“I Just Need Guidance Through This Maze I’m Going Through”: Addressing Unmet Basic and Mental Health Needs to Facilitate Engagement in HIV Prevention Services in the Context of Stimulant Use

Abstract

There is a global syndemic of HIV, mental health challenges, substance use, and structural barriers. Critical to local HIV prevention efforts is understanding this syndemic in the context of rising stimulant use to inform intervention development. Adhering to the EPIS model, we conducted 32 in-depth individual qualitative interviews with people who use stimulants and have unmet structural needs to (1) identify barriers/facilitators of HIV prevention and (2) get feedback on evidence-based intervention content (e.g., emotion- and problem-focused coping skills) to address identified barriers. Thematic content analysis was applied. The sample had a mean age of 48 years (standard deviation = 10.8), with 46.9% identifying as men, 62.5% as White, and 50.0% as having ≤high school diploma/GED (general educational development). Multi-level barriers/facilitators of HIV prevention included knowledge, motivation (individual), provider relationships (interpersonal), access, and cost (institutional/structural). Skills to cope with psychosocial distress and problem-solve barriers to getting social services were perceived to be helpful. A psycho-behavioral intervention would best be implemented as part of syndemic-focused programming that also includes contingency management for HIV prevention behaviors and stimulant use, social activities not centered on drug use, and case management. This study advances HIV prevention by informing psycho-behavioral intervention development that is person-centered and focused on sustainable implementation.

Introduction

There is a global syndemic that includes HIV, other sexually transmitted infections, mental health challenges, and substance use.^1–6 The overall prevalence of depression alone among people vulnerable to HIV is estimated to be 35%—three times higher than that of the general population.⁷ Mood, anxiety, and psychotic disorders are also often comorbid with alcohol and substance use disorders, likely due to shared neurobiologically based etiology.⁸ Drug use can then lead to behaviors (e.g., sharing injection needles or condomless sex) that can increase HIV transmission risk.⁹

HIV, mental health, and stimulant use perpetuate one another among some of the people most vulnerable to HIV in the Ending the HIV Epidemic (EHE) priority area of Suffolk County in Massachusetts. Combined with consistent cocaine and crack cocaine use, there has been a recent surge in methamphetamine use,¹⁰ including injection use in Massachusetts.¹¹ The number of stimulant-related deaths increased 10.3% from 2018 to 2019, 22.5% from 2019 to 2020, and 20.5% from 2020 to 2021.¹² Stimulant use has also been shown to be strongly associated with greater HIV transmission risk¹³ and mental health challenges.¹⁴ Further, separate substance use profiles have been shown to be differentially associated with HIV-related outcomes, highlighting the importance of focusing on the unique risks of different substances, including stimulants only.¹⁵ Thus, it is critical for local HIV prevention efforts to understand and intervene on the negative impact of stimulant use if we are ever to meet the Suffolk County EHE goal to reduce new HIV infections by 90% by 2030.¹⁶

Improvements to syndemic-focused, integrative interventions are needed to reduce HIV disparities.¹ Efforts toward building integrative interventions that target HIV prevention, mental health, and substance use have been primarily psychological interventions designed for men who have sex with men (MSM). Only modest success has been shown to date. For example, “Effective Skills to Empower Effective Men—ESTEEM” is a transdiagnostic, cognitive behavioral therapy program for MSM who report recent condomless sex and psychological distress. ESTEEM has led to reductions in condomless sex, depression, and alcohol use when compared to an inactive control,¹⁷ but only marginal benefits when compared to affirming community-based counseling.¹⁸ Some early pilot work is ongoing to improve integrative interventions by way of engaging community stakeholders and making use of technological advancements (e.g., mobile delivery).¹⁹ It remains to be seen if such innovations are ultimately effective for HIV prevention.

Unmet basic needs, such as impoverishment, food insecurity, houselessness, or lack of health insurance, exacerbate HIV, mental health, and substance use vulnerabilities.^1–3 Indeed, HIV disparities are profound among Black and Hispanic people in Massachusetts (MA), and are attributable to social and structural factors (determinants of health).²⁰ For example, Black and Hispanic individuals have poverty rates more than two times higher than those of Asian and non-Hispanic White individuals due to deeply rooted structural racism in housing, education, and employment systems.²¹ Even in MA with near-universal health care and drug assistance programs,²² unmet basic needs continue to interfere with pre-exposure prophylaxis (PrEP) use—the leading innovation in HIV prevention.^23–25 Thus, interventions to address locally relevant structural barriers “upstream” of HIV prevention engagement are critically needed for people who are using stimulants.

