Multicultural AIDS Coalition (MAC): A Case Study

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Daryl Mangosing Dr. Linda Hudson HCOM-536: Health, Culture, and Communication March 23, 2015 Multicultural AIDS Coalition (MAC): A Case Study Research has shown that African-born immigrants to the U.S. have a high risk of HIV infection, and more than half of them reside in one of seven states with Massachusetts being home to more than 66,000 residents.1 As of 2009, the largest proportion of non-U.S. born persons in MA diagnosed with HIV infection was from Sub-Saharan Africa.1 Because only a few studies have focused on HIV-testing attitudes and stigma in this population, very little is known about how to provide culturally appropriate HIV prevention and screening activities, particularly among African-born men.1 Not only to they have a high rate of HIV seropositivity and present at a late stage of HIV disease, but they also experience significant HIV-related stigma.1 Moreover, barriers and misconceptions about the U.S. healthcare system and legal and linguistic challenges persist.1 Thus, the need to provide interventions to reduce barriers to HIV testing, decrease stigma, and increase access to healthcare services in this community emerged. To address this public health disparity in Massachusetts, the Multicultural AIDS Coalition (MAC) established a state-based program called Africans for Improved Access (AFIA) in 2001 from a coalition of African immigrants, providers, and government officials who wanted to respond to the increasing rates of HIV in this community back in 1999. The staff works with African-born community members, organizations, civic groups and businesses while understanding, respecting, and incorporating culture. The following case study aims to describe the organization in the context of their work on this health problem, the players and collaborators involved, the processes undertaken to resolve the issue, resources utilized to manage the program, and the desired outcomes. The following points are addressed respectively: setting,

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mission, primary players, determinants of health, the definition of culture, theoretical frameworks, the role of culture in the development and implementation of the program, methods of data collection, resources, challenges, evidence of success and evaluation, and my own personal assessment and reflection of the case. Responses to these sections are based on an interview with Chioma Nnaji (MPH, MEd), the Program Director of MAC’s AFIA. Organizational Setting, Mission, and Primary Players Since 1988, MAC has been known as the oldest Minority AIDS Service Organization in the New England region. MAC reaches a diverse body of cultural backgrounds – Sub-Saharan Africans, black men who have sex with men (MSM), injection drug users (IDUs) and their sex partners, and women sex partners of MSM – in raising HIV/AIDS awareness and providing support to access and utilize HIV services. Additionally, MAC’s efforts extend to advocating for fair and effective HIV policies for communities of color and training other organizations to meet their needs as evidenced by MAC’s participation in the federal Minority HIV/AIDS Initiative. While MAC manages a number of departments, including Client Support, Community Mobilization, Public Policy and Advocacy, and Research, the AFIA program falls under Prevention and Screening. AFIA, however, still extends to other departments as appropriate like Technical Assistance and Capacity Building where Chioma works closely with healthcare providers on gaining knowledge and skills in cultural competency with this population. Altogether, MAC operates through their mission to mobilize the community to end the HIV/AIDS epidemic. This is primarily done by ensuring accessible prevention and treatment services for those living with HIV, at high risk for becoming infected, or closely affected by HIV and secondarily through advocating community efforts to eliminate conditions that contribute to the epidemic (e.g. substance abuse, lack of health care access, homelessness, incarceration, and

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oppression based on race/ethnicity, gender, and sexual orientation). Those who have intimate knowledge of these issues or live in these communities also staff the programs at MAC. With AFIA being built on and continuing to be community-led, Chioma has commented the following on leadership: “Leadership is taking cues from the community and individuals who help inform our programming.” This entails asking, “What do you think we need to do outreach? How to provide testing onsite?” Collaboration must take place in order to make it a “win-win situation” for both the organization and the community, who serve as the primary players. The Board of Directors reflect the interests of the primary players by including various stakeholders like community members, academics, providers, lawyers, people living with HIV, and other multiple identities. At the organizational level, MAC has an executive director, two program directors, and program staff and community health workers (CHWs). The community, however, must be at the center in the development and implementation of programming to be successful. Determinants of Health Chioma described the determinants of health for AFIA in three parts: resource allocation, forms of oppression (i.e. racism and homophobia), and immigration policy/reform. Together, the three impact the types of services they are able to provide to the community of interest. In terms of health services, Massachusetts has done an “excellent job” in reducing the number of new HIV infections and getting those with HIV into care to a state of viral suppression (i.e. undetectable status). This has led MAC to shift their main stream of funding to the Centers for Disease Control and Prevention (CDC). While the CDC has been reallocating more resources to the South of the country, MAC has still been able to keep infection rates low, because they are able to sustain a certain level of services to provide. Moreover, the Affordable Care Act has impacted the organization in positive ways, including reimbursements for CHWs, serving as

