Intervention component acceptability (quantitative measure)
Acceptability of intervention components was assessed quantitatively by examining proportions who attended each component and rated it as ‘quite a bit’ to ‘very’ helpful (Table 2). For all components, proportions of attendees endorsing these levels of helpfulness were satisfactory, with approximately 70% or greater rating the component as ‘quite a bit’ to ‘very’ helpful.
Table 2. Acceptability of intervention components at the final follow-up assessment (among those who attended the component)
|
Component
|
% (N) reporting the component was quite a bit to very helpful
|
Component A: Motivational interviewing sessions
|
76.4 (146/191)
|
|
|
Component B: Pre-adherence skill building
|
68.3 (114/167)
|
|
|
Component C: Peer mentorship
|
77.8 (133/171)
|
|
|
Component D: Focused support groups
|
78.9 (138/175)
|
|
|
Component E: Navigation – short version
|
74.4 (145/195)
|
Component E: Navigation – long version
|
74.0 (148/200)
|
Intervention component feasibility (quantitative measure)
Feasibility was assessed quantitatively by evaluating proportions of participants attending intervention components to which they were assigned, and the extent to which participants remained engaged in the component, as appropriate (Table 3). Each component was attended at least once by 80% or more of assigned participants; in most cases, this proportion exceeded 90%. Component E (both short and long versions) had the highest level of attendance, with >95% of assigned participants attending at least one in-person meeting. Components A and C also had high attendance levels, with >90% of assigned participants attending at least one session. Components B and D were each attended at least once by 80% of assigned participants. Thus, intervention component feasibility was high.
Table 3. Feasibility: Attendance at assigned intervention components
(N=512)
|
Component
|
% attended or M(SD), (N attended/N assigned)
|
|
|
Core intervention session
|
|
Attended
|
97.9 (501/512)
|
|
|
A. Motivational Interviewing Sessions
|
|
Attended at least one session
|
95.0 (228/240)
|
|
|
B. Pre-adherence skill building
|
|
Attended at least one meeting
|
79.5 (194/244)
|
|
|
C. Peer mentorship
|
|
Attended at least one meeting
|
90.6 (211/233)
|
|
|
D. Focused support groups
|
|
Attended at least one group
|
79.5 (194/244)
|
Attended all six groups
|
51.2 (125/244)
|
Total groups attended
|
3.89 (2.49)
|
|
|
E. Navigation - long
|
|
At least one in-person contact
|
96.5 (249/258)
|
Total contacts (all modes)
|
6.10 (3.31)
|
|
|
E. Navigation - short
|
|
At least one in-person contact
|
96.9 (246/254)
|
Total contacts (all modes)
|
2.74 (2.76)
|
Qualitative sample: description
Table 4 presents sociodemographic and background characteristics describing participants in the qualitative study sample. The average age was 49 years, and a large majority (78%) were assigned male sex at birth. One-third (33%) identified as sexual and/or gender minorities. Most (76%) were African American or Black, and over half (52%) were not in stable housing. The average number of adverse childhood experiences was 4 (SD=3, range:0-14). Only 17% of participants were employed and, in the past year, nearly half (46%) had insufficient funds for necessities at least monthly, and most (85%) had sometimes or often experienced food insecurity. Nearly one-fifth (17%) had engaged in transactional sex during the past year. The average time since HIV diagnosis was 19 years (SD=7 years, range:3-30 years). Thus, participants, on average, were long-term HIV survivors. All participants had taken HIV medication in the past, with the longest duration of sustained use being 45 months (SD=63, range: 0-264). A moderate-to-high risk level of alcohol use was reported by approximately half of participants (54%); for cannabis use, this proportion was 61%, and for cocaine or crack use it was 63%. Most (78%) had engaged in treatment for substance use in the past. Thus, substance use at potentially hazardous levels was common in this sample. Most (87%) had never injected drugs; among those who had, half had done so in the past 3 months. Likely depression, anxiety, or PTSD was reported by 22%, 11%, and 35%, respectively. Two-fifths (40%) of participants showed evidence of suppressed HIV viral load at the 8- and/or 12-month follow-up assessment.
