The geographic reach of community-based organizations in addressing HIV-related stigma in the Deep South

Abstract

Community-based organizations (CBOs) have been instrumental in addressing the needs of people living with HIV, however, little is known about their efforts to address HIV-related stigma through stigma reduction efforts. This study examined practices of CBOs related to mitigating HIV-related stigma in nine Deep South states. CBOs were surveyed as part of a larger study through the Gilead COMPASS Initiative. The CBO survey asked CBO leadership about stigma in their communities and services available to address this stigma. Survey respondents (n = 207) indicated that HIV-related stigma was perceived as a substantial barrier to both HIV care and CBO services. Although just over two-thirds of survey participants reported that there were group-level programs to address HIV-related stigma, 73% reported that there were not enough interventions to meet the need in their community. Further, 68% reported a lack of individual-level stigma reduction interventions. A majority reported a lack of public media campaigns to address stigma and a lack of training available to assist CBOs to address stigma. In addition, services to address stigma were reportedly less available in rural areas compared to their urban counterparts. Study findings indicate a need to identify, implement, and scale-up effective interventions to reduce HIV stigma in the US Deep South.

Introduction

The US Deep South (Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, Texas) has been disproportionately affected by HIV, with the region experiencing the highest HIV diagnosis rates of any US region from 2008 to 2019 (Centers for Disease Control and Prevention, n.d.-b; National Alliance of State and Territorial AIDS Directors, 2012; Kerr et al., 2014; Reif et al., 2016, 2017). HIV-related stigma has been identified at high levels in the South, especially in rural areas, and is implicated in contributing to the disproportionate HIV epidemic in the Deep South (Ingram et al., 2019; Kalichman et al., 2017, 2019; Kerr et al., 2014; Petrucci et al., 2019; Reif et al., 2017; Stringer et al., 2016; Wooten et al., 2018). Researchers have also found a limited availability of medical care, including culturally affirming providers, and support services in many Southern regions, which further contribute to the disproportionate burden of HIV in the region (Kimmel et al., 2018; Masiano et al., 2019; Siegler et al., 2019; Stringer et al., 2016). Masiano and colleagues estimated county-level drive time to core HIV medical care and support services and found that the counties with greater numbers of diagnosed cases, and the most substantial suboptimal geographic access to HIV care were predominantly in the South, particularly the rural South (Masiano et al., 2019). Further, non-affirming care providers can contribute to HIV-related stigma experiences for PLWH, resulting in discomfort or reluctance to seek care services (Stringer et al., 2016).

HIV-related stigma is characterized in several forms including externalized stigma, the occurrence of a specific act of discrimination; internalized stigma, acceptance of negative ideas and stereotypes as part of one’s own values and beliefs; perceived stigma, a person’s individual thoughts and observations of community-level stigma toward PLWH; and anticipated stigma, fear or expectation of future stigma or discrimination (Bauermeister et al., 2019; Reif et al., 2019). The various forms of HIV-related stigma are often interconnected and have been associated with negative outcomes including barriers to testing, lower levels of medication adherence, fear of disclosing HIV status, and poorer retention in medical care (Fortenberry et al., 2002; Katz et al., 2013; Kinsler et al., 2007; Mahajan et al., 2008; Sayles et al., 2009; Tan & Black, 2018; Wise et al., 2019). A survey of PLWH in the Deep South found that over one-third of participants had experienced being insulted, scolded, or called names because of their HIV status within the last three months, and that experiencing high levels of externalized stigma was associated with greater levels of internalized stigma (Reif et al., 2016). Interventions aimed at reducing HIV-related stigma are critical to reducing the negative outcomes associated with stigma. Intervention may target individual behavior, attitudes, and knowledge or broader social and environmental change related to stigmatizing attitudes and behavior (Pulerwitz et al., 2010). Due to the interconnectedness of stigma forms, interventions may address multiple forms of stigma simultaneously.