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another source of funding, more clinical services and STD screening, etc. As for oppression, this presence of this social determinant of health worsens the already poor health outcomes of this population, whether it is physically or mentally. Both racism and homophobia are known to stem from the identities that the community associates with, thereby creating a potential barrier to accessing or utilizing health care services. Lastly, the need for immigration policy/reform at the federal level also is emphasized as a determinant of health in the context of this organization’s mission. National awareness and support for addressing the health issues that immigrants face in the U.S. greatly impact the visibility and capabilities of MAC at the programmatic level. The Definition of Culture “Culture” is defined, conceptualized, and operationalized within the context of communities of color. MAC, with AFIA in particular, focuses their programming on African immigrants and therefore primarily relies on a racial/ethnic classification of culture; however, their target population extends beyond race and ethnicity and into gender and sexual orientation as well. Chioma has also noted that the “black” identity is inclusive of many subgroups based on the views of the organization’s black HIV/AIDS coalition before AFIA was established. Their diversification of culture is evident from their past taskforces for African immigrants, gay/bisexual men, IDU, etc. and has informed their current programming. While this may seem limiting and simplistic of identifying and classifying “culture,” Chioma makes an interesting point in that they have to think of “culture” as how it relates to HIV risk in this community. Hence, it would make sense to realize that drug use is a culture in itself and that identifying with a certain gender and/or sexual orientation influences the mode of transmission of the virus (e.g. anal sex among MSM and substance use among black women). Social determinants of health that are of particular influence as well include homelessness,

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domestic violence, and poverty. These multiple identities that the organization considers and the intersection of these different facets of culture ultimately inform the specificity of their services. Theoretical Frameworks and Models According to Chioma, four theoretical frameworks and models inform AFIA’s current programming: health belief model (HBM), harm-reduction, community organization model (COM), and ecological approaches like the socio-ecological model (SEM). HBM serves as a behavior change model for an individual taking action for their health. Internal factors include perceived susceptibility and severity and whether the benefits and cues to action outweigh the barriers. MAC, however, does not seek to eliminate the problematic health behaviors completely, as it is not easy to stop someone from drug use or sexual activity. Thus, the employment of harm-reduction is useful and effective in that the focus is on minimizing the harms and costs of the behavior and ameliorating the conditions surrounding it (e.g. HIV testing and safe sex). Complementing individual-level behavior change is the COM, which primarily drives AFIA programming. The COM entails public health experts working with the community to identify health/social problems and consequently plan and implement strategies to address them. This highlights the vital role of the community in active participation. Altogether, these models merge to operate under the SEM, which posits that effective interventions consider multiple subsystems that impact health. From the center lies the self or individual, and outward, interpersonal connections (family and peers), the community (leaders, organizations, and providers), and the environment (policy, politics, economics, religion, etc.). The Role of Culture in Development and Implementation Chioma described the role of culture in the development and implementation of the program in four parts: cultural understandings and contexts; community collaboration or

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partnerships; cultural discourse; and issues around stigma in HIV/AIDS. AFIA incorporates cultural understandings and contexts into their program to make sure that it is culturally relevant. One example is the African Health Cup (AHC), an innovative statewide intervention in the form of a soccer tournament that reflects the sociocultural activity back home in Africa. “That’s what people do naturally back home,” says Chioma. The AHC not only consisted of 12 African teams by country, but it was also developed with HIV prevention education and testing services. As the COM entails, community organizing and partnerships are also essential in terms of culture’s role. One example is “engaging state organizations that are important to individuals,” particularly religious institutions like the Mosque or Church. At one event, the National Week of Prayer for HIV/AIDS, the pastor agreed to having AFIA to conduct 30-minute HIV discussion groups and testing onsite in exchange for providing healthcare access assistance. At the interpersonal level, considering cultural discourse is important in promoting receptive communication. The use of African proverbs was found to be useful (saying “It is better to know than not to know” versus “Get tested”) as well as being conversationally normative (avoid being too direct when inquiring about topics that are considered to be taboo like sexual activity). Such discourse stems from the stigma around HIV in this community whereby knowing how certain issues are responded to is vital. One example is recruiting people that clients know and conducting HIV education sessions in someone’s home for a more cozy environment; participants are separated into non-co-ed groups by sex, and the anatomy of the body/sexual organs is described first before the topic of HIV and prevention is even introduced. Data Collection Methods To inform programming capabilities and evaluation, both quantitative and qualitative methods of data collection are employed. Quantitative data collection includes program reach via

