“I Want to Live: A Qualitative Investigation of Barriers and Facilitators to ART Adherence & Mental Health Maintenance in People With HIV”

Abstract

Objective

Mental health symptoms hinder engagement in antiretroviral therapy (ART) adherence among persons with HIV (PWH). Existing information on barriers and facilitators to mental health treatment in PWH is limited. This qualitative study explored barriers and facilitators to mental health treatment and ART adherence in PWH.

Methods

PWH (n = 16) and health professionals (N = 6) completed semi-structured interviews.

Results

Three themes describe how and why barriers to care intersected: (1) health systems were not equipped to accommodate the unique needs of people with HIV who needed mental health treatment; (2) complex mental health challenges intersected with other barriers; (3) a stable home base and community were critical to health but difficult to maintain.

Conclusion

Several participants suggested integrating mental health and HIV care.

Plain Language Summary

Listening to People With HIV in Philadelphia About Making Adherence to ART and Maintaining Mental Health Easier

Mental health issues often make adhering to recommended treatment for HIV more difficult, but we don't know exactly why or which parts are most challenging. This paper uses interviews to discuss barriers to maintaining mental health and HIV medication with people with HIV (PWH). They explained that: (1) it was difficult to find health providers who could adequately treat their unique needs; (2)mental health made other hardships even more challenging; (3) people needed stable housing to maintain health, but this provided its own challenges.

Keywords

antiretroviral therapy mental health persons living with HIV qualitative study

Introduction

In 2022, 39.0 million (33.1 million-45.7 million) people were living with HIV and 1.3 million (1 million-1.7 million) people became newly infected with HIV globally.¹ The prevention and treatment of HIV remains a significant population health problem. Antiretroviral therapies (ARTs) are effective to control HIV by achieving and maintaining viral suppression to an almost non-existent chance of transmitting the virus,² to decrease AIDS-related deaths, to save about 18.6 million lives.³ People with HIV (PWH) can expect a near normal lifespan with steady access and adherence to combination ART. However, enhancing receipt and adherence to ART to improve the HIV care continuum is still a challenge of this global epidemic.

Globally, approximately 29% of PWH do not achieve viral suppression,¹ with rates as high as 44.3% in some communities in the United States.⁴ Abundant prior studies have identified barriers and facilitators to ART adherence.^5–8 Across multiple systematic reviews and meta-analysis on this topic, mental health disorders, in particular, depression and substance use disorders, were consistently identified as a major barrier to ART adherence.^9–12 Therefore, beyond being important to enhancing the overall wellbeing of PWH, barriers to mental health treatment are important to investigate because of the role they play in ART adherence.

It is not surprising that mental health treatment can play an important role in ART adherence given its complex and bi-directional relationship with HIV/AIDS status. First, PWH are significantly more likely to meet criteria for a psychiatric diagnosis compared to the general population.¹³ Second, mental health symptoms can also arise as a side effect of ART or from the stigma, stress, and socioeconomic challenges associated with HIV care.¹⁴ Third, mental health disorders such as depression and substance use disorders are known to increase health risk behaviors that promote HIV transmission.¹⁵

Despite the prevalence of mental health disorders in PWH, only a few qualitative studies have examined barriers to mental health services in PWH.^14,16–19 Even fewer studies have included perspectives of PWH.^14,16 The current study aims to qualitatively investigate the barriers and facilitators to both mental health treatment and ART adherence in PWH in Philadelphia, Pennsylvania. Based on the larger literature on major challenges with ART adherence such as mental health,¹¹ financial burdens,⁵ pill characteristics,²⁰ and stigma,⁷ we expected that these themes would also be present in our investigation. Our study research question was to describe how barriers manifest and intersect in ways that prevent PWH with mental health diagnoses from accessing ART.”

Methods

Participants

We purposively sampled participants in Philadelphia, Pennsylvania. We sought approximately 20 participants based on typical guidelines for qualitative studies.²¹ Participants were recruited using flyers posted throughout infectious disease clinics and behavioral health clinics, listserv announcements, meetings with the University of Pennsylvania [Clinic] Community Advisory Board, and through snowball sampling and word-of-mouth. Inclusion criteria were self-identification as a person living with HIV and/or being a provider working in a support role for patients with HIV in a healthcare system. There were no other inclusion or exclusion criteria. Participants (N = 22) were PWH (N = 15), people who had work experiences with PWH (eg, social worker, psychologist, infectious disease physicians, N = 6), and 1 participant who both was PWH and had work experience with PWH (N = 1). Fourteen out of the 16 PWH who participated had sought mental health treatment at some point in their lives. Of the 22 participants (M_age = 48.4, SD_age =12.9), 7 identified as women and 15 identified as men; 13 identified as Black or African American and 9 identified as White.

