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. Author manuscript; available in PMC: 2026 Oct 4.
Published before final editing as: AIDS Care. 2026 Sep 11:1–13. doi: 10.1080/09540121.2026.2728234

Burden of Mental Health Symptoms and Access to Needed Mental Health Care among People with HIV in New England

Elizabeth M Olsen 1,2,3, Kayla K Giorlando 4, Michelle M Henshaw 5, Sarah Bailey 4, Trisha Arnold 1,4, Laura B Whiteley 1, Curt G Beckwith 1,6, Christopher W Kahler 7, Larry K Brown 1,2,3
PMCID: PMC13633834  NIHMSID: NIHMS2210762  PMID: 42728761

Abstract

People with HIV (PWH) are disproportionally impacted by mental health symptoms. HIV clinics strive to connect PWH with mental health services, but the effectiveness of these efforts is unknown. This project assessed the prevalence of mental health symptoms and barriers to related care among 133 PWH connected to two HIV clinics in New England. Participants were 49.8 years old on average, 38.3% White, 20.3% Hispanic/Latinx, and 67.7% male. Many participants reported moderate-to-severe symptoms of depression (49.6%), anxiety (33.1%), anger (22.6%), and sleep disturbance (34.6%). Compared with participants who were able to access needed mental health care, those who could not (21.8%) were younger, less likely to have HIV viral suppression, had higher rates of mental health symptoms, greater interpersonal and structural barriers to care, and were more likely to report that their HIV care provider offered to help them find mental health care. A logistic regression demonstrated that structural barriers alone were associated with PWH being unable to receive needed mental health care (OR 3.23, p < .001). Integrating connections to mental health services in HIV clinics could benefit the majority of PWH, but gaps remain in connecting PWH facing significant structural barriers.

Keywords: HIV, mental health, substance use, healthcare barriers, New England

SDG Keywords: SGD 3-Good health and well-being, SGD 10-Reduced Inequalities

INTRODUCTION

People with HIV (PWH) are disproportionally impacted by behavioral health conditions, including psychiatric and substance use disorders, as compared to individuals who do not have HIV.(Cook et al., 2018; Hu et al., 2025; Lang et al., 2023) These disparities remain even when considering that PWH encompass a wide array of individuals, including those of various ages, sexes, racial and ethnic backgrounds, risk factors for HIV, and modes of HIV acquisition (e.g., perinatally or behaviorally).(Bing et al., 2001; Ickovics et al., 2001; Kendall et al., 2014; Mellins & Malee, 2013; O'Cleirigh et al., 2015) The clinical implications of comorbid mental health symptoms among PWH have also been well-established. For example, PWH who reported psychiatric illness, problematic alcohol use, and dependence on illicit drugs, were less likely to achieve viral suppression than those without these concerns,(Yellin et al., 2018) and those with unhealthy patterns of alcohol use were more likely to have advanced HIV disease severity.(Marshall et al., 2017) Conversely, reduction in and abstinence from substance use has been significantly associated with viral suppression among PWH.(Nance et al., 2020) Mental health symptoms have been associated with poorer quality of life scores,(Parish et al., 2020) faster HIV disease progression,(Leserman, 2008) increased caregiver burden,(Knowlton et al., 2009; Mitchell et al., 2022) and elevated healthcare costs(Xu et al., 2025) among PWH. Furthermore, in a longitudinal study of HIV-seropositive women, women with chronic depression were twice as likely to die as compared to women with limited or no depression, even after controlling for baseline CD4 cell count, viral load, and use of antiretroviral medications.(Ickovics et al., 2001) Therefore, mental health disorders are not ancillary concerns but central drivers of HIV outcomes, underscoring the urgent need for effective and scalable mental health care approaches for PWH.