Table 4. Participant sociodemographic and background characteristics (N=46)
|
|
M (SD) or %
|
Age (range 23 – 62 years)
|
48.9 (8.74)
|
Sex assigned at birth
|
|
Female
|
21.7
|
Male
|
78.3
|
Sexual and/or gender minority status
|
32.6
|
Transgender gender identity, gender fluid, gender non-conforming
|
4.3
|
African American or Black (non-Latino/Hispanic)
|
76.1
|
Latino or Hispanic
|
21.7
|
Stable housing (has their own home or apartment, including funded by government programs or benefits)
|
47.8
|
Adverse Childhood Experiences (ACES-R) score (range 0-14)
|
3.56 (3.33)
|
Indications of low socioeconomic status and extreme poverty
|
|
Working full-time or part-time off-the-books or on-the-books
|
17.4
|
Ran out of funds for necessities monthly or more in the past year
|
45.7
|
Food insecurity often or sometimes in past year
|
84.8
|
Engaged in transactional sex – past year
|
17.4
|
HIV-related factors
|
|
Years since HIV diagnosis at enrollment (range 3.0 - 30.0 years)
|
18.6 (7.18)
|
Median [Q1, Q3]
|
18.5 [13.3, 24.0]
|
Took HIV medication in the past
|
100
|
Times stopped/started HIV medication in the past (range 0-100)
|
10.6 (17.8)
|
Longest duration of sustained HIV medication, in months (range 0-264)
|
45.0 (62.7)
|
Psychosocial risk and protective factors
|
|
Alcohol use at a moderate-to-high-risk level
|
54.3
|
Cannabis use at a moderate-to-high-risk level
|
60.9
|
Cocaine or crack use at a moderate-to-high-risk level
|
63.0
|
Use of other drugs (not including alcohol, cannabis, cocaine/crack) at a moderate-to-high-risk level
|
28.3
|
Never injected drugs
|
87.0
|
Injection drug use lifetime, but not in the past 3 months
|
6.5
|
Injection drug use – past 3 months
|
6.5
|
Participated in substance use treatment in the past
|
78.3
|
Likely depression
|
21.7
|
Likely anxiety
|
10.9
|
Likely PTSD
|
34.8
|
HIV viral load
|
|
HIV viral load level at enrollment (log10 transformed)
|
4.28 (0.970)
|
Suppressed HIV viral load at 8- and/or 12- month follow-up assessment
|
40.0
|
Overview of Results
Overall, participants reported that their engagement with the intervention components provided a unique physical and emotional space — which they reported was not commonly found in the other social service and health care settings they had experience with — within which they were able to explore aspects of their own thoughts and behaviors, as well as larger contextual factors. Moreover, they reported they had rarely, if ever, examined these thoughts, perspectives, and contextual factors in past service encounters. Moreover, the intervention components allowed for exploration of perspectives on to HIV management and its contextual influences, along with other concerns and challenges not directly related to their decisions or abilities to engage along the HIV care continuum. This flexibility in intervention content was seen as a vital aspect of the intervention components and of meeting participants’ needs. In the interview process, participants were asked to describe the ways in which they experienced each individual intervention component. We noted in ICM Paper 1 that participants commonly recalled the project activities in a holistic manner, and not necessarily always as distinct intervention components. Nonetheless, in many cases, participants did remember both concrete details and tangible benefits of specific intervention components and noted the effects components had in their lives, which often included effects on HIV care engagement or HIV medication adherence as well as on other vital aspects of their lives. We found the overall approach grounded in the ICM (nonjudgmental, dignity-enhancing, and autonomy-supportive) was an important aspect of all intervention components. We describe participants’ perspectives on and experiences with each intervention component in the sections that follow. We used gender-neutral pronouns (they/them/theirs) in the sections that follow because we did not know which pronoun series participants used to describe themselves. We also used pseudonyms and changed some identifying details to maintain participants’ confidentiality. As a reminder, the project’s field name was “Heart to Heart 2” and participants referred to the project using this name. In each section, we describe the structure and content of the intervention component, followed by the results from the qualitative analysis that pertain to that component.
Core intervention
Description of the core intervention. The sequence of intervention components delivered to participants for all of the 16 experimental conditions began with a core intervention, a single, brief (<60 mins) individual session that had two main goals. The first goal was to provide or reinforce basic health education on HIV management considered necessary for engagement in other components (e.g., the expected frequency of HIV care visits and HIV medication adherence patterns). The second was to introduce the participant to the study ethos grounded in the ICM to thereby begin to foster a constructive relationship between the study and the participant to support future engagement in components. Some examples of how the ICM informs the core intervention include an implicit assumption that not all AABL PLWH attend HIV care appointments and take HIV medication due to complex multi-level barriers. This aligns with structural salience (since it locates the “problem” of poor engagement along the HIV care continuum largely at structural, not individual, levels of influence) and is a de-stigmatizing stance. These elements of the core intervention are intended to build trust. Further, the stance that participants are experts on their own health, but that health education may be welcome, aligns with a strengths-based and dignity enhancing approach.
Derek was a cisgender, heterosexual Black man in their early 50’s, diagnosed with HIV 20 years ago, who came to the optimization trial with a number of serious service needs and also negative previous experiences with health care. They described their first experience with the intervention components, namely, the core session, as follows:
This is really my first study that I’ve ever done. So, I have listened to rumors that you go in, you sit there for a couple of minutes, get your money and you’re gone. So, I didn’t really think that I was going to get anything positive out of this. But from the first visit [the core intervention session], I was impressed with the ambiance of the place, and it kind of made me feel comfortable enough to open up and start considering what I need to do to get my life together. […] I wasn’t used to being treated well at that point. So I came in, you guys treated me, welcomed me, very welcoming environment. And it made me feel comfortable, and made me feel, because I had been, my whole life had been living a lie up until then. So I didn’t feel like I had to lie, you guys weren’t judging me. And you really weren’t pushing me to do anything. You guys kind of wanted to know what I wanted to do with my life. So after the first visit I started really thinking about that. Like what can I get out of this, and how can I get this to help me move forward.
