Addressing Mental Health Barriers in HIV Care Coordination Is Crucial to Providing Optimal HIV/AIDS Care

Abstract

For people with HIV (PWH) who have psychological comorbidities, effective management of mental health issues is crucial to achieving and maintaining viral suppression. Care coordination programs (CCPs) have been shown to improve outcomes across the HIV care continuum, but little research has focused on the role of care coordination in supporting the mental health of PWH. This study reports qualitative findings from the Program Refinements to Optimize Model Impact and Scalability based on Evidence (PROMISE) study, which evaluated a revised version of an HIV CCP for Ryan White Part A clients in New York City. Semistructured interviews were conducted with 30 providers and 27 clients from 6 CCP-implementing agencies to elucidate barriers and facilitators of program engagement. Transcripts were analyzed for key themes related to clients' mental health needs and providers' successes and challenges in meeting these needs. Providers and clients agreed that insufficiently managed mental health issues are a common barrier to achieving and maintaining viral suppression. Although the CCP model calls for providers to address clients' unmet mental health needs primarily through screening and referrals to psychiatric and/or psychological care, both clients and providers reported that the routine provision of emotional support is a major part of providers' role that is highly valued by clients. Some concerns raised by providers included insufficient training to address clients' mental health needs and an inability to document the provision of emotional support as a delivered service. These findings suggest the potential value of formally integrating mental health services into HIV care coordination provision.

ClinicalTrials.gov protocol number: NCT03628287.

Introduction

Scientific and medical advances have rendered HIV a chronic condition rather than a terminal illness. However, it is only a chronic manageable condition when optimal care outcomes are achieved, which often includes addressing medical and psychosocial comorbidities. Persistent HIV-related health disparities make this an elusive goal for members of socially marginalized and economically disadvantaged communities in the United States. HIV continues to disproportionately affect racial, ethnic, sexual, and gender minority populations who experience disparate outcomes across the HIV care continuum, from timely diagnosis and engagement in care to viral suppression.^1,2

Mental health is a major determinant of HIV care outcomes. Research has shown the importance of addressing mental health to ensure that people with HIV (PWH) regularly attend their medical appointments and adhere to their antiretroviral treatment (ART), both of which are crucial to reaching and maintaining undetectable viral load status.³ Many studies have documented the effect of mental health issues on PWH.^2–6 For example, a multisite study found that HIV-positive women with chronic depressive symptoms were twice as likely to die of HIV-related causes within a 2-year timeframe as women who did not exhibit depressive symptoms.⁶

A meta-analysis showed that depression is one of the strongest predictors of poor HIV medication adherence. This study determined that the likelihood of achieving ART adherence (80% of the time or more) was 42% lower among those with depressive symptoms than those without.⁷ Untreated mental health problems can also worsen social and economic barriers to accessing HIV care, furthering the need for mental health support among individuals with HIV.^3,8 Several recent studies have shown that PWH who are members of racial/ethnic minority groups, particularly Blacks, bear a disproportionate burden of psychological and social factors, such as depression, lack of social support, discrimination, and medical mistrust, which are associated with lower levels of ART adherence and viral suppression.^9–12

Research provides an abundance of evidence of the positive impact a care coordination program (CCP), whose clients often have a substantial mental health burden,¹³ can have on the health outcomes of PWH.^14–19 Most of this evidence is quantitative; qualitative studies that illuminate the perspectives and lived experiences of care coordination clients and providers are comparatively limited. Two recent meta-syntheses summarized existing qualitative research regarding navigators' and clients' perspectives on HIV patient navigation in the United States.^14,15

Core findings from the navigator perspective cluster into two main themes: (1) the breadth and depth of bidirectional relationships and functional activities that navigators undertake to connect their clients to care and (2) the inherently personal experience of delivering navigation services. The synthesis recommends that HIV patient navigators develop and maintain interpersonal relationships with clients, while also setting emotional boundaries.¹⁴

Core findings from the client perspective indicate that the relationship with the navigator and psychosocial support are fundamental to the client experience.¹⁵ Both studies highlight the relationship and emotional bond between navigators and their clients, but neither is explicitly concerned with the intersection of HIV care coordination and mental health. This study focuses on that intersection and the implications for providing mental health services to PWH.

