Special Projects of National Significance
2005 Report to CARE Act Grantees

Caribbean Initiative

Models of Peer Support for Caribbeans Living in the United States

Background

This document provides an overview of the Models of Peer Support for Caribbeans Living in the United States , and a description of the six grantees funded under this initiative.

HIV infection rates in the Caribbean are the highest in the world outside of Africa, with an estimated prevalence of 2.1%. By the end of 2003, UNAIDS estimates that approximately 430,000 individuals were living with HIV/AIDS in the Caribbean, compared with 330,000 individuals at the end of 1998; this same report cites that the true number living with HIV may be as high as 760,000.

A high rate of migration between the Caribbean and the United States creates potential public health implications for the delivery of care and treatment services for Caribbeans living with HIV/AIDS in the United States. The large degree of mobility among Caribbean populations includes migration not only between the Caribbean and the United States, but within states or travel to other cities (for example Miami, New York and Boston). This mobility may be due to employment, family obligations, need to hide (because of HIV stigma), and need to seek medical care.

The U.S. HIV epidemic continues to affect disadvantaged racial/ethnic minority communities disproportionately, and those of Caribbean origin are no exception. Not only are new infections increasingly concentrated in these groups, but people living with HIV from these groups are

less likely to receive timely and optimal care. Both African-Americans and Latinos are likely to have more advanced disease at initial diagnosis than whites. Contributing factors include poverty and its concomitants, such as a lack of insurance and poor linkage to health care services. A nationally representative survey of people in care for HIV and AIDS identified a pattern of reduced access to high-quality care for African-American, Latino, female, uninsured, and Medicaid-insured HIV-infected adults in the United States. People in these categories have poorer access to highly active anti-retroviral therapy (HAART) than their white and male counterparts.

To better understand the impact of HIV/AIDS on Caribbeans living in the United States and their experience with the HIV/AIDS care system, HRSA conducted a series of qualitative data collection activities in Ryan White CARE Act centers in Florida, New York and Puerto Rico. This consisted of focus groups, interviews and survey assessments of HIV-infected persons from the Dominican Republic, Haiti, Jamaica, and Trinidad and Tobago and their providers. Barriers to care that were identified included lack of knowledge about HIV, stigma, language

2005 REPORT caribbean initiative

differences, concerns about confidentiality, immigration status, and cultural beliefs and practices. Many respondents reported that they did not understand HIV, that it is a virus, or that its progression is from an asymptomatic infection to a debilitating disease that requires specialized care and medications. Similarly, the need for continuity of care and adherence to care was misunderstood. The moral association of HIV with `sin' and subsequent intolerance to those infected is a significant obstacle toward providing care.

Consistent with social support literature, the HRSA focus group study demonstrated that community norms and cultural beliefs exert enormous influence on the health care seeking behavior of Caribbeans living with HIV/AIDS. The SPNS Caribbean Initiative was therefore developed to address this issue. Interventions that address social network and community-level phenomena, including those that enlist peer counselors, have been shown to be effective in reducing HIV risk behaviors in diverse populations. This initiative demonstrates this approach as a potential solution to retaining Caribbeans living with HIV into care and achieving their appropriate utilization of care.

The Caribbean Initiative

The Models of Peer Support for Caribbeans Living in the United States is intended to strengthen and evaluate community-based peer programs that are serving people living with HIV who are underserved and of Caribbean origin. Since 2003, five demonstration sites, in conjunction with SPNS and an Evaluation and Support Center, have refined their interventions and developed the design for the multi-site evaluation. The sites started baseline data collection and began their interventions in October 2004. These interventions are designed to enable Caribbeans living with HIV disease to understand the nature of their HIV infection and HIV treatment options, and obtain HIV medical services through the use of peer

promoters who are HIV-positive and of Caribbean origin. SPNS will fund this initiative during Federal fiscal years 2003 - 2007 for four years.

Services provided under this initiative are directed towards underserved Caribbeans living in the United States who are HIV positive. While each project has specific goals and strategies, the overarching theme of this initiative is to change the way Caribbeans living with HIV are affected by cultural beliefs and norms in seeking appropriate health care. Specifically, through the use of peer promoters, programs in this initiative seek to increase the understanding of HIV and HIV treatment options, as well as increase the use of HIV related services for persons of Caribbean origin living in the US.

Contact Information

Evaluation and Support Center

Academy for Educational Development
1825 Connecticut Ave NW
Washington, DC 20009

Elvis Fraser, Principal Investigator
Phone: 202-884-8796

HRSA Project Officers

Special Projects of National Significance
5600 Fishers Lane, Room 7C-07
Rockville, MD 20857

Adan Cajina, MS
Phone: 301-443-3180

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THE SPNS MANDATE

The purpose of the Special Projects of National Significance (SPNS) program is to advance knowledge and skills through the support, development and evaluation of innovative models of HIV care for financially disadvantaged and medically underserved populations. The SPNS program, administered by the Health Resources and Services Administration (HRSA) HIV/AIDS Bureau (HAB), is part of the Ryan White Comprehensive AIDS Resources Emergency Act, also known as the CARE Act.

