Participants’ sociodemographic and background characteristics are found in Table 1. Participants were 49 years old, on average (SD=9 years). Most (78%) were assigned male sex at birth. Approximately a third (33%) were sexual and/or gender minorities. The majority (76%) were African American or Black and the remainder were Latino. Rates of adverse childhood experiences ranged from 0-14 (mean=4, SD=3 experiences). Indications of low-socioeconomic status and extreme poverty were common: Only 17% were employed, nearly half (46%) had run out of funds for necessities at least monthly in the past year, and most (85%) experienced food insecurity often or sometimes in past year. Less than half (52%) were not stably housed. Participants had been diagnosed with HIV 19 years ago, on average (SD=7 years). All had taken HIV medication in the past. The longest duration of sustained HIV medication use was 45 months (SD=63 months). Current substance use was common: approximately half (54%) used alcohol at a moderate-to-high-risk level based on The World Health Organization ASSIST measure scoring criteria, 61% used cannabis at a moderate-to-high-risk level, and 63% used cocaine or crack use at a moderate-to-high-risk level. Less than 10% injected drugs in their lifetimes or the past three months. Most (78%) engaged in substance use treatment in the past. Approximately one third of the sample or less reported likely depression, anxiety, or post-traumatic stress disorder (PTSD). A total of 40% evidenced suppressed HIV viral load assessed via a lab report at the 8- and/or 12-month follow-up period.
Table 1. 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 times)
|
10.6 (17.8)
|
Longest duration of sustained HIV medication, in months (range 0-264 months)
|
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
|
In Table 2 we present participants’ acceptability ratings of aspects of the study overall at the final follow-up assessment for the entire sample. Acceptability ratings were high (> 70%). Regarding feasibility, despite disruptions due to the COVID-19 pandemic as described above, assessment follow-up rates were high: 83.4% completed the 4-month, 81.1% completed the 8-month, and 80.7% completed the 12-month follow-up assessment.
Table 2. Acceptability ratings at the final follow-up assessment (N=411)
|
|
%
|
Overall, I think the activities and services in the Heart to Heart 2 project are good to excellent
|
90.0
|
The information I have received in the project has been helpful or very helpful
|
92.2
|
The staff of the project have answered my questions most of the time to all the time
|
91.0
|
The project staff treats me like I am an individual with unique needs and concerns most times to all the time
|
90.5
|
The project staff respects my privacy most times to all the time
|
90.8
|
The project staff understand the needs of people of my racial, ethnic, or cultural group most times to all the time
|
87.1
|
(If sexual/gender minority status) The project staff understand the needs of people who identify as LGBTQ (lesbian, gay, bisexual, transgender and queer)
|
82.0
|
(If female) The project staff understand the needs of women most times to all the time
|
92.1
|
(If < 36 years old) The project staff understand the needs of younger people (<36 years old) most times to all the time
|
78.5
|
(If > 50 years old) The project staff understand the needs of older people (>50 years old) most times to all the time
|
88.5
|
Participation in the Heart to Heart 2 project affected my decision to regularly attend HIV medical care somewhat to a great deal
|
76.2
|
Participation in the Heart to Heart 2 project affected my decision about whether or not to start HIV medication somewhat to a great deal
|
71.8
|
Overview of results
Participants described managing a confluence of recurring challenges and crises, all exacerbated by chronic poverty, throughout the time they were enrolled in the Heart to Heart 2 project. These commonly included homelessness and/or poor quality or unstable housing, relationship instability, involvement with probation and parole systems, histories of trauma exacerbated by current trauma, underlying physical health comorbidities in addition to HIV, challenges with substance use management and in some cases, hazardous substance use, the need to sell HIV medication to meet basic needs, and severe mental health distress. This attention in the present study to structural factors such as poverty and housing is consistent with the ICM which emphasizes structural competence. Nonetheless, even in this challenging context, the majority of participants were still able to reflect on their own strengths and resilience, perhaps reflecting the ICM, which incorporated a strengths-based approach. Further, we found participants maintained both the desire and ability to make changes in health behavior and other aspects of their lives consistent with their own values, including within the “safe space” that they reported the project provided. Participants overwhelmingly emphasized that the Heart to Heart 2 project provided a space within which they felt welcomed, individually cared for, and, ultimately, within which they were able to reflect on both their emotional and physical health, including their management of substance use, anxiety and depression, personal relationships, HIV, underlying health conditions, and in many cases their willingness, ability, and/or desire to re-initiate HIV medication or to increase HIV medication adherence in order to achieve HIV viral suppression. Even when participants did not elect to initiate HIV medication or increase the number of HIV medication doses they were taking during the project, they reported that engagement in project activities typically resulted in other types of psychosocial, emotional, or tangible improvements. Consistent with the ICM, participants were encouraged to stay engaged in the study even if they elected not to focus on or work toward the study’s primary outcome, HIV viral suppression, without experiencing pressure or judgment from project staff. Generally, participants engaged in frank discussions of their health decisions (e.g., not taking HIV medication) and contextual challenges (e.g., selling HIV medication, substance use) with project staff, including discussing those behaviors not typically considered socially desirable or socially acceptable, which may reflect the ICM and its emphasis on non-judgment, harm reduction, and personal autonomy.