One strategy to help people overcome structural barriers to HIV prevention that balances innovation with feasibility is to focus on improving linkage to social service programs. Indeed, state and local government social service programs, such as universal basic income programs, health care initiatives (i.e., Medicare and Medicaid), food and nutritional assistance programs, and affordable housing policies exist in MA; however, people may benefit from learning and practicing skills that could help to navigate complex and often inefficient government systems to access these services. It is also highly plausible that skills could generalize to also help people to connect to behavioral health treatment to reduce psychosocial distress and substance use.

Adhering to the exploration stage of the EPIS implementation science model (exploration, adoption/preparation, implementation, and sustainment),^26,27 this study aimed to qualitatively identify critical barriers to accessing HIV prevention services for people who use stimulants and have unmet basic needs and opinions of intervention skills that would equip them to access services and resources to address their needs. We hypothesized that unmet basic and psychosocial needs would be identified as primary barriers to engagement in HIV prevention, consistent with previous work focused on HIV prevention and stimulant use²⁸ in a population also living with critical structural disadvantages. We also intended to extend prior findings by getting participant feedback on the potential fit of evidence-based intervention skills to help them overcome these and other barriers to ultimately facilitate engagement in HIV prevention. Thus, the present study begins a line of research focused on developing an integrative, but also pragmatic, skills-based intervention to facilitate engagement with community social services and local (e.g., housing and sustenance) resources, as well as referrals for continued case management or behavioral health treatment. By empowering people to meet basic and mental health needs, it will ultimately increase HIV prevention engagement and reduce HIV disparities (Fig. 1).

FIG. 1.

Adapted conceptual framework of social determinants of health (blue) and proposed intervention components (green).

Methods

Recruitment

All procedures were approved by the Fenway Health Institutional Review Board. Participants were recruited via in-person referrals to the study from community-based organizations, including those serving only women and gender expansive people. Participants were also recruited via patient portal messaging in Fenway Health’s electronic medical record system. In addition, study flyers and business cards that contained a brief overview of the study, compensation, and contact information were posted at Fenway Health locations and distributed at community events and partner organizations; these flyers were also posted online on the Fenway Health website and its social media pages. Participants who called the contact number from these recruitment materials would connect with the research team to undergo eligibility screening and schedule appointments. To meet the significant public health need for HIV prevention specifically among men and transgender women who have sex with men, who account for 44%% of all new HIV infections in MA,²⁹ we selectively sampled for people who identified as a sexual and/or gender minority.

Data collection

Once a potential participant expressed interest in the study, they completed a brief phone screen to determine if eligibility criteria were met. Eligibility criteria included (1) being 18 years of age or older; (2) using stimulants at least once in the past year; (3) indicating one or more unmet basic needs in the past year, including not having a job, housing, health insurance, or enough money or food; and (4) comfort with the English language. There were purposely no eligibility criteria related to HIV risk due to the well-established associations between stimulant use and HIV risk behaviors (inclusive of injection and condomless sex).⁹ If criteria were met, potential participants were scheduled to complete a virtual research visit. During this visit, participants completed the informed consent process, enrolled in the study, and completed a self-report sociodemographic questionnaire (e.g., age, race/ethnicity, level of education, sexual orientation, and gender identity; see Table 1) and a qualitative interview.

Table 1.

Participant Demographics

Sociodemographic identifier	n
Age (mean, SD)	48.1 (10.8)
Racea
American Indian or Alaska Native	2
Asian	1
Black or African American	6
White	21
Other	7
Refused	1
Ethnicity
Hispanic/Latino	4
Gender identity
Cisgender man	15
Cisgender woman	13
Transgender man	1
Transgender woman	1
Nonbinary/Other	2
Sexual orientation
Straight	18
Gay	2
Bisexual	8
Pansexual	2
Other	2
Highest level of education
Less than high school	6
High school/GED	10
Vocational training	1
Some college	10
College degree or higher	3
Income
$0–9999	17
$10,000–24,999	5
$25,000–75,000	4
$75,000 or greater	5
Stimulant use
Daily/Almost daily use	12
Food insecurityb	22
Unstable housing	26

Sample consisted of 32 participants. Sums may not add to 32 due to missing data.