The New York City (NYC) Ryan White Part A CCP is designed to improve HIV outcomes by addressing clients' psychosocial, economic, and other barriers to engagement in care and ART adherence. The program is overseen by the NYC Department of Health and Mental Hygiene (DOHMH) and delivered by individual HIV care agencies throughout NYC. These agencies serve the Ryan White Part A population that, by definition, is socioeconomically disadvantaged. (For a description of the Ryan White HIV Program, including Part A, see: https://ryanwhite.hrsa.gov/about/parts-and-initiatives)

Core staff roles for CCP implementation are program directors, care coordinators, and patient navigators. Program directors have administrative oversight of all program operations and little direct interaction with clients. Care coordinators have a dual role: they supervise the patient navigators and provide some limited care coordination services directly to clients, often on an ad hoc or fill-in basis. Patient navigators are frontline service providers whose role is to deliver care coordination services to clients; as such, they are typically clients' primary point of contact at the agencies delivering the revised CCP.

Each client in the program is assigned a patient navigator who provides a range of services, including assisting with medical appointments, supporting ART adherence [including directly observed therapy (DOT) for those who need it], helping clients obtain adequate housing, delivering health education, and providing referrals to other needed services, including referrals for mental health needs.

Based on the first several years of CCP implementation experience, the intervention model was revised in 2018, with a focus on reducing logistical and administrative barriers to service delivery and program engagement. The Program Refinements to Optimize Model Impact and Scalability based on Evidence (PROMISE) study investigated the impact and implementation of this revised CCP, using domains and constructs from two well-known implementation science frameworks, the Reach, Effectiveness, Adoption, Implementation, Maintenance Framework (RE-AIM)²⁰ and the Consolidated Framework for Implementation Research (CFIR),²¹ to structure the evaluation of the program.

A detailed description of the revised program and the PROMISE study protocol have been previously published.²² The present article explores mental health in relation to care coordination and uses qualitative findings from interviews with participating providers and clients to highlight the barriers and facilitators influencing clients' and providers' engagement with the revised CCP.

Methods

Participant recruitment and interview procedure

The qualitative component of the PROMISE study consisted of semistructured interviews with 27 client and 30 provider participants, distributed across 6 of the 26 Ryan White Part A-funded agencies delivering the revised CCP. As predetermined by the study's purposive sampling plan, three of these agencies were new to implementing the intervention, and three had prior experience delivering the original CCP. The agencies were located in a mix of settings and included one hospital, two community clinics, and three community-based organizations (CBOs) in the boroughs of Manhattan, Queens, Brooklyn, and the Bronx in NYC.

The study aimed to conduct four to six client and provider interviews per agency to provide a balanced distribution of participants across sampled agencies. The final samples included three to six clients and three to eight providers from each of the six agencies. Interviews averaged ∼60 min in length.

Client recruitment and interview procedure

To be eligible to participate in an interview, clients had to be currently enrolled in the revised CCP and speak English or Spanish. Designated agency staff used purposive sampling to select client participants to ensure sample diversity in terms of experiences with the program, housing status, mental health, and substance use, as well as demographic characteristics. Agency staff filled out a “permission to contact” form with the client to document the client's willingness to be contacted by the research team and preferred contact details; staff then called the interviewers by phone to securely relay this information. The interviewers called the participants to obtain informed consent and schedule interviews.

Because the client interviews took place during the initial wave of the COVID-19 pandemic, they were conducted by phone, and were conducted in English or Spanish, depending on client preference. A semistructured topic guide was used during the interview; however, there was flexibility to probe and ask additional questions as relevant. The topics centered around the client's experience in the revised CCP, the services they used, how their health and life were affected by the program, and their goals related to the program and their health. Clients' mental health was not directly queried in the topic guide, but if a client raised the issue, the interviewer was free to ask follow-up questions as appropriate. Interviews were audio-recorded, transcribed, and translated into English as needed.

