We conducted our study in Baton Rouge and New Orleans. We used a cross-sectional qualitative research design. The Louisiana Department of Health (LDH) began LA Links in 2013, a D2C program to assist out-of-care PWH clients, including many who reside in these two cities (Anderson et al., 2020; Sweeney et al., 2018). This program provides outreach, linkage case management, and patient navigation services (Sweeney et al., 2018). Compared with other urban areas, in 2018 Baton Rouge and New Orleans ranked fourth and sixth in diagnosis of new HIV infections, respectively (Louisiana Department of Health, 2019). We selected these two cities because of their high numbers of PWH and established D2C programs. Baton Rouge and New Orleans D2C services are offered when surveillance shows PWH have no evidence of HIV laboratory results. These persons never started or dropped out of medical care and need to be re-engaged. Other PWH may have high viral load test results, suggesting they are in care but experiencing treatment failure (e.g., difficulty obtaining or consistently taking ART). LA Links assigns PWH in these varied situations to “linkage to care coordinators” who attempt to contact them, learn more about the nature of their care challenges, and provide tailored assistance.

The majority of sampled clients (61.1%, N = 22) resided in Baton Rouge; 38.9% (N = 14) in New Orleans (Table 1). Over half (55.6%, N = 20) were age 40 years or older. All but one (97.2%, N = 35) were Black or African American. The majority were female (63.9%, N = 23). Over three-quarters (77.8%, N = 28) identified as heterosexual or straight. More than one-third (36%, N=13) had less than a high school education; a strong majority (75%, N=27) never attended college. Most were unemployed (63.9%, N = 23) at the time of the interview. Four clients (11.1%) said they had experienced homelessness at some point during the 12 months prior to the interview. In the following sections, we identify client barriers to HIV care and show how clients’ care-seeking behaviors changed over the time they interacted with D2C staff.

To be eligible for D2C services provided through LA Links, the 36 clients sampled in our study had surveillance records indicating they never accessed care, were out of care, needed to be re-engaged in care, or were in care but experiencing treatment failure (including not taking ART as prescribed, or having not attained viral suppression). Before D2C program contact, over a third of our clients were not thinking about their HIV medical care; nearly another third were considering or beginning to seek care; while the remaining believed themselves to be in medical care to varying degrees and were puzzled why a D2C care coordinator contacted them. It is possible that some clients and public health personnel have different definitions about what constitutes receiving HIV care and taking ART. Despite these initial barriers, many interviewees became connected with medical care services and started or restarted taking ART after D2C. Following receipt of D2C assistance, nearly all clients said they were consistently receiving HIV medical care and taking ART, a remarkable improvement. Only three clients indicated they were inconsistently seeing medical care providers and taking ART after D2C assistance.

The women and men in our sample faced significant individual and structural barriers that interfered with medical care and treatment. Many of the challenges faced by PWH like those in our study are created or strongly influenced by community-wide social determinants of health, and require solutions that address significant inequities that too often impact vulnerable populations in the U.S. South and other regions (Jeffries & Henny, 2019). For example, over a third of our participants had not completed high school, the majority were unemployed, and several experienced homelessness in the 12 months before the interview. Moreover, clients understood why they were not in care or taking ART before D2C. Common reasons included: poor understanding of HIV medical care and ART treatment; denial or difficulty coping with their diagnosis; feelings of depression, apathy, or fatalism; negative prior experiences with health systems (e.g., arduous paperwork requirements) or clinicians who treated them badly; difficulties paying for services or ART; inconveniently located health care facilities and lack of transportation; and challenges in finding a doctor. Depression, denial, fatalism, prior negative experience with the medical system, difficulty finding a doctor, inconvenience, and financial and insurance difficulties often are cited as barriers among PWH (Bauman et al., 2013; Brewer et al., 2018; Dombrowski et al., 2015; Moneyham et al., 2010; Remien et al., 2015; Yehia et al., 2015).

Except for two persons, all other clients in our sample reported their D2C care coordinators provided tailored assistance to address their specific needs and barriers to HIV care and treatment. We believe this tailored approach explains why Baton Rouge and New Orleans D2C programs were successful in helping most clients increase their consistent HIV medical care-seeking and ART-taking behaviors. Based on clients’ statements, of the 12 identified forms of assistance that D2C staff provided, the most frequent assistance included: helping clients obtain transportation to health care facilities; medical appointment making, financial assistance for healthcare-related services and ART, general motivation and encouragement, and help with non-HIV health needs. Other D2C studies have described the importance of transportation, health insurance, or different behavioral health needs (Anderson et al., 2020; Sweeney et al., 2018). D2C program staff may provide services comparable to patient navigators, case workers, or others in different client assistance programs (Koenig et al., 2021). While helping individual clients obtain HIV medical care, complementary efforts should be made to improve broad on-going inequities and structural impediments that adversely affect community-wide public health (Jeffries & Henny, 2019; Menza et al., 2021).