Data Collection

Two interviewers created the interview guide in consultation with a mixed-methods researcher with expertise and experience in qualitative-interview guide creation. Interviews followed a semi-structured format with either fixed or flexible short-answer questions. Fixed questions ranged from asking participants about their own HIV treatment (eg, “[If on an ART regimen…] On average, how often would you say you adhere to your ART regimen?”) to their history of mental health care/diagnoses (eg, “Do you have any psychiatric or psychological diagnoses, for instance depression, anxiety, or substance use diagnoses?”). Open-ended questions explored barriers to mental health treatment (eg, “What do you see as barriers to mental health care? In other words, what makes it difficult to receive mental health treatment?”), ART adherence (eg, “What systems-care related barriers do you believe may impact ART adherence?”), and the relationship between the two (eg, “What, if any, mental health-related concerns do you believe most impacts ART adherence?”). The interviews concluded with questions regarding the importance of ART adherence and possible solutions to mental health and ART treatment barriers (eg, “What do you see as potential solutions to the barriers you previously identified?”). Our interview guide is included as Supplemental Material.

Interviews were conducted between July and December 2019. The interviewers were 2 female licensed clinical psychologists with PhDs in psychology and clinical experience working with PWH who did not have previous relationships with the participants. Participants were told they were participating in a research study. The interviewers delivered the semi-structured interview and asked follow-up questions to elicit more details about a topic as needed. All participants provided online written consent to the interviews and demographic collection on (Research Electronic Data Capture (REDCap). Interviews were conducted over the phone or in person (based on preference of the participant). Approximately 90% of interviews took place over the phone and were audio-recorded for transcription. Due to the sensitive nature of some of the interview questions, interviews were conducted in private locations and with only the interviewer present. Interviews lasted between 18 and 39 minutes. All interviews were conducted in English. Interviewers took notes throughout the interview to triangulate with transcriptions to ensure accuracy. Recordings were then transcribed verbatim by a professional transcription service.

Data Analysis

Interviews were coded in NVivo.²² We used a team-based approach for iterative data analysis. The team held regular debriefs after interviews and throughout coding. In the initial stage, the interviewers independently identified in vivo codes in the data, which resulted in a preliminary draft of the codebook after rigorous discussion to address inconsistencies. A team of trained coders then coded all transcripts, while regularly meeting to discuss possible themes they identified therein. Coders included a doctoral-level researcher, an advanced master-level student and a highly trained undergraduate research assistant. Coders were trained by the senior scholar, who met with them to ensure fidelity in coding and help resolve discrepancies as needed. We knew we had reached code saturation when no new topics were identified in the data.²¹

At this stage, the codebook compiled by the coding team was reviewed with the senior author, which provided an opportunity to resolve lingering small discrepancies and further refine the codebook in its final iteration. Utilizing this final codebook, all transcripts were reviewed again for final coding. A subsequent meeting ensured consensus coding and calibration, resolving any discrepancies that surfaced in this stage.

One more coder, a trained qualitative methodologist, then reviewed all coded transcripts and the codebook, and built themes from the data with input from the rest of the team. The third coder then wrote thick descriptions of themes using Hennink's “analytic spiral” of describing information identified through coding and developing themes by drawing connections and identifying relationships between codes, returning to the text to test codes, and then conceptualizing these relationships in the form of rich description.²³ This ensured that we had achieved meaning saturation.²¹ We knew we had reached meaning saturation when we had “richly textured understanding of issues.”²⁴ Thematic analysis was especially suited to this work, in which we wanted to ground our analysis in participants’ accounts of how they experienced the intersection of codes while also bringing extensive prior subject experience to the project.²⁵ We grouped codes together as they came up in participant interviews and developed themes from these groupings.

Since the purpose of this study is to elucidate the facilitators and barriers to HIV and mental health care in clinical and community settings from the lens’ of PWH and HIV healthcare providers, data have been included from both groups and are presented together. This approach enables us to identify themes that were of substantive importance to both groups and that indicate high priority concerns and opportunities.

Reflexivity Statement

Our interdisciplinary team included scholars with backgrounds in psychology, public health, and the history of medicine. Each team member brought unique skills and insights to the table, and we made a conscious effort to prioritize interdisciplinary collaboration, while always centering our data during our analytical discussions. We interpreted each participant's experiences as true to them, while understanding that each participant is situated in a specific context and also influenced by our qualitative process.²⁶ Some of our researchers lived in the same metro area as our participants and shared other characteristics, such as racial identity, age range, sex and gender, and sexual orientation. However, many of these characteristics also differed between interviewers and participants.