Provider recruitment and interview procedure

Individual staff member interviews were conducted either by phone or in person, as COVID-19 pandemic conditions allowed. Participants included program directors, care coordinators, and patient navigators to ensure diversity in provider experience. The purposive sampling plan aimed for a balanced representation of these three roles while also accounting for the fact that, at each agency, patient navigators were typically more numerous than care coordinators or program directors. A topic guide was used to structure the interviews, allowing for flexibility to probe with follow-up questions, as needed.

Separate topic guides were used for providers at agencies that were new to implementing the CCP and providers at agencies that had prior experience implementing the original CCP. Topics centered around implementation of the revised CCP, the characteristics and needs of the agency's target population, the effectiveness of the program, and any recommendations the provider had for improving the program. The guide for CCP-experienced providers also included questions comparing the revised with the original model.

Like the client topic guide, the provider guides did not include explicit questions about how clients' mental health needs are addressed in the revised CCP because the direct provision of mental health support was not intended to be a core service of the program. However, if the topic emerged as salient during an interview, the interviewer could probe for additional detail or clarification. All provider interviews were conducted in English. Interviews were audio-recorded and transcribed.

Ethical approval and informed consent

This study was approved by the institutional review board of the NYC DOHMH, and the research was completed in accordance with the Helsinki Declaration, revision 2013. All participants provided informed consent before being interviewed. Clients received a $50 gift card as compensation for participating in an interview and provider interviewees were compensated with a $100 gift card.

Data analysis

Verbatim interview transcripts were entered into the Dedoose software program to facilitate coding and analysis. A content-based thematic analysis approach²³ was used to analyze the textual data, with code creation informed by the domains and constructs specified in the CFIR. Separate analyses of client and provider data were conducted by a total of five individuals, under the guidance of a PhD-level anthropologist with expertise in qualitative research methods. The analysts developed separate codebooks for clients and providers based on themes in five interviews within each set.

The client and provider codebooks were each tested on two additional transcripts to ensure comprehensiveness. After the codebooks were finalized, three analysts coded the remaining client transcripts, and one primary analyst coded the remaining provider transcripts. Application of the codes to the data was reviewed and discussed in regular meetings among the analysts, and any questions, clarifications, or doubts were reconciled based on discussion and consensus.

Six main code families emerged from the client data: general descriptions of engagement with the revised CCP, benefits of the revised CCP, suggestions for improving the revised CCP, facilitators of engagement with the revised CCP, barriers to engagement with the revised CCP, and acceptability of the revised CCP, with several more specific thematic codes defined within each code family. Provider codes were organized into five code families, each representing a CFIR domain of salient factors influencing provider and client engagement with the revised CCP from the perspective of providers: intervention characteristics, outer setting, inner setting, characteristics of individuals, and process factors.

Following the coding of the data set, the analysts engaged in a process of memo writing in which they created narrative summaries of the main code families, illustrating specific codes within each code family with representative quotations from the transcripts. This process of interpreting the coded data focused on themes that were endorsed by multiple interviewees, with exemplary quotations selected to represent each theme.

Results

Participant characteristics

Clients

Client demographics are presented in Table 1. The most common age group among client participants was 40–59 years (44.4%), and most identified their gender as male (63%), with the rest identifying as female. The racial and ethnic majority was comprised of Black individuals (66.7%), followed by Hispanic/Latinx individuals (33.3%), with no other races or ethnicities identified. Most clients had stable housing at the time of their interview; only 3 of the 27 participants had unstable housing, while the housing status of another 3 participants was unknown.

Table 1.

Client Demographics (n = 27)

Characteristic	n (%)
Age group (years)
<40	7 (25.9)
40–59	12 (44.4)
≥60	8 (29.6)
Gender identitya
Man	17 (63.0)
Woman	10 (37.0)
Race/ethnicity
Black	18 (66.7)
Hispanic/Latinx	9 (33.3)
Other	0
Housing status
Stable	21 (77.8)
Unstableb	3 (11.1)
Unknown	3 (11.1)
Agency typec
CBO	14 (51.9)
Community clinic	8 (29.6)
Hospital	5 (18.5)

^a No clients identified as transgender or had a current gender identity that differed from their sex at birth.