Derek’s experience, therefore, highlights the importance of the underling approach guided by the ICM in introducing participants to the study ethos and stance, to thereby foster engagement in the core session and future intervention components. Overall, consistent with Derek’s experience, we found that the core session, structured as a conversation and communicating aspects of the ICM, served as a useful introduction to the spirit and ethos of the optimization trial and future components grounded in the ICM. Health education was a useful vehicle through which to begin to establish this relationship between the study and the participant.
Component A: Motivational interviewing sessions
Description of Component A: Component A was made up of four in-person, hour-long one-on-one sessions using the motivational interviewing approach, similar to the other components, as well as evidence-based motivational interviewing techniques. The goals of these motivational interviewing techniques were to foster motivation and readiness for behavior change by addressing barriers to HIV care continuum engagement, mainly health beliefs relevant to HIV care continuum engagement (e.g., outcome expectancies, self-efficacy, medical distrust, counter-narratives) and emotions (e.g., concerns/fears of HIV medication). In this component, interventionists maintained a non-judgmental stance and focused on uncovering and discussing culturally and structurally specific barriers to HIV care continuum engagement (e.g., medical distrust, fear, counter-narratives about the causes of and treatments for HIV), and incorporating participants’ own views on how to best manage their HIV care and medication. Using one or two culturally and structurally salient video narrative segments per session to highlight key issues (e.g., distrust, fear, counter-narratives, poverty, stigma), interventionists used motivational interviewing-specific behavior change techniques including helping participants articulate their values, developing discrepancies between values and behavior, and identifying goals, barriers to achieving those goals, and the participant’s own solutions as they related to engagement along the HIV care continuum. Some examples of how the ICM informs Component A include an explicit focus on specific barriers to HIV care continuum engagement that are common among AABL PLWH such as medical distrust, fear, and counter-narratives, which was intended to foster trust building, and cultural and structural salience. One example of structural salience in Component A is grounding the component in an understanding of past and current systemic racism, which contributes to medical distrust, fear, and counter-narratives. Further, the component incorporates participants’ own views on how to best manage HIV and medication without judgment, a form of autonomy support.
One prominent theme found in the analysis was that participants who engaged in Component A commonly reported that the sessions actively (and successfully) encouraged self-reflection, and that the sessions were notable insofar as they used an approach characterized as non-judgmental and non-coercive, consistent with the ICM. In particular, participants noted the sessions provided them ample opportunities to identify, explore, and examine self-determined goals, and to address behaviors that participants themselves considered being in need of change, in contrast to those the research project staff might identify as needing change. Moreover, participants stressed that at no point during their sessions did they feel stigmatized or pressured by project staff, regardless of the context. This, in turn, allowed participants to develop new skills, tools, and/or insights which played a role in their evaluating and making decisions about managing health and other aspects of their lives. Importantly, they highlighted that these types of experiences (self-determined goals, non-judgment) were largely absent in most other clinical and social service contexts in which they engaged.
Marcus was a Black, gay, cisgender man in their early 50’s, who was diagnosed with HIV when they were a teenager. At the time they enrolled in the study, Marcus was engaged in selling (or “diverting”) their HIV medication in part to provide funds to buy drugs. Their life was further complicated by legal problems, since they had declined to report to their parole officer some months prior and thus were in violation of the terms of their parole. Despite these larger contextual challenges, including pressure placed on them by corrupt pharmacies who sought to purchase their HIV medication bottles, Marcus was interested in evaluating the importance of HIV medication in their life. Marcus shared their experience:
The extreme honesty and their [the interventionist’s] ability to be 100 percent nonjudgmental because I can tell when somebody is being nonjudgmental because it's their job, but they don't wholeheartedly believe in what they're portraying. [...] There are times I even asked, "well, what is your opinion?" First response: "So what do you think it should be?" And that's good. […] It [Component A] [nonjudgmentally] follows up on people and guides people -- and it doesn't really guide people; it guides people to make their own decisions and to comfortably make them, which is fine.
Marcus continued:
First of all, a person's only gonna change when they're ready to change. But do I think [the study interventionist] was instrumental in my becoming ready to make a change? I think that's a hundred percent fact, because regardless to whether or not individuals may show it at the time conversations take place here, […] they're [the study interventionist] stuck in our mind. And they [the study interventionist] play out throughout the course of our travels when we run across an experience that we discussed here [in Component A]. I guess the best way to describe is it puts arrows in our quiver in case we ever need them.