We organized results into the following four inter-related themes: the importance of feeling understood and validated as a whole person and in context; experiences of trustworthiness and trust; opportunities for self-reflection on a range of topics and its effects; and support of personal autonomy and its effects on motivation and decisions. The importance of nonjudgment was prominent in each theme. We also provide findings on the context of participants’ lives in the sections that follow and highlighted the ways the results reflect the ICM. In reporting the qualitative results, we present findings pertaining to participants’ experiences in the project as whole, with some references to specific intervention components for clarity. Gender-neutral pronouns (they/them/theirs) were used in the sections that follow because we did not assess which pronoun series participants used to describe themselves. We used pseudonyms and changed or obscured identifying details to maintain participants’ confidentiality.
The importance of feeling understood and validated as a whole person and in context
Participants emphasized the important role that the contexts of their lives, as noted above, and the characteristics of institutional settings they commonly engaged in, had on behavior and wellbeing. First, they emphasized that social isolation was both chronic and extreme. They reported being generally unable to connect with healthcare, mental health, and other service providers in a manner that was non-transactional, non-judgmental, and meaningful, with one exception; namely, support groups at local community-based organizations oriented toward working specifically with PLWH. Overall, participants felt unwelcome and devalued in health care settings, and were typically hesitant to openly discuss issues such as mental health and substance use with healthcare providers and social service agencies. Participants reported that in many service settings, and particularly in HIV care settings, they frequently experienced feelings of invalidation and lack of individualized care, describing instances wherein they felt like a number, and were treated as “less than human.” This typically resulted in an erosion of their intrinsic motivation to prioritize themselves or their health, which in many cases led to feeling less motivated, rather than more motivated, to improve their HIV medication adherence patterns after engaging in health care settings.
In contrast, when asked to reflect upon their experiences during the Heart to Heart 2 project, participants typically discussed feeling understood as an individual, and, in many cases, as a whole person. They commonly reported that the project was one of the first times they felt viewed in a professional setting as a complex person with well thought-out and worthwhile perspectives and needs. As shown in Fig. 1, the ICM emphasizes, in part, individualized care, participant dignity, and reduction of stigma. Participants indeed did commonly experience relationships with project staff as de-stigmatizing, mutually respectful, possibly dignity enhancing, and, in many cases, caring. This, in turn, fostered a clinical context in which they could explore aspects of their lives they generally experienced as underappreciated, disregarded, and stigmatized in most professional settings, in relative safety.
Upton, a Black, gay, cisgender male in their late 40s, who had been living with HIV for 10 years, described the importance of their larger context and the cascading effect that poor quality housing could have on HIV medication adherence, by triggering depression.
I moved to this room, it’s horrible, in the Bronx. It’s very hot, you can’t cook, you have to buy every meal. […] It’s so much more expensive having to buy every meal, every day of the week. […] This place it kind of makes it hard, but I’m trying to keep on the up. Because I know if I go down [get depressed], then my adherence is going to get thrown off. […] If I get to my depression or I just – because there’s been times the [medication] bottle has just been sitting there, and I didn’t sell it, and I still didn’t take it. That’s just the only battle. And that’d be my mental health issues, and hopefully I don’t – I could stay on top of that. The weed helps. You know what I mean? I’m just being real.