^b Includes homelessness or residence in temporary or transitional housing (e.g., emergency shelter, SRO hotel, staying in another person's home) or institutional settings (e.g., drug treatment program).

^c Type of service agency where the client was enrolled in the revised CCP at the time of their interview.

CBO, community-based organization; CCP, care coordination program.

Providers

The providers' demographics are presented in Table 2. Most providers interviewed were in the 30–39 years age group (40%). The overwhelming majority identified their gender as female (75.9%), with six providers identifying as male and one identifying as gender nonbinary. Black and Hispanic/Latinx providers each made up 40% of the sample and represented the largest racial/ethnic groups, followed by White providers (13.3%). Most providers were patient navigators (60%) followed by a smaller number of care coordinators (23.3%) and program directors (16.7%), which reflects the composition of the staff of these agencies.

Table 2.

Provider Demographics (n = 30)

Characteristic	n (%)
Age group (years)
18–29	9 (30.0)
30–39	12 (40.0)
40–49	4 (13.3)
50–59	2 (6.7)
≥60	3 (10.0)
Gender identity (n = 29)a
Man	6 (20.7)
Woman	22 (75.9)
Nonbinary	1 (3.4)
Race/ethnicity
Black	12 (40.0)
Hispanic/Latinx	12 (40.0)
White	4 (13.3)
Bi-/multiracial	2 (6.7)
Other	0
Position
Program director	5 (16.7)
Care coordinator	7 (23.3)
Patient navigator	18 (60.0)
Agency typeb
CBO	15 (50.0)
Community clinic	10 (33.3)
Hospital	5 (16.7)

^a Data for gender identity are not available for one provider.

^b Type of service agency where the provider was employed at the time of their interview.

The navigators either had high school diplomas or bachelor's degrees, but rarely graduate degrees in counseling or social work. Most navigators reported that they did not have mental health training or licenses to provide mental health or counseling services. The care coordinators and program directors were required to have a bachelor's degree for their position. Some program directors also had specialty training in mental health or a graduate degree in social work.

Clients have mental health needs and are asking for support

Both clients and providers indicated a need for more mental health assistance for clients. As one client stated,

I've been asking for mental health [treatment] for a long time because I've been feeling like I needed therapy, I don't have a handful of people I could go talk to about things.

Out of the 27 clients interviewed, 4 explicitly mentioned mental health treatment as a salient need at the time of their interview or when they started the program. Other clients described mental health as a barrier to receiving HIV care or maintaining medication adherence, a theme that was echoed by providers. For example, one provider described a client of theirs as:

…isolated and dealing with a lot of problems that have, as consequence, a lack of motivation. It depends on the needs of the client because some of the clients can live by themselves and some cannot based on their mental health.

Some clients present with serious mental health conditions that require professional treatment and medication. One client with schizophrenia described her frustration when her navigator left the agency and she had not yet been assigned a new navigator. She related going on a lengthy, and ultimately unsuccessful, search for a new psychiatrist on her own. Although she reported having a desperate need for a new prescription of her antipsychotic medication, she was unable to find a suitable provider or obtain the medication without the assistance of a navigator. (The client was eventually assigned a navigator, and her medication issue was resolved.)

Mental health problems are a barrier to achieving viral suppression

Providers and clients made explicit linkages between mental health and viral suppression, with one provider stating their clients had:

…a high viral load and when you try to find out the reason, most of them are because they have mental health issues. That's preventing them from taking care of themselves, so having mental health issues will be number one.

Providers explained how mental health issues frequently disrupt clients' routines, negatively impacting their medication adherence. Clients with mental health disorders and/or drug problems may engage or re-engage in behaviors that impede their medication adherence, particularly when stressful life events occur. As a care coordinator in the program said, “things come up, people get depressed because their dad just died and then they become unsuppressed for a month or so.” Interviews revealed the significant burden unresolved mental health issues place on this group of PWH and the extent to which these issues can interfere with clients' ability to adhere to their ART regimens. One navigator described one of their clients as:

…high, high, high need. She suffers from mental health issues, substance use issues, disability issues, and she has no motivation. So I go with her everywhere. I hold her hand and say, “come on, let's go.” Because if you don't, she's not gonna take her medication.

