Stakeholder participants were mostly mixed race (48%) or Black African (40%), mostly female (68%), and had been in their current job for an average of 4 years (SD = 1.00). Occupations included directors/managers/supervisors (n = 12), SUD counselors (n = 3), community health workers/field workers (n = 5), nurses (n = 2), and HIV counsellors (n = 3). Patients were 100% Black African, mostly female (73%), and had a mean AUDIT-C score of 7 (SD = 3.14). Only one patient reported prior SUD treatment. See Table 1 for more detail.

Table 1 Patient and stakeholder characteristics

On the SDS, most stakeholders scored high in social distance for questions about interacting with Andile when he was not in recovery (75%), yet low in social distance when he was in recovery for at least 2 years (90%). Stakeholders reported high interest in getting training to help a person like Andile (M = 9.45/10, SD = 1.54), most (70%) reported having family members with substance use or mental health concerns, and 40% reported having received SUD/mental health training in the past. See Table 2. All patients endorsed feeling comfortable talking to someone like Andile and wanting someone like him on their HIV care team. See Table 3. Tables 2 and 3 present additional quantitative results for stakeholders and patients.

Table 2 Stakeholder social distance scale (SDS) resultsTable 3 Patient social distance scale (SDS) results

Three key themes were identified from the qualitative interviews: (1) patient-reported experiences of enacted SUD and HIV stigmas were common and impacted HIV care engagement; (2) patients and stakeholders considered a peer model highly acceptable for integration into HIV care to support engagement and address SUD stigma; (3) patients and stakeholders identified both individual-level and systems-level roles for peers, and key characteristics that peers would need to be successful in these roles. These themes are described below and illustrated with participant quotes.

Patient and HCW experiences of HIV and SUD stigma were common and impacted HIV care engagement

Patients reported independent and intersecting experiences of stigma related to HIV and SUD that affected their motivation and engagement in HIV services. Most patient participants reported experiencing both HIV and SUD stigmas, including feeling stigmatized by structural factors related to HIV care delivery. For instance, patients described how the use of separate waiting rooms and clinic cards for patients with HIV compromised the confidentiality of their HIV status:

“The way that our clinics are structured, that we are divided, like the waiting rooms…everyone can see that…this area specifically is for HIV positive people…people are very uncomfortable with that and they are worried about being seen by other people in the community...also our clinic cards are different…Those are the things that cause people to run away or not to attend clinic” –Female, early 40s, patient

Additionally, several patient participants reported negative and punitive responses from HCWs about having contracted HIV and HIV adherence difficulties related to SUD, reflecting intersecting HIV and SUD stigmas. One patient participant shared:

“He/she [the nurse] asked if I am taking my treatment and I told him/her that most of the time I forget because I drink, then he/she started shouting “What you are good at is drinking alcohol and opening your legs” and so I did not like how [they] spoke with me” –Female, mid-30s, patient

Patients and stakeholders described experiences of intersecting HIV and SUD stigmas. Specifically, some patient participants described that when receiving punitive responses for non-adherence, HCWs often blamed substance use as the cause. In some cases, people may be refused HIV care for using substances. Some stakeholder participants confirmed that care refusal, although illegal, did sometimes occur:

"I mean legally they can't refuse somebody treatment. But, you know, people are paternalistic and they would say, you know… ‘we are here to do the best for you but you need to take responsibility, so I'm not going to give you the treatment.’” –Male, late 40s, stakeholder, HIV care

Several HCW participants used stigmatizing language when describing PWH and SUD, substantiating patient participants’ concerns about stigma from HCWs. For example, they described patients using substances as “untrustworthy,” that they might be dangerous or commit “crime.” Further, both patients and stakeholders were more critical of patients using non-cannabinoid drugs than cannabis and alcohol.

