Ending the HIV Epidemic: One Southern Community Speaks

Abstract

Memphis, Tennessee and its surrounding counties have been profoundly affected by the HIV epidemic. Using a participatory research approach this study identified from a community perspective: 1) the barriers and facilitators for providing support to achieve viral suppression to the most at-risk groups living with HIV in the Memphis Transitional Grant Area and 2) opportunities to strengthen the health care system through the use of community health workers (CHWs) to do outreach and engage with people living with HIV. Themes of barriers include intersectional stigma, HIV criminal laws, abstinence-only sex education, housing, transportation, and limited access to HIV case management and mental health services. Strategies to address these barriers included HIV education to youth in schools and community-wide campaigns, more testing sites, involving faith leaders, funding for housing options, innovative transportation services, rapid start of culturally appropriate HIV medical treatment, intensive case management services, and mental health counseling. Two opportunities to utilize CHWs to address the barriers identified in this geographic area are as policy advocates and as an integrated member of the HIV primary care team. The findings of this study can inform a strategy to build the CHW workforce which may have widespread implications for ending the HIV epidemic in this geographic area and across the United States.

Major advances in treatment have made HIV a manageable long-term condition (American Academy of HIV Medicine, 2020). So, it is very troubling that despite the medical and scientific advancements in HIV prevention and treatment that health disparities still exist for African Americans who account for a higher proportion of new HIV diagnoses and people already living with HIV, compared to other races/ethnicities, particularly in the United States (U.S.) South. Although African Americans only represent 13% of the U.S. population, they accounted for 43% of new HIV diagnoses in 2017 (Centers for Disease Control and Prevention [CDC], 2019a). The higher prevalence rates of HIV among African Americans is linked with social factors and structural determinants; higher rates of poverty, residential segregation, urbanicity, incarceration, and unequal opportunities to access education and employment (Laurencin et al., 2018; Shrage, 2016; Sutton et al., 2017). Social workers and public health practitioners share the common goal of improving health outcomes, therefore, examining strategies that are generated by means of community participation and involvement to diminish the disproportionate burden of HIV in African American communities may be of great interest.

One community in the South that has been profoundly affected by the HIV epidemic is Memphis, Tennessee and its surrounding counties. There are an estimated 8,000 people living with HIV in the Memphis Transitional Grant Area (TGA) which is comprised of Shelby County, Tennessee along with seven other counties in the tristate region of MS, AR, and west TN. The Memphis TGA ranked 8th in terms of new HIV infections (26.4 per 100,000 persons) among the metropolitan statistical areas in 2017 (CDC, 2019b). Shelby County was named as one of the geographic focus areas prioritized to receive additional resources, technology, and expertise to expand HIV prevention and treatment activities as part of the National Plan to End the HIV Epidemic (U.S. Department of Health and Human Services, 2019).

Data indicate that, of the 6,727 people living with HIV (PLWH) from three counties in the West TN region of the Memphis TGA, only 54% (3,631) had achieved viral suppression. Moreover, of the 3,096 (46%) people with HIV who did not achieve viral suppression, approximately half have been diagnosed but are not in care, one-fourth were in care but not on antiretroviral treatment (ART), and a fourth were on ART but not suppressed (Tennessee Department of Health Enhanced HIV/AIDS Reporting System, 2017). Certain populations, including African Americans, men who have sex with men (MSM), and youth are consistently linked to care at lower percentages compared to all individuals newly diagnosed with HIV (Tennessee Department of Health, 2020).

There are a number of individual, provider and system level barriers that pose challenges for improving initiation and sustainment of ART among people with HIV. In Memphis socioeconomic inequality is evidenced by the poverty rate for African Americans (33.8%) being 2.5 times greater than that of White Americans (11.8%; Delavega & Blumenthal, 2019). HIV stigma and discrimination are widely reported, especially among MSM and transgender people, due to conservative and religious beliefs around sexual orientation and HIV risk behaviors. People with HIV face discrimination due to racism, poverty, criminal history, mental illness and substance use; all factors which affect access to health care (Jeffries & Henny, 2019).

At the community level, there are a limited number of experienced HIV care providers and there are reports that medical providers are reluctant to prescribe ART to some people with HIV due to their perceived chaotic and unstable lives. Additionally, the current HIV care system in the Memphis TGA is fragmented often requiring that adults with HIV obtain services with different providers at a variety of locations. This lack of access to all services needed at one location makes it difficult for county residents and challenging for rural residents to obtain care. The city of Memphis is the hub for many of the Ryan White funded medical and social services providers. This presents a 1–2-hour drive for people with HIV coming from rural counties of west TN, MS, and AR. Finding ways to engage people with HIV in medical care in this tristate area is critical if progress is to be made in ending the epidemic.

The U.S. Department of Health and Human Services (2019) has proposed the Ending the HIV Epidemic: A Plan for America (EHE) initiative to end the HIV epidemic in the United States (U.S.) within 10 years. This plan focuses on bringing financial resources as well as workforce training and technical assistance to geographic areas that are hardest hit by HIV, many of which are in the southern states. Although the U.S. South accounts for 38% of the national population, in 2017 52% of new HIV cases were located in this region (CDC, 2019a). Further, it has been found that over 80% of all new infections are associated with undiagnosed and untreated individuals (Henny & Jeffries, 2019). This pattern of transmission is largely related to resource deprivation associated with poverty and marginalization, including lack of health care and associated public health services (Hiers, 2020). The EHE initiative creates the opportunity to prioritize collaborations and community-derived plans to address the social and structural inequities contributing to persistent high rates of HIV in the southern region (Henny & Jeffries, 2019). Targeting these geographic areas most affected with resources and technology can be an effective way to address racial/ethnic disparities in HIV diagnosis rates (McCree et al., 2020).