Providers also reported that it is more difficult to provide services for and assist clients who are suffering from inadequately treated mental health conditions. As one provider commented:

Clients have to take their mental health medication so they can be stable. When they have schizophrenia, hearing voices, they can get aggressive, so if they are not taking medication it is really hard to control them and it is really hard to work with them too.

The CCP is not fully equipped to address clients' mental health

Patient navigators' official responsibility is to coordinate clients' HIV care and related services, including assisting clients with accessing mental health treatment, when indicated. Navigators help clients schedule appointments and may accompany clients to those appointments if clients opt for this service. One navigator described their role in addressing clients' mental health needs like this, “We refer them out to therapy, we're not licensed therapists, so we have to send them out, and then we follow up.” However, navigators' close contact with clients often makes them feel an added responsibility to provide immediate mental health or emotional support to clients in need.

When asked whether they felt like mental health counselors to their clients, many navigators said yes, or said they provide a form of emotional support to their clients. When asked whether they felt prepared or adequately trained to handle clients' needs for mental health or emotional support, one navigator answered:

When I first started, no. I didn't have any experiences with HIV or substances or mental health so based on my experiences, just dealing with the whole thing, mental health and HIV, I've been learning a lot.

Another navigator answered:

No. Um, even with the health education [we receive], I think they need to give us more of a guideline. Um, they need to give us more…So, I definitely would appreciate it if they were to give us a guideline or stepping stones or how to break this down.

The agencies have differing methods of program implementation and varying levels of resources. At one agency, a provider mentioned that they have a staff member who goes to the client's home to do therapy. At the same agency, a different provider mentioned that they were getting ready to launch a mental health clinic on site to be able to offer mental health treatment to clients.

This agency also has social workers on site to handle situations that may be outside the navigator's scope. Other agencies, most commonly standalone CBOs, do not have in-house mental health resources and focus on referrals and appointment accompaniments. Although clients with mental health needs are able to access specialty mental health services through the program, some clients reported that they felt a stronger rapport with and trust in their navigator than with their professional therapist.

Yet clients have experienced improved mental health from the CCP

Many clients expressed that their mental health had improved because of the program. Four of the 27 clients interviewed explicitly talked about their improved mental health in their interview. For example, one said,

I'm not constantly stressing about things like I used to before. As far as the program came, [the navigator] helped me take a load off of my shoulders, and I could discuss whatever I needed to discuss.

Another client said:

I've learned to deal with stuff, like taking care of myself more. I learned to pay attention to my health because I was so depressed and didn't want to come out of my room. Now, I'm out almost every day and I walk around the block two or three times at least.

Several clients also reported that they receive social support from the program that benefitted their mental health and talked about being able to socialize and form friendships within the program. Some agencies provide group sessions that allow open conversations among members, and some have social events where clients can meet other clients. One client was asked what had improved the most in their life, to which they responded, “My overall health every year from being able to talk to people. Being able to mingle with people besides where I live and just mingling with the community.”

Two clients mentioned they were able to give and receive advice through the program, with one saying, “If one person is going through something or is not stable enough, you try to give them knowledge of how to get themselves together, in order for them to achieve stability.” Other clients mentioned the feeling of not being alone or being in solidarity with others as a form of social support: “It lets me know I'm not alone, there are other people out there with the same problems that I have. Mental, drug addiction, HIV, things of that nature.”

Lack of infrastructure and preparedness to address mental health needs adequately

When a navigator provides a service for a client, they must document it under predetermined categories provided by the NYC DOHMH. Each agency and its staff are accountable for reaching annual targets for the services they provide under these categories, and providers in all three roles expressed concern about meeting these targets. Navigators reported that a significant part of their job is listening to clients' problems and providing emotional support. The program does have mental health-related resources to which navigators can connect their clients, but when a client comes to the agency or contacts their navigator with urgent issues or in crisis, navigators can feel it is impossible not to give them emotional support in the moment.