^aPeople could identify as more than one race.

^bFood insecurity was assessed by endorsement of running out of food and not being able to buy more.

SD, standard deviation; GED, general educational development.

Qualitative interview guide

A semi-structured interview guide was created to facilitate qualitative interviews. The guide was structured such that participants were asked open-ended questions with more targeted follow-up prompts as needed. Participants were also presented with possible evidence-based intervention content with a detailed description of possible skills to ensure understanding. The proposed intervention skills included both problem-solving and emotion-focused coping strategies. After each section, participants were asked open-ended questions related to their opinions on the appropriateness and relevance to people who use stimulants and have unmet basic needs, and their recommendations for improvement. Sample questions include: What is your overall opinion about this intervention skill? What concerns do you have about the intervention skill? How would the intervention skill be applicable to people who use stimulants? What improvements could be made?

Qualitative coding and analysis

Transcripts were read and discussed as a team to inform the development of a coding scheme, which was used to organize data and facilitate the identification of themes. Two coders (J.S. and S.I.) in collaboration with the principal investigator and lead author (J.D.F.), engaged in an iterative, structured, and consensus-driven process, which applied a flexible, inductive, and deductive approach to the generation of codes.^30,31 Deductive codes were derived from a priori interview guide categories, and inductive codes were derived from the data. The two coders independently read two transcripts and then met as a team to discuss and refine agreed-upon codes and their respective definitions. The codebook was then finalized in the double-coding process. Six total interviews (~30%) were then double-coded by the two coders, who compared their coding to ensure coding reliability with a kappa ≥0.80 and resolved any discrepancies through discussion among the coders and lead author by consensus,^32,33 producing a final set of codes based on multiple researchers’ input. After coding was completed, data within and across codes were reviewed by the lead author and discussed with senior authors (A.W.B. and K.H.M.) to identify themes and subthemes related to barriers and facilitators of HIV prevention and feedback on evidence-based interventions, aligned with the methods of thematic analysis.³¹ Data reduction methods were employed to extract the overarching narrative from the most pertinent data.³⁴ Themes were summarized for each content area and organized within Health Behavior Change Models for HIV Prevention that recognize that barriers and facilitators occur at the individual, interpersonal, institutional, and structural levels.³⁵

Synthesized member checking

Prior to in-depth qualitative coding, the transcripts were reviewed in real time for overarching themes, consistent with rapid qualitative analysis to allow for synthesized member checking.³⁶ Specifically, participants who engaged in the in-depth qualitative interviews were recontacted. Each participant was presented with a summary of the primary qualitative findings (i.e., data table), allowing them the opportunity to engage with and add to interpreted data, consistent with synthesized member checking.^37,38 This step ensured a lateral, partnered approach to the data analysis and interpretation, which focused on equitably counting all partners’ expertise. Member checking also ensured the identified needs and intervention preferences were congruent with the lived experience of the target population—that is, people who use stimulants and have unmet basic needs.

Results

Overall, 32 qualitative interviews were conducted, 29 of which were of sufficient audio quality to be transcribed and analyzed. The three excluded audio files were not audible due to background noise, distance from the recording device, and/or poor connectivity.

Sample description

Participants ranged in age from 25 to 73 years, with a mean (m) age of 48.1 (standard deviation = ± 10.8). Most participants were men (46.9%), and 62.5% identified as White, 21.9% as other, 18.8% as Black/African American, and 18.8% as Hispanic/Latinx. Overall, 14 (44.0%) identified as a sexual minority and 4 (12.5%) identified as transgender or nonbinary. In terms of education, 37.5% reported having a high school diploma or GED. For health insurance, 75% utilized Mass Health/Medicaid. Most participants reported their primary income source as disability/supplemental security income (31.3%) or welfare (21.9%). Regarding past year substance use, 59.4% used alcohol, 56.3% used cocaine/crack cocaine, and 40.6% used methamphetamines. See Table 1 for full sample description.