The ICM draws attention to structural and systemic barriers to HIV management. Marcus’s life was complex, in part related to structural and systemic factors, and they had a number of inter-related goals. Marcus’s quotes underscored the intention of motivational interviewing as an approach that supports autonomy in order to build durable intrinsic motivation for behavior change while guiding participants toward their personal health goals, which in this case included stopping crack use, trying hard not to sell their HIV medication, reporting to their parole officer (after a period of declining to report), and serving time in jail for the parole violation. Thus, Component A was designed in part to attend to structural barriers to HIV care management, consistent with the ICM. Following Marcus’s lead in which goals to prioritize, rather than focusing on the study’s primary outcome, namely, HIV viral suppression, was further consistent with the ICM. Notably, after serving time for the parole violation, Marcus re-started HIV medication. Implicit in this set of findings is the importance of the individualized nature of Component A, consistent with the ICM; Marcus prioritized deciding how to manage the parole violation and reducing substance use, and motivational interviewing techniques (as well as harm reduction principles integral to the ICM) could be applied to these goals. These findings also underscore the importance of harm reduction in the ICM. Marcus, like many participants in the study, are faced with any number of behaviors that can result in harm to themselves and others (e.g., not taking HIV medications, violating parole), and harm reduction may have played a role in fostering movement toward positive change in Marcus’s case. At the same time, forces in the larger environment such as corrupt pharmacies who purchase HIV medication from PLWH remained a threat to their decision to take HIV medication with high levels of adherence.
Cecil, who identified as a Black, cisgender, heterosexual man in their late 50’s and who was diagnosed with HIV nearly 30 years ago described their experience in Component A:
I'm getting a better shot at looking at me. When I walk up into the door the mirrors come up and I get to see myself. Didn't actually like the person that I talked about. So I decided not to be that person anymore. […] Put it this way – I’m sitting up here talking, you’re my mirror. And sometimes, I might be missing something, and you might ask a question that I’d be missing, and I need to ask myself that question to help me get even a better focus on who I’m talking about. That’s me. […] Heart to Heart was my mirror. Heart to Heart was my mirror.
Cecil’s quote highlights the importance of self-reflection, which is certainly a critical aspect of the motivational interviewing approach and the ICM. But, motivational interviewing (and the ICM) also seek to strike a balance between fostering self-reflection and guiding participants toward change. And, for many, self-reflection was necessary, but not sufficient, for change. As Terrence, a Black, gay, cisgender man in their early 50’s who was diagnosed with HIV almost 20 years ago described the importance of being guided toward change in the larger context of the ICM, including autonomy support:
Again, I wasn't sharing my issues with anyone. So it was easier for me to walk around and tell myself that it was okay for me not to do those things because I didn't have anyone challenging me. So Heart to Heart kind of challenged me like that. So I needed to be challenged at that point because I was kind of on the fence on it [engaging in HIV care]. Like you know, I needed to get off the fence and put the footwork into rectifying the problem. Because it [not engaging in HIV care] was a problem.
Regarding Component A (motivational interviewing sessions), participants reflected on the importance of tapping into durable high-quality intrinsic motivation and self-reflection as mechanisms of behavior change in HIV decisions, and also stressed the importance of a non-judgmental and pressure-free environment in creating and supporting these behavior change mechanisms.
Component B: Pre-Adherence Skill Building
Description of Component B: Component B assisted participants in building skills and habits to better manage adherence to HIV medication (and sustain high levels of adherence) or, for those choosing not to take HIV medication at the time, to better manage other health-related behaviors and/or to build skills for future HIV medication adherence. The six-week intervention component comprised two in-person sessions (at week 1 and week 6), and weekly brief telephone meetings with an interventionist during which participants identified and worked to resolve barriers to adherence within their physical and social environments. During the initial session, interventionists and participants assessed readiness for and identified barriers to adherence, established links between adherence and daily activities to build habits, put visual reminder aids in place (e.g., pill boxes, alarms), identified sources of long-term support and reinforcement, and established plans to minimize lapses in the event of missed doses. Habits were one means of addressing the cognitive biases that reduce HIV medication adherence to thereby improve adherence by making it automatic with less cognitive effort [56]. Weekly follow-up sessions provided an opportunity to explore barriers to and/or facilitators of habit formation and adherence skills. In the final session, any steps toward success and progress made were reviewed, and future plans for adherence supports were made. Examples of how the component aligns with the ICM include that the component reflects the major practical and psychosocial barriers AABL PLWH experience to viral suppression such as lack of privacy in home setting, stigma, fear, which reflects structurally salience, and the need to circumvent the emotions inherent in taking HIV medications through automatic and less effortful processes such as habits.