Thus, Upton highlighted the importance of eliciting and understanding the context of participants’ lives, including how poverty can create contexts such as poor housing quality that are not conducive to HIV medication adherence, and how entities in the larger environment, such as corrupt pharmacies that buy HIV medication from patients, interfere with health behavior. Upton described a personal harm reduction approach to preventing their selling HIV medication to corrupt pharmacies: In order to prevent themselves from diverting their HIV medication, they would “like punch the foil open once I pick it up from the pharmacy.” This is because once the foil on the pill bottle was punctured, it would not be possible to sell the bottle, and Upton would be more likely to adhere to their medication regimen. They continued, “Even though I may say I’m not going to sell it, but – and even though there’s no thought of selling it, [I] punch it anyway.” Indeed, guided by the ICM, the intervention components were designed to elicit and address or circumvent these types of structural and contextual factors, and prompt participants to develop harm reduction strategies.
Simone was a Black, heterosexual, cisgender female in their early 40s who had been living
with HIV for approximately 15 years, and who struggled with depression. Simone described a history of very difficult experiences with medical providers and managing health care systems, including numerous cases where providers pressed them to make certain medical decisions, but did not truly understand Simone’s needs. They described:
The doctor actually gave me a prescription that I'm allergic to [related to an egg allergy]. That means that you're not paying attention to my chart. Like these are the things that you go through [in HIV care settings], and if you're not an assertive person like I am, [if] you're not paying attention, [if] you're not reading these papers, [if] you're not reading what they're ordering, [if] you're not reading what you're signing, you're going to end up getting a flu shot that you're allergic to. So that just made me feel like, okay, you guys are just not [paying attention].
Simone had not taken HIV medication for over a year at the time they enrolled in the
study. They described their experience in Heart to Heart 2 as “personalized,” in contrast to the typical medical setting, and these personalized experiences contributed to their deciding to access treatment for depression and, sometime later, re-initiate HIV medication.
Hank, a Black, gay, cisgender male in their early 50s, who had been living with HIV for approximately 10 years, contrasted their experiences in the research project with typical health care setting encounters. They noted a marked lack of social and structural stigma in their interactions with Heart to Heart 2 project staff, consistent with the ICM:
And you know, just in passing I spoke to like the receptionist [at the project], the people that log them [participants] in, and you know, it's like you don't feel like a pariah, you don't feel like nobody's scared of you because you're HIV positive. It's like people talk to you like a real person, and that matters more than anything. […] People were treating me like I'm a person instead of a number. [...] Other than that, it's just, I just feel comfortable [at Heart to Heart 2]. Usually when you go to places like this [that serve PLWH], people make you feel like, you know, hands off. They don't make you feel comfortable at all. It's like totally psychological, and sometimes, you know, you ain't in the mood for that shit.
Relatedness (i.e., social relationships) is one important aspect of the ICM. Like with Hank, many participants described the ability to develop meaningful, ongoing connections with project staff as a critical part of their experiences with the project and the foundation, in turn, for their being willing and able to address a broad range of HIV medication-related struggles in a holistic manner.
On the other hand, participants commonly expressed frustration that their primary care providers and other social service providers were not better able to see their HIV care and HIV medication adherence struggles in a larger context. In particular, they experienced their providers as “dismissive” of a number of issues participants considered vital, such as housing insecurity, personal relationships, substance use, and legal problems. Participants reported providers appeared to see these types of concerns as peripheral or even unrelated to HIV management. Yet, participants were clear these issues were directly related to HIV care and medication, and the lack of such recognition commonly left participants feeling overlooked, frustrated, or rejected. In contrast, the ICM highlights the importance of understanding a participant or client’s larger context, including structural factors that may affect health behavior. Jared, a Black, heterosexual, cisgender male 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 Heart to Heart 2 project, drew a stark contrast between the connections forged during their time with the project and with other settings. They repeatedly stressed the importance of feeling seen and heard by all Heart to Heart 2 staff members alike:
Because the basic thing here with you all is that you listen. All of you all. Even you. I'm looking at you. You're listening to me. You ain't trying to blow me by. Anybody's trying to blow me by [I] would get up and say have a nice day. I'm like that. Quick. But you listen. I seen that when I first walked in. It's important. Because people are hurting, you never know. See, when you don't listen to someone, that – I have seen people in my life, I'll be honest with you, I've seen like six or seven people commit suicide because nobody listened to them [...] And that's why I love this place, because you'll listen. Every last one of you that work here, you're listening, and then you'll give back your feedback. I never got no bad [unhelpful] feedback from none of y'all.