Significant and promising efforts have been made to increase access to and enhance effectiveness of mental health treatment among PWH, including the development of tailored interventions. These interventions have employed a variety of therapeutic approaches, including Cognitive Behavioral Therapy (CBT) and Motivational Interviewing (MI), delivered through individual or group psychotherapy, with some interventions also incorporating psychiatric medication management.(Brown et al., 2021; Magnolini et al., 2024; van Luenen et al., 2018) However, meta-analytic data and systematic reviews have suggested that the effect sizes of psychosocial interventions for PWH are small to moderate.(Remien et al., 2019; van Luenen et al., 2018) Furthermore, these interventions do not necessarily address interpersonal and structural barriers that influence connections to available mental health treatment, including knowledge gaps, stigma, financial barriers, among others.(Dergham et al., 2026; Robbins et al., 2022) To address these barriers and better connect PWH with mental health care, many HIV clinics have integrated care navigators as well as behavioral health screenings and referrals to specialized providers. For example, care coordination, previously shown to be effective for connecting PWH to HIV care, is now being explored for its efficacy in also addressing mental health symptoms among PWH in some projects.(Hernandez et al., 2024; Irvine et al., 2020) Other studies have examined how Ryan White funding may help address gaps in ancillary mental health services among PWH(Dasgupta et al., 2022) and if simulated patient encounters can help HIV providers better screen for psychiatric disorders during their appointments.(Concepcion et al., 2023) There is great need to continue and extend these lines of research to examine the effectiveness of both mental health treatments and the strategies employed to connect patients to care to reduce mental health symptoms among PWH.

The HIV clinics associated with the Providence/Boston Center for AIDS Research (P/B CFAR), namely the Immunology Center of The Miriam Hospital in Providence, RI and the Center for Infectious Diseases at Boston Medical Center, in Boston, MA, provide care to a diverse population of approximately 4,000 PWH. In keeping with efforts to integrate connection to mental health services into existing clinic structures, the clinics employ social workers who provide behavioral health screening and supportive counseling. They also refer patients to psychiatrists and psychologists who may be embedded within the clinic or in the community and have an interest in providing mental health care for PWH. However, considering the large number of PWH that these clinics serve, the extent to which these procedures address mental health symptoms and barriers to accessing mental health care among PWH is unknown. Therefore, we conducted an exploratory analysis to (a) describe the current mental health status and substance use among PWH at these two academic HIV clinics, (b) evaluate access to needed mental health care, and (c) assess the interpersonal and structural barriers which may impact access to needed mental health care. These aims were chosen to inform future implementation strategies and interventions for improving access to mental health care for PWH.

MATERIALS AND METHODS

Participants

PWH (N = 133) were recruited from two P/B CFAR HIV Clinics to participate in a survey study of barriers and facilitators to HIV, dental, and mental health care. This report summarizes the factors associated with engagement in mental health care among PWH. Inclusion criteria were: 1) age 18 or older, 2) English speaking, 3) received care for HIV infection from the P/B CFAR-affiliated clinics at the time of the survey and 4) able to provide consent. Adults who were unable to consent were not eligible for study participation. Minors, prisoners, and pregnant females were not recruited. Participants were enrolled between March 2024 and February 2025. As this was an exploratory study focused on evaluating the mental health status, substance use, access to needed mental health care, and barriers to receiving this care within two HIV clinics, a sample size of at least 100 participants was determined to be adequate for the proposed associational analyses (power .8 for correlations >.27) and logistic regressions (power .8 for OR >1.75).

Procedures

The protocol and all study materials for this research were approved by the sponsoring institution and collaborating sites’ Institutional Review Boards, namely Brown University Health (#2121927) and Boston Medical Center (H-44924) and performed in accordance with the principles stated in the Declaration of Helsinki. Participants were recruited in the clinics’ waiting rooms either via self-referral from posted flyers or by being approached by a trained research assistant. Interested individuals then completed a confidential eligibility survey. Those who met eligibility criteria then met with the research assistant in a private space near the clinic to receive more information about the study as well as to complete written consent-to-contact and informed consent forms. After consenting, participants completed a study questionnaire via REDCap, a HIPAA compliant, web-based application to collect and manage data.(Harris et al., 2009) This survey took approximately 60 minutes to complete either on a study iPad in the clinic or from their own personal devices at a location of their choosing. Participants were compensated with a $100 gift card upon survey completion. As a part of the consent process, participants agreed to have their most recent HIV viral load extracted from their medical records.

Measures

Participant Characteristics

Demographics.

Participants self-reported demographic characteristics including age, sex assigned at birth, race, ethnicity, sexual orientation, education level, housing status, and insurance status. Participants were asked to describe where they are currently living or staying most of the time and were grouped into having stable versus unstable housing. Also, participants self-reported their health insurance status and were grouped into either being insured (having private or employer sponsored insurance, Medicaid, Medicare, Medi-gap, military health care, or other public insurance) or uninsured.