We found participants who attended Component B (pre-adherence skill-building) discussed the degree to which introduction to the concept of habit formation, discussion of practical devices to manage adherence (such as pillboxes), and development of adherence-related skills played a role in their willingness and/or ability to become more adherent to HIV medication. Many discussed being provided with external memory aids such as daily or weekly pill boxes or alarms, building tangible skills which included developing habits and routines and developing strategies to keep track of medications while away from home, and learning to recognize the power of their own self-efficacy. For instance, many participants discussed the importance of a reminder technique such as setting an alarm or having a visual reminder to take HIV medication or achieve other health goals (e.g., taking medication when one’s favorite television show started or after morning prayers). Indeed, these reminders, aids such as pill boxes, and habits were commonly lacking among participants in this study.
Emmanuel, who identified as a Latino, bisexual, and gender-fluid person in their early 40s, who had been living with HIV for approximately 10 years, and who had struggled for most of those years with remaining in HIV care and adhering to HIV medication, explained:
[The interventionist] gave me a medical pillbox. She gave me the pillbox. Oh, yes. The pillbox is right on my table. The big blue one. I need the biggest one I can see. So I was so grateful and so appreciative that she gave it to me. That was when I got my medication, put it in the pillbox, and my alarm clock is right there. So when the alarm clock goes off, I get up, and I say, oh, it's time for me to take my medication. And I say my little prayers to God. I thank you for waking me up this morning. And I just take my medication.
Similarly, Derek, introduced above, added:
[The interventionist] helped me through that process too. She gave me a couple of pill [boxes]. One of them has a timer on it, so it goes off in the morning. So I’m very adherent to my medications now. And in terms of me again, I want to do it. She kind of really helped me to develop the skills that I needed to do that. Like I have a big pill cabinet in my bathroom now. So when I go in the bathroom in the morning, I can't forget to take my pills. There’s just like a big cabinet there. It’s just big. So it’s right there. So you kind of help me to develop the habit of making my pills visible for me so that I don’t forget. Because when I’m not feeling ill, it’s easy for me to keep my pills out of sight, out of mind. So that was a big issue for me. So now I’m very good in terms of that. I drive now also. So I have my pills in my car. I have them at home. Which is another thing that she told me, like keep your medication available where ever you are.
Participants also discussed a number of specific skills they implemented in their lives, particularly around habit formation, which they reported contributed to making their lives easier and that helped them to take their HIV medication more regularly, as well as attend to other health goals. TJ, a Black, cisgender, heterosexual man in their mid-50’s and diagnosed with HIV when they were in their mid-20’s, described the importance of their “command center:”
That's when she gave me the pill containers. […] She gave me two. I gave my mother one, because she really has an issue with taking her medication, and I just use the little round one with the seven days on it. I keep it at my bedside, which is my command center. So as soon as I wake up, I see them. Even if I don't take it right then, I get up and run in the shower and do whatever else I got to do. I normally go in there and take one before I leave the house, but if I do forget, once I get to the door it reminds me. So then I turn around – oops – and grab my pill bottle.
Relatedly, many participants expressed a sense of pride, accomplishment, and a belief in their ability to continue their newly formed HIV medication and other habits thanks to the skills built in this intervention component. Denise, a Black cisgender heterosexual woman in their mid-40’s, diagnosed with HIV over 10 years ago, described their experience in Component B:
[The interventionist] was just telling me how important it was to take my medicine. But that she wouldn't judge me. And that the only thing I feared [was] being judged. A couple times I became really saucy. And she just said, “I’m not judging you,” and [I] stopped. And that made me feel good. All of you all are real easy to talk to.
Thus, with respect to Component B (pre-adherence skill building), participants recalled discussing tangible, practical strategies for adherence in a nonjudgmental context, such as pillboxes, reminders, and habit formation, which they commonly found valuable with respect to improving daily adherence practices. Further, these strategies were explored in the context of their living environments and social networks, and strengths were highlighted, consistent with the ICM.
Component C: Peer mentorship
Description of Component C: Component C entailed peer mentoring by PLWH who were demographically similar and consistently engaged in HIV care with high medication adherence (that is, they were “successful” peers). Thus, peer mentors were long-term HIV survivors, as were most participants. Through informal counseling, peer mentors served as role models, providing practical tips and at the same time implicitly challenging negative peer norms about the lack of engagement along the HIV care continuum among AABL PLWH. They were also an important source of social support, helping to combat stigma and other barriers to care and HIV medication. One pillar of the ICM is self-determination theory, which highlights autonomy, competence, and relatedness as fundamental human needs. Thus, examples of how the component aligns with the ICM include the relationship between the peer mentor and participants (to foster relatedness). Further, peer mentors have credibility and can build trust and reduce stigma. Because the component is grounded in the expertise of a “successful” peer mentor, the component is strengths-based. Last, peer mentors are typically culturally competent, and structural competence comes naturally to them given their lived experiences.
