The Ryan White CARE Act, a safety net program first enacted in 1990, provides health and support services to people living with HIV (PLWH) in the U.S. through several Titles. Recipients of CARE Act funds—particularly metropolitan areas and States under Titles I and II, respectively—prioritize and allocate funds to cover unmet service needs. In the 2000 reauthorization of the CARE Act, Title I and II grantees were directed to determine unmet needs for services. This paper describes a process by which the HIV/AIDS Bureau of the Health Resources and Services Administration of the U.S. Department of Health and Human Services has assisted grantees in developing tools to make quantitative estimates of the unmet need for HIV primary care services. The process enables grantees to identify underserved populations and implement strategies to bring them into regular primary care. The Care System Assessment Demonstration Project supplements these tools.
The Care System Assessment Demonstration Project was designed to assist community planning bodies in determining barriers to care for people living with HIV (PLWH) in selected underserved minority populations and generating recommendations for care system enhancement that would lower those barriers. This paper describes the selection of three sites to participate in the project and sketches the two primary tools used in implementing the project: Rapid Assessment, Response and Evaluation (RARE) techniques initially developed to assess community HIV prevention needs, and a system assessment model created to help communities conduct systematic evaluations of their HIV care systems. The paper also provides an overview of the remaining chapters of the supplement, detailing how the project was implemented at the national level and the three participating sites and evaluating both the project's process and its local impact.
The impact of the HIV/AIDS epidemic on minority communities called for interventions to stem the increase in new HIV infections and identify HIV-positive individuals for referral to care and treatment services. The Rapid Assessment, Response and Evaluation (RARE) project was designed to provide highly affected communities with a tool that would quickly identify conditions that fuel new infections and serve as barriers to HIV-positive individuals getting HIV testing, care, and treatment. RARE brought indigenous community health outreach workers and key community-level stakeholders together to advocate for the transfer of findings into programmatic and policy responses in places where high risk behaviors were practiced. This article describes RARE's qualitative methods that captured the voice of those most affected by the HIV/AIDS threat and identified critical insights and dynamics about factors that lead to HIV infections and those that can move positive individuals into care and treatment.
The care system assessment model is intended to help community planning bodies for HIV services conduct systematic evaluations of existing care systems, with an eye toward changing them to make services more accessible to people living with HIV (PLWH) from underserved minority communities. The model has four structural and three cultural/behavioral dimensions. The structural dimensions are system comprehensiveness, capacity, integration, and accessibility; the cultural/behavioral dimensions are service acceptability, technical competencies (of both providers and potential system users), and client health-seeking behaviors. This chapter describes the model's dimensions and ways to operationalize them through document reviews and other methods.
This paper describes the components of Rapid Assessment, Response and Evaluation (RARE), developed for HIV prevention planning; the adaptation of its methods to services planning; the venues in which the use of RARE was recommended for the present Care System Assessment Demonstration Project; constraints on what projects using RARE and the system assessment model may expect to accomplish; the focus of RARE questions for the project, concerning the characteristics of PLWH not in regular primary care, the care system as PLWH not in care perceive and experience it, and characteristics of the physical and social environments in which they live; how information from RARE can contribute to the enhancement of care systems; and the types of questions that sites could ask to gather RARE information for services planning.
This article describes the implementation of the Care System Assessment Demonstration (CSAD) Project. The article examines issues related to the participation of the community in the assessment of needs and systems of care for out-of-care minority populations living with HIV/AIDS. It describes methods to engage the local community, work with stakeholders, create consensus, and produce policy recommendations and action plans that are based on the culture and specific needs of the populations targeted by systems of HIV/AIDS care.
Palm Beach County, Florida was one of three sites selected nationally for the Care System Assessment Demonstration Project. The special focus of the Palm Beach project was Black women (both U.S.-born and foreign-born). The CSAD consists of two complementary components: (1) Rapid Assessment, Response, and Evaluation (RARE), which examines the research topic from the perspectives of the affected population (i.e., HIV-positive Black women who are not in care); and (2) Care System Assessment, which examines the research topic from the perspectives of people within the HIV/AIDS care system (e.g., health care providers, planners, HIV-positive Black women in care). This article presents the methods, findings, and recommendations from the Palm Beach County site.
This article discusses special challenges faced by HIV-positive Haitian immigrants, one of the groups targeted by the Care System Assessment Demonstration Project in Palm Beach County, Florida. The article examines the following issues: structural health care access barriers; language and literacy; health beliefs and practices and their intersection with Western medicine; health care-seeking attitudes, emotions, and behaviors; bridging cultural chasms; and lessons learned.