Community-based organizations (CBOs) have played a critical role in providing HIV-related services (Chillag et al., 2002; Jemmott et al., 2010), and are vital in engaging PLWH in care in the Deep South (Brewer et al., 2019, 2018; Burns et al., 2020; McCree et al., 2019; Shapatava et al., 2018). CBOs’ community presence and connection with PLWH through service provision situate them to offer services that reduce HIV-related stigma. However, there is limited information about HIV-related stigma reduction efforts offered by CBOs in the Deep South. This study investigates the provision of stigma services by CBOs providing HIV care in the US Deep South by examining the results of a survey of CBOs in the region. Addressing HIV-related stigma may be particularly critical in geographic areas of the South that have been identified as significant drivers of the epidemic. In the federal plan for Ending the HIV epidemic (EHE), seven states with high rural HIV burden; and 48 HIV “hotspot” counties plus Washington, DC and Puerto Rico were identified as priority jurisdictions for resources and funding as they represent more than half of new HIV diagnoses (Fauci et al., 2019). Three of these states and 20 of these counties are located in the Deep South. The findings of this study provide insight into efforts that currently exist to address HIV-related stigma in the Deep South, as well as identify service gaps and barriers that can be used to devise strategies to more optimally support CBOs to address HIV-related stigma and its negative consequences.

Methods

The Gilead COMPASS (COMmitment to Partnership in Addressing HIV/AIDS in Southern States) Initiative is a ten-year effort that was launched in 2017 to address HIV in the South by supporting CBOs and stakeholders to meet the needs of PLWH, promote holistic wellness, and reduce HIV-related stigma (Gilead COMPASS, n.d.). The COMPASS Initiative conducted two surveys of organizational representatives of CBOs identified as offering services for PLWH in the Deep South states. A preliminary survey was used to develop a database of service locations in the South including individual stigma interventions (e.g., individual counseling or individual peer support) and group-level stigma interventions (e.g., social support groups); harm reduction; trauma-informed care; and presence of additional services such as mental health services and substance use treatment. CBOs were identified using NPIN (the National Prevention Information Network) (Centers for Disease Control and Prevention, n.d.-a), SAMHSA’s database of behavioral health providers (U.S. Department of Health & Human Services, n.d.), and the cohort of COMPASS CBO partners/applicants.

To be included in the preliminary survey sample, organizations collected from the SAMHSA database had to indicate that they either worked with PLWH or with sexual and gender minorities. To enhance the preliminary survey response rate, phone calls were made to organizations who had not completed the survey and they were asked to complete a subset of questions via phone. A second online survey was conducted to gain greater depth on the nature of and the availability of services to address HIV-related stigma. Organizational representatives that completed the preliminary COMPASS survey were contacted to assess their interest in completing the second survey. The second survey inquired about types of stigma reduction interventions and the impact of community-level HIV-related stigma. A $10 Amazon gift certificate was used to enhance participation. Three hundred and forty CBOs were identified from participants in the preliminary survey, 207 of those CBOs completed the second COMPASS survey.

Measures and analysis

To identify the presence of a stigma reduction intervention, respondents were asked: “Are there organizations in your county/surrounding counties that provide programs to reduce stigma for individuals living with HIV in a group setting?” A similar question asked about programs to address HIV-related stigma on an individual basis.

To determine whether counties were covered for services by the CBOs, survey respondents were asked to list the counties where they provided any services. To identify the primary counties for each CBO, respondents were asked: “What two counties are the majority of your clients from?” Further, to identity the rurality of a county, data from the National Center for Health Statistics (NCHS) Rural-Urban Classification Scheme (National Center for Health Statistics, 2013) were used to identify counties as Large Central Metropolitan, Large Fringe Metropolitan, Medium Metropolitan, Small Metropolitan, Micropolitan, or Non-core (rural).

Descriptive statistics were used to characterize the CBOs and their provision of stigma services and to depict accessibility to stigma services. Maps were generated with an indicator of the presence or absence of group-level HIV stigma interventions in the county, and three overlays for each county indicating: (1) the county was a primary or served county (not a primary county but a county that was served by a CBO) by CBOs participating in the survey; (2) the rural-urban classification per the National Center for Health Statistics; and (3) counties and states identified in the proposed plan for EHE.

Results

CBO survey

Survey participants (N = 207) were from CBOs located in Florida (n = 49, 23.7%), Georgia (n = 37, 17.9%), Texas (n = 31, 15.0%), Alabama (n = 13, 6.3%), Louisiana (n = 16, 7.7%), Mississippi (n = 8, 3.95), North Carolina (n = 22, 10.6%), South Carolina (n = 19, 9.2%), and Tennessee (n = 12, 5.8%). Over half of the organizations represented in the survey indicated that 75% or more of their clients resided in the county where they were located (n = 111, 53.65%), and nearly 40% indicated that more than 25%, but less than 75% of their clients resided in the county where the CBO was located (n = 81, 39.1%) (Table 1). CBOs served 819 out of 934 Deep South counties.