Barriers and facilitators of engaging in HIV prevention

Overall, participants reported multi-level barriers and facilitators of HIV prevention that included individual, interpersonal, institutional, and structural levels.

Individual level.

On the individual level, knowledge of resources, motivation, and helpful ways of coping with psychosocial distress were critical to engaging in HIV prevention.

Knowledge of resources.

Participants reported on the importance of being knowledgeable of how to prevent HIV transmission and aware of resources that could help.

“People need to be aware of these services, and they might not know about it.”

—41-year-old, White, non-Hispanic, straight cis woman

“Honestly, probably just awareness because, again, I did not know that anyone but cis men was eligible for PrEP and stuff like that. I know I’m definitely not the only one.”

—25-year-old, White, Hispanic, queer cis woman

However, information was described as necessary but insufficient for successfully engaging in HIV prevention behaviors. For example, participants recognized that they needed to put forth effort and take action to make use of the information or resources available.

“Knowledge how to prevent it [helps], but it’s up to me to put it on practice. Sometimes it’s not happening.”

—53-year-old, unknown race, Hispanic, straight cis man

“There is a lot of help there if you just put forth the effort to take advantage of it”

—48-year-old, White, non-Hispanic, bisexual trans man

Motivation.

Participants also reported having low motivation to engage in HIV prevention behaviors. Motivation is often conceptualized as being a product of what is perceived as important and what people feel confident that they can achieve.³⁵ For many, HIV prevention did not rise to a level of importance to warrant action when balancing other needs related to their health, housing, and sustenance.

“[HIV] never came up …because I was always going in for something else for my heart or for pains and different things in my limbs, back, legs, arms, chest, head, things of that nature, so.”

—64-year-old, Black, non-Hispanic, straight cis man

“I think I was just so focused on housing and food insecurity that I couldn’t really think of anything else. Everything else just felt secondary.”

—25-year-old, White, Hispanic queer cis woman

“So we have to secure housing before we can do anything.”

—47-year-old, Black, non-Hispanic, bisexual cis man

This was especially true when participants reported apathy about self-care in response to experiences of discrimination and stigmatization.

“Well, I feel like if you’re not being treated as a human being or being taken care of as a person, everything falls to the wayside. And you just don’t care. You’re just like, “Whatever.” Because mentally, emotionally, if you’re not feeling good, you don’t care about anything else. You’re just like, ‘Okay. Whatever. I don’t need a condom.’”

—41-year-old, White, non-Hispanic, straight trans woman

Strongly linked to motivation, people also reported low behavioral self-efficacy and trouble following through on goals, often rooted in a feeling of being stuck in their circumstances and not able to act.

“Just doing what you’re supposed to do it. Just do it. That’s all I can say about that. Just set a goal, follow through with it.”

—46-year-old, White, non-Hispanic, bisexual cis man

“Right now, people like myself in my community, the people that I associate with are stuck in the window that we’re all stuck in. Not we’re all, but a lot of the people that I meet is, I guess,”

—47-year-old, Black, non-Hispanic, bisexual cis man

“Just being on the streets in general. You know what I mean? It’s like you’re stuck,basically.”

—48-year-old, White, non-Hispanic, bisexual trans man

“Because I’m always racing, thinking, “I got to do this, that, the other thing. Who’s that? Who’s that? Pa, pa, pa, pa, pa, pa, pa, pa.” And I can do all those. I really could. And I’ve done. Now that I’ve been stuck out in homelessness and drinking…”

—56-year-old, White, non-Hispanic, straight cis man

In contrast, when people were able to get their needs met by getting connected to services, some participants described how they could then begin to feel hopeful and focus on other changes.

“A couple of months ago, I would say I don’t care about anything if I live or I die, really. Really, I don’t care if I live. I was at war. Because I was in so much—I don’t know. I was facing losing my house, going to jail again for something that I [did] not do. These people, they’ve helped me to get in contact with people to help me. I went through those things, and I fixed it. Right now, I feel more hopeful, a little more hopeful.”

—53-year-old, unknown race, Hispanic, straight cis man

Unhelpful ways of coping.