However, many providers expressed frustration that emotional support and crisis counseling are not designated service categories for patient navigators; they explained that this makes it difficult, and sometimes impossible, for navigators to officially document these services, even though they take up a considerable amount of their time. In their view, providing this kind of support is often crucial for maintaining clients' well-being, but can feel unproductive for the navigator if neither they nor their agency can get credit for it. A care coordinator talks about the navigators' issue:

They're [patient navigator] spending a lot of time listening to the clients and then are like, ‘How do I bill for this?’ The client just spent all this time talking to them, but it's not an assistance or social service. It doesn't fit into any of the categories.

A navigator elaborated,

We have to keep track of every single thing we do, and frame it so it falls under one of the service categories. Sometimes, we can't bill or document for a service because it doesn't really fit the categories that the grant has for us.

Limited staff qualification and preparedness were also reported as barriers to addressing clients' mental health needs. Providers pointed to several reasons for the perceived gaps in preparedness, such as lack of prior experience working with people with mental health issues and lack of professional education or training in counseling, social work, or related fields among frontline staff. Although providers receive job-specific training before working with clients, several mentioned inadequate training from the program on addressing mental health issues specifically.

Clients commonly present with high levels of needs in multiple domains, including mental health, substance use, and medical comorbidities, and some providers felt they were not adequately prepared to handle the full range of clients' needs. As one program director explained,

Because [clients] have medical issues, substance abuse… sometimes they could be a little overwhelming…And it's just kind of getting used to it and that just comes with time. So, if there were trainings that were geared with that, like the Trauma-Informed Care [a training provided by the NYC DOHMH to CCP staff], I think it would be so beneficial to the program because…this program in particular is dealing with nothing but trauma.

Since the frontline staff rarely have extensive counseling training, most are not equipped with skills to address clients' often complex mental health needs beyond the provision of referrals, yet they inevitably found themselves providing impromptu mental health-related support or in-the-moment crisis counseling.

Discussion

Even in a CCP designed to address barriers to engagement in HIV care and help disadvantaged individuals living with HIV achieve and maintain viral suppression, there are gaps concerning mental health care that still need to be addressed. The CCP is intended to improve HIV outcomes for the Ryan White Part A population in NYC. However, providers and clients spoke of how multiple barriers, both individual-level and systemic, can lead to inadequate treatment of clients' mental health problems.

Providers noted that mental health conditions, ranging from anxiety and depression to schizophrenia, as well as active substance use, are common comorbidities of HIV among the program's clients, and emphasized that addressing these needs is essential for providing optimal HIV care. Both providers and clients expressed that dealing with inadequately treated mental health issues makes clients more likely to engage in unhealthy behaviors and less likely to attend their medical appointments or take their HIV medication.

Interviewees spoke of how, often, the severity of an individual's mental health symptoms fluctuates, so a client can be stable for a period of time, then experience an episode of worsened mental health symptoms. Consequently, clients can be virally suppressed for some time and then revert to being unsuppressed due to changing events in their lives, highlighting the importance of regular follow-up with clients who have a history of mental health conditions and understanding that treating these conditions is not a one-time effort. The CCP has improved mental health for many clients, but monitoring and managing mental health is an ongoing concern for some clients and their navigators.

Many navigators were met with the unexpected, yet in their view, unavoidable, task of providing mental health and emotional support for their clients. This was surprising for many of them because this service was not an explicit part of their job description. As a result, some navigators reported they did not receive sufficient training or felt unprepared for this aspect of their job. Navigators also reported being frustrated that providing mental health or emotional support, which they view as a significant and time-consuming part of their job, is not a designated service category for their position within the CCP model, which complicates their ability to fully and accurately document the work they do and for the agencies that employ them to apply this work toward their annual service targets.

A considerable amount of both qualitative and quantitative research has demonstrated the effectiveness of CCPs for HIV care. Studies have shown that program participation can lead to improved health outcomes for individuals living with HIV, and can help some HIV-positive individuals with a history of poor care outcomes reach undetectable status and stay virally suppressed.^13–19 Literature has also explicitly linked mental health to the health status of PWH,^3–6,13,24 highlighting the potential for individually tailored psychosocial interventions to optimize HIV outcomes, particularly for PWH who face multiple comorbid conditions and social disadvantage.