Receipt of Needed Mental Health Services.

Participants self-reported “Yes” or “No” to the following item: “During the past 12 months, was there a time when you needed mental health care but could not get it?” Responses to this item yielded the two comparison groups examined in this study.

Viral Suppression.

Participants’ most recent viral load was abstracted from their electronic medical records to assess adherence to care. Those with viral loads ≤ 200 copies/mL were deemed to have viral suppression.(Dybul et al., 2002; Horberg et al., 2024)

Patient/Provider Characteristics

Patient/Provider Relationship.

This measure is comprised of seven Likert-type response items derived from our prior work with PWH, utilizing items from the Working Alliance Inventory and PrEP Collaboration Measure.(Davies et al., 2006; Tracey & Kokotovic, 1989) These items include statements like, “I feel understood by the HIV clinic staff” and “I feel that the HIV clinic is aware of my needs and preferences” to which participants can respond from “Strongly Disagree” (1) to “Strongly Agree” (4).

Discussions with HIV Care Providers.

Participants responded “Yes” or “No” to the following items: 1) “Has your HIV care provider or the HIV clinic staff discussed you receiving mental health care?” and 2) “Has your HIV care provider or the HIV clinic staff offered to help you find mental health care?”

Mental Health Symptoms

Patient Reported Outcome Measurement Information System (PROMIS).

The PROMIS was developed by the NIH to gather data on psychiatric symptoms consistent with DSM-5 diagnoses. With branching logic, 17 general questions regarding the past two weeks lead to more in-depth assessment of common psychiatric symptoms over the past week (e.g., Depression, Anxiety, Anger/Irritability, Sleep Disturbance). PROMIS instruments were developed using item response theory and have been tested in more than 20,000 individuals drawn from the general United States population.(Bartlett et al., 2015; Cella et al., 2010; Cella et al., 2007) For the purposes of this study, the following mental health subscales were utilized: General, Depression, Anxiety, Anger, Sleep, and Psychosis. Note that the PROMIS does not have a more in-depth assessment of psychosis. There are only screening items.

Substance Use

Alcohol, Smoking, and Substance Involvement Screening Test (ASSIST V2.0).

The ASSIST assesses tobacco, alcohol, cannabis, cocaine, amphetamine-type stimulants (including ecstasy), inhalants, sedatives, hallucinogens, opioids (including injectable drugs), and “other drug” use. The ASSIST can discriminate between low, moderate and high-risk use and provide information on drug and alcohol use in the past three months.(Humeniuk et al., 2008)

Interpersonal Barriers

Interpersonal Barriers Scale.

Participants were presented with nine potential barriers to receiving mental health care and provided responses of either “Yes” (1) or “No” (0) to the following question stem: “What were the reasons that you could not get the mental health care you needed?” A total score was tabulated for each participant. The scale demonstrated excellent reliability (Cronbach’s α = .87). The barriers evaluated were:

  1. I’m afraid of mental health treatment.

  2. I didn’t think mental health issues were serious.

  3. I do not know how to access mental health care.

  4. I forget about getting mental health care.

  5. I'm worried about talking about my HIV status or that providers may treat me differently because of my HIV status.

  6. I don’t believe in mental health care.

  7. I missed appointments because I was using substances such as alcohol, cannabis, opioids, etc., or I worry providers may treat me differently because of my substance use.

  8. I worry providers may treat me differently because of my use of cigarettes, chewing tobacco, etc.

  9. I used other methods of treatment (e.g., over the counter medications, meditation, art, music, yoga, supplements, etc.) instead of getting mental health care.

Structural Barriers

Structural Barriers Scale.

Participants were presented with eight potential barriers to receiving mental health care and provided responses of either “Yes” (1) or “No” (0) to the following question stem: “What were the reasons that you could not get the mental health care you needed?” A total score was tabulated for each participant. The scale demonstrated adequate reliability (Cronbach’s α = .69). The barriers evaluated were:

  1. I could not afford the cost of treatment.

  2. I did not want to spend the money on mental health care.

  3. My insurance did not cover recommended care.

  4. Lack of stable housing makes it difficult to get mental health care.

  5. Lack of transportation makes it difficult to get mental health care.

  6. The mental health office is not open at convenient times.

  7. The mental health office is too far away.

  8. I’m not able to take time off from work.

Statistical Analysis

Frequencies and means with standard deviations were calculated for categorical variables and scale scores, respectively. T-tests and chi-square tests were used to examine the differences between participants who were able versus unable to access needed mental health services in the past 12 months. Significant variables were then entered into a logistic regression to determine associations with inability to access all needed mental health care in the 12 months. All analyses were conducted with IBM SPSS Statistics for Windows, version 26.(Corp, 2019)