Procedure

This study was approved by the University of Pennsylvania Institutional Review Board and participants completed informed consent prior to their interview and completion of demographic information. Participants were recruited through flyers and listserv announcements at local clinics that provide care to PWH. Participants were compensated $50 for their time spent interviewing.

Results

The goal of this study was to understand how barriers manifest in ways that prevent PWH from accessing mental-health care and ART. Three themes were developed by organizing barrier and facilitator codes through thematic analysis: (1) health systems were not equipped to accommodate the unique needs of people with HIV who needed mental health treatment; (2) mental health challenges were complex and intersected with other barriers; and (3) a stable home base was critical to health but difficult to achieve and maintain. While we anchor the barriers and facilitators in 3 main themes, many barriers and facilitators were prevalent across all themes, which underscored the many ways they intersected in participants’ lives and influenced their ART adherence. We constructed themes based on how the barriers and facilitators interacted with each other most frequently discussed by the participants. Participant details are reported in Table 1.

Table 1.

Participant demographics.

Persons with HIV
Participant ID	Age	Sex	Race	Ethnicity	Relationship status
1	41	Male	White	Hispanic	Single
7	44	Male	White	Not Hispanic	Single
8	68	Male	Black	Not Hispanic	Divorced
9	24	Male	Black	Not Hispanic	Single
10	48	Male	Black	Hispanic	Separated
11	48	male	Black	Not Hispanic	Single
12	57	Male	Black	Not Hispanic	Single
13	62	Female	Black	Not Hispanic	Single
14	65	Male	White	Not Hispanic	Single
15	59	Female	Black	Not Hispanic	Divorced
16	46	Male	White	Hispanic	Living with partner
18	62	Male	Black	Not Hispanic	Single
20	58	Male	Black	Not Hispanic	Single
21	37	Male	Black	Not Hispanic	Single
22	44	Female	Black	Not Hispanic	Single

Providers
Participant ID	Age	Sex	Race	Ethnicity	Provider role
2	33	Female	White	Hispanic	Medical case manager
3	45	Female	White	Not Hispanic	Medical case manager
4	70	Male	Black	NA	Medical case manager and PWH
5	42	Male	White	Not Hispanic	Medical case manager
17	34	Female	White	Hispanic	Social worker
19	28	Female	Black	Not Hispanic	Single
23	50	Male	White	Hispanic	Advocator specialist

Health Systems Were not Equipped to Accommodate the Unique Needs of People With HIV who Needed Both ART and Mental Health Treatment

Health system and provider limitations diminished participants’ ability to maintain adherence to ART and generally care for themselves. Some of these barriers were logistical: for example, many participants described experiences of not knowing whether they were seeing the correct provider for their diagnosis. Because HIV and mental health diagnoses often both require many different providers and types of care, it was often difficult for patients to coordinate and maintain all aspects of their holistic health. Mark, a PWH who previously worked as a case manager for PWH, recommended all health systems placing a health worker in charge of managing care for PWH to take the burden off patients. Such a staff member would also be educated specifically in HIV management, something not all providers are trained in. This could address a commonly reported barrier that providers may not have the time or resources to correctly refer patients to the best possible care. In addition to case managers and HIV specialists, this staff member could be a physician or support staff (eg, social workers, psychologists, nurses, etc). Participants expressed that ensuring that all health systems designate a case manager or other health staff member to coordinate care could take the pressure off both patients and providers, each of whom face many challenges in managing multiple complex diagnoses. They also suggested that providing a designated coordinator could assist patients who are not aware of insurance options available to them, something which many participants discussed as a barrier.

Some participant suggestions for health providers and systems were relatively straightforward, which underscored how even small changes could potentially have large impact on patient wellbeing. For example, several participants noted the benefit of having support groups as part of their integrated care. Checking in with patients could both help the patient stay on track with their treatment, as well as reinforce that their provider cared about their wellbeing.

Participants also addressed the need to obtain HIV-specific resources from their mental health providers. Several discussed the lack of quality mental health care available to them. Michael, who lives with HIV, explained: “Dealing with mental health—the therapist got to be honest, number one. They got to be a real therapist, not just—somebody who's educated enough to know how to talk to a patient, basically.” (57yo, male, Black, not Hispanic). Providers agreed with the need for different protocols for PWH who have specific treatment and follow-up needs and require direct, honest communication about their interacting illnesses. Christine, a social worker, explained, “I don't know, like asking about it… Like doctors always ask like about your sexual history and your drug use history and that, but like I don't think people like actually connect it to the fact that they're trying to ask you about potential diseases, you know what I mean?” (34yo, female, White, not Hispanic). Patients and providers described quality health care as care that included honesty and understanding of specific challenges PWH face to maintain their health.

