety of options in terms of where we can conduct testing, such as in parks, but also provides privacy for those being tested and counseled. In addition, because we are a multi-site agency, we can provide people options for getting tested or for getting their results, if, for example, they are not comfortable with the van or don’t necessarily want to get tested at that moment.

The other way is to go into other agencies and locations to provide testing. We primarily do oral HIV testing. We maintain regular hours at those sites and post information about when we will be there. We do a lot of testing at single-room occupancy hotels in New York, which gives us access to homeless individuals and substance abusers. We also collaborate with a Title I-funded meal delivery program that provides us with access to individuals who are HIV-positive, homeless or have substance abuse disorders, or some combination of all three. This is a disengaged population that we may not necessarily have access to through our other activities, or at least not the kind of access we get by going to visit this program during meal times.

Q: You receive funds to do “intensive” case management to re-engage hard-to-reach populations. How do you define this service?
In a number of ways. First, we have criteria that help us identify individuals who qualify for intensive case management, and generally they are people with multiple needs and significant barriers to receiving care. For example, a young woman with several children, someone who has missed a number of doctor’s appointments, or someone who stops taking their medications would probably all qualify.

Second, it has to do with the number of staff that work on an individual case. Whereas in standard case management you have one person coordinating care, with intensive case management you have at least two people working on the case, usually the case manager and a care technician. Additionally, the treatment team may be expanded if necessary.

Third, it has to do with the way we approach monitoring the client. For example, we will flag his/her appointments using our appointment system, schedule the person for more visits, conduct home visits with the person, and assess his or her status every three, as opposed to six, months. Overall, we bring more resources to bear in providing that person with support.

Our program is just one of several “case finding and re-engagement” grants funded through Title I in New York City. These grants are a good example of how case finding can be used to engage and re-engage people into care. City-wide, these programs have been able to retain 850 people in care over the course of the last grant year.

Q: How do you use coupons to track follow up on referrals?
Coupons are pre-printed with numbers on them so we track them back to the sites where they were issued. When the person “redeems” the coupon at an appointment that triggers an incentive and allows us to record that they came into one of our sites for care. Over a one-year period, 40 of the 500 people we tested entered our care program. Additionally, the coupons help us determine which sites are likely to trigger the most referrals.

Q: How much work is involved in using the coupons?
Setting up the database for the coupon system is the most cumbersome aspect of the activity. Once your system is in place, it’s not that labor-intensive. I would recommend however, that coupons be used with certain populations and at certain times, rather than as the focus of an outreach program. Also, I think two other things are really important to the activity. One is, to have a printer put the tracking numbers on the coupons for you. It may not sound like a big deal, but when you are doing it yourself, it takes a lot of time and attention. Second, I would encourage you to give outreach staff feedback on their efforts. It is really important they know that what they are doing is having some benefit, some value. If they feel like what they are doing is worthwhile, then that will reflect in their interactions with potential clients, and ultimately, I think, in the success of your efforts.

(See the end of this report for a copy of an outreach encounter form used by the Ryan Center.)

What Really Works in Outreach?
SPNS Projects to Find Out

The CARE Act SPNS program funded 17 projects in 2001 to research effective outreach strategies for a various populations, such as residents of single room occupancy hotels, ex-offenders, women, youth, and gay men of color. Some of their objectives include: enhancing client health seeking behaviors, improving use of clinical care, decreasing substance abuse, and helping people when they move from correctional health care to community care. Their work underscores that outreach does not exist in a vacuum. It’s part of a continuum of HIV related services. These projects are also using evaluation tools to find out what truly works in outreach, like client chart reviews, and client tracking. See the HAB website to learn more.

St. Louis: Building Partnerships to Do Outreach TOP
E. Tyronne Howze, SPNS Outreach Initiative Project Director, Blacks Assisting Blacks Against AIDS (BABAA), St. Louis, Missouri

Blacks Assisting Blacks Against AIDS is the only African American AIDS service organization in St. Louis providing HIV prevention education and support services. According to Tyron Howze, relationships helped his organization conduct outreach. “Here, as in most cities,” said Howze, “the AIDS community tends to be a small identifiable network of agencies and providers.” As such, he emphasized, staff have been “recycled” through various agencies, developing long-standing relationships between staff at service provider agencies that aid outreach activities. Further, it has given staff at the various organizations a “broad appreciation for the populations we serve and their unique needs.”

Those relationships are also important to the organization’s Transitional Case Management/Case Finding Program, which is funded under the Minority AIDS Initiative. The program seeks to identify people living with HIV and engage, or re-engage, them in care and case management services. Collaboration with various providers is central to case finding efforts. “Clients are identified through counseling and testing sites, disease intervention specialists, partner notification programs, AIDS service providers, community-based organizations, faith-based institutions, and emergency housing agencies, and are referred directly to our case finder, also known as a transitional case manager,” said Howze. Transitional case managers, he explains, differ from other case managers because their task is to identify people with HIV and transition them into care and services. A transitional case manager can connect the client to another case manager, who will then coordinate the provision of services to the client.

Once identified, the case finder/transitional case manager offers the client an HIV test if they don’t know their status, and connects them, or re-connects them, with an HIV case manager. The case finder/transitional case manager also assists the client with scheduling a medical appointment, monitors missed and kept appointments and tracks their outcome data, including viral load and CD4 counts.

“We have experienced a great deal of cooperation from other case managers and medical providers because our [transitional case managers] know these providers by name and have established relationships with them over time,” said Howze. Further, the close working relationship between staff at different agencies quickens follow up on referrals. Also, transitional case managers meet individually with case managers at the organization, and attend regular case management meetings.