SPNS models of innovative care for HIV-positive patients have been designed to respond to the needs of the HIV epidemic. Currently, it is estimated that about 650,000 to 950,000 persons are infected with HIV and approximately 40,000 new infections occur every year in the United States. Only about one-third of HIV-infected adults are currently receiving regular or ongoing medical care for HIV infection. The most affected populations are traditionally underserved and hard-to-reach groups, particularly women, injection drug users and their heterosexual partners, gay and bisexual men of color and youth. HIV/AIDS is now most heavily impacting minority communities and individuals living in poverty.

SPNS response to the epidemic began in 1991 with some of the first Federal grants to target adolescents and women living with HIV. Today, a portfolio of 72 grants funded either solely by the HIV/AIDS Bureau or in partnership with other Federal agencies addresses the cutting-edge issues in HIV care.

The SPNS program is an integral link to all CARE Act programs. While it provides an opportunity to develop and evaluate new services, the program places great emphasis on the dissemination of these services. SPNS promotes the dissemination and replication of effective models of care relevant to the present challenges of the epidemic. These models include the integration of HIV primary care services to the needs of individuals who present with multiple diagnoses such as substance abuse, mental health, and other psycho-social burdens that complicate the effective delivery of health care.

As CARE Act grantees develop innovative services, the SPNS program will provide the funding and technical assistance for grantees to evaluate innovations and disseminate findings to the HIV community.

Within each multi-site SPNS initiative, grantees focus their interventions on a specific population or treatment issue, either by implementing components of existing interventions or designing new models. These models are evaluated for effectiveness, efficiency, and replicability. An important corollary is an examination of the contextual issues that contribute to the success or failure of an intervention in a particular setting or with a particular population.

Evaluation of Models

The structure of most of the multi-site initiatives is designed to collect data and evaluate interventions across sites. The projects are grouped by type of intervention or topic (e.g., outreach, prevention) with the guidance of an evaluation center, whose tasks include:

· facilitating cross-site evaluation, with technical assistance provided

· developing standardized data collection instruments

· assuring data quality

· disseminating findings

· and assessing policy implications of study findings.

Each grantee is required to participate in development of the evaluation plan for the overall initiative and most collect uniform data that can be analyzed and compared across programs. The SPNS initiatives have demonstrated that collaboration for multi-site evaluation of care programs is possible and rewarding, and that it requires time and effort on the part of all stakeholders: the evaluation centers, HRSA/SPNS, and the projects.

Current SPNS Initiatives

To date, SPNS sponsors a variety of demonstration programs, each with a set of unique, yet initiative specific goals and strategies designed to have the greatest impact on their respective targets. While SPNS has funded numerous innovative programs over the past decade, the table below summarizes eight initiatives that are currently funded through 2009.

Lessons learned from these and other initiatives are helping the HIV/AIDS Bureau develop effective strategies for addressing the demand for HIV services among underserved infected populations.

Current priorities include:

US-Mexico Border: Demonstrating and evaluating models that advance HIV service innovation along the US-Mexico Border

Outreach: Evaluating effective outreach strategies for bringing individuals into HIV primary care treatment

Information Technology: Assessing and evaluating the use of information technology to improve HIV medical care

American Indian/Alaska Native: Supporting the coordination and integration of existing services for Native Americans/Alaska Natives living with HIV and other co-morbidities

Caribbean: Improving care and treatment of HIV-infected persons of Caribbean descent through culturally appropriate strategies

Prevention with Positives: Assessing prevention strategies in primary care settings for HIV-positive persons

Buprenorphine: Developing, implementing and evaluating innovative methods for integrating Buprenorphine Opioid Abuse Treatment in HIV primary care settings

Young MSM of Color: Implementing and evaluating models of outreach, care and prevention targeted to young HIV seropositive men who have sex with men (YMSM) of color

2005 REPORT caribbean initiative

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Grantees

Brookdale University Hospital and Medical Center (Brooklyn, NY)

Zanmi ede Zanmi (Friends Helping Friends)

Target Population: Haitians living with HIV or AIDS in East Brooklyn, NY

Goal: To incorporate peer support interventions as part of the services received by the target population to overcome potential barriers that hinder appropriate care

Strategies: 1. Identify endemic and culturally specific barriers to care; 2. Create a peer training curriculum that builds skills and knowledge to overcome barriers to care; 3. Deliver training for peers on HIV and its management and treatment, service access, and effective communication; 4. Deliver health education and risk reduction counseling

Evaluation: Incorporating both process and outcome evaluation, this project will collect demographic, clinical, service utilization, and outcome data, comparing the results among subjects who receive peer support and those that do not