Thus, Jared highlighted the importance of being “listened to” as a precursor to receiving feedback that might assist them in achieving their health goals. This experience of being listened to and heard may reflect the ICM in that participants’ larger contexts are considered a vital part of the clinical encounter. We found that when participants felt they were being genuinely listened to, the level of investment they felt by staff translated to the participant developing a deeper level of investment in themselves.
It follows that since the ICM highlights the importance of eliciting and understanding a participant as a whole person and in context, participants are more than just an “HIV positive person.” Results indicated that having a space where participants experienced individualized services that took the larger context into consideration, while also supporting autonomy, commonly fostered their abilities to see HIV and HIV medication as aspects of their lives, and therefore, to reduce the sense of being defined solely by their HIV status. Steven was a Black, heterosexual, cisgender male in their early 50s, who had been living with HIV for 20 years, and for whom “going to a doctor is a reminder” of their HIV status. For Steven, the ability during the Heart to Heart 2 project to have an “open dialogue” with chances to “branch off” into other areas of their life presented an “unexpected opportunity” to connect the painful emotions related to living with HIV and their experiences in typical HIV service settings more directly with their ongoing HIV medication adherence challenges. In the following quote, they refer to the study in general, and to Component D: focused support groups:
You come to a place where [you can engage with] people with the [HIV] virus and shit. And you're offered a chance with people with the virus to talk and feel relaxed and comfortable. There's not that many places that you can feel human, because you've got to understand: There are times you feel less than human, which is why a lot of people don't take their medication and everything, because they want to forget. They want to be – I'm just normal. I'm like everybody else. So, you don't take medication, and you don't present to doctors and do what you want to do to live that fantasy of being everybody else. And you put yourself in jeopardy. Truthfully, you're putting more people in jeopardy.
As with most participants, feelings of validation that their life was seen in context, that they were valued as a whole person, and of connectedness with the project staff allowed for more open and honest conversations about a range of issues directly and indirectly associated with HIV care and HIV medication adherence. Further, the sense of acceptance and connectedness that resulted from the intervention activities grounded in the ICM were reported to increase participants’ view on the acceptability of intervention components, as well as the likelihood that participants would continue to actively engage with the Heart to Heart 2 project over time; that is, study feasibility.
Experiences of trustworthiness and trust
As noted above, distrust of health care systems, HIV medications, and counter-narratives about the causes of HIV and its treatments are very common among AALB-PLWH, while distrust in actual health care providers is secondary. Yet, participants’ trust in the project and the project staff are critical for perceived acceptability of services, ongoing engagement and thus study feasibility, and effective clinical service provision. Trust is a central precursor to effective counseling interventions and productive patient-provider relationships, as noted above. The ICM was designed in large measure to create a research project that was worthy of trust and to build trust. In part this was addressed by eliciting and understanding the valid reasons for medical distrust and counter-narratives among AABL-PLWH, since medical distrust and distrust of research projects are related. Guided by the ICM, the project staff sought to build participants’ trust and communicate their trust in the participants to make their own health decisions, even in the context of medical distrust (which the project sought to elicit but not necessarily to question or change). Thus, to some extent trust between the project and participants was built by eliciting, discussing, and understanding the valid reasons for distrust and counter-narratives, and by the project expressing trust that participants would make the right decisions for themselves.