Health care delivery has steadily shifted from the hospital to the community, and from specialty providers to integrated health care models that focus on whole person care, achieving the goals of ending the HIV epidemic requires novel approaches that actively engage community stakeholders. Research has found that incorporating community health workers (CHWs) into health care teams is a promising practice for improving HIV outcomes in underserved populations (Cabral et al., 2018; Drainoni et al., 2020; Kenya et al., 2011; Wheeler, 2011). The CHW model can be a culturally appropriate strategy to reduce health disparities among people and communities disparately affected by HIV (Spencer et al., 2010). According to the American Public Health Association (APHA), CHWs are frontline health care staff who can bridge the gap between a person’s need for clinical services and their everyday needs in the community (APHA, 2014).

Systematic reviews of randomized controlled trials support the benefits of using CHWs in promoting health among people who are at risk for health disparities (Kenya et al., 2011; Kim et al., 2016). However, to date the evidence to support the benefits of integrating CHWs in HIV care teams in the U.S. is limited. A recent systematic review examining studies of psychosocial outcomes of CHW interventions among people living with HIV found small or inconsistent results in the outcomes measured possibly due to the lack of or inconsistent efficacy of interventions (Han et al., 2018). Variation in training and workforce composition may also be associated with inconsistent outcomes. CHWs may have different job titles and duties depending on the setting in which they work. This discrepancy makes comprehensive standardization of training difficult (Hartzler et al., 2018). Core competency training for all CHWs across the health workforce is needed as well as training specific to the work setting and, in the disease, and treatment-specific health condition of their clients (Covert et al., 2019).

In an effort to enhance the CHW workforce in the Memphis TGA, a community-university partnership between university researchers from Boston University, University of Massachusetts at Lowell, University of Memphis and the Shelby County Health Department set out to work with persons living with HIV and community leaders to identify the barriers to viral suppression that people living with HIV were facing. Understanding these challenges, from the perspective of members within the community, may offer promising new opportunities to use community health workers to support PLWH in the health care system.

Theoretical Orientation

Historical social and economic disadvantages in the Southern U.S. have impacted the current conditions in the environment. A holistic view of health includes social factors in the environment in which people live that affect a wide range of health, functioning, and quality-of-life outcomes (Sprague et al., 2020). When there are disparities in health status this reflects inequities on other social and economic indicators (Metzler, 2007).

The Social Ecological Model highlights the reciprocal interaction between individuals and their social environment (McLeroy et al., 1988). This framework posits that there are five levels of factors that reciprocally interact to influence behavior, from the individual level (intrapersonal and interpersonal) to institutional, community, and public policy (McLeroy et al., 1988). The Social Ecological Model illustrates how social, physical, and environmental factors influence behavior. This includes contextual and relational influences on health, such as social and community networks, living and working conditions, institutional influences, and political and economic policies—all of which interact to shape population and individual health. Furthermore, the model supports the active involvement of community members in identifying the priority health concerns affecting their community as well as appropriate interventions for implementation and evaluation (McLeroy et al., 1988). A core role of the CHW is to serve as a bridge between health and social service providers and the community to address social determinants of health and improve the quality and cultural competence of service delivery (APHA, 2014).

Using the Social Ecological framework, this article describes a community engaged approach to develop and refine strategies for using community health workers to achieve viral suppression for vulnerable populations in the Memphis TGA in accord with the EHE initiative.

The following research questions were addressed:

1. What are the current barriers and facilitators for people living with HIV with achieving engagement in care and viral suppression in the Memphis TGA?

2. What are the opportunities for community health workers, as members of the HIV care team, to address the barriers?

Methods

Sample and Recruitment

People living in the eight counties of the Memphis TGA were recruited for this study. A convenience sample included community stakeholders, including community health workers, people living with HIV and HIV providers involved directly or indirectly in HIV care and services in the Memphis TGA. Participants were recruited through professional networks which serve the HIV community. This study’s researchers attended group meetings of Connect to Protect (an HIV prevention, care, and treatment coalition), the Shelby County Ryan White case managers meeting and the Ryan White HIV-Care and Prevention Group (H-CAP) where key stakeholders would be in attendance, to describe this study and invite members to participate.

Data Collection Methods

Questionnaire.

The questionnaire was designed to collect information on the types of services that people living with HIV in the Memphis TGA needed and the role that community health workers had in providing these services. It was developed by researchers, health department staff and community-based leaders affiliated with a CHW program for people living with HIV. Characteristics collected from participants included a) their connection to the HIV community in Memphis, b) occupational status and c) agency affiliation. Thirteen questions asked about strengths and barriers to HIV care and the use of community health workers in agencies serving people with HIV in the Memphis TGA. Table 1 lists the specific items on the questionnaire. The paper questionnaire was administered at three community meetings.

Table 1.

Questions on the Questionnaire

1. What do you think are the major concerns for people when getting HIV services like testing or HIV care and treatment?
2. Given what you know about the available HIV services in the Memphis TGA, what do you think is most useful to help people get HIV care and treatment?
3. What services do you wish were available or available more often for people with HIV?
4. Are there any groups of people in the community who have HIV and struggle with being able to meet their care needs? If yes, who are they?
5. What could help people with HIV who have a hard time staying in medical care or taking their medications?
6. Do you have Community Health Workers (CHWs) employed or volunteering at your agency or in your community?
7. What titles are used for CHWs at your agency or in your community?
8. What types of services do CHWs provide to people with HIV in your agency or community?
9. What CHW services would be helpful in your community?
10. What populations do CHWs serve in your community?
11. Who do CHWs work with in your agency or community?
12. Which community agencies work with CHWs to address client needs?
13. In your community what would help increase or improve CHW services for people living with HIV to help with obtaining needed services, self-management and viral suppression?