Variables significantly (p < 0.05) associated with being unable to receive needed mental health care in the past 12 months in the initial analyses were entered into a logistic regression with the following exceptions. As housing status was already included in the structural barriers scale score, this factor was not duplicated in the model. Similarly, as HIV health status and substance use were accounted for in the interpersonal barriers scale score, these factors were also not duplicated in the model. Additionally, only the General Mental Health Symptom scale of the PROMIS was entered into the logistic regression to limit multicollinearity as the specific disorder subscales of the PROMIS were associated with the General scale scores (data not shown).

RESULTS

Participant and Patient/Provider Characteristics

To reach our recruitment goal of at least 100 participants, 198 individuals were screened for study participation. One of these individuals was found to not be eligible for study completion due to severe cognitive deficits. Thirty-two eligible individuals did not participate in this study because they either were unable to be reached by research staff due to appointment cancellations or staff being unavailable at the time of the appointment (n=18), did not respond to follow-up contact (n=1), or expressed disinterest in participating (n=13). Those who expressed disinterest shared the following reasons: general lack of interest in participating in research (n=9), not having the time to participate (n=3), and not wanting to give out their email address (n=1). Most individuals who provided consent (80.6%, 133/165) completed the survey. Participants who consented to participate but did not complete the survey (n=32) did not provide a reason for the lack of survey completion and did not respond to reminders to complete the survey.

Participant demographic data are listed in Table 1. Participants ranged in age from 22 to 71 years old (M = 49.8; SD = 12.1). The majority of the sample (69.9%) was assigned male at birth, whereas 29.3% were assigned female at birth. The proportion of participants recruited from Providence, RI (51.1%) versus Boston, MA (48.9%) was nearly equal. Most participants identified as either heterosexual (41.4%) or gay/lesbian (45.1%), with the remainder identifying as bi- or pansexual, asexual, or other sexual orientation. Most participants reported being either White (38.3%) or Black/ African American (22.6%), and 20.3% identified as Hispanic/ Latinx. More than half (60.9%) completed at least some college. Nearly all of the participants (94.7%) had viral suppression (e.g., ≤ 200 copies/mL). Less than a quarter (21.8%; n = 29) of the sample reported not receiving needed mental health care in the past 12 months. In initial analyses, participants who did not receive needed mental health care were more likely to be younger, not have viral suppression, and have unstable housing (Table 1). They were also more likely to have had their HIV care provider offer to help them find mental health care. There were no differences between groups in study location, sex assigned at birth, race, ethnicity, sexual orientation, education level, patient/provider relationship, and discussing their mental health care needs with their HIV provider (Table 1).

Table 1.

Participant and Patient/Provider Characteristics by Ability to Receive Needed Mental Health Care in the Past 12 months