We found participants who received the peer mentorship component consistently reported experiencing the peer mentor as relatable and recalled what they described as a genuine peer connection, underscoring the importance of relatedness in HIV management. For these participants, having peer mentors who have experienced or were experiencing similar struggles frequently facilitated open and honest communication and provided opportunities for developing more meaningful relationships between participants and an interventionist than were normally expected in a health care or social service setting. Roger, who identified as a heterosexual, cisgender, Black man in their mid-50’s, and who was diagnosed with HIV 14 years ago, explained:
You know. I call [my peer mentor] sometimes at night, you know when I’m struggling with stuff, you know what I’m saying? She guides me. You know like I was struggling about [whether to tell my mother I was living with HIV], and she was like tell her, tell her. I was like I don’t know how to tell her [laughter]. She helped me get through that, you know?
Roger highlighted support they received from their peer mentor, and that “This place didn’t pressure me.” They contrasted the research project, however, with other settings, noting:
You know in prison the pressure was there. You know from the medical staff, you know? [They threaten] “I’m going to write you a shot [a punishment given to an inmate who violates a code or procedure] if you don’t take it [HIV medication].” Well, get to writing. You can’t force me to take nothing [laughter]. […] Oh yeah, we’re going to put you in seg [segregation]. Want me to write the paperwork for you [laughter]? How long I’m going to be there? I’ll go pack my stuff now. You can’t keep me there because I don’t want to take it.
Although Roger presented their experiences in a light-hearted manner, the coercive approach to HIV management they found in the prison setting was clearly detrimental to their health and well-being, since it resulted in Roger declining HIV medication while incarcerated. Indeed, as noted above, the ICM is designed to draw attention to contextual and structural factors that impede engagement along the HIV care continuum, including factors that deny dignity and restrict autonomy, as reflected in Roger’s quotes. These factors are elicited and discussed in intervention components, including Component C.
Similarly, Monica, a heterosexual, cisgender Latina woman in their early 30’s who had been living with HIV for 10 years described their experiences with the peer mentor:
Well her [the peer mentor’s] past life and my life, it's similar. So maybe not everything, but there is a lot of things that we can interact and we come across. I can understand what she's saying. She can understand what I'm saying. I may not have been through everything she's been through but I've been through what I've been through.
Monica credited their peer mentor with playing a role in Monica’s decision to restart HIV medication and engage in a directly-observed-therapy program to support medication adherence.
Overall, participants commonly stressed that they felt truly cared for, listened to, and validated by peer mentors throughout the study, again often positively contrasting this experience with experiences in other social service or healthcare settings. Jared, a Black, heterosexual, cisgender man in their early 60s, who was diagnosed with HIV at the age of 40 and who was struggling with medication adherence and substance use issues while in the optimization trial, noted the level of care they experienced in Component C:
Yeah, [my peer mentor was] real helpful. Hey, that's what I love about you. You check on people, that's good. It's not the point at when you're like on the parole office or anything – you're checking to see how I'm doing. Parole officer wants something you own.
Thus, Jared drew a contrast between being checked up one because one cares, in contrast to for less supportive reasons. Jared’s quote, similar to Roger’s above, further highlights how commonly participants are located in contexts that restrict their autonomy and monitor their behavior, often with detrimental effects on health decisions and behaviors. Yet, a peer mentor can often successfully engage with participants and perhaps engender trust and communication through a deep shared understanding of what it means to live with HIV. Participants reported that with Component C (peer mentorship), they were able to develop what they described as genuine, validating, and supportive relationships with individuals who shared similar backgrounds and experiences, challenges, and successes. This relationship, in turn, yielded benefits to HIV management and other areas of functioning in many cases.
Component D: Focused Support Groups
Description of Component D: Component D was designed to provide social, emotional, and instrumental support, reduce stigma, give acceptance or validation, and encouraged shifts in perspective to address barriers to HIV care engagement (e.g., regarding medical distrust and fear) and elicit and explore issues faced by PLWH who use substances, have mental health concerns, and/or are from sexual/gender minority status backgrounds. Six 90-minute sessions were led by a clinician expert in group work and were convened every 2-3 weeks over a 4-month period. Topics for discussion were selected by participants, guided by a menu of options that included barriers to and decisions regarding HIV care/medication, reasons for not taking HIV medication, distrust and fear of and counter-narratives about HIV medication, race/ethnicity and social class and HIV medication, substance use and HIV medication, coping with HIV medication, managing pressure to take HIV medication in HIV care, mental health, stigma, managing communication with health care providers, and adherence to HIV medication. The menu of topics was intended to signal to participants that Component D allowed for free and open discussion of aspects of HIV management that commonly affect AABL PLWH but that are typically challenging to discuss in typical health care and social service settings. However, the group was free to discuss any topic the members wished to focus on. Examples of how the component aligns with the ICM include that groups addressed major barriers AABL PLWH experience to engagement along the HIV care continuum that are not commonly discussed in other settings, which is de-stigmatizing and culturally and structurally salient.