Workshop.

A two-day community-based participatory workshop was held in October 2019 with 30 people living with HIV and/or HIV service providers. The workshop was designed to bring together community leaders to share findings from the questionnaire and work together to draft an implementation strategy to strengthen the CHW workforce. Specifically, participants were asked to (1) assess perceived barriers a person may face when seeking HIV testing, engaging in HIV care or managing life with HIV, (2) develop possible solutions, strategies and available resources to address these gaps and barriers, and (3) identify roles that community health workers can play in addressing these barriers to help people with HIV achieve viral suppression and self-management.

Data were collected through research notetakers and collection of all products created during the workshop. Each workshop participant was assigned to be a member of a small work group with which they stayed in for the two days of activities. These seven work groups represented the following vulnerable subpopulations of people living with HIV in the Memphis TGA; (a) persons experiencing homelessness, mental health or substance use, (b) persons living in rural areas, (c) persons over 50 years old, (d) persons with a history of involvement with the criminal justice system, (e) transgender persons, (f) women, or (g) youth and young MSM.

Facilitators guided participant work groups through process mapping and free list exercises to identify the barriers to engaging in care and treatment (activity 1) and potential solutions (activity 2). In activity 1 participant groups created a visual “story board” that described their subpopulation and recorded the challenges and barriers faced by that subpopulation when accessing HIV care and reaching viral suppression. For example, someone living with HIV who is over 50 years old may face barriers to achieving viral suppression due to living with other comorbid illnesses that also require complex treatment and medication regimes. Activity 2 had participant work groups continue on to create a second story board drawing out proposed solutions, strategies and available resources to address the barriers identified. To continue the example, linking a person over 50 who is living with HIV and other comorbid illnesses with a CHW can facilitate improved medication management through coaching and support.

In activity 3 participant work groups discussed the definition of a CHW and how a CHW could help a person with HIV along each step of the care continuum. Using the HIV care continuum, participants identified the roles that CHWs play in each step, wrote the task on a Post-it note and placed it on the poster under the step that the action supports. In activity 4 participant work groups performed a pile sort activity to rank the top ten roles and tasks that CHWs have when working as part of an HIV care team that were needed for their subpopulation to reach viral suppression. Each individual participant was also given three round stickers and was asked to put the dots on the index cards choosing the top three services that CHWs need to focus their work on to get PLWH to viral suppression.

Data Analysis

The data from both sources, the questionnaire and the two-day workshop, were combined and analyzed to answer the research questions. All data from the questionnaires were entered into survey software. Descriptive statistics and short answers from the questionnaire were merged with the qualitative data obtained from the two-day workshop.

During the qualitative data analysis process, common themes were identified that emerged from the participant discussions and small group activities. All data created during the workshop was collected and documented (the ‘barriers’ story boards, the ‘solutions’ story boards, the pile sort data). Open themed responses were read through by two researchers who identified the most frequently reported cross-cutting themes at the individual, community and structural level. Each researcher prioritized the key themes and ranked them in order of frequency. All study procedures were reviewed and approved as exempt by a university institutional review board.

Results

Participants

Fifty-seven people completed questionnaires and 30 persons attended one or both days of the community based participatory workshop. Upon examining both lists of participants, eleven individuals participated in both the questionnaire and the workshop, and so they were only counted once for the purpose of this sample description. The total number of unduplicated participants in this study was 76. Fifty-three of the participants were employed by an agency or organization that provided services to the HIV community. Employed participants were from 20 distinct, and mostly local, agencies. Twenty-three participants identified themselves as community members or consumers of HIV services.

Barriers to Care Facing People with HIV in the Memphis TGA

Results reveal that the barriers facing individuals with HIV in accessing HIV care and treatment are many and intertwined. Barriers are reported by themes that can be understood as being situated across social ecological levels of policy, community, institutional and individual factors. Themes include HIV stigma, intersectional stigma, HIV criminal laws, abstinence-only sex education, housing, transportation, health system access, case management and mental health.

HIV stigma.

An overarching theme, embedded within participant responses, is that an essential barrier to HIV testing and engagement in care in this Mid-South community is the stigma, discrimination and ignorance surrounding HIV. The cultural and religious influences that are part of this community and its history, supported by many faith-based organizations, pass judgment on and condemn people who have HIV, resulting in stigma. A participant explained why people with HIV do not get into care, saying that “of all services [a person] could access at [the clinic], stigma is a barrier, one of the biggest is ‘I don’t want to do that’ because of stigma. The stigma is going to get you.” Two other workshop participants added,

Over the years I’ve heard, ‘why is it so hard to get HIV under control in this area?’ Because you are in the Bible belt. We are in the South. We can’t uproot the church; we have a church on every street corner. We have a very, very heavy church presence.

It’s not about needing the pastor, it’s about wanting to change the stigma about how the South views HIV. My experience engaging my pastor was not a good experience. I was an usher [in church], I served, my pastor knew all the dirt on me. When he found out about my diagnosis, he turned his back on me.

Confirming the harsh judgment that some faith communities have about people living with HIV, a participant said, “As far as pastors…a lot of them preach negative against homosexuality and AIDS. As a trans woman with HIV the pastor would be the last person I would worry about. I praise God regardless.” Another participant said, “Attending church, the [non-]acceptance [of people living with HIV] and preaching against it. Through experience, I had a cousin who was transgender, they are human beings as well, treat them as an individual.” These comments made by study participants describe how people whose sexual orientation or gender identity does not fit into traditional, culturally determined gender rules are often rejected by the church and their own families.