Total Sample
(N = 133)
N (%) / M (SD)
During the past 12 months, was there a time
when you needed mental health care but could
not get it?
Test Statistic p
Yes
(n = 29)
N (%) / M (SD)
No
(n = 102)
N (%) / M (SD)
Participant Characteristics
Age 49.8 (12.1) 44.7 (12.4) 50.8 (11.6) t = −2.41 .017*
Sex Assigned at Birth x2 = .306 .858
Male 93 (69.9) 20 (69.0) 71 (69.6)
Female 39 (29.3) 9 (31.0) 30 (29.4)
Location x2 = 1.78 .131
Boston 65 (48.9) 11 (37.9) 53 (52.0)
Providence 68 (51.1) 18 (62.1) 49 (48.0)
Race x2 = 4.51 .608
American Indian/ Alaska Native 1 (0.8) 1 (3.4) 0 (0)
Asian 3 (2.3) 0 (0) 3 (2.9)
Black/African American 30 (22.6) 7 (24.1) 23 (22.5)
White 51 (38.3) 11 (37.9) 38 (37.3)
Multiracial 9 (6.8) 2 (6.9) 7 (6.9)
Other 4 (3.0) 1 (3.4) 3 (2.9)
Ethnicity (Hispanic/Latinx) 27 (20.3) 7 (24.1) 20 (19.6) x2 = .831 .660
Sexual Orientation x2 = .107 .452
Heterosexual 55 (41.4) 13 (44.8) 41 (41.4)
LGBTQ 76 (57.1) 16 (55.2) 58 (58.6)
Education x2 = .048 .501
High School or Less 52 (39.1) 11 (37.9) 41 (40.2)
Beyond High School 81 (60.9) 18 (62.1) 61 (59.8)
Viral Suppression x2 = 10.40 .008*
Suppressed 126 (94.7) 24 (82.7) 100 (98.0)
Unsuppressed 5 (3.8) 4 (13.8) 1 (.98)
Housing Status x2 = 14.37 <.001*
Stable 97 (72.9) 13 (52.0) 83 (86.5)
Unstable 26 (19.5) 12 (48.0) 13 (13.5)
Health Insurance Status x2 = .59 .601
Insured 124 (93.2) 28 (100.0) 95 (97.9)
Uninsured 3 (2.3) 0 (0) 2 (2.0)
Patient/Provider Characteristics
Patient/Provider Relationship 24.5 (5.2) 23.6 (5.3) 24.9 (5.2) t = 1.152 .252
HIV Care Provider:
Discussed Mental Health Care Needs 99 (74.4) 22 (75.9) 76 (76.0) x2 = .00 .582
Offered to Help Find Mental Health Care 82 (61.7) 24 (82.8) 57 (58.2) x2 = 5.86 .012*
*

Significant at p < .05

Mental Health Symptoms

The majority of the sample (76.7%) reported enough symptoms and severity on the PROMIS General Scale to warrant follow up with at least one of the PROMIS subscales. The following proportions of the total sample of 133 participants met criteria for moderate-to-severe symptoms: depression 49.6%, anxiety 33.1%, anger 22.6%, and sleep disturbance 34.6%. Over half of the total sample (54.9%) reported moderate-to-severe symptoms on at least one of the subscales.

In initial analyses, participants who were not able to receive needed mental health care in the past 12 months, compared to those who did, reported significantly more mental health symptoms on the PROMIS General scale and most subscales, including depression, anxiety, sleep disturbances, and psychosis (Table 2). Additionally, participants who did not receive mental health care also were significantly more likely to meet criteria for moderate to severe symptoms on the depression (82.8% vs. 40.6%), anxiety (58.6% vs. 25.5%), sleep disturbances (65.5% vs. 25.7%), and anger (41.4% vs. 17.6%) subscales (Table 2).

Table 2.

Participant Mental Health Symptoms and Substance Use by Ability to Receive Needed Mental Health Care in the Past 12 Months

Total Sample
(N = 133)
N (%) / M (SD)
During the past 12 months, was there a time
when you needed mental health care but could
not get it?
Test
Statistic
p
Yes
(n = 29)
N (%) / M (SD)
No
(n = 102)
N (%) / M (SD)
Mental Health Symptoms (PROMIS)
Scores
General 17.5 (14.7) 29.3 (15.3) 14.1 (12.9) t = 5.289 <.001*
Depression 21.7 (8.6) 26.9 (7.8) 19.4 (8.1) t = 3.868 <.001*
Anxiety 12.8 (6.9) 15.4 (6.5) 11.5 (6.9) t =2.466 .016*
Sleep Disturbances 21.5 (8.4) 26.1 (7.7) 19.4 (7.9) t = 3.730 <.001*
Anger 11.4 (4.6) 11.7 (5.3) 11.4 (4.2) t = 0.269 .789
Psychosis 4.1 (3.7) 7.1 (3.1) 2.4 (3.0) t = 3.837 <.001*
Moderate to Severe Symptoms
Depression 66 (49.6) 24 (82.8) 41 (40.6) x2 = 16.02 <.001*
Anxiety 44 (33.1) 17 (58.6) 26 (25.5) x2 = 11.24 <.001*
Sleep Disturbances 30 (22.6) 19 (65.5) 26 (25.7) x2 = 15.75 <.001*
Anger 46 (34.6) 12 (41.4) 18 (17.6) x2 = 7.20 .009*
Substance Use (ASSIST)
Use in Past 3 Months
Tobacco 75 (56.4) 15 (83.3) 34 (54.0) x2 = 5.10 .078
Alcohol 44 (33.1) 17 (65.4) 57 (71.3) x2 = .320 .369
Cannabis 50 (37.6) 11 (50.0) 32 (47.1) x2 = .058 .501
Illicit Drugs 37 (27.8) 12 (41.4) 24 (23.5) x2 = 3.61 .051
Moderate-to-High-Risk Use
Tobacco 51 (38.3) 13 (44.8) 37 (36.6) x2 = .64 .278
Alcohol 23 (17.3) 8 (27.6) 14 (13.7) x2 = 3.10 .073
Cannabis 41 (30.8) 11 (37.9) 29 (28.4) x2 = .96 .224
Cocaine 20 (15.0) 9 (31.0) 10 (9.9) x2 = 8.06 .008*
Prescription Stimulants 9 (6.8) 3 (10.3) 6 (5.9) x2 = .70 .317
Methamphetamine 15 (11.3) 6 (20.7) 9 (8.9) x2 = 3.06 .083
Inhalants 12 (9.0) 3 (10.3) 9 (8.8) x2 = .06 .522
Sedatives 8 (6.0) 4 (13.8) 4 (3.9) x2 = 3.84 .072
Hallucinogens 4 (3.0) 2 (6.9) 2 (2.0) x2 = 1.86 .212
Street Opioids 12 (9.0) 8 (27.6) 4 (3.9) x2 = 15.20 <.001*
Prescription Opioids 10 (7.5) 5 (17.2) 5 (4.9) x2 = 4.88 .042*