While many reported on how mental health symptoms are a barrier to engaging in HIV prevention, they also reported on how unhelpful ways of coping with the symptoms and related distress also made it challenging. The first common unhelpful way of coping with distress was avoidance of stressors, which then led to inaction.

“I just stopped doing it. I keep putting things off. I’m trying to be done with that. So, like I said, I got to start putting things off and get tested and see what’s going on. The longer you wait, the worse things are.”

—60-year-old, White, non-Hispanic, straight cis man

“Because of being depressed, I procrastinate terribly. And I haven’t updated my insurance for six-plus years now, and all it takes is a phone call. I have not set up an appointment for a medical case manager, which I desperately need. I missed my psychiatrist appointment. I didn’t reschedule it still.”

—35-year-old, Asian, non-Hispanic, gay cis man

The second common unhelpful way of coping identified by participants was reacting to situations without stopping to weigh alternative ways of responding or short-term versus long-term consequences of choices. This was described as then leading to not prioritizing engaging in HIV prevention, or other care.

“Well, because if I’m not on [bipolar] medication, I’m making more impulsive decisions. And if I’m depressed, I’m just less cautious, I guess, so like the impulsive decisions.”

—34-year-old, multi-racial, non-Hispanic, bisexual cis woman

“It’s when sometimes you’re in a situation that your mind is so cloudy that you don’t realize in the moment, but when it hits you, it’s too late. You did what you did, then you have to follow up.”

—53-year-old Hispanic unknown race straight cis man

Interpersonal/Community.

On the interpersonal/community level, provider relationships were central to HIV prevention engagement, while others also reported how they were able to get support from family, friends, and self-help groups.

Provider relationships.

Overall, the relationship between person and provider was a critical factor in whether someone engaged in HIV prevention services. For example, if providers were disrespectful, this was stigmatizing to the person, which could lead to disengagement from care. Further, providers were described as not listening to their needs and thereby making inaccurate assumptions that all health concerns were only related to their substance use.

“They think they’re better and stuff. I like it here [syringe exchange program co-located with medical care]. They know how to a treat the homeless people. They’re just nicer.”

—62-year-old, White, non-Hispanic, bisexual cis man

“Just having issues with doctors who don’t want to help people because they think you’re a drug addict, basically.”

—34-year-old, White, Hispanic, straight cis woman

In contrast, if providers were caring, respectful, and compassionate, patients felt important and were more likely to come back for care. Some described providers as having a “passion” for helping people with substance use disorders, and it helped when providers were welcoming and treated their patients like family.

“Just that they were very caring and understanding, I guess, compassionate, I would say. And I’ve been to emergency rooms when I had pneumonia last year, and I told them that I shot drugs and they just seemed like they really didn’t give a shit. But it seems like when they work around people like me all the time, then they’re more compassionate.”

—48-year-old, White, non-Hispanic, straight cis man

Other people also described an intangible connection to certain providers that allowed them to feel safe and cared for during their appointments. The patient–provider relationship was then associated with more follow-through with behavioral changes.

“Usually, I end up leaving because I don’t feel connected in a way that I want to feel connected with the provider. Right now, I love my primary care provider.”

—41-year-old, White, non-Hispanic straight cis woman

“It’s beautiful having you guys come right in here and being able to work with everybody together. Feels like, “I just didn’t go to the doctor’s office. I got so much more done while I was at this place.” And that, I feel like, has been a major change for me in my life.”

—43-year-old, White, non-Hispanic, straight cis man

Social networks and support.

In addition to provider relationships, participants also reported on how other means of obtaining social support were helpful for engaging in HIV prevention services due to feeling a sense of belonging and connection.

“It seems like the [self-help] support groups, they always boast about their experiences or want to show other people up. Around places like this, people seem to genuinely care a little more about others.”

—48-year-old, White, non-Hispanic, straight cis man

“My friend, my mom, and honestly, since I got here, there’s a lot of support here.”

—34-year-old, multi-racial, non-Hispanic, bisexual cis woman

Notably, not everyone expressed a positive opinion of self-help groups.

Institutional/Health system.