Participants frequently discussed the importance of trust and honesty in medical care and social services. They provided numerous examples of times when they either had or had not trusted or been honest with others, and also times when they had and had not been honest with themselves. Consistent with the intentions of the ICM, participants commonly experienced the Heart to Heart 2 project as an environment where they could speak openly and honestly about matters related to their physical and mental health care that, in the past, they typically felt were off-limits or that they avoided out of an abundance of caution. Of vital importance, participants noted they experienced being trusted and being seen as trustworthy in the project. For example, they experienced project staff as assuming that they (the participants) were experts on their own health and could and should make their own health-related decisions. This perspective, in turn, contributed to feelings of confidence and self-efficacy with respect to these health decisions. In contrast, participants reported commonly experiencing great pain and frustration in health care settings in cases where they were not trusted to be expert on their own health. This theme of the importance of trust and trustworthiness was noted in discussions about relationships with HIV medical providers, project staff, and other support staff in participants' lives. Upton, introduced above, described a long history of significant mental health concerns and complicated substance use patterns, coupled with pervasive homelessness, which began when they disconnected from their family decades prior. Upton explained that all of these experiences made it very difficult to remain in medical or mental health care on a continuous basis, particularly over the past five or six years. They discussed how they had been selling their HIV medication when they needed money for necessities, and sometimes for substances. Upton described being able to discuss these types of experiences honestly and without judgment during the Heart to Heart 2 project, suggesting Upton found the project trustworthy. Upton described that those honest discussions in and of themselves helped to develop motivation for their personal HIV-related health goals.
Even when I didn’t take it [HIV medication] – I mean I remember them times – when was it? Especially late last year, early this year, January, when I actually didn’t take a bottle, and I was just totally honest – I think I had a meeting with [my navigator] right around the next day I think I sold the bottle.... And I didn’t feel judged. She said, “I’m so glad you’re honest and open with me about it.” I didn’t feel pressure or discrimination at all.
Similarly, Ronald, introduced above, described the project as a place where they learned a great deal about themselves, their decisions, and their motivations. They noted the environment provided space for them to be honest with the project staff, which led Ronald to become more honest with themselves, and also more honest with their health care providers and others in their life. They described feeling trusted by staff to be a reliable reporter of their own experiences, including related to substance use problems, and that experiencing that trust helped them to prioritize their own health:
[Heart to Heart 2 has] taught me a lot, man. It’s taught me that I need to be honest with myself. I need to be true with me about everything I do in life. Even with this young lady I met [a new romantic interest], even with myself. I should be number one in this world because without me, I can’t make anyone else happy. […] That’s just the outcome of life, man. I want to be somebody in this world. I want to leave a legacy. […] I want my family to say wow, at least he went bad and then he became someone and he did something [positive]. He left this for his nieces. That’s my plan.
Wallace, a Black, gay, cisgender male in their mid-40s, who had been living with HIV for decades, described their life history as one of being in service to others, coupled with a lengthy history of substance use, unstable housing, and mental health issues. They saw the environment in the research project as one that engendered a feeling of trust, which in turn enabled them to open up about their myriad life experiences in a way Wallace had never experienced before, reinforcing a sense of trust they were developing within:
[Being able to talk about things not directly related to my HIV medication] is what always happens when I come here. And that’s why I say it’s very helpful, because I don’t go anywhere else and talk like this. […] So, whenever I come here, I’m able to process some stuff that I don’t process anywhere else. I think that Heart to Heart creates a level of comfortability for people to be able to open up. Just the vibe and the spirit from your workers. […] And some places you go to it’s just very business and there’s a very fine line. […] Like here, I come, and I just feel like I’m able to talk to you guys. I can't explain it. Maybe it’s just the vibe here is much more laid back than some of other places. So, you don’t feel as though you’re restricted well, I’m here for this and that’s that. […] And some places it’s like, well you’re not here to talk about your partner. Talk about your medication. But they don’t see past that.
Thus, in addition to project staff seeking to build trust with participants and convey trust for participants’ decisions, intervention activities grounded in the ICM commonly fostered participants’ own trust in and honesty with themselves. This honesty with oneself was described by a number of participants as a critical aspect of their behavior change decisions and processes. We examine the role of a related concept, self-reflection, in more detail in the theme described below.
Opportunities for self-reflection on a range of topics and its effects
Aspects of the ICM, including non-judgment, trust building, compassion, and focus on the whole person were intended, in part, to foster open and honest self-reflection. Indeed, participants commonly reported significant, meaningful self-reflection during their time in the project. In contrast, participants generally did not recall being asked about aspects of their lives unrelated to HIV in most other social service and health care settings. This, in turn, created a sense in those environments that their multilayered lived experiences should be kept separate from their HIV care management. Moreover, while the ICM assumed that emotions are an important aspect of HIV management, participants commonly stated they had never been asked about their emotional relationships with HIV medication or their HIV care in these other settings. Participants noted that reflecting on these fundamental questions about the experience of living with HIV allowed them to hear some of their own thoughts out loud for the first time, giving them the opportunity to notice patterns of behaviors in their lives. For some, these new insights about patterns of behavior and their causes precipitated behavior changes in HIV medication use, HIV care, mental health support seeking behavior, and substance use management.