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the number and characteristics of participants and the amount and types of resources utilized by participants. Qualitative methods include program evaluation through debriefing after events/activities and discussing what is still needed as well as through the use of a communitybased participatory approach in development and implementation (e.g. the AHC). Resources and Challenges As Chioma alluded to, funding for the AFIA in MAC has been sought from the CDC and remains uncertain as the CDC allocates its resources based on national priorities. Moreover, there is only a staff of three people in the AFIA program, which makes it more difficult in maintaining operations in light of increasing demands from the community. “Once you have built a relationship, their needs and demands become more transparent, and then they expect more,” Chioma said. However, their engagement with the community would help sustain the activities of AFIA one way or another if it means being able to provide health services. Issues around stigma in HIV/AIDS in this population also remain an issue, as this results in less engagement in programming. AFIA continues to focus their efforts on addressing stigma thought HIV education and awareness. On a broader level, the lack of national awareness of the issues that African immigrants face also impacts the capabilities and visibility of AFIA and MAC as a whole. “There is no national advocacy plan out there or organization on African-immigrant health,” Chioma said. To address this, AFIA has initiated an advocacy effort to petition for the establishment of a “National African Immigrant and Refugee HIV/AIDS and Hepatitis Awareness (NAIRHHA) Day” on September 9th. This petition is still currently circulating. Evidence of Success and Evaluation Formal evidence of program success and evaluation is based on the documentation of people tested for HIV annually, the number of and attendance at outreach sessions, and the

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continued testing and screening among individuals. These quantitative indicators are compared to previous years in order to see trends in service utilization and engagement. On the other hand, Chioma has emphasized that there is also evidence that you “cannot put a value on,” including the trust between the program and community as well as the respect each has for each other. The value of building relationships is at the core of program evaluation and is indicative of success. Case Status: Personal Assessment and Reflection MAC’s AFIA program continues to operate and offer HIV testing and education to its target population. In the interview, Chioma did not indicate any signs that the program is struggling or failing to remain in operation. In retrospect, the overall conversation and research on the organization has led me to conclude that AFIA continues to strive in providing HIV prevention and treatment services not only in Massachusetts but also throughout New England. Based on Chioma’s responses, the following can be concluded: the overall success and evaluation is evident, the role of the population of interest in development and implementation is not only prominent but also essential, and sustainability is possible but needs to be continuously evaluated. The remaining sections of this case study is dedicated to the strengths and challenges that AFIA faces based on the literature, the type of approach they take and possibility of replication in other contexts, and additional frameworks or models to consider. Strengths and Challenges Based on the Literature Several themes arise from the literature when it comes to the strengths of AFIA. From a foundation perspective, AFIA’s consideration of multiple, alternative frameworks highlights their attention to the evolving environment surrounding HIV/AIDS among minority populations.2 Moreover, their use of a CBPR approach to inform their programming emphasizes its the usefulness and sustainability with community collaborative partnerships.3 Within its

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mission, MAC holistically considers the multiplicity of identities, population membership, and the intersection of ethnicity, sexual orientation, and immigration experiences, which is vital to the success of AFIA.4,5 AFIA also remains cognizant of the importance of integrating culturally relevant materials in their program materials and content while employing a multicomponent approach.6 As Chioma has mentioned in the determinants of health, oppressions like racism and homophobia can take a great toll on the community’s health and wellbeing, especially HIV vulnerability.7 AFIA also continues to advocate and focus on HIV testing in immigrant populations while also addressing HIV-related stigma needs and increasing HIV knowledge.8 Ultimately, MAC’s AFIA is able to recognize and acknowledge the significant implications for considering ongoing partnerships between organizations and its target populations.9 As for challenges, Chioma has alluded to limited funding and limited staffing in the organization. Resources and manpower greatly contribute the health determinant of healthcare availability and accessibility and therefore cannot be ignored. On the other hand, there may also be a challenge of limited visibility as evidenced by the lack of national awareness of the health issues that African immigrants face. Without a national priority, visibility could be a problem. Type of Approach and Replication MAC overall appears to take on a model yet unique approach in its AFIA program. Being community-based and a non-profit, AFIA employs several theoretical frameworks that informs the development and implementation of its programming. Thus, their approach can be viewed as a model in itself; however, their use and consideration for multiple components as demonstrated in its strengths can make it appear anything but the standard in their field of public health work. Thus, their approach overall can be viewed in a model yet unique fashion. Because of this, replication of MAC’s approach and health communication strategy can be variable depending on