ASSIST- Alcohol, Smoking, and Substance Involvement Screening Test

PROMIS- Patient Reported Outcome Measurement Information System

*

Significant at p < .05

Substance Use

A sizeable portion of the total sample reported substance use within the past three months, namely alcohol (56.4%), tobacco (37.6%), cannabis (33.1%), and illicit drugs (27.8%). Participants also reported moderate-to-high-risk patterns of substance use with 30.8% meeting this criterion regarding their cannabis use specifically (Table 2). Participants who did not receive needed mental health services had significantly higher rates of moderate-to-high risk use of cocaine, street opioids, and prescription opioids than Participants who did receive needed care. In keeping with this, there was a trend towards participants who were not able to receive needed mental health care having higher reported use of illicit drugs in the past three months (41.4% vs. 23.5%; Table 2).

Interpersonal and Structural Barriers

Participants who did not receive needed mental health care during the past 12 months were more likely to report experiencing more difficulties with both interpersonal and structural barriers to receiving mental health care as compared to those who received needed care (Table 3). The most frequently reported interpersonal barriers were participants’ fear of rejection because of HIV infection (55.2%), substance use (55.2%), and lack of knowledge of how to access mental health care (51.7%; Table 3). The most frequently reported structural barriers were housing instability (58.6%), lack of transportation (58.6%), mental health offices being too far away (20.7%), and being unable to afford the cost of mental health treatment (20.7%).

Table 3.

Interpersonal and Structural Barriers to Receiving Needed Mental Health Care in the Past 12 Months

Total Sample
(N = 133)
M (SD)
During the past 12 months, was there a
time when you needed mental health
care but could not get it?
Test
Statistic
p
Yes
(n = 29)
M (SD))
No
(n = 102)
M (SD)
Interpersonal Barriers
Interpersonal Barriers Scale 1.99 (2.64) 4.10 (3.14) 1.34 (2.04) t = −4.47 <.001*
Among those unable to receive needed mental health care:
Fear of Rejection Due to HIV Health Status 55.2%
Substance Use 55.2%
Did Not Know How to Access Mental Health Care 51.7%
Forgot About Getting Mental Health Care 48.3%
Did Not Think Mental Health Issues Were Serious 44.8%
Used Other Methods Instead 41.4%
Tobacco Use 37.9%
Afraid of Mental Health Treatment 37.9%
Lack of Belief in Mental Health Care 3.4%
Structural Barriers
Structural Barriers Scale .77 (1.23) 2.10 (1.80) .40 (.66) t = −5.0 <.001*
Among those unable to receive needed mental health care:
Lack of Stable Housing 58.6%
Lack of Transportation 58.6%
Mental Health Office Is Too Far Away 20.7%
Could Not Afford the Cost of Treatment 20.7%
Did Not Want to Spend the Money 13.8%
Insurance Did Not Cover Recommended Care 13.8%
Mental Health Office Is Not Open at Convenient Times 10.3%
Unable to Take Time Off from Work 10.3%
*

Significant at p < .05

Age, mental health symptoms (General PROMIS score), HIV provider offering to help find mental health care, interpersonal barriers scale score, and structural barriers scale score were entered into a logistic regression, and the model had an overall good fit (x2(1) = 32.37, p < .001). In the multivariable model, structural barriers were the only variable that significantly predicted participants being unable to receive needed mental health care in the past 12 months (Table 4). Interpersonal barriers were not a significant factor in the model.