We found social isolation was endemic in this sample, with deleterious effects on wellbeing and health. Participants who engaged in Component D noted these interactions provided a much-needed break from everyday routines often marked by loneliness, depression, and anxiety. As noted above, one goal of Component D was to provide an opportunity for participants to discuss barriers to engagement along the HIV care continuum that were not commonly addressed in medical or social service settings, such as the decision to not take medication. Consistent with group theory, with respect to HIV management, peers generally have greater credibility than professional staff. Importantly, we found that participants developed social connections with individuals during the groups, many of which extended to life outside the group setting. Emmanuel, who is introduced above, described their support group experience:
The groups are fantastic. Yes. I met a lot of interesting people in the group. A lot of good brothers and sisters come to the group – different, diverse backgrounds; different people – and sharing and hearing their stories touched me. I even got emotional my last day, going to group. [...] Well, we talked about our past, our demons that some of us were facing. We talked about families in groups. We talked about goals in groups. And the main thing we talked about was taking our medication. That was the main thing: focus on taking your medication, because you're not going to be able to take that nice trip that you want if you're sick. To prevent you from getting sick, take your medication. Your medication is very important. Like I said, that made me change my whole thinking. Now I'm really [tuned in] with medication.
These groups were routinely described as a safe and confidential space within which to offer and receive emotional and practical support around HIV management issues or life in general. Thus, similar to other components, a flexible approach and the understanding that participants are whole people, not just PLWH, may have contributed to high levels of acceptability and feasibility for this component. Charles, a cisgender, Black, heterosexual man in their late 50’s who was diagnosed with HIV over 20 years ago, explained:
The group here was good. It really was. Yeah, because you could talk about anything. It don't have to be the medication. There are people there with different issues, and anytime I could talk about what's going on. It's helping, and it was good feedback from people who went through it. They would share their experience with it, do you know what I mean?
Likewise, Nelson, a heterosexual, cisgender Black man in their early 50’s living with HIV for almost 20 years described:
I think for the most part it's like when you hear like someone is going through a rough patch that you actually been through, and sometimes you think that you're not gonna get through it, but when hear, you know, the stories about, you know, this is where I was at and this is where I'm at now, it helps. It helps, because just knowing that it's possible or seeing that it's possible, is a big help. Just like -- just all types of different things, compliance with the meds. Like for example, I got like a nail infection, right, so they get real brittle. And the gentleman sitting next to me said, "Yeah, I had the same thing." So he was telling me that, you know, if you consistent with your meds and take what you doctor gave, it will go away. I've had this for a while now. I thought it was never gonna go away. [...] So, speaking of him, that was one of the things that, you know, if I wasn't in the group I wouldn't have known.
Social isolation and its sequelae are serious barriers to engagement along the HIV care continuum among AABL PLWH. With respect to Component D, guided conversations with peers sharing similar life experiences provided opportunities to candidly discuss struggles and successes. Moreover, guided by the ICM, this component was designed to elicit and attend to contextual and social factors common among AABL PLWH, and sometimes more common among AABL PLWH than their White peers, such as housing challenges, medical distrust, and counter-narratives. Thus, Component D (focused support groups) was described by participants as allowing for guided, yet exploratory, peer conversations that allowed for and encouraged participants to break from their daily routine and social isolation to discuss barriers and facilitators to ART adherence and other shared goals, including aspects of HIV management that cannot are or not commonly discussed in typical care settings such as medical distrust and counter-narratives. Further, at times participants developed longer-lasting social connections from the support group experience.
Component E: Navigation
Description of Component E: Participants were assigned to either a short (3-month) or long (6-month) version of Component E, which was designed to assist participants in identifying and overcoming structural barriers to effective HIV care and ancillary services. Individual, menu-based, highly focused sessions were held approximately weekly, if needed, beginning with an in-person 30-60 minute meeting during which participants’ barriers to HIV care/medication (including substance use and mental health issues) were reviewed, and Change Plan/Action Plans were created. Weekly (at minimum) check-ins via telephone, text message, email, and/or in-person meetings facilitated attendance, as needed, to menu items that included screening and “Fast Track” referrals for housing, substance use, mental health, and other concerns; joint problem-solving barriers to appointments; and providing accompaniment to health care appointments as needed. Examples of how the component aligns with the ICM include that it was designed to address the primary structural barriers that AABL PLWH experience to HIV care, HIV medication, and ancillary services such as for substance use and mental health. Because it attended to structural factors that impede engagement along the HIV care continuum, including those driven by systemic racism and structural inequality, it was structurally salient.
As is noted above, many participants recalled frequently having to navigate complex and often frustrating or even dehumanizing bureaucracies, which they described as a common challenge related to HIV medication adherence. For instance, participants often discussed the intricacies involved in finding services and staying connected to care both directly and indirectly related to HIV medication. James, a Black, cisgender, gay man in their mid-30’s who had been living with HIV for about six years described their experience accessing suboxone for pain management:
Yeah, but you know literally like [my navigator] helped me like really literally bridge the gap so I can actually get the [pain medication], because the thing about it was at [health care setting] and they were administering the suboxone. I couldn’t take any home. So she helped open the door for me to get the pain management. And I actually get the scripts now and they deliver it to me.