On the institutional/health system level, access has the greatest influence on engaging in HIV prevention services. Notably, participants benefitted when health centers offered different resources all in one place, or different types of care were co-located.

“Oh, you get everything, food, clothes. You get PrEP drugs. You can get condoms. You can get needles, any kind you want. You can get snip kits. You can get all different kinds of pipes. You can get everything that you need to stay safe and be able to use if that’s what you do.”

—46-year-old, White, non-Hispanic, bisexual cis woman

“They got the resources to help too. They got contact with all the entities. If they don’t have it, they go find them for you.”

—53-year-old, unknown race, Hispanic, straight cis man

Participants also reported that it was helpful when clinic locations were reachable via public transportation and open for extended hours.

“Maybe put the [inaudible] open on the weekends…There are so many people that runout of stuff over the weekends and they use dirty needles.”

—48-old, White, non-Hispanic, bisexual trans man

Structural.

Structural barriers included challenges with insurance and relatedly cost of prescriptions. For example, some people noted how insurance coverage and its acceptance at medical offices could change with no notice, making it hard to engage in care. Further, changes in insurance also led to variability in copays, sometimes making medications inaccessible.

“Just with the insurance, I’ve waited months to just get an appointment because I lost my doctor or whatever. They moved or something. And then I get to a place, and then they told me they couldn’t help. So it’s like I have to go through the whole process again.”

—34-year-old, White, Hispanic, straight cis woman

“So you need the medication, but how are you going to pay for it,”

—50-year-old, unknown race, Hispanic, pansexual cis woman

“Well, I think my copay is like $10 to get tested. So, it used to be $30, so I wasn’t able to do it as frequently. But I found another place where it’s only $10. So that makes it a lot more accessible.”

—25-year-old, White, Hispanic queer cis woman

The other primary structural barrier described was transportation. Several participants noted how clinics accessible by public transportation were limited. Further, if transport was available, it required a high mental load and complex planning to be able to make it to appointments on time with the transport schedule. In contrast, mobile clinics were described as “helpful” for engaging in care, including HIV testing, because they removed transportation-related barriers.

“It’s basically just the transportation… transportation is only so many places. Only twothat I know of.”

—48-year-old, White, non-Hispanic, bisexual trans man

“… and then I’ll get another appointment, and I’ll ask, ‘Do you think you can make it like 1 o’clock?’ I’ll leave the BLC [community organization], get on the train, take it to math, get on the bus, take it 8:00 to 1:00, and 1 o’clock, I’m there. You know what I mean?”

—56-year-old, Black, non-Hispanic, straight cis woman

“And they have a drive-up van or whatever. They come every Thursday. That’s where I got tested for the HIV. They were pretty helpful and useful.”

—48-year-old, White, non-Hispanic, straight cis man

Feedback on evidence-based interventions

In response to open questions soliciting feedback on what could help address the identified barriers to HIV prevention and facilitate participation in care, several highlighted a need for syndemic-focused programming. For example, some expressed a preference for a “one-stop shop” service that could include independent or social activities (i.e., not centered on drug use), job training, and health services all together.

“Everything’s going to work if you have those things, if you have access to food and shelter and cash, if they can make a way that that can happen, that’s going to change anybody.”

—60-year-old, Black, non-Hispanic, straight cis man

In response to questions asking for feedback on the appropriateness and fit of evidence-based approaches, such as problem- and emotion-focused coping, participants agreed that psychological services integrated into such a program would benefit from a focus on goal-setting and problem-solving skills. Such skills would help to navigate current barriers that exist within the health care system. Some were able to offer potential solutions to barriers, including setting reminders (e.g., on phone). Others noted how these types of skills will only be helpful if people are willing to practice them.

“I have so many things I have to do right now. Trying to get housing. It’s just all kinds of dealing with Social Security. I went to Social Security like a week and a half ago last week. You can’t even walk in the office. You never do it online. So, I downloaded the app. I’m doing a lot of things every day. Like you know, I’m living in a shelter, so it makes it—it’s just your mind jumbled up. So, it’s okay. I just have to keep my composure and just try to do what I need to do. And that definitely is on my list, and it’s going to get done.”