In a separate but related component of our work in Baton Rouge and New Orleans, we also interviewed D2C program staff in the same two cities to learn their views of clients’ barriers to HIV care (Roland et al., 2022). Barriers mentioned by staff included challenges partially overlapping with those identified by clients and described in our current paper, such as transportation, financial challenges, unstable housing, mental illness, and adverse interactions with some healthcare providers. However, we believe that program staff likely responded based on aggregated experiences across multiple clients. Therefore, talking directly with clients is important to understand individual client experiences, which is needed for providing tailored assistance. Barriers to obtaining care or taking ART for one client are not necessarily the same as those for other clients. Having individual-level client data in our current analysis also allowed us to identify different client subgroups who had varied combinations of barriers to care. These client subgroups were not discernable using data from staff interviews because individual-level client variation was lost. We recommend that future investigators in other jurisdictions interview both D2C clients and staff separately, because findings from each group may yield different insights. Providers likely can describe common cross-cutting and broad community-wide issues, while clients likely can provide greater detail, report less-common barriers to care, and describe their specific needs, experiences, and circumstances. Data from both groups are useful for designing maximally responsive and effective D2C programs.

Our study has limitations. The LA Links program in Baton Rouge and New Orleans may not reflect D2C programs in other regions (Beltrami et al., 2018; Sweeney et al., 2019; Sweeney et al., 2018). Our sample size was modest. By necessity our sample included only PWH who received D2C services; we could not include potentially eligible persons who the program could not locate or those who refused D2C services. This may have introduced sampling bias. We had no access to clients’ medical care records and could not corroborate self-reported care-seeking and ART use behaviors. Some clients likely had recall difficulties or perhaps gave us “socially desirable” responses. As a cross-sectional study, we could not follow up with clients to see how long they remained in care and continued ART long after our interviews. We also do not know how D2C program functionality or client experiences may have changed during the recent COVID-19 pandemic.

However, our findings are valuable due to our focus on client views on their barriers to care, which we believe complement and augment data obtained only from D2C staff or examination of medical care and surveillance records. Understanding challenges and types of tailored assistance provided by the D2C programs in Louisiana can provide useful ideas to program planners in other jurisdictions. Another contribution is that we show how clients think the D2C programs assist them. This also can help program planners anticipate the types of assistance their staff may need to provide.

Not all out-of-care PWH are equally interested in or be able to enter or re-enter HIV medical care. To provide effective D2C services, it is important that D2C staff first learn a client’s specific needs and then provide tailored services. Our use of the stages of change model shows that there was variation among clients when they are first contacted by their D2C program. To our knowledge, no prior studies have used the stages of change model to assess D2C client progression to care. Future studies could explore alternative or better ways to identify client subgroups. D2C programs often will need to provide personalized forms of assistance based on client readiness to engage. To varying extent, D2C staff may also need to strengthen clients’ motivation to seek and remain in HIV medical care. Nurses and other healthcare workers can play major roles in encouraging and motivating PWH who have diverse needs (Centers for Disease Control and Prevention, 2019; Holstad et al., 2006).

D2C programs are interventions explicitly designed to provide support services to PWH. Social support is associated with successful care re-engagement and HIV outcomes (Burgoyne, 2005; Cabral et al., 2018; Chang et al., 2019; Nokes et al., 2012; Power et al., 2003). D2C programs like those in Baton Rouge and New Orleans may help PWH cope with hopelessness or demotivating negative emotions and build stronger self-efficacy simply by showing clients care and compassion. Moreover, Baton Rouge and New Orleans D2C staff provided important instrumental support (e.g., transportation, information, help with paperwork, resolution of financial problems) that our clients clearly needed and explicitly valued. Social support can affect mental and physical health by providing psycho-emotional benefits (Caplan, 1974; Cassel, 1976; Cobb, 1976), as well as instrumental or physical forms of assistance (e.g., labor, material resources, information for solving problems) (Cohen, 1985). There is a long history of service providers offering interventions to deliver social support services to promote health (Gottlieb, 1988). Effective D2C programs not only rely on accuracy of HIV surveillance data, but also need dedicated and knowledgeable staff who build trust with and provide multiple forms of help to their clients (Sweeney et al., 2019).

All U.S. state health department HIV control programs receive federal funds from CDC to implement, expand, and support D2C (McCree et al., 2019). Insights from established D2C programs are valuable for helping less established programs (Sweeney et al., 2019). It is important to develop and evaluate improved and sustainable interventions that help PWH stay in care and treatment after D2C program assistance ends. For example, if transportation was a barrier to an individual going to their doctor, there is a danger that they will fall out of care after a local D2C program stops providing transportation assistance. Second, there is a need to identify best ways to train D2C program staff on efficiently and effectively identifying client care and treatment barriers, as well as delivering tailored and useful forms of help. Lastly, future studies should identify administrative structures that best allow D2C program staff to develop and implement effective and personalized relationships based on trust and respect with their clients.