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the situation and contexts in which it they may be employed. Their take on providing public health interventions would more than likely differ from a public/private for-profit healthcare institution that focuses on efficiency and standardized methods of delivering such services. Additional Framework and Models Among the theoretical foundations that drive AFIA’s program, there may be an overemphasis on using group-focused approaches despite their consideration for multiple identities and the intersections thereof, or at least I thought. This is why I think that one alternative framework for them to consider is the “Cultural Variance Framework” by Davis and Resnicow.10 This framework posits three routes of cultural influence: 1) “identity affiliations” or the individual self-identities; 2) “cultural attributes” or the combination that forms an individual’s subjective culture; and 3) “contextual specificity” or the influence of contextual cues and the degree to which a particular affiliation or attribute may be salient in a specific situation.10

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References 1. Nnaji, C. & Metzger, N. (2014). Black is decidedly not just Black: A case study on HIV among African-born populations living in Massachusetts. Trotter Review, 22(1) Retrieved from http://scholarworks.umb.edu/trotter_review/vol22/iss1/7 2. Alegria, M. (2009). Training for research in mental health and HIV/AIDS among racial and ethnic minority populations: Meeting the needs of new investigators. American Journal of Public Health, 99 Suppl 1, S26-30. doi: 10.2105/ajph.2008.135996 3. Berkley-Patton, J., Goggin, K., Liston, R., Bradley-Ewing, A., & Neville, S. (2009). Adapting effective narrative-based HIV-prevention interventions to increase minorities' engagement in HIV/AIDS services. Health Communication, 24(3), 199-209. doi: 10.1080/1041023090280409 4. Cornelius, L. J., & Hamilton-Mason, J. (2009). Enduring issues of HIV/AIDS for people of color: What is the roadmap ahead? Health and Social Work, 34(4), 243-246. 5. Wilson, P. A., & Yoshikawa, H. (2007). Improving Access to Health Care Among African-American, Asian and Pacific Islander, and Latino Lesbian, Gay, and Bisexual Populations. In I. H. Meyer & M. E. Northridge (Eds.), The health of sexual minorities: Public health perspectives on lesbian, gay, bisexual, and transgender populations: Springer US. 6. Devieux, J. G., Malow, R. M., Rosenberg, R., Jean-Gilles, M., Samuels, D., Ergon-Perez, E., & Jacobs, R. (2005). Cultural adaptation in translational research: Field experiences. Journal of Urban Health, 82(2 Suppl 3), iii82-91. doi: 10.1093/jurban/jti066 7. Nelson, L. E., Walker, J. J., DuBois, S. N., & Giwa, S. (2014). Your blues ain't like mine: considering integrative antiracism in HIV prevention research with black men who have sex with men in Canada and the United States. Nursing Inquiry, 21(4), 270-282. doi: 10.1111/nin.12055 8. Ojikutu, B., Nnaji, C., Sithole, J., Schneider, K. L., Higgins-Biddle, M., Cranston, K., & Earls, F. (2013). All Black People Are Not Alike: Differences in HIV Testing Patterns, Knowledge, and Experience of Stigma Between U.S.-Born and Non-U.S.-Born Blacks in Massachusetts. AIDS Patient Care & STDs, 27(1), 45-54. doi: 10.1089/apc.2012.0312 9. Williams, E., Kanu, M., Williams, C., Jackman, R. M., Alsup, P., Theriot, R., & Wong, S. (2010). Tennessee HIV/AIDS people of color project. Journal of Health Care for the Poor & Underserved, 21(3), 1046-1059. doi: 10.1353/hpu.0.0339 10. Davis, R., & Resnicow, K. (2012). The Cultural Variance Framework for Tailoring Health Messages. In H. Cho (Ed.), Health communication message design: Theory and practice (p. 119). Thousand Oaks, California: SAGE Publications.