Since health appointments were often so difficult for participants to schedule, some participants suggested that health systems combine appointments or offer other services at health appointments. Participants said this kind of integrated care would ease their appointment burden as well as give them the opportunity to benefit from different kinds of health care expertise that could relieve some of their burden. Amanda, a medical case manager, agreed that this would alleviate barriers to accessing both kinds of care that patients needed. She explained: “Having social workers there—I just think sometimes patients aren’t fully honest with their doctors as to why they’re not taking medications or what their fears are.” (33yo, female, White, Hispanic). Amanda's experience highlights how lack of appropriately trained providers can exacerbate both mental and physical health challenges, especially when those challenges carry stigma. Having appropriately trained and designated health staff could alleviate some of the pressure on patients, as well as on health staff who lack such training or who struggle to coordinate complex care.

Logistical coordination extended to medication delivery; some participants suggested alternatives such as home delivery or easy-to-access medication pick-up points. Both options were important because some participants preferred delivery to their home to counteract transportation and logistical barriers, while others preferred the privacy of picking up their medication without risk of someone else who lived in their home accessing the package.

Mental Health Challenges Intersected With and Could Exacerbate Common Logistical Barriers to ART

Participants described multiple and intersecting mental health challenges they had experienced since receiving their HIV diagnosis. These challenges often articulated with stigma they experienced, as well as difficult logistical requirements to keep themselves healthy. Moreover, mental health challenges often intersected. For example, some participants described how substance use was related to feelings of deep depression that some people experienced when they received their HIV diagnosis. David spoke of a friend who had died from depression and alcohol use: “The diagnosis of HIV brings on horrible depression…one friend of mine was diagnosed with HIV; he bought himself a gallon of vodka and he went into a closet and he drank the whole gallon. And I found him dehydrated and still alive in that closet, but they weren’t able to even start an intravenous fluid stream because he was so dehydrated at the emergency room, and he died.” (41yo, male, White, Hispanic). David's remembrance of his friend's experience underscores how physical and mental health challenges of participants with HIV often play into and exacerbate each other. Many participants described similar intersections of mental-health challenges, particularly depression, anxiety, and substance use that made maintaining adherence difficult.

Mental health barriers intersected with other barriers such as pill fatigue and being unhoused. These logistical issues further compounded participants’ difficulties in maintaining ART adherence, making an already laborious set of tasks even more burdensome. Pill fatigue is a commonly cited barrier to ART adherence; our participants described how mental-health challenges such as depression could make it worse. Amanda, a social worker, explained, “Some people just don’t have it in them to get up in the morning and go take their meds.” (33yo, female, White, Hispanic). Providers and patients alike noticed that substance use sometimes made adherence difficult at any stage after one's diagnosis. For example, Adam explained that addiction could be a barrier to establishing the routines and habits necessary for adherence. “At that time [of my diagnosis], I was in active addiction,” he explained. “Still when I did test positive, I did start treatment right away, but it was on and off.” (46yo, male, White, Hispanic). Another participant described mental-health barriers as making it even more difficult to get to health appointments: “I believe that it is definitely one of my barriers, that I procrastinate a lot to avoid going to see someone. And that's just not with them. It's just like anything. Because my mood swings are so up and down lately.” (37yo, male, Black, not Hispanic). Mental health challenges intensified the already complex and often anxiety-inducing tasks associated with living with HIV and mental illness, which required much logistical coordination.

The high burden of health appointments and taking medication could also reinforce mental-health barriers by serving as a constant reminder of one's diagnosis and its associated hardships and stigmas. While some participants appreciated reminders to take their medication and offers of help, others considered such interactions to be an ongoing reminder of their HIV status that could cause them distress. Amanda added, “Anything that has to do with their medication or with their doctors, basically, it's like screaming in their face, you have HIV. Most people don’t like to deal with that.” Amanda's reflection of working with patients with HIV underscores how an HIV diagnosis can continuously present new mental health challenges, even during periods of relative physical health and ART adherence and underscores the need for care to respond to patients’ individual needs.