Intersectional stigma.

Transgender persons living with HIV face an intersectionality of stigma and discrimination because of not being accepted for who they are. One African American transgender woman reported that not being accepted by their church and families often means that they are left to fend for themselves without emotional or instrumental support. Further, transgender people living with HIV are coping with discrimination, particularly in areas of housing and employment, which may result in engaging in sex work for economic survival. Societal prejudice places transgender persons at high risk for experiencing violence and being monitored by law enforcement.

State HIV criminal laws.

The state of Tennessee has two very harsh HIV-specific laws; criminal exposure to HIV and aggravated prostitution. Persons arrested under these laws are classified as felons and are required to register as violent sex offenders permanently. A participant gave the following hypothetical situation of a transgender woman to illustrate some of the challenges a transgender person may experience due to the conservative political and religious culture as well as state HIV criminal laws:

She dropped out of school. Trans. Homeless. Picked up for prostitution and tested positive for HIV. Caught in an undercover sting and charged with aggravated prostitution. She is now on the sex offender registry. You can’t stay with your family; you can’t go live with your grandmother if it is near a church or school. The residence has to be registered. Criminalization is going to be more difficult because you’re talking about laws and policies. It takes a long time. If you leave the state of Tennessee you have another charge coming on you.

Abstinence only sex education.

Additionally, the policy issue of state regulated abstinence-only sex education in Tennessee (Tenn. Code Ann. 49–6-1301 et seq., 2020), advanced by conservative organizations and legislators, is viewed by participants as unacceptable and harmful. A participant related how this lack of education creates “many challenges for youth and young MSM…. There is a lack of comprehensive sex education in the school which means that youth may not be knowledgeable about HIV prevention methods.”

Limited housing options.

Several barriers were identified at the community level. Among those barriers housing was a prevalent theme of participants’ responses. “Young MSM may be kicked out of the home for revealing their sexual orientation” said a participant. Youth living with HIV are at risk of homelessness. Parental support may be lacking or worse, it may be contentious. A workshop participant said, “Momma and daddy put him out. He has to sleep on the streets. Where is he going to keep the medication and store it?” Regarding access to housing a participant said, “Housing is an issue. If you have a felony charge, where can you actually stay?”

Transportation barriers.

Lack of transportation creates a challenge, not only to regularly seeing a medical provider, but also the ability to fill prescriptions, even when the cost of these medical services are covered by the Ryan White program. The Memphis TGA has limited reliable public transportation within the urban areas and PLWH in rural areas may need to drive up to 1.5 hours for services and need funds for fuel. People who have no means of transportation are dependent on others to get them to appointments and other needed services, “even just going to the grocery store.” A participant said, “who is going to drive me and pick me up and take me some place safe. In a rural area, there aren’t vans or transportation. There are no resources.”

Health system barriers.

Access to care, prompt care and quality of health care were highly ranked barriers. Access to care issues include the cost of care and treatment, the cost of medications and transportation to get to the provider. A participant wrote, “I think access to care is the most important. Having these places that take uninsured patients should be more well-known and accessible to those living with HIV.” Another participant pointed out that clients are asking themselves if “they will be able to afford the cost of being seen by HIV provider and if they will be able to afford the medication.”

Receiving prompt access to quality HIV health care was noted as being a barrier for people with HIV. Participants explained that in the current health care system when a person tests positive they may have to wait up to a month for a medical appointment. This leads to people being diagnosed but not immediately connected to care. Most newly diagnosed individuals are tested at the Shelby County Health Department and then must be referred to a medical provider in the community to begin treatment. The length of time it takes to receive a new patient appointment and the long wait times at the clinics were reported as barriers.

Quality of care was described by participants as “professionalism,” “listening to the client’s concern” and “respecting their lifestyle choices.” Poor treatment by doctors was attributed to a lack of “cultural competence of providers and clinic staff.” There is a dearth of knowledge in the local medical community about transgender healthcare needs. Participants reiterated that there is “limited medical care with transgender health” because providers “are not trans-educated” and “it isn’t just the provider it’s also the front desk and the clinic staff.”

The care location is also a concern for a person living with HIV, not just for reasons of transportation, but also for the privacy of their health information. People with HIV are concerned about maintaining confidentiality and the privacy of their health information due to the fear of being discriminated against if their HIV status is known. “Will my status be disclosed?” The fear of unintended disclosure may result in individuals not wanting to go to a clinic if it is identified as an HIV clinic or go to a support services agency known to serve people living with HIV.

Overburdened case management system.

Another barrier for people with HIV is their lack of education about living with HIV. Understanding and navigating the new reality of living with an HIV diagnosis, a participant explained, is “overwhelming. He is scared.” PLWH will need ongoing support and case management. “CD4, viral load… I need to know your counts, how much of the virus is in your body…we’re going to get about 2 tubes of blood.” A newly diagnosed person may feel lost and be unable to understand all the information he or she is hearing. This person may also feel alone. One participant noted the barrier of large client caseloads saying, “some case managers in Memphis have client loads of 300 patients - impossible to do much more than Ryan White eligibility.” Another participant said, “My case managers don’t ever come and visit me at home, they don’t call, they don’t show up.” Clearly not having the support and assistance of a skilled and knowledgeable case manager with the time to spend with them is a barrier for PLWH to achieve viral suppression.