Table 1.

HIV-related Stigma and Community-based Organizations in the Deep South (n=207)

Approximately what percentage of your clients would you estimate have to spend more than 30 minutes in travel time to receive services at your organization? (n=205)
25% or less	106	51.7%
More than 25% but less than 75%	91	44.4%
75% or more	8	3.9%
Do you think HIV-related stigma affects clients’ participation and engagement in your programming? (n=199)
Not at all	13	6.5%
Somewhat	84	45.2%
Very much	90	45.2%
Not sure	12	6.0%
Do you think HIV-related stigma affect clients’ participation and engagement in health care in general? (n=199)
Not at all	4	2.0%
Somewhat	72	36.2%
Very much	120	60.3%
Not sure	3	1.5%
Are there public/social media campaigns in your area that address HIV-related stigma? (n=199)
No	37	18.6%
No, but there are social media campaigns that aim to raise awareness about HIV	73	36.7%
Yes	63	31.7%
Unsure	26	13.1%
Are there any trainings available to help organizations address HIV-related stigma in your area? (n=199)
No	40	20.1%
No, but there are trainings that include discussion of HIV-related stigma	59	29.6%
Yes	44	22.1%
Unsure	56	28.1%
Are there organizations in your county/surrounding counties that provide support groups for individuals living with HIV that address stigma? (n=199)
Another organization provides	59	29.6%
No	27	13.6%
Your organization provides	82	41.2%
Unsure	31	15.6%
Are there organizations in your county/surrounding counties that provide programs to reduce stigma for individuals living with HIV in a group setting (n=199)
Another organization provides	40	20.1%
No	63	31.7%
Your organization provides	96	48.2%
Are there enough group-level stigma interventions to meet the needs? (n=199)
No	146	73.4%
Yes	11	5.5%
Unsure	41	20.6%
This service is not needed	1	0.5%
Are there organizations in your county/surrounding counties that provide programs to reduce stigma for individuals living with HIV in a one on one setting? (n=197)
Another organization provides	42	21.3%
Not aware that any organization provides	65	33.0%
Your organization provides	90	45.7%
Are there enough individual-level stigma interventions to meet the need in your county/surrounding counties? (n=198)
No	137	69.2%
Yes	11	5.6%
Unsure	48	24.2%
This service is not needed	2	1.0%

Nearly all survey participants indicated that HIV-related stigma “somewhat” or “very much” impacts client participation and engagement in health care in general (n = 192, 96.5%), and the vast majority of survey participants reported that HIV-related stigma affects client participation and engagement in their organizations’ programs “somewhat” or “very much” (n = 174, 87.4%) (Table 1). Just under one-third of survey participants indicated that there are public or social media campaigns in their county or surrounding counties that address HIV-related stigma (n = 63, 31.7%), and 37% of participants indicated there are social media campaigns that aim to raise awareness about HIV (n = 73). Only one in five participants indicated that there are any trainings available to help organizations address HIV-related stigma in their county or surrounding counties (n = 44, 22.1%); 29% indicated that there are trainings in their area for organizations that include discussion of HIV-related stigma (n = 59).

Over two-thirds of survey participants indicated that either their organization or another organization in their county or surrounding area provides programming to reduce stigma for PLWH in a group setting (n = 136, 68.3%); nearly one-third indicated they were unaware of any organization providing these services (n = 63, 31.7%). Additionally, three-quarters of participants indicated that there are not enough group-level stigma interventions to meet the need for this service (n = 146, 73.4%). Of the 176 counties that were identified as primary counties of service by the CBOs, 121 (69%) counties were identified to have group-level stigma programs, comprising 12% of the 934 total counties in the Deep South (Figure 1). Almost half of the organizations represented in the survey indicated that they provide support groups for PLWH that address stigma (n = 82, 41.2%), and nearly one-third indicated that another organization in their county or surrounding area provides support groups for PLWH that address stigma (n = 59, 29.6%).

Figure 1.

Primary, secondary, served and HIV group stigma programs.