Participants with HIV described what could be a daily struggle to adhere to aspects of multiple health protocols that were interrelated and for which medications could sometimes conflict or have very difficult side effects. Brendan, who lives with HIV, described the constant effort required to maintain his health and how it could fall apart at any stage:

I’ll never forget it…I met a man at the bus stop and he—we were both coming from the infectious disease clinic and he said, no matter what they tell you, make sure you take your psych medication because if you’re not mentally fit … you can’t think to take the other medication. Well, it didn’t make sense then, but it does now…if I’m mentally stable and I’m thinking straight, then I can say okay, today is Monday, I take my medication. Today is Tuesday, I take my medication. I am thankful that that man said that to me. I never saw him again, but… every time I sit at that bus stop I think about him. I think—I’m like is he still alive? Did he keep the same advice that he gave me?”

(37yo, male, Black, not Hispanic)

The encounter Brendan shared exemplifies the confluence of mental health factors that make maintaining health difficult for PWH who also have mental health challenges. He illustrates the building blocks required for a foundation of mental and physical health and the painstaking care PWH must take to maintain it, as well as the high stakes of following all steps thoroughly.

A Stable Home and Community Base was Critical to Maintaining ART Regimen but Difficult to Achieve and Maintain

The need for a stable home, while true for all people, was especially crucial to and fraught for PWH. The endeavor to find and maintain a home underscored the intersection of several barriers and facilitators to ART adherence. A home could provide a base from which PWH could more easily maintain ART adherence but also could be a site where they experienced stigma and additional logistical stress.

Many participants discussed having a difficult time finding stable housing at all. This often led to basic logistical issues. For example, without stable housing, several participants said they struggled to find a way to properly store their medication. However, even when they found housing, maintaining a living space could be difficult, because doing so required facing multiple additional stressors. Sonja, a PWH who also works as an administrator for a community health center, explained: “Just because you give them stable housing but you’ve got to give them a job so that they can have money so they can pay their bills and keep that stable housing. It all goes hand-in-hand. So you can give somebody an apartment; they’re going to have an electric bill, and they’re going to have a gas bill. They’ve got to be able to pay it, because if they don’t it's going to get shut off.” (59, female, Black, not Hispanic). Maintaining a home often required much logistical management, executive functioning, and was contingent on financial status, identifying reliable transit, and the maintenance of one's mental health with appropriate health care and access to medication.

Moreover, having stable housing did not guarantee emotional safety from HIV-related stigma. Participants’ homes could become a site in which they experienced additional stress and reminder of their HIV status. For example, participants and providers noted that many PWH who shared living space with others could be stigmatized for carrying HIV medication with them. Several participants discussed removing medication labels to avoid housemates learning of their HIV status. Experiencing stigma at home could intersect with other medication-related barriers such as pill fatigue and lead to participants eventually declining to take their medication. Adam explained “Why do people not want to take their medication? I still think that … there is a stigma that puts barriers up for people to not take their medication. I have a coworker who was and is in an apartment building and has lived with his virus ever since he was born, but he still like peels the labels off his bottles, still hides his medications…” (46yo, male, White, Hispanic). The need for a home was prevalent among all participants, but they differed in abilities to maintain it and in how many additional barriers to ART adherence they encountered once they found and maintained a home.

While participants said that navigating community dynamics was difficult due to stigma and the logistics of staying healthy, many expressed a devotion to other PWH in their community, sadness for loved ones who had died, and gratitude for being alive. Their losses motivated them to maintain their health. Charles explained, “I'm from an era where all my friends died. It's only about 3 of us left from what I call the club scene. I watched all these guys die. I've been to so many funerals and stuff it got to be almost—there were no tears anymore. I appreciate what I got because I saw what it did to so many of these guys—beautiful Black men just ravaged.” (62yo, male, Black, not-Hispanic). Charles’ long-term experiences with people in his community dying from HIV evoked sadness and motivated him to keep himself healthy, despite other barriers. Similarly to other participants, Charles noted transportation difficulties, the difficulty of obtaining insurance, substance use, and pill fatigue. However, his community had played a critical role in maintaining sobriety and ART adherence. He mentioned support groups as a way he had built and maintained his community that understood his struggles and could provide emotional support to support his desire to live a full life: “Being able to live a longer life. Having a future. And planning for the future. Go back to school. Go back to carpentry class. Go back to whatever you thought you wanted to be in your life. Now that you put the drugs down and all of that, just do you.” Sonja echoed Charles’ perception and emphasized how many PWH seek to better their lives: “Well, there are some people … who can and strive to do the right thing today. Because like I said, I want to live. And other people want to live today. And they want to live and they want to reach out and help other people.”