Barriers with accessing mental health and substance use treatment.

Mental health followed by substance use disorders emerged as a major issue that presents a barrier to HIV care. Workshop participants cited general and specific mental health symptoms that become barriers to care for people living with HIV such as “suicidal [feelings], depression, anxiety, insomnia, loss of touch with reality, and loneliness.” A workshop participant said, “At the end of the day if your mental health is not working you ain’t going to do any of these things anyway.” Another participant said, “I can’t get them to take their meds if they don’t take care of the schizophrenia. That is a barrier that I can’t even address. You can’t address the HIV without addressing the mental health first.”

Discussing mental health with PLWH is difficult due to the “stigma about counseling” a workshop participant said. Accepting a referral for mental health services may be intimidating. A participant explains, “It is a scary thing to have to go to somebody and ask for help and have to reveal our medical diagnosis. You don’t know this person or what they will say. Stigma is a really big thing.” Participants relayed that education about mental health issues is lacking as well as easy access to mental health providers. There are limited resources in rural areas for mental health and substance use treatment. A workshop participant said, “Peer support is limited, especially in rural areas, no AA, NA, nowhere to go for support.” Even when there is a community resource available, individuals often lack knowledge about those resources. Many people with HIV are unaware of resources and services available to them nor do they know “where to go and what to do.”

Facilitators to Address the Barriers To Care

Participants developed several strategies for prevention and intervention to address the aforementioned barriers to care. Themes included HIV education to youth in schools and community-wide campaigns, more testing sites, involving church leaders, funding for housing options, innovative transportation services, rapid start of culturally competent HIV medical treatment, intensive case management services, and mental health counseling and referrals.

Increase HIV education and testing.

To increase HIV awareness and reduce HIV stigma, participants would like to see HIV education and testing offered in schools, colleges, churches, local organizations, and jails. Additional testing sites would be useful to reach more people. Having specific resource information easily accessible on the internet was suggested, as is using TV media, to inform the public of services available and how to access them.

Involve church leaders.

Participants stated that the faith community and its leaders play a large role in decreasing stigma and in supporting HIV testing, education and treatment. A participant suggested that “churches invite us to provide education to their congregations about HIV.” And further recommended that “everyone in the churches get tested…even the ministers.” The church is a vital part of the daily lives of individuals and families in the Memphis TGA in both rural and urban areas. Church pastors and leaders must be engaged in conversations to promote HIV testing and to provide practical and emotional support for people living with HIV. To facilitate church leader’s promotion of HIV awareness and testing programs a participant recommended that CHWs reach out to them to offer their assistance.

We know that rural areas have a lot of churches. It’s important that we start changing the dynamics of [how HIV is perceived in the church]. How do you court them to get them involved? They [faith leaders] need to learn first. You’re the expert in the room. How do we bring [faith leaders] to the table and educate them? We have to start the conversation somewhere so we can change the dynamics. Get churches involved to better educate the community. Testing, education, health fairs. It’s more about our approach [with the faith leaders] when we go into the churches. Go in confident and with a positive attitude. Change the language to, ‘I’d like to educate your members about STIs that are impacting our community.’

Funding for housing options.

Resources to meet the housing needs of people living with HIV is a high priority. This includes housing resources for people who have criminal justice histories. Funding support is needed for both emergency and long-term housing to overcome barriers to care. Participants suggested educating people living with HIV about housing assistance programs to facilitate their ability to obtain a safe place to live. While housing programs are in existence the challenge for people living with HIV may be that they are unaware of these programs as well as a program’s eligibility and availability. Nevertheless, because more options for safe and affordable housing are needed, especially for women and transgender persons, participants suggested opening more homeless shelters for emergency housing or make use of housing “similar to a halfway house, that would help with stabilizing their situation.”

Innovative transportation options.

One participant pointed out that “access to care is most important and [this means] ensuring that individuals have transportation and support to get HIV care and treatment.” Transportation service options currently in place are gas cards, bus passes, and medical transportation. Participants indicated that “today more people want to utilize Lyft or Uber,” rather than riding the bus, especially given the limited routes and frequency of the public transportation in Memphis. Another participant suggested that CHWs could provide transportation and accompany people to their medical appointments as a means of transportation.

Rapid start of culturally competent HIV medical treatment.

“Access to care, prompt care and quality health care is absolutely essential with all clients” expressed a participant. To get people with HIV into care and maintain them in care in Shelby County the following process should be available a) antiretroviral medications offered on the same day as HIV diagnosis, b) additional medical clinics for care and c) access to more culturally competent HIV health care providers. Rapid start of antiretroviral treatment upon diagnosis of HIV was a frequently reported solution to support people newly diagnosed with HIV or those who are out of care. This also includes rapid same-day Ryan White eligibility. To improve this access to rapid start additional options should be available to provide same day medical services needed to begin ART that are accessible to those living with HIV. Swift and easy access to high-quality healthcare could be accomplished by increasing the number of clinics and care locations that offer nontraditional appointment hours for all services. Participants stressed that access to culturally competent HIV health care providers is vital. People with HIV must have providers who demonstrate acceptance and nonjudgmental compassion to them while they are in their care. This same concern and understanding must be experienced by the person with HIV as being present throughout the staff in the agency or clinic. There should also be specific HIV care and prevention services allocated for transgender community members.

Intensive case management services.

PLWH need skilled medical case managers to be available to provide emotional support and make needed referrals for supportive services and resources. There should be intense medical case management assistance and support in place, if required, to meet a client’s need so that they receive the highest quality of care. Engaging with clients is a means to establish connections with them, keep them in care and teach them self-management strategies to reach and maintain viral suppression. Some PLWH should have access to “intensive case management” services that include home visits as a way to provide them with emotional and practical support.