In some cases, self-reflection, an intended outgrowth of the ICM, was directly linked to a new awareness of the importance of autonomy and self-determination in health care decisions. Samuel, a Black, gay, cisgender male in their late 30s, who had been living with HIV for nearly 20 years, said they experienced a major shift in the way they looked at their life during the study:
The counselor, she's a real sweetheart. She never judged me, and never made a decision for me. She just asked me, "Well, how do you feel that decision has affected you?" And I never really thought about that. It was just a life-changing moment. Something just clicked. Like, yeah, that [the decision] is still not helping me. So, I want to do everything I can to help me, even though I still have to go through these dilemmas. I'm going to make sure that I'm all right.
Further, non-judgement may be essential for self-reflection in this context. Indeed, the importance of non-judgment was present in each of the themes described in this section.
Emmanuel was a Latino, bisexual, gender fluid male 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. They explained the complex nature of their difficulties remaining in HIV care prior to joining the study, which included difficulties accepting their HIV status, feeling judged by multiple providers due to their sexual orientation and gender identity, a perceived lack of confidentiality in some service provider settings, and extensive substance use over the years. As they reflected on their time in the Heart to Heart 2 project, they said they experienced, “…a warm welcome when I came. You want some coffee? You want some tea? I was like, oh my god, that's nice. I wasn't [expecting that].” These elements of the study were intended to foster relatedness, one aspect of the ICM. They went on to discuss their experience of being asked questions “they had never been asked before” regarding what they thought was best for them, recalling that, “they asked me what I wanted to do with my life”. Emmanuel said the project environment and the direct questions asked in the intervention components, both of which communicated caring and acceptance to them, opened up space for them to reflect on their life and health:
It makes you think about your life…. The generosity, the caring-ness you know? Somebody that doesn't even know you – they care about you, and to listen to you – what do you want? What do you want to do? You don't get asked them [usual] questions. People judge. People assume [they] already [know] what you want instead of asking you what you want. They're judging for you, or they're making a decision for you, and I don't want nobody to make a decision for me. Ask me what I want? Then you can point me to – if you have another option that we can work around or work with, then I have no problem with that. I have no problem with listening to what you have to say… I don't ever feel pressure here. No, I feel love here.
For Emmanuel, therefore, positive relationships with the project and project staff and non-judgment were preconditions for engagement in clinical services that, in turn, spurred self-reflection. Further, self-determination, an aspect of the ICM, was clearly a deeply held value for Emmanuel.
William, a Black, heterosexual, cisgender male in their early 50s, who had been living with HIV for 20 years, discussed developing a pervasive substance use “addiction” at an early age, which led them to leave home and to become estranged from their family for more than 30 years. During that time, and due largely to their substance use challenges, William was diagnosed with HIV and struggled to remain in HIV care and on HIV medication. Further, they subsequently experienced homelessness for several years, but, more recently, was stably housed with a family member they had reconnected with. William looked back on their time before starting the Heart to Heart 2 study and reflected on the changes they had experienced in their life since starting the study, related in large measure to self-reflection that took place during study activities:
But this place has done a lot for me, looking at me, looking at the things that I’m doing, the things I’ve been going through, and all that other mess. You kept me thinking about what’s going on with me. You kept me thinking about taking my medication. Before I had gotten here to this place, I was on a sketchy – I may – I get my medication, and I sell it. Okay. I may sell like three months in a row. And I ain’t have no medication for the three months and didn’t care. But when I turned around and came here, and then we started talking, and I started listening to what I was saying, that’s the thing that’s helped me a lot. Listening to what the words that were coming out of my mouth. And I did not like it. I was self-destruct[ing], selling my meds, smoking crack, smoking so much crack that I was about ready to die. I didn’t care. And through coming through here and listening to myself speak and telling you all everything that’s been going on, and then how I’ve been doing with my medication and all this other mess, was making me look at – damn, do you want to die? Damn. You up here now with your [family]. Don’t you want to see them graduate from school, high school, going on to college? I was like, yeah, I do. I really do. I’d like to see them grow up and get married. I’m only [age redacted]. I still got some time left here on this earth. As long as I take my medication. You know. As long as I take my medication, I’m good.