Discussion

In this qualitative study of PWH and their care-team members, mental health issues were raised by most participants as barriers to the ART retention/adherence, such that over half of participants discussed how depression and substance abuse could hinder ART treatment retention/adherence. We also identified an important facilitator to simultaneously address multiple barriers to ART retention/adherence, which is to consolidate multiple services (such as mental health support and HIV specialist) in the same location. Participants described several other factors (Providers, ART medication, Financials, General Life Stress, and Motivation) that could manifest as barriers or facilitators. Together, these findings illustrate unique and common barriers and facilitators to mental health and ART treatment in PWH. Our themes illustrate how these factors coalesce and work together to impede or enable ART and mental health treatment.

Participants identified that co-location of services could facilitate retention in HIV and mental health care. Integrated HIV and mental-health services can lead to lower depression, alcohol use, and self-stigmatizing.²⁷ This approach holds the potential to address a number of major barriers to mental health and HIV care as identified in the current study, including depression (72.7%), substance use (59.1%), transportation (63.7%), and stigma on mental health or HIV transmission (40.9%). At the same time, some studies suggest that integrated care settings can be harmful if they increase provider burden.²⁸ Our study augments this research with the inclusion of patient perspectives of what types of integrated care they need, as well as their desire for a care coordinator. Assessing the specific needs of the local community and hiring a case manager or other staff member to oversee co-location of necessary services in all health systems and clinics could help reduce patient stress in targeted ways that would not add to provider burden.

Integrated care can extend beyond physical co-location of services. For example, transportation was identified as a barrier to both ART adherence and mental health treatment. Lack of affordable transportation and unreliability of public transit are often cited as major reasons for missing clinic appointments among PWH, especially during the time following the COVID-19 pandemic.^8,29 One possible solution is the option to receive both mental health care and ART via telehealth.⁶ Access to telehealth increases rates of ART initiation and maintenance as proper and may have similar effects on rates of mental health treatment initiation and retention among PWH.⁶ Our study echoes the literature regarding the need to reduce patient burden and extends it by illustrating patients’ desire to be well and how relatively small changes to health care can be effective in supporting their adherence to health protocols.

Interactions with treatment provider were reported as a factor in whether a PWH engaged with mental health care or ART, consistent with prior qualitative studies that demonstrate how providers’ guidance and patients’ trust in them motivated patients to continue their medication.¹⁰ Participants reported more belief in providers and treatment when they felt faith, respect, and support from healthcare staff. A study of 28 PWH in Vietnam suggested that support from healthcare providers was the most critical facilitator of mental health treatment-seeking behaviors.¹⁶ Our results reinforce the importance of dynamics between treatment providers and patients for both mental health care and ART and highlight the role of providers’ skillfulness and conscientiousness in patient health. Mental health and HIV care facilities should explore avenues to enhance provider competency, such as offering professional development training to promote patient engagement in a tailored and strategic way that does not increase the care burden or the burden on patients seeking help to maintain their health.

Beyond these considerations, participants identified a host of other pressing needs to increase care initiation and retention, including characteristics of ART medication or mental health treatment, financial issues, general life stress, and lack of motivation. Some of these barriers might disproportionately impact historically oppressed groups, racial/ethnic minorities and gender and sexual minorities. For instance, individuals who identify as Black, Hispanic, or sexual or gender minorities endorse financial barriers to mental health treatment and ART.³⁰ Given our small sample size, we were unable to examine how minority status interacts with these barriers, financial or otherwise, to influence care engagement. This is an important direction for future research.

Implications for Research, Intervention, and Policy

There are several important clinical implications of this current study. There is a pressing need to reduce mental health burdens to improve ART adherence. Our findings highlight the need to integrate mental health screening and care, particularly targeting depression and substance use disorders, into HIV testing and treatment settings. Such integration will not only strengthen HIV prevention and care outcomes, but it would additionally improve global access to mental healthcare. Co-located care holds the potential to simultaneously address several salient barriers reported in the current sample and in prior studies. Given our findings on the importance of provider–patient dynamics, policies should prioritize quality relationships in healthcare settings through measures such as setting communication standards, promoting empathy and respect, and enabling patient feedback mechanisms. Further, policies should encourage and fund professional development programs in mental health and HIV care facilities, aimed at enhancing provider competencies like skillfulness and conscientiousness, as emphasized by our participants.

Our study has strengths and limitations. We interviewed both providers and PWH to identify more barriers and understand how they intersected in the lives of PWH. Our sample was not sufficient to examine gender and racial differences. As previous studies have mentioned, there are significant racial and ethnic barriers to HIV treatment, including racial differences in knowledge about treatment available³¹ as well as gender differences in initiating treatment (women were less likely to begin ART treatment regimens) (Mocroft et al, 2000). Mitigating these barriers that contribute to health equity should be the focus of future research. We did not conduct an assessment of psychiatric symptoms to determine whether participants met criteria for a psychiatric diagnosis and thus must rely entirely on the participants’ self-report. We did assess when participants received their HIV diagnosis, but not their stage of illness in our small qualitative study (Table 2).