—60-year-old, White, non-Hispanic, straight cis man

“But when you can lay it out in front of you, it’s a lot easier to be able to say, “Okay, I got to get up. I got to brush my teeth. I’m going to go into the shower.” Then I get my clothes on. Then I get my breakfast, and then I have a cup of coffee. You’re off to work. I get to work; I got to park the car. I got to get upstairs. I got to open my computer, this and that.”

—34-year-old, multi-racial, non-Hispanic, bisexual cis woman

Further, a focus on coping skills to help people not feel overwhelmed by emotions, which some participants described as leading them to give up. When prompted on what is or could be helpful for coping, people identified deep breathing and meditation, prioritizing self-care and achievement-oriented tasks, kind self-talk, giving back to others, tolerating urges (e.g., think before you speak), and social support.

“Because I wouldn’t have been able to do it on my own without being frustrated. You can probably imagine just breaking down, collapse, and saying, ‘Forget it.’”

—51-year-old, Black, non-Hispanic, straight cis woman

“Following a schedule, being awake for enough time, being in a stable state of mind, being motivated, pretty serious concerns in almost every day.”

—43-year-old, White, non-Hispanic, straight cis man

“I need to keep my sobriety. And I need a place to live. Stuff like that. I just need guidance through this maze that I’m going through.”

—60-year-old, White, non-Hispanic, straight cis man

“I tell them like having breakdowns, things like that. And then I tell them sometimes when I have to rest because of my mental health, you know what I mean? In order to put myself to get through a day. Yeah. I can’t be overwhelmed for a long period of time, not just in one day, but I mean like days on end.”

—34-year-old, multi-racial, non-Hispanic, bisexual cis woman

Finally, consistent with the gold-standard treatment for methamphetamines,³⁹ several participants indicated that incentives for engaging in HIV preventive behaviors, like testing, had been helpful in the past and would therefore likely continue to be helpful.

“People love gift cards. Yeah. Yeah. They come in handy, man. They do, they come in handy when you don’t have no money. You have a $25 or $50 card is a blessing.”

—46-year-old, White, non-Hispanic, bisexual cis man

Discussion

Our findings confirmed multi-level barriers and facilitators of HIV prevention, consistent with extant literature,²⁸ in a Massachusetts-based sample of people who use stimulants and have unmet basic needs. On the individual level, while information, motivation, and behavioral self-efficacy were confirmed to be critical factors to engaging in HIV prevention behaviors,⁴⁰ unhelpful ways of coping were also identified as key barriers. Specifically, avoidance of stressors and emotional reactivity were identified as discordant with meeting health goals. Relatedly, we also reported on how the sample perceived emotion-focused coping skills to be helpful to getting their (e.g., basic) needs met. Taken together, these data point to the appropriateness and potential utility of personal skill building. Specifically, if people could have the opportunity to learn more effective strategies to manage stressors and feel less overwhelmed by distress, they may be able to prioritize long-term health goals over short-term urges to avoid or react. Current findings also confirm that interpersonal, institutional, and structural level barriers also need to be addressed via improvements in social support programming to ultimately prevent new HIV infections among people who use stimulants and have unmet basic needs.

With respect to the interpersonal level, participants indicated that providers, as well as family and friends, play an important supportive role in meeting their health goals. Feelings of connectedness also related to participants’ sense of self-worth and deservingness of prioritizing their health. Therefore, intervention development needs to address the need both for social support, which might include investment in creating social activities not centered on drug use at the institutional level, as well as skills to improve people’s self-concept at the individual level. For example, our group has established the feasibility and acceptability of a transdiagnostic intervention that leverages elements of mindfulness, cognitive reappraisal, and behavioral goal setting that addresses the psychological and behavioral consequences of internalized stigma and shame as barriers to HIV self-care behaviors among people with HIV and who use substances (publication under review),³¹ which could be adapted to be status neutral and address HIV prevention behaviors. The current findings also have important implications with respect to intervention delivery and necessary institutional-level changes, such that providers will need to be trained in compassionate and nonassumptive care for this population for successful implementation. This kind of provider training could include a focus on building warmth and unconditional positive regard through developing listening skills and expressing empathy, consistent with established motivational interviewing techniques.³⁹