Contact Information:

Andre Brutus, Principal Investigator
1 Brookdale Plaza
Brooklyn, NY 11212
Phone: 718-240-6190

Community Healthcare Network
(New York, NY)

Development and Evaluation of Peer Support for Brooklyn Based English Speaking Caribbeans Living with HIV/AIDS

Target Population: HIV-positive Caribbean immigrants residing in Bedford Stuyvesant-Crown Heights, Flatbush, and East New York communities of Brooklyn

Goal: To increase participant knowledge and understanding of HIV disease, treatment options, and service delivery, reduce barriers to care, and identify effective strategies to increase timely and consistent use of appropriate HIV services

Strategies: 1. Peer support model to include one-to-one and group education and support, case management, and access to ancillary services including legal services and emergency assistance; 2. Peer education by Community Educators, addressing stigma, use of female condoms, and involvement in policy advocacy and community mobilization

Evaluation: 1. Assessment of knowledge, attitudes, and skills of peer educators both before and after training; 2. Assessment of the impact of peer intervention, comparing intervention to control subjects, as well as evaluation of barriers to care, improvements in medical care/HIV services, and other medical indicators, including chart reviews

Contact Information:

Kim Atkins, Principal Investigator
79 Madison Avenue
New York, NY 10016
Phone: 212-924-1400

Lutheran Medical Center
(Brooklyn, NY)

Targeted Intervention of Peer Support (TIPS)

Target Population: HIV-positive Trinidadians from Brooklyn with a concentration in the central Brooklyn neighborhoods of Flatbush/East Flatbush and Crown Heights/Bedford-Stuyvesant

Goal: To increase knowledge of HIV infection, understanding of HIV options and the service delivery system, and entry into appropriate HIV medical care and ancillary services

Strategies: Train peer promoters to provide individual and community-level HIV peer support intervention utilizing a culturally sensitive framework to disseminate user-friendly information, develop strong social supports, and influence individual and community norms/values

Evaluation: The project will conduct a process and outcome evaluation, which will include collecting data from both intervention and control subjects, measuring the duration and intensity of the intervention, and measuring effects on client and community characteristics

2005 REPORT caribbean initiative

University of Miami (Miami, FL)

Enabling Haitians Access to Needed Care (ENHANCE)

Target Population: HIV-positive Haitians living in Miami-Dade County

Goal: To enhance the use of HIV primary medical care and ancillary services among the target population

Strategies: Develop, implement, and evaluate a brief, theoretically based peer-delivered intervention

Evaluation: The primary outcomes to be assessed include the use of HIV primary care and ancillary services and barriers or facilitators associated with the use of care and services, longitudinally assessed among both participant and control subjects

Contact Information:

Allan Rodriguez, MD, Principal Investigator
School of Medicine
1500 NW 12^th Avenue 8^th Floor
WestMiami, FL 33136
Phone: 305-243-3011

Montefiore Medical Center (Bronx, NY)

Targeted Peer Support Model Development and Evaluation for Caribbeans Living with HIV Infection

Target Population: Jamaicans living with HIV or AIDS

Goal: To increase the use of HIV-oriented primary medical care, mental health care, and case management

Strategies: 1. With the assistance of pastors, civic leaders, and medical providers, develop and implement a culturally-specific peer outreach and group intervention; 2. Peer support workers will provide HIV/AIDS education and support as well as other support services, including case management, nutrition counseling, transportation, and child care

Evaluation: Medical and social service utilization rates will be determined at baseline and six-month intervals thereafter; additional information collected will include program participation rates as well as the impact of training and intervention activities related to peer outreach workers

Contact Information:

Anitra Pivnick, PhD, Principal Investigator
Department of Family Medicine and Community Health
111 East 210^th Street
Bronx, NY 10467
Phone: 718-920-2918

Academy for Educational Development
(Washington, DC)

Evaluation and Support Center for the Caribbean Peer Support Initiative

Goal: 1. To assist project sites with implementing and evaluating theoretically-sound, evidence-based, and culturally specific peer support interventions; 2. To conduct a multi-site evaluation to determine models that are effective for specific groups of Caribbeans living in the United States; 3. To identify, compile and disseminate best practices, lessons learned, and other relevant findings to HIV service providers, policy makers, funders, and patients

Strategies: Conduct a needs assessment, design a structured technical assistance system, provide ongoing technical assistance, and develop/deliver training for peer workers and data collection

Evaluation: Key features of the multi-site evaluation will include a multi-site logic model, common data collection instruments and protocols, and a common analysis plan; the evaluation is designed to determine the effectiveness of peer support models and to examine the impact of different institutional settings on implementation and outcomes

Contact Information:

Elvis Fraser, Principal Investigator
1825 Connecticut Ave NW
Washington, DC 20009
Phone 202-884-8796