Table 2.

Barriers and facilitators to mental health treatment or ART adherence.

Theme (Bold) & Associated Codes	n	Illustrative quote
Health systems were not equipped to accommodate the unique needs of people with HIV who needed mental health treatment
Provider Incompetence	6	“Dealing with mental health—the therapist got to be honest, number one. They got to be a real therapist, not just—somebody who's educated enough to know how to talk to a patient, basically.”
Access to Providers/Resources	6	“Access to providers. That's one major thing because if it ain’t [name of organization], I don’t know no other place to go—me personally” “Lack of resources.”
Distrust in Medical Providers	4	“Education of understanding the medical profession, or trust in the medical profession to sort of understand the necessity for follow ups and maintaining appointments and continuing the medication and seeing how it affects.”
Change in Providers	3	“And I feel like less transitions [between providers] that would be a lot more help, to be honest with you”
Lack of Education—HIV	5	“… disease stuff is pretty complicated and if you have a patient that's either more concrete or just doesn’t have a lot of exposure to like health and stuff like that. It could be too abstract for them to really understand or care about what you’re saying is going to happen to them. So, it could just be like a lack of knowledge.”
Lack of Education—Medication	2	“Knowledge of the medication. Some people believe that they have to stay on the same medication all the time.”
Mental health Awareness	2	“I think just awareness of it. Then”
Mental health challenges were complex and intersected with other barriers
Depression	16	“I think that if someone is, for example severely depressed…they can’t make the decision to take medication or to care for themselves.”
Substance Use	13	“And then, a lot of times, people who have a addiction don’t take it.”
Mental health in General	9	“It does have a big impact because if you don’t address your mental health issues, that will make you stumble and don’t take your medication.”
Anxiety	5	“I think if they're feeling a lot of anxiety and are very distracted, they might miss a dose”
Side effects	19	“I definitely have those people that … experience side effects with specific medications and then don’t want to try a different one because they’re afraid of that.”
Pill burden	6	“I think if somebody's living with HIV for so long, taking meds every day, it can become very burdensome per that stigma around it.”
Selling Medication	5	“Sometimes they sell their medication, so they’re not taking them because of that.”
Access to medication	5	“But I had for instance a client that was admitted to a hospital in the area and they didn’t have the HIV meds that she needed. They just don’t prescribe them there. And she didn’t really know how to handle that, so she went about two weeks without them.”
Low Motivation	15	“It's not being—just not caring that much about yourself or bothering to take your medications because you don’t think—some people will say, I’m just not going to take them anymore. I’m just going to wait to die.”
Forgetfulness	10	“I mean I guess there could be forgetfulness of taking meds for people who also have a mental health background.”
Procrastination	2	“And so no, you’re—a lot of people will put it off as long as they can until it gets so brutal that things are really going bad.”
Long Wait Time	2	“So I feel like just waiting for those—waiting for people—waiting for social workers who work in that field, that could be a little wait time, because he's been waiting a little while.”
A stable home base and community were critical to health but difficult to achieve and maintain
Transportation	14	“I also think transportation to get the medication, or transportation to the medical office, like if you can’t afford that then you can’t get the medication.”
Housing	12	“Sometime when people are homeless, right? They don’t have no place to store their medication.”
Medication Storage	7	“They don’t have anywhere to store their medication or they’re afraid of it getting stolen.”
General Life Burden	4	“Besides HIV that people get up—living with HIV and deal with a lot of—a job, then kids, and breaking up with their loved ones and everything, and death and everything. So, it's a lot of things that people go through.”

Insurance/Copay	20	“Insurance is kind of—just kind of a mess… If they need to be seeing a specialist but the insurance is a barrier they are just going to fall out of care.”
Finance in General	11	“I’ve been so stressed with money, or I’ve been so stressed with like other family problems that are going on, or relationships, or a death in the family.”
High Medication Price	6	“Pharmaceutical companies have outrageous prices on the medication.”
Mental Health Stigma	6	“The first one is just being honest with yourself and saying that I may need it—that's the biggest issue because of the stigma that goes with the whole thing—any kind of psych meds or anything, you immediately think, they think I’m crazy.”
HIV Transmission Stigma	3	“When you get a diagnosis of that kind there's still like sadly, misinformation about what the—like people might not know that you can’t like contract it just by like touching the person. So, they might respond in a negative way and that might increase the stigma”
Time
Busy	5	“I feel like I never got a chance to—having that schedule and getting it time and just being able to take it every day on a set schedule.”
Scheduling Appointment	5	“The doctors that have very, very strict schedules—you know, they have so many patients every day.”
Low Priority	2	“But I think a lot of times it is, it doesn’t—it needs to be a priority for the client, but it's also like not a priority because they then start dealing with many things in their life.”
Others
Denial	8	“Other people don’t like thinking about having HIV and just would rather put it to the side. If they don’t think about it, it's not there”