On the institutional and structural levels, access and cost continue to be identified as significant barriers to HIV prevention that warrant innovative solutions. To directly address the structural deficits identified in this and previous studies, it is necessary to continue to invest and build resources in the community focused on improving access to health care. Based on the current data, such investments would benefit from a focus on colocation or mobile services, or subsidizing transportation to care settings to increase access and uptake. Until greater health care access is achieved, our work also suggests that a more immediate need is to support people in building their problem-solving capacity to help them navigate and overcome these systemic barriers, which is largely consistent with established problem-solving interventions to increase PrEP adherence among HIV-negative MSM.³² Another structural solution that directly targets cost as a barrier is contingency management, which could incentivize people to get HIV tested and is already supported in the literature as an evidence-based treatment for reductions and abstinence from methamphetamine use among people who are ready to reduce or stop use.⁴¹

These study findings and interpretations need to be considered in the context of sample characteristics and methodological limitations. First, our study was not exclusively focused on PrEP as a method of HIV prevention and included questions on HIV testing recommended for all adults with increased risk, including those using substances. Accordingly, while we did ask participants about their past year substance use and their experiences accessing HIV prevention methods, we did not collect complete data on indicators of HIV risk (such as injection drug use or high-risk sex) or PrEP eligibility, which means that while all participants met recommendations for HIV testing, only some participants may not have been eligible for PrEP.³³ Therefore, the finding that low motivation is a barrier to engagement may reflect a more realistic appraisal of low HIV risk that does not warrant action. Second, given the small sample size and recruitment from Massachusetts-based health centers and community partner organizations, study findings may not be generalizable outside of Massachusetts, particularly in lower-resourced settings. For example, problem-solving skills to overcome barriers to engage in social service, health care, and other programming will not be applicable in settings for which these services do not exist. However, we achieved a diverse sample with respect to sexual orientation and gender identity, which is reflective of HIV risk profiles in MA. Third, while participants were asked open-ended questions pertaining to feedback on proposed intervention strategies to not bias responses, it is possible that data on acceptability are skewed to appear more favorable. Further studies aiming to identify characteristics of an acceptable psycho-behavioral care intervention for people who use stimulants and have unmet basic needs could extend and replicate this work by recruiting people with indications for PrEP across differing geographic locations, which would also be a significant contribution to informing dissemination of evidence-based interventions for this population more broadly.

Our results have several important clinical implications. On the individual level, behavioral and mental health care to support people who use stimulants and have unmet basic needs could focus on emotion-focused coping and problem-solving skills, both of which would help prevent people from becoming overwhelmed and thereby be better able to meet long-term health goals. Specifically, consistent with mindfulness-based interventions, participants may benefit from learning distress tolerance skills (dialectical behavioral therapy), self-kindness (mindful self-compassion), and relaxation practices to improve coping.^34,42–45 On the program/clinic level, such skills may be offered in tandem with contingency management for HIV prevention behaviors and stimulant use, and case management to adequately address the structural barriers identified in this study. Indeed, this multi-pronged approach has been implemented in other Massachusetts-based programs focused on supporting people with unmet needs accessing HIV prevention or treatment.⁴⁶ It would be important to implement and evaluate such programs in other settings. These formative data helped to elucidate multi-level barriers and facilitators of HIV prevention behaviors among a particularly vulnerable group in the EHE priority area of Suffolk County, people who use stimulants with unmet basic needs. Current findings support the development of a psycho-behavioral intervention that is person-centered and focused on sustainable implementation. Specifically, one size will not fit all when it comes to developing an intervention to meet the population’s needs. Instead, a successful intervention for this population may need to be modular, offering a menu of options that address different multi-level factors, or a flexible intervention that has the capacity to address specific, individual needs. Based on participant feedback, this would best be implemented as part of syndemic-focused programming. This could take the form of a “one-stop shop” that includes behavioral health services, social activities (i.e., not centered on drug use), and case management all together. Critical next steps include developing and pilot testing the psycho-behavioral intervention to determine feasibility and acceptability, as well as studies focused on identifying determinants of implementation, including adoption, penetration, and sustainability.

Data Availability

The datasets generated and/or analyzed during the current study are not publicly available due to the sensitive and personal nature of the data but are available from the corresponding author upon reasonable request.