Mental health counseling and referrals.

Addressing the mental health and substance use needs of PLWH is considered a top priority. Access to evidence-based mental health and substance use services is essential. There is a need for trained and experienced counselors who are available and accessible to people with HIV. Mental health education is needed to increase consumers’ knowledge of mental health issues and the need for care and mental health’s effect on overall health and wellbeing. Mental health and substance use referrals should include transportation and childcare assistance to facilitate access to these services. Cell phone applications were mentioned as a way to remind PLWH of their mental health care appointments.

Mental health counseling was endorsed as a solution to an individual’s feelings of HIV stigma. “It will put [HIV stigma] into context. Stigma happens in our own minds. You can destigmatize places, but if I feel it in my mind…then I’m defeated before I start. Once we are educated, we can destigmatize.” A participant explains how counseling can help decrease an individuals’ self-stigma:

“Stigma is a fear. I was fearful…I didn’t know anybody who had it. Going to support groups [and being around] other people who are with this. … I am not the only one carrying this. Being educated. Peer support groups. You’re not alone. Once people understand that, it opens up a lot as far as mental health and HIV, this is not just an isolated incident, it makes everything a little more manageable. Teaching people how to be open and share their stories.”

Regarding strategies to overcome barriers to care one participant provided the following summary.

There’s not going to be just one way to end the epidemic. It’s going to take providers prescribing, people in the communication engaging, PrEP, condom use, it is going to take a lot of different things to get us where we want to be as a community.

Roles for Community Health Workers

Participants named several tasks and roles for CHWs to address along each step of the HIV care continuum to support a person at risk for and/or living with HIV (see Table 2). Participants contributed the following actions that a CHW could take to move a PLWH from diagnosis to achieving the goal of viral suppression in the Memphis TGA. Beginning with increasing a person’s awareness of their diagnosis, participants expressed that CHWs can play a role in encouraging people to know their HIV status and with providing education so people understand the importance of being tested. CHWs could play a role in supporting education and testing for youth in schools, in faith communities or for individuals incarcerated in jails. Once a person tests positive CHWs can provide linkage to HIV medical care as well as linkage to resources to overcome barriers to care such as those just mentioned.

Table 2.

Roles and Tasks for Community Health Workers in the HIV Care Continuum in the Memphis TGA

Diagnosis	Linkage	Retention	Access to Medications	Viral Suppression
Conduct HIV testing	Address transportation needs	Talk with clients about their status and if they understand diagnosis	Educate about drug side effects	Be a cheerleader
Notify and educate about HIV results	Assist client with a care plan	Address barriers to care	Find funding support to pay for mediations	Check labs
Link persons newly diagnosed to HIV medical care within 30 days of diagnosis	Assist with prescription drug coverage	Ask client what matters	Teach how to use calendars and pill packs	Help with understanding treatment instructions
Advocate for HIV education and prevention in the community	Serve as a community advocate to link to medical case management and early intervention services	Attend quarterly medical appointments with clients	Maintain privacy	Provide positive reinforcement and incentives
Educate and provide informal counseling about HIV	Complete application for AIDS Drug Assistance Program (ADAP) and obtain MD signature	Help with Ryan White and ADAP paperwork	Teach clients to call about medications	Teach prevention methods and educate on condom use
	Educate about the Ryan White HIV Program for medical and social services	Help with referrals	Provide helpful tips for taking medications	Provide helpful tips to stay healthy
	Provide information and research about HIV	Meet with client at home		Address transportation needs
	Help client with medical appointment	Provide hope		Suggest the use of a diary or journal to cope with managing HIV
	Locate appropriate providers	Stay in touch		Stay in touch

Participants said that once a person is engaged in regular HIV care CHWs can continue educating them about how to store and take antiretroviral medications and ways to manage any side effects. Participants noted that CHWs can offer strategies and reminder aids for medication adherence. locate resources to pay for medications and share methods for taking medications while protecting one’s privacy and confidentiality. To keep people with HIV retained in care, participants conveyed that CHWs can conduct home visits to offer support, inquire if additional referrals are needed and continue providing education about living with HIV. Participants expressed that keeping in touch with PLWH by regularly reaching out to them is a strategy for keeping clients retained in care. As CHWs continue working to support PLWH with viral suppression, participants stated that they should be actively educating clients about HIV lab values, prevention methods to reduce HIV transmission, tips to stay healthy and provide emotional support and incentives to maintain viral suppression.

Participants individually rated the top three services that CHWs need to focus their work on to support PLWH to successful viral suppression as (1) testing and rapid treatment, (2) HIV medication support and education, and (3) finding people lost to care and linking them back into care. A workshop participant said, “Testing and rapid treatment is one of the first things we should have people out and doing. Finding people.” The second service was HIV medication support and education. A CHW should “go in and be a reminder in order to get them to be comfortable taking their medication. [CHWs] see them at home, work, or school.” The third top service is finding people lost to care and linking them back into care.

Participants expressed the benefit of having peer CHWs who are similar in background to the person with HIV, not just to be more likely to locate the person, but also to have the ability to be relatable to the needs and feelings of that person. A participant explained, “Matched peer support would be good. It was another woman that told me about everything. Have trans [CHWs] for the trans individuals. [CHWs] matched with [a client’s] age is also good too.” The implication of peer CHWs is for newly diagnosed persons to know, “you are not alone.”