This is one of two papers in this volume to report on the result of the Care System Assessment Demonstration (CSAD) Project conducted in Orange County, California. Latino and African American residents of Orange County who were aware of being HIV positive but who were not in care were targeted for this assessment. The basic questions were: Why are these people not in care? and What can we do to get them into care? The project used selected Rapid Assessment, Response, and Evaluation (RARE) methods (described in chapter 5) to retrieve information from HIV-positive Latinos and African Americans both in and out of care, cultural experts, service providers, and administrators to find the answers. Latinos and African Americans who were out of care responded in the most similar ways, of all the groups of respondents.
This article describes how the Care System Assessment Demonstration (CSAD) was applied to the Ryan White Care System in Orange County, California. Data were collected for the project using the Rapid Assessment, Response and Evaluation (RARE) assessment methods plus document reviews. The RARE methods were used to gather data from people living with HIV/AIDS (PLWH), cultural experts and service providers. Information from the contextual assessment and the system assessment were combined and presented to a group of community stakeholders representing PLWH and their families and service providers. Three recommendations were forwarded to the HIV Planning Council for implementation.
The Rapid Assessment, Response, and Evaluation (RARE) portion of the CSAD Project in the Twin Cities (Minneapolis–St. Paul, Minnesota) was designed to identify barriers to care faced by African refugees and immigrants. Data were collected from cultural experts and African people living with HIV (PLWH) who were out of care, who had newly entered care, or who were in and out of care. Findings from RARE can be categorized into five main themes: HIV/AIDS within the African context, experiences of African PLWH, unfamiliarity with HIV and support services that facilitate access to care, cultural and religious dilemmas in seeking or remaining in care, and accessing African PLWH and getting them into care. Most of the issues identified were manifestations of stigma, gender, religion and/or faith, as well as the two main underlying cross-cutting themes of knowledge and fear. The top barriers to care included fatalistic views about HIV, fear of isolation, fear of deportation, lack of knowledge of the care system and HIV-related services, and employment issues.
The Twin Cities Care system lacks services that are most needed in the later stages of HIV disease. Services in highest demand included housing, transportation, and translation; available translations services are generally limited to Somali, Oromo, and Amharic, the languages most widely spoken by the three largest African immigrant and refugee groups in the Twin Cities. The care system is not well-integrated, and most of the work of moving clients within the system is done by case managers and care advocates. The main technical competencies identified by providers as lacking are understanding mental health from the perspective of African-born people living with HIV/AIDS (PLWH) and addressing sexual issues, especially with women. African providers with foreign certifications not recognized in the United States are not able to use their professional skills. African clients are not well-informed about HIV, and African women are more likely than men to seek and stay in care.
This article describes the evaluation procedure that was applied to the Care System Assessment Demonstration (CSAD) Project. The article examines issues related to the methods and design of the evaluation activities, the way the local teams were set up and trained, how the project's tools were adapted to local realities, and how the project's monetary needs were addressed.
Although a comprehensive evaluation of the Care System Assessment Project is still several years off, the project quickly catalyzed changes in each of the communities in which it was piloted. All the sites found the system assessment model useful in identifying gaps in services. The project also clarified ways to engage underserved minorities in both care and planning for HIV care, and it helped to create community consensus in shaping initiatives to bring these populations into care. At all three sites, immigrant and refugee populations had to change beliefs that tended to delay their entry into care, and HIV-related stigma remained a significant barrier to entering care. However, all three communities also faced financial constraints that were likely to impede their ability to implement needed changes quickly. All of the sites identified needs for expanded public information campaigns and support services.
This is a commentary on the Care System Assessment (CSA) Project, utilizing a values-based health care framework to review the process undertaken by the three participating Ryan White CARE Act grantee sites. The CSA Project participants' dedication to the well-being of their communities reinforced the inclusion, active involvement, and participation of all stakeholders. That key community members had previously chosen not to participate in planning efforts or seek care because of stigma and fear in new immigrant populations was noted by all three sites as a major issue to address in their future planning. The sites selected for the CSA Project demonstrated that community-based Planning Councils, engaged with representatives from the target population, can assess, identify, and provide effective interventions sensitized to the needs of underserved, resilient clients. They also demonstrated that meeting these needs to enhance the common good of the community may require an increased respect for diversity.
The CSA Project is one leadership exemplar of providers and clients coming together to find the common good of quality health care for people living with HIV and AIDS These grantee providers and their clients are intimately engaged in this paradigm shift and are taking the lead to redefine the type of health and support services they must provide within the context of the U.S. health care system.