Nevertheless, there is limited literature on the importance of addressing mental health in the context of HIV care coordination. Further, there is a dearth of research illuminating client and provider perspectives on care coordination, especially studies relying on qualitative data. This article addresses gaps in the literature by using qualitative methods to describe client and provider experiences negotiating mental health needs and service delivery within a CCP. A particularly novel contribution of this study is its integration of qualitative data from both care coordination providers and clients in a single study that reveals significant concordance in their perspectives regarding clients' mental health needs, as well as some concerns specific to providers.

Limitations

It is important to note that the findings of this study may not be transferable to other HIV CCPs. As is typical of qualitative research, the samples are not intended to be statistically representative, but only to represent the experiences of the providers and clients who were interviewed. However, interviewees were purposively sampled to represent the diversity of clients and providers participating in this CCP. All of the participants in the study lived in NYC at the time of data collection. Given NYC's size and longstanding status as the epicenter of the HIV epidemic in the United States, results may be most transferable to other large urban areas with mature HIV epidemics.

Implications for practice

In the NYC CCP, clients' mental health needs were intended to be addressed through referrals to specialty services (typically, though not always, external to the CCP-implementing agencies). Because of NYC's rich service landscape, which contrasts with many other locations in the United States, specialty mental health services are generally available to CCP clients who need or want them. Nonetheless, interviews with both providers and clients made clear that many clients rely heavily on their patient navigator to provide immediate accessible mental health support as a service. This function was unintended but may be an inevitable result of navigators' accessibility to and frequent interactions with clients.

Several CCP clients interviewed in this study referred to their navigator as a family member or a close friend. This bond opens opportunities to provide effective social and emotional support and thereby improve clients' mental health, facilitating better medication adherence and, ultimately, viral suppression. Providers also underscored that the delivery of even informal mental health or emotional support services requires proper training, including guidance on setting appropriate boundaries. In light of these findings, one relatively simple measure that would help address some of the challenges identified by providers in this study is the routine provision of mental health-related training to patient navigators and similar staff who work directly with high-need clients in HIV CCPs.

The most significant barrier cited by interviewed providers was not being able to adequately document the mental health-related support provided by navigators. This suggests the potential value of a more systemic change to formally integrate mental health services into HIV care coordination/medical case management settings, with appropriate structures for training, clinical supervision, and reimbursement.^10,25 Making mental health/emotional support a documentable service category would allow the services that many care coordination providers are de facto providing to be more fully recognized and reimbursed. These findings are also a call to action to further research and address the impact mental health can have on HIV disease progression and HIV self-management.

Authors' Contributions

M.H. conducted interviews with providers and clients, participated in the analysis and interpretation of the qualitative data, conceived of the topic, and wrote the first draft of the article. H.G. oversaw the qualitative data analysis and interpretation, assisted with the preparation of the first draft, coordinated coauthors' contributions to the article, and participated in its revision. S.K. participated in the development of the interview guides, the qualitative data analysis, and the preparation of data for the tables.

A.S. helped identify relevant literature and revised the article. R.S. helped develop the interview guides and the qualitative data analysis plan and participated in the data analysis. T.T. participated in the data analysis and interpretation. T.B.S. provided critical input regarding the differences between the original and revised CCP. D.N. and M.K.I. conceptualized, obtained funding for, and co-led the PROMISE study. All authors critically revised the article and approved the final version.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This study was supported by the National Institutes of Health (NIH)/National Institute of Mental Health (NIMH), grant number R01MH117793 and by a Health Resources and Services Administration (HRSA) Ryan White Part A grant (HA89HA00015). This project was funded exclusively by governmental sources. The NIH and HRSA were not involved in the study conceptualization, conduct, data analysis/interpretation, nor in the decision to submit this article for publication. The interpretations and perspectives expressed are the authors' only and do not represent the official position or policy of the NIH or HRSA.