|
|||||||||||||||||||||||||||||||||||||||||||||||||
|
|
Contents:
Summary:
Outreach - Getting People into Care 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 calls presentations and listener questions, which included the following.
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.
HRSA/HIV/AIDS
Bureau Perspective: Outreach and the CARE Act TOP 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 servicesover 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 Acts 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 nations 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 CDCs Serostatus Approach to Fighting the Epidemic (SAFE) project, where 43 percent of individuals learned their HIV status within one year of developing AIDS.
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 ones HIV status, having never been tested for HIV and not returning for test results. Other reasons include:
HIV/AIDS Bureaus Outreach Policy TOP
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 clients 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.
From
the Field TOP A
Consumer Perspective: Tonys Story 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 Tonyin part he thinks because he doesnt 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 Tonys words, they let him know that he was someone they didnt 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.)
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, Ive 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:
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 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 doctors office. While medical care is important, other client needs may take precedence, and addressing those needs can help pave the way for the clients entry into treatment. Depending on the persons 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 calls 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:
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. Ehrets 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.
In
the Center, in the Streets of New York TOP 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 Centers 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 persons 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 Centers 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 Centers outreach activities.) Q/A With New York Q: HIV counseling
and testing is done by lots of your staff. How do you train them? 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.
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? 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? 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? Q: How much work
is involved in using the coupons? (See the end of this report for a copy of an outreach encounter form used by the Ryan Center.)
St.
Louis: Building Partnerships to Do Outreach TOP 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 organizations 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.
Resources TOP 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. 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 technologyall 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
|
||||||||||||||||||||||||||||||||||||||||||||||||
|
|
|||||||||||||||||||||||||||||||||||||||||||||||||