Thus, for William, the research project environment and specific components grounded in the ICM fostered open and honest self-reflection, and this experience of “listening to […] the words that were coming out of my mouth” had a profound impact on his intentions regarding substance use patterns and HIV medication. Similarly, Wallace, introduced above, noted feeling committed to helping people who are suffering, but that they sometimes got in the way of “being there for myself”. They described experiences in the study as a time for them to “to sit down and talk about these things out loud so that you can actually get it, process it,” and “I started listening to what I was saying.” These clinical experiences helped them to understand their own decisions and behaviors in a new and different way, which appeared to foster Wallace’s more serious engagement in the behavior change process, rather than passive participation. This, thereby, helped them re-evaluate their behavior patterns (heavy substance use, selling HIV medication) and make changes:
It’s one thing to just think things or hear someone else talk to you about it. But when you have a conversation about it where you’re involved in the conversation or a part of the conversation, it makes a difference. You process things a little differently, and it becomes more important to you.
Further, Wallace’s quote above underscores the importance of the ICM in eliciting discussion of behaviors such as heavy substance use, and selling/diverting HIV medications. These behaviors are not generally considered socially acceptable, but candid acknowledgement of and self-reflection about them are vital aspects of the behavior change process for many.
Support of personal autonomy and its effects on motivation and decisions
As described above, participants generally experienced a lack of support for their personal autonomy in health care settings, particularly with regard to HIV care and decisions related to HIV medication. In particular, participants recalled feeling unable to advocate for themselves effectively in primary medical care and other social services environments. Although participants valued their individual providers, for the most part, HIV primary care settings were described as locations where they did not feel sufficiently valued or listened to, and participants discussed feeling “stuck” and unsure if there were other options available to them; for example, regarding where else they might be able to receive care. In contrast, consistent with the ICM, participants noted the development of a sense of personal autonomy throughout their time in the Heart to Heart 2 project. Some recalled feeling unexpectedly empowered to change medical providers if they felt they were not receiving the care they needed and deserved. They also expressed renewed feelings of autonomy regarding their ability to take HIV medication regularly, remain in HIV care, and reduce substance use or substance use-related harms. Samuel, introduced above, recalled that prior to starting in the Heart to Heart 2 project they were feeling discouraged by the bureaucratic nature of the health care system, particularly at the primary care clinic they attended. They noted that experiences with the clinic, such as frustrations making appointments, made it extremely difficult to maintain their HIV care, leading them to stop caring about their health, which in turn contributed greatly to their stopping their HIV medication regimen. Samuel then described the changes they experienced in navigating their health care and HIV medication use after participating in the Heart to Heart 2 project for a year:
Today, those same dilemmas are still there. Like, none of them have changed, but I've definitely changed a lot. You know what I'm saying? In my view of things, how I take care of myself, and how important it is to me to be medicated and stay healthy – and really almost taking my power back, my life, my control. So, it was really a big whirlwind. Even now thinking about this, like wow, honestly and truthfully somebody saved my life for $15 [the compensation the peer received for referring him to the study].
When asked how the project helped with aspects of HIV and other health management, Samuel described the following:
Okay, well basically the whole program to me – they were never judgmental, and they never made a decision for me. They just informed me of where I was and what decisions – and began to help me put in perspective what decisions were most important to me, and how in that plan I would respond differently when faced with different dilemmas.
Samuel’s experience, therefore, provides support for the importance of non-judgment and personal decision making, both of which are aspects of the ICM. Olivia, a Latinx, gay, transgender female approaching the age of 50 years, who had been living with HIV since they were a teenager, explained that they go “back and forth” with taking HIV medication regularly, since “I get tired of taking them after a while”. Olivia did not start HIV medication until they were in their early 40’s. They attributed this decades-long period of not taking HIV medication to negative experiences they had in the hospital when they were first diagnosed with HIV in the early days of the epidemic, along with a general disdain for taking pills and feeling like HIV medication was a constant emotional reminder of their HIV status. In reflecting on their experiences in the study, Olivia said they felt more inclined to decide to take HIV medications as a result of their time in the study:
Because you get information from each other here and, you know, sometimes when you do better things, when you go to better places and you do better things, it makes you feel better and you want to do better. So you know what I'm saying? […] Because you do better. Once you do better, you feel better about yourself, and that makes you want to do better. It's just like – simple. People just make it hard. Make it hard for ourselves, actually.