Two-thirds of participants indicated that they or another organization in their county or surrounding area provided programs to reduce stigma for PLWH on an individual basis (n = 132, 67%); one-third were unaware of any stigma programs to reduce stigma on an individual basis (n = 65, 33.0%). Over two-thirds of participants indicated that there are not enough programs to reduce stigma on an individual basis (n = 137, 69.2%).

Identification of CBO service distribution

Out of the 934 Deep South counties, we identified CBOs providing group stigma interventions in 17 out of 18 (95%) Large Central counties; 19 out of 114 (17%) Large Fringe counties; 45 out of 152 (30%) Medium counties; 23 out of 111 (21%) Small counties; 7 out of 182 (4%) Micropolitan counties; and 10 out of 357 (3%) Non-core counties, which are indicated as the most rural by the NCHS Urban-Rural Classification Scheme (Figure 2).

Figure 2.

NCHS urban-rural classification scheme and HIV group stigma programs.

With regards to the 48 hotspot counties identified by the EHE initiative (Figure 3), 20 are located in the Deep South (Table 2). Survey participants reported on existing HIV-related stigma interventions in all but one of the 20 counties, and nearly all (95%; n = 19) of these counties had group-level stigma interventions. However, survey participants reported that none of the counties had enough group-level interventions to meet the need. A majority of the 20 targeted Deep South counties had public/social media campaigns (n = 13, 65%) or support groups (n = 17, 85%) that addressed stigma, but fewer had organizational trainings available for educating CBOs on HIV-related stigma programming (n = 10, 50%). Alabama, Mississippi, and South Carolina contain 58 out of the 704 completely rural counties in the US, and very few survey participants indicated that there were group or individual HIV-related stigma interventions in those 58 counties (n = 4; 7%). Comparatively, Alabama, Mississippi, and South Carolina have 72 urban counties, 27 (37.5%) of which were reported to have group-level HIV stigma interventions, and 28 (38.9%) had individual-level HIV stigma interventions. However, survey participants also identified that 25 of those 72 urban counties (34.7%) did not have enough individual or group-level HIV stigma interventions to meet the need.

Figure 3.

Ending the HIV epidemic counties, states, and HIV group stigma programs.

Table 2.

Ending the Epidemic Counties in the Deep South and Stigma Interventions

County	Est. HIV Prevalence	Group Stigma Programs	Enough Group Stigma Programs?	Public/Social media Programs	Support group	Organizational training
Broward, FL	1177.3	Yes	No	Yes	Yes	Yes
Duval, FL	768.7	Yes	No	No	Yes	No
Hillsborough, FL	589.9	Yes	No	Yes	Yes	Yes
Miami-Dade, FL	1116.3	Yes	No	Yes	Yes	No
Orange, FL	742.9	Yes	No	Yes	Yes	Yes
Palm Beach, FL	616.2	Yes	No	Yes	Yes	No
Pinellas, FL	516.7	Yes	No	Yes	Yes	Yes
Cobb, GA	500.2	No data	No data	No data	No data	No data
DeKalb, GA	1346.4	Yes	No	Yes	Yes	Yes
Fulton, GA	1707.2	Yes	No	Yes	Yes	Yes
Gwinnett, GA	380.0	Yes	No	Yes	Yes	No
East Baton Rogue, LA	1068.6	Yes	No	Yes	Yes	Yes
Orleans Parish, LA	1478.3	Yes	No	Yes	Yes	Yes
Mecklenberg, NC	648.0	Yes	No	Yes	Yes	No
Shelby, TN	812.6	Yes	No	No	Yes	Yes
Bexar, TX	389.8	Yes	No	No	No	No
Dallas, TX	848.9	Yes	No	No	Yes	No
Harris, TX	677.9	Yes	No	No	Yes	No
Tarrant, TX	338.6	No	No	No	No	No
Travis, TX	469.5	Yes	No	Yes	Yes	Yes

^*2018 Prevalence rate per 100,000 from CDC Atlas Plus, 2018.

Discussion

This study examined the perceptions of CBO representatives regarding HIV-related stigma, and the provision of interventions to reduce HIV-related stigma in the Deep South states. Among stakeholders from CBOs in the Deep South, HIV-related stigma was perceived as a substantial barrier to both HIV care and CBO services. Although just over two-thirds of survey participants reported that there were group-level stigma interventions in their area, 73% reported that there were not enough interventions to meet the need, and 68% reported that there were not enough individual-level stigma reduction interventions. A majority of survey participants also reported that public media campaigns and trainings addressing HIV-related stigma were lacking.