Participants struggled most often with housing and accessing primary care, mental health services, and substance use support. These struggles and hassles were reported to negatively affect their sense of dignity and self-worth. In their interactions with navigators, however, participants discussed developing a sense of their own value, which helped them feel enabled to directly ask for what they needed from their providers. Derek, introduced above, also described prior negative previous experiences with health care:
But again, my belief system. I didn’t believe that people were going to help me because I had been nonadherent [to HIV medication]. I had been chemically addicted and running around. So coming out of all of that stuff really put me in a bad place mentally. And I didn’t believe that I could do some things. And the people here at Heart to Heart kind of believed in me. They believed in me for me. And once I started the process everyday became a little easier. When I went to change the primary care doctor. I did not think that, because I have never really had a good primary care experience. It’s always been you’ve got to wait. And then when you get in the doctor’s rushing you out. They don’t have time to discuss issues with you. So I didn’t think I was going to be able to find a good primary care doctor. I have had a number of them. So now that the primary care doctor that I have now, every time I go, I’m more surprised at the reception that I receive from them. If I have a question, they have a lot of services. Like they have social services on the floor. They have case workers on the floor. So if I need something that person is usually available on the floor and they’ll direct me right to them. So I feel like my needs are important to them. And that’s something I never gotten at a primary care facility.
Similarly, Angel, a Latino cisgender, bisexual man in their early 30’s diagnosed with HIV as a teenager, noted:
But the navigation part, [the navigator] was really good at navigating stuff. It was almost like I needed her, but I did it all on my own anyway. It was like a boost with her. It was like a boost. No, I did everything on my own. I had found a new apartment and everything.
The intervention components were individualized, as noted above, and interventionists were able to respond to the primary problems that participants wished to address, whether related to HIV or not, including in Component E (navigation) which focused on structural barriers to health. Many participants also reported that they felt able to discuss substance use and other potentially sensitive and/or stigmatizing issues in a safe, supportive environment, and frequently noted that staff was able to “meet them where they are at,” consistent with the ICM. Derek, introduced above, described:
I really didn’t think that I was going to be successful at any of these things when I got to Heart to Heart. People told me I could get another [health care provider], because I had given up by the time I got here. You guys told me that I could [be] back in [substance use] treatment. That I can find treatment that would be suitable for me. That I could get back on the medication, that I could become adherent. That I could achieve undetectable viral load. Which all of those things came true for me. Another one, I did not think that I was going to be capable of becoming employed because I had been out of work for a number of years. And you guys encouraged me and told me to just put the resume out there, see what happens. Don’t project what’s going to happen just do the foot work. And so I was able to do that. And one of the first jobs I applied for called me. And I applied for a job as a line worker, and when they looked over my resume, they felt that my experience dictated that I could supervise on the site. So I came in as a supervisor. I’m supervising now. Really beyond my wildest dreams. So those are just a few of the things that have happened to me.
Thus, Derek experienced a cascade of changes and benefits from their work in Component E (navigation). Primary among these was linkage to suitable substance use treatment, which contributed to their re-initiating HIV medication, which, in turn, allowed Derek to re-join the workforce at a supervisory level.
The receipt of material and practical support from the project was a prominent theme in participants’ descriptions of components, likely related to the fact that all participants received Component E (navigation) for either three or six months. Regarding Component E (navigation), participants noted that the project staff was, at times, able to assist them with locating new healthcare providers and mental health services, navigate frustrating and often unsympathetic or even hostile bureaucracies, obtain basic needs from food pantries and other community-based organizations, and provide support and guidance to access housing. As noted above, these aspects of Component E (navigation) were intended to address social inequities and circumvent structural barriers to HIV management.
Participant Recommendations for Improvement
Although participants reported overall satisfaction with the study’s individual intervention components, as well as with the research program as a whole, there were nonetheless a number of gaps identified. By far the most frequently mentioned area where improvement was needed was related to the length of the intervention components and intervention period. For many participants, their time in the intervention components and intervention period was far too short, and as a result, participants frequently reported feeling unexpectedly disappointed when their time in the project ended, even after recalling that they were made aware of the duration of their study participation in advance. Noting that they would have liked more time for support and services, for instance, Jordan, a cisgender heterosexual Black man in their 60s and diagnosed with HIV in their late 30’s, noted the following:
Yeah, they should let it go on like three or four years. [...] Well no, because like I said, I liked the program and stuff. I wouldn't change none of that. I just would add on some more extended time.
Similarly, Roger (introduced above) suggested the following:
Just some of the big components are a little too short. And they can dig a little deeper, you know? [...] Different ways to help people take their medicine.
Finally, in addition to extending the length of the intervention period and intervention components, several participants not assigned to Component D (focused support groups) stressed the need for more group interaction.