Marcus was a Black, gay, cisgender male in their early 50s who was diagnosed with HIV when they were a teenager. Marcus noted “the majority of people that come [to the project], they come here from SROs [single-room occupancy residences], from drug usage, from prostitution, from the whole low income, promiscuous lifestyle.” As a result, they suggested, participants like themselves were generally reticent to speak openly with health care and social service providers about some of the more heavily stigmatized challenges they face. Marcus described their experience of being in medical environments where they felt like, “another piece of cattle just going through the chute.” They described this feeling as pervasive and added that it led them to stop attending appointments with multiple providers over the years. Marcus also discussed their substance use experiences extensively and also their challenges discussing substance use with providers:
I don't talk to them [providers] about substance use. And the reason why I don't is because I believe that relapse is a part of almost everyone's story, and a doctor that tries to insert their will would be a problem for me. Because there are doctors that'll say, "Okay, you have a substance abuse problem, okay, I'm going to put all your meds in a pharmacy bottle" [so he could not sell the medications]. That's a problem because that's not me keeping myself clean. That's you trying to force me to be clean. But they'll do it. So, and that, you're not gonna make decisions for me like that in my life. A doctor that is a 100 percent abstinence doctor, I don't need them. Not saying that I do not need abstinence because I do. But that's my choice. You're not gonna take that from me. So, me being articulate and intelligent allows me to see shit that a lot of other people will take for granted. And I can hear your words, and I understand what they mean, or I understand what you're telling me by not telling me. So, I pay attention.
Marcus, therefore, highlighted the importance of autonomy support and harm reduction, both aspects of the ICM, including because a “100 percent abstinence” model is not useful to them. Similarly, Simone, introduced above, described their time in the project as valuable. Simone had a history of very difficult experiences with medical providers who Simone described as pressuring them to engage in certain health behaviors but not truly understanding their larger context or needs. According to Simone, during the project they were able to traverse through a frustrating bureaucracy and finally find a clinic where they felt comfortable and could develop a good relationship with their provider:
I mean [I was] just facing issues that you don't normally want to face. You know, things that we keep on the inside that we do have issue with going to doctors’ appointments and we don't put the effort in, because of our own bias towards it. […] But if you could just get past that, there is help. But it's a mental thing. If you have one bad experience [in HIV care], you're kind of resistive on going back again or doubtful that they're going to help you. But I don’t feel like you should stop [trying]. There are hundreds of places you can go. Like just, all right, this one didn't work. Let me go here. This one didn't work. Okay, let me go here. And look, it only took me three times. Only three…. You know, so I pushed past my resistance and look, I fell into the perfect people [at an HIV care setting] for me.
In many instances, participants emphasized that while participating in the Heart to Heart 2 project was useful, it was they themselves who carried the burden of managing HIV and they who must make the decision to take HIV medication, underscoring the importance of self-determination theory and autonomy support in the ICM. As Hank, identified above described,
I just take medication. And then here comes an oxymoron. My decision to take medication had nothing to do with you all and everything to do with you all. […] You made me think about it. And therefore, I started taking it. But it wasn't because you all forced me to do it or anything like that. It was just you put the thought in my head. People have been doing it around me for a little while. I just needed to hear from somebody else, because I was going to go the whole holistic thing. […] You know, herbs and all of that aromatherapy, but that shit doesn't work. Medication does.
Similarly, Samuel, described above, highlighted the utility of the ICM to guide participants toward behavior change, while supporting autonomy. Further, consistent with the ICM, which emphasizes evidence-based behavior change techniques including motivational interviewing, autonomy support alone is not generally sufficient for behavior change. Samuel said:
I was never pressured here to take medication. I was given options and choices, and discussed consequences. You know what I’m saying? Cause and effect, what this would – how this would affect me, you know what I’m saying? But never really given, you know what I’m saying, an ultimatum or this is what you need to do. You know what I’m saying? It was always all my decision, I felt. […] I was just given the tools to make that good decision.