As expected, study findings suggest a rural-urban divide in the reach of CBOs to address HIV-related stigma in the Deep South. Alabama, Mississippi, and South Carolina were among the seven EHE states identified with a disproportionate burden of HIV in rural areas (Fauci et al., 2019), and may require infrastructure development and additional resources to adequately address HIV-related stigma. The findings of this study also support previous work suggesting that interventions to address HIV-related stigma are needed in both small urban and rural areas (Kalichman et al., 2017), as stigma-related intervention availability was reported as insufficient in many urban areas in the Deep South. In addition, all of the metropolitan EHE counties were identified as needing implementation of more stigma reduction interventions.

Stigma-support services have shown promise in improving retention in HIV care (Oliver et al., 2019). However, the evidence to support the effectiveness of stigma-reduction interventions provided by CBOs is lacking, thus it is critical to evaluate the outcomes associated with HIV-related stigma services currently available in the Deep South and to develop and test additional strategies to provide options for CBOs to reduce stigma. There are a few published interventions to address HIV-related stigma that have been developed and tested in the South (Barroso et al., 2014; Rao et al., 2012; Relf et al., 2015) and indicate promise for scaling-up to address both community and individual-level stigma in Southern communities. For example, the FRESH workshop, a multilevel stigma-reduction intervention for healthcare workers and PLWH demonstrated feasibility and acceptability in a pilot test conducted in Birmingham, Alabama (Batey et al., 2016). Another intervention, HealthMPowerment, resulted in HIV stigma reduction by providing a space for participants to discuss HIV-related topics and stigma via web-based forums (Bauermeister et al., 2019). The LEAD Academy, an intensive advocacy training for PLWH, was associated with a statistically significant reduction in internalized stigma (Reif et al., 2021). Lastly, researchers initiated a public mass media (television and radio ads) campaign in four large cities (two Deep South) and found an increase in HIV-related knowledge and reduced stigma (Kerr et al., 2015).

Faith-based organizations (FBOs) have been identified as one potential promising partner for implementing stigma interventions in the Deep South (Stewart et al., 2019), as they often are already located and integrated with communities where services are needed. For example, in Alabama, a statewide partnership with the University of Alabama Birmingham and the African Methodist Episcopal (AME) church to train clergy and laity showed promise in the implementation of HIV awareness and education, with study findings identifying small changes in HIV stigma-related attitudes of clergy participants (Lanzi et al., 2019). Researchers also describe that text messaging, online support groups, telehealth, and other web-based interventions would be acceptable and feasible options to address HIV-related stigma through education, discussion, counseling, and skill development for PLWH and healthcare providers (Rao et al., 2018).

Currently, federal funding to address HIV-related stigma is largely indirect, through the provision of community-level education and individual-level services rather than directly addressing stigma. Future EHE strategies may need to directly fund the enhancement of geographic reach to address HIV-related stigma.

The findings of this study need to be considered in the context of the study limitations. There are a substantial number of counties not represented in this analysis that we did not have information regarding the availability of stigma services for or availability of a CBO that is currently providing any HIV-related services. There may be other organizations offering stigma-related interventions in these counties that were not included in this analysis because they are not represented in NPIN or SAMHSA databases or opted against study participation. We focused our analysis on the one–two counties where participants reported that the vast majority of their clients resided (primary counties). However, 80% of participants listed additional counties that they serve that were not included in this analysis since the questions regarding stigma services focused on the county of location and surrounding counties. Thus, we may have underestimated the reach of stigma interventions by not including these non-primary counties served by CBOs as receiving any HIV-related stigma intervention. Future studies may identify additional organizations offering stigma reduction services in the Deep South and investigate the changing infrastructure of HIV CBOs postCOVID-19.

Public Health implications.

There appears to be an urgent need to rapidly implement and scale-up HIV stigma services in rural and urban Deep South areas. Efforts may require CBO, FBO, and university collaborations; evaluation of currently implemented stigma reduction interventions; and development and testing of new stigma reduction interventions. Adaptations to the implementation and delivery of HIV stigma programs, including expansion of telehealth and mHealth applications for PLWH in the Deep South may also be critical to achieve the ambitious goals of EHE, particularly in the setting of COVID-19.