“The development of integrated models of service such as the Transitional Case Management/Case Finder program” has helped the organization be successful in its outreach efforts. How successful will be identified through their participation in a SPNS evaluation study. The results of the study may help establish Blacks Assisting Blacks Against AIDS as a model outreach provider, and give other grantees strategies for getting HIV-positive clients into care early.

Blacks Assisting Blacks Against AIDS in St. Louis goals for its case finding include:

  • Provide early access to HIV case management and primary medical care services for individuals who have not received care in the six-week period following their positive test result.
  • Identify and re-engage in care individuals with HIV who have not seen a doctor in at least a year.
  • Re-connect to case management services those HIV-positive individuals who have not seen their case manager in a year.
  • Provide Orasure testing and counseling to individuals who don’t know their HIV status.
  • Escort clients to provider appointments, keep track of appointments they keep and miss, and support them in adhering to HIV medication regimens.
  • Tack client level outcome data, including CD4 and viral load counts.
  • Evaluate the effectiveness of its efforts.

Resources TOP

Outreach
Title I Manual and Title II Manual. Included are chapters on EIS, collaboration with prevention programs, and other topics relevant to outreach.

SPNS Projects Focused on Outreach and EIS. Multiple research initiatives are underway to develop models for enhancing access to care, including individuals not in care and those with co-occurring disorders.

Cross Training of HIV/AIDS, TB and Infectious Diseases Providers. This HRSA/SAMHSA/CDC initiative is to increase skills of public health & substance abuse providers across disciplines.

HIV/AIDS Clinical Management Volume 1: The HIV-Positive Patient - The Initial Encounter. This online summary addresses issues such as identifying clients at high HIV risk, HIV testing and counseling, partner notification, health assessment, establishing client relationships, and referrals.

Role of Health Care Workers in HIV Prevention. This fact sheet offers tips to providers on conducting risk reduction activities and addressing potential barriers (e.g., time limitations, reluctance to discuss sexuality and drug abuse).

Addressing Sexual Risk Behavior in HIV Clinical Practice, Johns Hopkins AIDS Service. Web pages discuss such topics as risk reduction counseling, the impact of HAART on sexual behavior, and practical suggestions for clinicians.

Linkage and Integration of HIV Testing, Prevention, and Care Services. Forum for Collaborative HIV Research.

1999 National HIV Prevention Conference. Although focused on prevention, a limited number of conference abstracts highlight early intervention focused activities. Look under the subjects list.

A Physician Guide to HIV Prevention (June 1996). Includes such sections as HIV prevention in primary care: overcoming the obstacles; sex and HIV prevention; and HIV counseling/testing.

HIV Prevention Case Management – Guidance, September 1997. While focused on supporting client HIV risk reduction behaviors for clients (particularly those experiencing difficulty in this area), this document also discusses the role of access to care services as they affect risk behaviors. Included is a general statement on coordination of CARE Act and prevention-focused prevention case management. Also, download the PDF version here.

Center for AIDS Prevention Studies (CAPS). Focused on HIV prevention projects, resources include a limited number dealing with HIV+ individuals and access to care under the Model Prevention Projects section. (e.g., Unity Project, a 5-year study to learn how to help people living with HIV live longer and reduce the risk of transmitting HIV to others.

HIV Counseling, Testing, and Referral Resources TOP

CDC Revised Guidelines for HIV Counseling, Testing, and Referral (Web page or PDF file). This November 2001 update revises the 1994 version and keeps many provisions like maintaining confidentiality while adding such sections as targeting of testing through screening techniques and use of counseling techniques proven effective.

HIV Prevention Through Early Detection and Treatment of Other STDs. U.S.: Recommendations of Advisory Committee for HIV/STD Prevention. MMWR 1998; 47(No. RR-12). (Web page or PDF file)

CDC Revised Guidelines for HIV Counseling, Screening of Pregnant Women (Web page or PDF file). Revised guidelines (October 31, 2000) update CDC's 1995 recommendations on HIV counseling and voluntary testing for pregnant women. They emphasize HIV testing as a routine part of prenatal care; recommend a simplification of the testing process to eliminate barriers; make the consent process more flexible; recommend that providers explore reasons for refusal of testing; and place more emphasis on HIV testing and treatment at the time of delivery for women who have not received prenatal testing and chemoprophylaxis.

2002 Guidelines for the Treatment of STDs

Understanding the Impact of New Treatments on HIV Testing. Review of HIV counseling/testing given changes in treatment, prevention, and testing technology—all of which have placed increased importance on HIV counseling/testing as a prevention and care tool

CDC Testing Page. Web page listing of resources on HIV counseling/testing.

National HIV Testing Resources. Client-focused resources on counseling/testing, including information for persons who test HIV-positive.

HIV Partner Counseling and Referral Services Guidance, September 1998. Focused on the prevention-end of working with HIV-infected clients in terms of contacting sex and needle-sharing partners of HIV+ individuals.


Evaluation of the Call TOP
Overall, listeners gave the call a 3.6 rating on a 1-5 scale (5 being excellent). Listeners liked hearing from colleagues who are grappling with how to do outreach, and also liked the consumer perspective. Suggested: more on the nuts and bolts of outreach programs, such as training for outreach workers, duties of outreach workers, steps for addressing confidentiality issues, and ways to follow up on referrals. More time for Q/A was also recommended along with specifics on HAB’s outreach policy and guidance on fundable activities.

Outreach Venues – Select List

  • Hospital emergency rooms
  • Substance abuse detoxification centers
  • School-based clinics
  • College health centers
  • Churches and faith-based organizations
  • STD clinics
  • Correctional facilities
  • Homeless shelters
  • Methadone clinics
  • Meal delivery programs
  • Areas where sex workers do business, such as parks
  • Drug shooting galleries
  • Bath houses
 


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