Conclusion

In summary, we found that PWH suggested integrating mental health treatment into HIV care. Our findings underscore the need for co-located care and collaborative treatment planning between mental health experts and HIV care providers, which can effectively address major barriers identified in this study, including poor mental health, transportation, privacy concerns, financial concerns, and stigma. This approach, coupled with policies promoting enhanced provider–patient relationships and professional development programs in mental health, substance use, and HIV care, can lead to improved patient outcomes.

Key Considerations

People with HIV (PWH) desire providers who are trained on HIV issues.

Many PWH sought a care coordinator to help them manage their care. This could alleviate the burden of seeking out many kinds of care and also decrease provider burden.

Home and community can be a protective factor for PWH and can inspire them to maintain their mental health and ART adherence despite other concrete barriers to care. However, both of these facilitators can simultaneously present new barriers to care, such as stigma and logistical burden.

Many people with HIV want to maintain their health; care, treatments, and programs for PWH should harness this motivation rather than seeing nonadherence as a sign of not wanting to maintain health.

Supplemental Material

sj-docx-1-jia-10.1177_23259582251413665 - Supplemental material for “I Want to Live: A Qualitative Investigation of Barriers and Facilitators to ART Adherence & Mental Health Maintenance in People With HIV”

Supplemental material, sj-docx-1-jia-10.1177_23259582251413665 for “I Want to Live: A Qualitative Investigation of Barriers and Facilitators to ART Adherence & Mental Health Maintenance in People With HIV” by Emilie Egger, Pranav Kancherla, Yiqin Zhu, Henna Budhwani, Cecile Denis, Chelsea D. Voytek and Lily Brown in Journal of the International Association of Providers of AIDS Care (JIAPAC)

Supplemental Material

sj-docx-2-jia-10.1177_23259582251413665 - Supplemental material for “I Want to Live: A Qualitative Investigation of Barriers and Facilitators to ART Adherence & Mental Health Maintenance in People With HIV”

Supplemental material, sj-docx-2-jia-10.1177_23259582251413665 for “I Want to Live: A Qualitative Investigation of Barriers and Facilitators to ART Adherence & Mental Health Maintenance in People With HIV” by Emilie Egger, Pranav Kancherla, Yiqin Zhu, Henna Budhwani, Cecile Denis, Chelsea D. Voytek and Lily Brown in Journal of the International Association of Providers of AIDS Care (JIAPAC)

Footnotes

Acknowledgments

This publication was made possible through core services and support from the Penn Mental Health AIDS Research Center (PMHARC), an NIH-funded program (P30 MH 097488).

Ethical Statement

This study was approved by the Institutional Review Board (IRB) (833367).

Consent Statement

All participants provided written or oral consent prior to interview and collection of demographic data. All participants were compensated $50.

Author Contributions

All authors on this paper meet the 4 criteria for authorship as identified by the International Committee of Medical Journal Editors (ICMJE); all authors have contributed to the conception and design of the study, drafted or have been involved in reviewing this manuscript, reviewed the final version of this manuscript before submission, and agree to be accountable for all aspects of the work. Specifically, using the CRediT taxonomy, the contributions of each author are as follows: Conceptualization & methodology: Lily Brown. Formal analysis: Yiqin Zhu, Emilie Egger. Funding acquisition: Lily Brown. Investigation: Lily Brown, Emilie Egger, Yiqin Zhu. Project administration: Lily Brown. Supervision: Lily Brown. Validation: not applicable. Writing—original draft: Emilie Egger, Yiqin Zhu. Writing/Revising: Lily Brown, Cecile Denis, Emilie Egger, Yiqin Zhu.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded with support from the Penn Mental Health AIDS Research Center (grant no. P30 MH 097488).

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Accessibility

Data may be available upon request to the corresponding author, depending upon privacy/ethical restrictions.

Supplemental Material

Supplemental material for this article is available online.

ORCID iDs

Emilie Egger

Pranav Kancherla

Henna Budhwani

Chelsea D. Voytek

Lily Brown

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