Discussion

While clinical and treatment advances have improved the health of PLWH, African Americans continue to suffer disparities in linkage to and retention in HIV care (Essuon et al., 2020). This participatory research project was designed to collect information with community stakeholders in the Memphis TGA to build upon the existing local infrastructure and resources to generate sustainable strategies to improve viral suppression. This study’s findings provide insight for important policy, program and future research activities for the Memphis TGA planning groups as well as other Ryan White programs that may be integrating CHW models into their EHE goals. This study used the Social Ecological Model to understand how the various individual, community, organizational, and public policy factors influence health behaviors which resulted in the Memphis TGA becoming an HIV geographic hotspot. Consistent with the Social Ecological Model barriers and facilitators for PLWH to achieve viral suppression and the opportunities for CHWs to address these barriers were recognized as being on different levels of practice. The results found in this study point to utilizing CHWs to address barriers to care at the individual, community, organizational, and public policy level.

Many, if not most, of the barriers to care identified in this research can be classified as policy issues. Federal, state and community-level policies are determinants that shape the circumstances in which people live and thus impact HIV testing and engagement in care. State-level laws and policies that operate as impediments to HIV prevention and care include criminalizing HIV nondisclosure, the lack of comprehensive sexuality and HIV education in schools, shortage of safe affordable housing, insufficient public transportation, rejection of Medicaid expansion, and lack of funding support for non-medical HIV services. Laws and policies play a critical role in hindering or supporting community HIV programs and services (Baral et al., 2013).

State laws and policies that primarily impact minorities and other marginalized populations, or increase HIV stigma, homophobia, transphobia, racism or anti-immigrant sentiment contribute to a negative environment which influences health behaviors. Any policy that impacts social, structural and/or socioeconomic issues is relevant to people living with HIV. While the public policy context of the Memphis TGA community is outside of the control of any individual person CHWs can provide leadership with bringing community groups together to address these issues (Baral et al., 2013). The National Conference of State Legislatures (2017) recommends that policymakers convene stakeholders, community groups and others who can offer legislatures innovative solutions to promote health as well as provide their insight about strategies to decrease health disparities. The perspective and insight that CHWs can bring to policy issues based on the work they do with those living with HIV is invaluable. Indeed, the CHW model was originally conceived as a means through which to enhance not only health care access and quality but also indigenous leadership development to challenge inequities and advocate for community and systemic change (Lehmann & Sanders, 2007). Community-level advocacy has been identified as a core CHW function and has the potential to address structural level issues such as poverty, employment, housing, and discrimination (Ingram et al., 2008). Historically CHWs were social change advocates (Lehmann & Sanders, 2007). Utilizing CHWs to be policy advocates for local, state and national policies that promote the rights of all people who are living with or affected by HIV would provide one possible solution.

The South’s conservative political and religious leanings make it unsupportive of comprehensive sex education and HIV education in schools (Sprague et al., 2020). Only state approved abstinence only sex education, with the parents’ consent, may be taught in Tennessee public schools thus denying youth of scientifically factual information needed to care for their health. This current Tennessee policy is intensely opposed by the participants in this study who would like to see HIV education and testing being offered in schools, colleges, and other easily accessible locations. CHWs can play a role in educating the community and youth in schools about HIV including prevention, testing and linkage to appropriate HIV health care providers.

Twenty percent of adults living in Tennessee have a diagnosable mental illness (SAMHSA, 2015). People with HIV have higher rates of mental health conditions than people who do not have HIV (Remien et al., 2019; Sprague et al., 2020). Access to mental health and substance use disorder treatment was a significant need of PLWH according to this study’s participants. There is emerging literature on the role of peer CHWs in connecting PLWH to mental health and substance use treatment services (Remien et al., 2019). Integrating CHWs into primary care HIV settings to provide behavioral health care coordination, outreach, and screening has been endorsed (Wennerstrom et al., 2015).

Comorbid mental health and substance use disorders are common among PLWH and often interfere with adherence to HIV treatment regimens (Zaller et al., 2007). To provide complete care for the complex problems among PLWH resulting from multiple diagnoses an integrated and collaborative approach is necessary. The expertise and resources within an integrated primary HIV care team that includes behavioral health providers can be used to treat mental health and substance use disorders in one location (Zaller et al., 2007). Integrated primary care practices that embed CHWs on the team have shown to enhance care, improve understanding of client situations and needs and increase engagement in care for PLWH (Cabral et al., 2018; Hartzler et al., 2018). A one-stop inclusive service model ensures that PLWH are able access different types of services to address all of their treatment needs (Zaller et al., 2007).

Other barriers to care that concerned this study’s participants were transportation, access to prompt and culturally competent healthcare providers, staff and systems, and the overburdened HIV case management system. This study’s findings corroborate reports that healthcare providers and institutions are often insensitive to PLWH (Sprague et al., 2020) and PLWH risk the chance of unwanted disclosure and stigma if they are seen utilizing HIV-specific facilities (Walcott et al., 2016). Policy changes and budget cuts to programs for PLWH have affected the ability to provide needed care and services to clients (Albritton et al., 2017). To implement suggestions from this current study such as using innovative transportation services, rapid start of culturally competent HIV medical treatment, intensive case management services, and ready access to mental health counseling and referrals may take additional funding and updating of the Ryan White program policies. As community advocates CHWs could have a voice to influence policies and practices in HIV prevention and care planning, funding allocation, and policy decisions at the local, state, and federal level (Albritton et al., 2017).