Table 4.

Logistic Regression Examining Predictors of Not Receiving Needed Mental Health Care in the Past 12 Months

Variable B S.E. OR (Exp(B)) 95% CI p
Constant −2.19 1.40 .12 .119
Age −.04 .03 .96 .92 – 1.01 .120
General Mental Health Symptoms .03 .02 1.03 .99 – 1.08 .173
HIV Provider Offered to Help Find Mental Health Care 1.02 .75 2.76 .64 – 11.98 .175
Interpersonal Barriers .08 .13 1.08 .84 – 1.39 .560
Structural Barriers 1.17 .35 3.23 1.64 – 6.37 <.001*

CI-Confidence Interval

OR- Odds Ratio

*

Significant at p < .05

DISCUSSION

The results of this exploratory study among PWH receiving HIV care services through academic medical centers in Providence, RI and Boston, MA, suggest that the integration of connection to mental health services into HIV clinics can enhance access to mental health care, but structural barriers to accessing effective services remain for a sizeable proportion of PWH, which may not be being addressed by current interventions. In keeping with previous work demonstrating the high burden of behavioral health concerns among PWH(Cook et al., 2018; Hu et al., 2025; Lang et al., 2023), participants had notable rates of moderate-to-severe mental health symptoms and substance use. The majority of participants reported being able to receive needed mental health care services in the past 12 months and that their HIV care providers discussed their mental health needs and offered to assist with connection to care. Despite most participants being offered assistance with mental health care, a substantial number were unable to access care when they needed it. Among participants who were unable to access needed mental health care, notable interpersonal and structural barriers were reported, particularly fear of rejection because of HIV infection, substance use, unstable housing, and lack of transportation. These individuals were also younger, more likely to be offered help finding services by their HIV care provider, had lower rates of viral suppression, and had higher rates of mental health symptoms and symptom severity. When examining predictors of participants being unable to access needed mental health care, structural barriers emerged as a significant factor, even after considering age, overall mental health symptom burden, HIV providers’ assistance, and interpersonal barriers, including fear of rejection due to HIV infection. These results suggest that even among clinics that are identifying mental health concerns as well as providing access to services, structural barriers to fully accessing mental health care remain.

Prior literature indicates that adverse health outcomes can arise from the interactions between and clustering of multiple health conditions (e.g., HIV, depression), which are exacerbated by environmental factors (e.g., unstable housing, lack of social support, economic hardship).(Glynn et al., 2019; Perry et al., 2019; Singer et al., 2017) To help address these factors, P/B CFAR associated clinics actively include behavioral health screenings and referrals in the HIV care provided to thousands of PWH. Additionally, as reported by participants in this study, HIV care providers worked to build relationships and trust with their patients and discuss their mental health care needs during visits. However, our findings demonstrate that among a sample where the majority of participants were able to access needed mental health care and HIV clinics played an active role in connecting these individuals to care, structural barriers were significantly associated with a sizeable number of participants being still unable to access needed mental health care. This is aligned with prior work which has demonstrated that the effect sizes of psychosocial interventions tailored for PWH are small to moderate(Remien et al., 2019; van Luenen et al., 2018) and that the mental health care being offered to PWH might not be having the desired efficacy regarding accessing and engaging in care. For example, standard mental health treatment may not necessarily be addressing more systemic issues, such as financial barriers, which have been shown to impede care engagement and access for patients with HIV and/or other medical comorbidities,(Horberg et al., 2024; Robbins et al., 2022) nor be tailored for navigating challenges specific to PWH (e.g., making time for multiple provider visits, affording medications for multiple comorbidities). As this was an exploratory analysis, causal relationships cannot be drawn, but these findings suggest the need for addressing multidimensional barriers among PWH.(Dergham et al., 2026; Horberg et al., 2024; Perry et al., 2019)