Previous studies have demonstrated that CHWs including peer CHWs have been instrumental in increasing patient engagement and retention in HIV care (Cabral et al., 2018). Indeed, CHWs have potential to enhance access to care and quality of care but remain underutilized (Hartzler et al., 2018). Due to a “lack of awareness, understanding and respect for the CHW model of care within care delivery organizations…health care systems and providers may not have a complete understanding of a CHWs role and how to integrate them into the system, organization, or team” (Allen et al., 2019, p. 572, 577). Not understanding the value of the CHW model to positively impact client engagement in care may result in underutilization or non-utilization of CHWs within an integrated HIV care team (Cabral et al., 2018).

In addition to the policy-level barriers facing PLWH, societal and religious-based stigma based on HIV status is an impediment to care linkage and retention. The current study’s results point to the prominence of stigma as a barrier which compounds existing disparities and this corroborates findings of religious stigma by other researchers (Sprague et al., 2020). Research suggests that for PLWH, multiple social identities, such as race, gender, age, and sexual orientation, magnify the stigma and health inequities experienced via a cumulative intersectional effect (Anderson et al., 2019). “HIV status must continue to be recognized as intersecting with race or ethnicity, social histories of incarceration, substance use, together with sexual identities, and economic and political determinants, to contribute to poor health outcomes and health inequities” (Sprague et al., 2020, p. 14).

Participants expressed the depth and pervasiveness of this community’s religious-based stigma such that involving church leaders in promoting HIV education and awareness was suggested. Religious-driven HIV stigma in this Mid-South community has been found by other researchers as well (Otey & Miller, 2016; Vaughn et al., 2019). Otey and Miller (2016) expressed concern about whether African American faith-based leaders, whose religious doctrine encompasses strict biblical teachings, would be able to teach HIV prevention without stigmatizing and condemning congregation members with HIV. This may be an opportunity in which CHWs could provide a critical role in helping to engage the faith community and work closely with pastors to provide support to their members and develop appropriate messages that encourage people to be educated about HIV and tested. CHWs can also play a role in community-led campaigns to reduce societal HIV stigma (Sprague et al., 2020).

To overcome the numerous barriers to care and retention in care PLWH should have access to CHWs, early intervention specialists and/or navigators, as part of their care team, who will keep in contact with them throughout their progression to viral suppression. CHWs, with their knowledge of resources in the community, can play a vital role in supporting the coordination of services for non-medical needs such as transportation, housing, food and employment (Hartzler et al., 2018). The current study’s participants emphasized the importance of making home visits and attending medical appointments of persons living with HIV as being part of a CHWs job description. CHWs may play a role in reducing social isolation for PLWH by conducting check-ins and providing emotional support around living with the illness. CHWs can provide one on one support as well as linkage to support groups to reduce the barriers of social isolation and lack of family support.

Limitations

Data are self-reported and therefore subject to recall and social desirability biases and the extent to which the participants were willing to share their experiences. Another limitation is that this study focused on one geographic area, the Memphis TGA, and may not be generalizable to other settings or states. However, involving both people with HIV and stakeholders in both a community wide survey and participatory workshop allowed for triangulation of the data to improve the reliability and validity of the findings.

Implications

As the HIV epidemic continues to disproportionately affect African American populations preparing a community health workforce can close this gap. Community health workers, as members of the communities that they serve, can address the individual, organizational and structural barriers related to stigma, access, and education to support the uptake and adherence to treatment. Working as members of the health care team, “CHWs provide one possible solution to the problem of meeting the needs of disenfranchised communities, and they are ready and natural allies for social workers, who share the common goals of social justice and culturally appropriate services” (Spencer, et al., 2010, p. 177). Based on this study’s findings recommendations for other communities that are working to reduce HIV disparities and improve HIV health outcomes are offered.

• Organize ongoing CHW training for policy advocacy. Participants noted several policy issues relevant to PLWH that alter the environmental milieu in which people live. Policy issues such as funding for housing, healthcare benefits, HIV criminalization, HIV prevention education in schools, and state legislation that does not treat members of the LGBTQ communities as equal, are just a few. Policy advocacy training for CHWs could enhance their skills to advocate for policies that contribute to ending the HIV epidemic as well as teach them how to educate PLWH to be self-advocates.

• Develop and strengthen linkage and referral systems to mental health providers for people with HIV. Integrated health care teams are well positioned to collaborate with CHWs when referring PLWH to external mental health providers to ensure these referrals are completed and followed up. CHWs could play a vital role as part of the health care team in helping PLWH accept and complete mental health and substance use referrals.

• Health systems at all levels can allocate resources to increase and strengthen the network of CHWs. The Memphis TGA has a rich resource within the HIV community of people living with HIV and early intervention service workers, who are providing support to newly diagnosed people and people out of HIV care. This network of individuals could be trained to enhance their skills to implement services so that people at risk for HIV are tested and diagnosed, linked and retained in care, and supported in treatment to achieve viral suppression. CHW programs could be expanded to community health centers and HIV service agencies who serve vulnerable populations, such as people living in rural areas, transgender populations, people coming out of incarceration and people experiencing homelessness or unstable housing. As part of the Shelby County Ending the HIV Epidemic plan, these recommendations are underway.

Conclusion

HIV is concentrated within poor, marginalized, and historically oppressed communities of color (Harsono et al., 2017). This is the case in Memphis Tennessee where over 8,000 people are living with HIV and African Americans are disproportionately affected. Using a participatory research approach this study identified from a community perspective: 1) the barriers and facilitators for providing support to achieve viral suppression to the most at-risk groups living with HIV in the Memphis TGA and 2) opportunities to strengthen the health care system through the use of CHWs to do outreach and engage with people living with HIV. The findings of this study can inform a strategy to build the CHW workforce which may have widespread implications for ending the HIV epidemic in this geographic area and across the U.S.