Our results demonstrate that even though integrating mental health screenings and referrals into HIV care clinics can help many PWH, some patients continue to struggle to access needed services due to structural barriers. Additional interventions to address these barriers are needed. The guidelines of the HIV Medicine Association and Infectious Diseases Society of America indicate that an important part of treatment is to assess social needs such as access to housing, food, and transportation and the impact of an HIV diagnosis on social needs.(Horberg et al., 2024) In keeping with the results of this study, these needs are associated with challenges in accessing needed mental health care. Co-location of mental health, case management, and substance use services with the HIV clinic can address some of these factors and improve access. Unfortunately, co-location does not automatically result in true team collaboration. The full benefit of integrated care is often not achieved because care remains siloed due to time and financial pressures that restrict direct collaboration. Telehealth services have been shown to enhance access to care(Sheinfil et al., 2026) and the options in its modality (e.g., phone or video calls) make health services accessible to individuals with limited technological resources, reduce time away from work, and eliminate the need for transportation to appointments. Also, community-based programs which provide care in non-clinical settings and outside of typical business hours, such as places of worship or community centers, can improve access to care for PWH.(Berkley-Patton et al., 2026; Hickey et al., 2022; Horberg et al., 2024) Such programs require support and collaboration with HIV clinics. Ultimately partnerships between clinics and community agencies can broaden and strengthen their missions and improve lives of PWH. Of course, funding and resources to implement care outside of traditional insurance reimbursement structures and to allow for increased time and support from providers and staff, remains a challenge.

This study has several limitations. All participants were receiving care through academic medical centers in Boston, MA and Providence, RI. Therefore, our findings should be interpreted within the context of two academic HIV clinics in the northeastern United States and may not be generalizable to other clinical or geographic settings. However, they may help inform the development of contextually tailored strategies to improve access to mental health care for PWH. Since participants were recruited from HIV clinic waiting areas, our sample may overrepresent those engaged in healthcare as well as those interested in participating in research and able to complete all study measures. Small sample size is a limitation with less ability to discern influence of multiple factors simultaneously. Furthermore, this study was cross-sectional in nature and, thus, causal conclusions cannot be drawn from the data. Additionally, while there were no gender differences between those who were unable versus able to receive needed mental health care, males did comprise the majority of our sample. This is likely in keeping with national data indicating that greater proportions of women living with HIV reside in the southern United States rather than in the Northeast and that males account for 80% of new HIV diagnoses in the United States.(Adimora et al., 2021; Force et al., 2023) Nevertheless, consideration is needed regarding gender balance in recruitment for future investigations within this clinical population. Despite these limitations, this exploratory study highlights the continuing burden of mental health symptoms among PWH and suggests that integrating connections to mental health services in HIV clinics can be helpful and beneficial for the majority of PWH, but gaps remain in connecting PWH facing significant structural barriers, including housing instability, lack of transportation, and difficulties reaching affordable treatment. Future work could focus on the development of effective interventions that address the structural barriers for PWH with mental health issues.

CONCLUSIONS

Despite the integration of behavioral health screenings and mental health referrals into HIV clinics in Providence and Boston, PWH who continue to experience a higher burden of structural barriers may be unable to access needed mental health care. Future work should focus on the development of effective interventions that address the structural barriers for PWH with mental health issues.

FUNDING STATEMENT

This research was made possible by funding and support from the Providence/Boston Center for AIDS Research (P30 AI 042853), National Institute of Mental Health (T32MH078788 & K23MH124539), National Institute on Drug Abuse (K12 DA000357), and the National Institute of Dental and Craniofacial Research (R56DE032873). The content is solely the responsibility of the authors and does not necessarily represent the official views or policies of these funding institutions.

ABBREVIATIONS

ASSIST

Alcohol, Smoking, and Substance Involvement Screening Test

CI

Confidence Interval

CBT

Cognitive Behavioral Therapy

MI

Motivational Interviewing

OR

Odds Ratio

P/B CFAR

Providence/Boston Center for AIDS Research

PROMIS

Patient Reported Outcome Measurement Information System

PWH

People with HIV

Footnotes

DISCLOSURE STATEMENT

The authors report there are no competing interests to declare.

DECLARATION OF GENERATIVE AI USE

The authors report that generative AI was not used in their research or preparation of this manuscript.

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