A peer model was considered highly acceptable for integration into HIV care

Both patients and stakeholders perceived peers with lived experience of substance use as potentially helpful and destigmatizing members of an HIV care team, while noting potential implementation barriers. Although peers with SUD histories are not currently part of HIV care teams, some HCWs could see the potential benefits of this role based on their own interactions with people in SUD recovery. They described how informal interactions with people in SUD recovery shifted their attitudes towards PWH with SUD. One HCW shared:

"It molded my way of thinking...I used to think recovery is just about leaving the drugs, but it's not the case… [interacting with a peer] altered my perception on the whole drug thing.” –Male, early 30s, stakeholder, HIV care

Stakeholders who had worked in an SUD facility that incorporated program graduates as co-leaders of groups had positive perceptions of a peer model from these experiences. One HCW participant described the need for peers as recovery role models in their community:

“People think a hero is only a sports star or musician or politician. But…those people, if they've recovered and they want to tell their stories, you can model them as community leaders.” –Male, late 40s, stakeholder, HIV care

Further, one stakeholder acknowledged how integrating peers into the organizational structure could shift the overall culture to be more “welcoming” and destigmatizing.

In response to being asked how they felt about a peer model, patients described feeling “relieved” because of “shared understanding,” and that they would be able to “open [their] chest” and that “it’s all about asking from those who have walked the path.” Another patient contrasted their perceived comfort working with a peer with potential judgment from other providers without personal experience:

“You feel comfortable when talking to someone who knows the shoes you are stepping in…you feel better, because sometimes you feel that, “How are they looking at me?” “Maybe they are pretending…” whereas when you know that this person has been through this road…other people would feel comfortable.” –Female, early 30s, patient

A few patient participants described instances where HCWs had revealed lived experiences SUD and described how the sharing of this lived experience reduced their concerns about HCW stigma, making them feel more engaged in the treatment process:

“I was relaxed. I was comfortable around the person. And I was free to talk about anything…I wasn't shy to ask questions about anything I wanted to ask about.” –Female, mid-20s, patient

Some patient participants also indicated that they would be interested in being a peer themselves once in SUD recovery. They thought that this role would give them the opportunity to create meaning from their experiences and would allow them to serve as a role model for others struggling with similar issues:

“I know that people want to hear mostly from a person who has experience. Someone who has also had struggles. I would love to help those people, tell them my struggles also.” –Male, mid-30s, patient

Despite broad acceptability, participants did acknowledge possible barriers to implementation of the peer role. One potential barrier identified in implementing a peer model was HCW stigma towards SUD, such that HCWs may act in stigmatizing ways towards peers. For example, a few HCW participants expressed concern that someone with prior SUD would not be able to handle working with patients with active SUD, as it may threaten their personal recovery:

“Maybe they come across something that affects them. I don't know, maybe a reason why they started using drugs in the first place... maybe there'd be triggers all around them that would maybe cause them to relapse.” –Female, late 20s, stakeholder, HIV care

Other potential barriers included lack of private space in community settings, social and environmental factors that continue to contribute to relapse, and some HCWs perceiving that peers would be competing for their responsibilities (i.e., “take their place”), demonstrating the need for clarity for the peer role within the broader HIV care team. Further, it was noted that the peer role should be paid, yet one stakeholder noted that the peer may then experience separation from their community in a paid position, while also potentially not being considered fully part of the health care team.

Individual and systems-level roles for peers and key characteristics required for role success

Both patients and stakeholders felt that peers could provide both HIV adherence support and SUD recovery support and serve as a bridge between patients and health care teams. Sufficient rapport between peers and patients and peers and health care teams was seen as critical to the success of these roles. More specifically, patient and stakeholder participants described roles for peers within a community-based HIV care team to better support patients to engage in HIV care and to support other HIV providers to engage more effectively with patients. They thought peers could support patients by providing reminders to take medication, attend HIV care appointments and by offering SUD recovery support. One patient participant shared:

“I could gain information on his experiences, like what he used to do and how he recovered from that...maybe there are things that the person know that I do not know yet. And possibly his experiences, his past experiences he could share those with me and I could learn from them.” –Male, early 40s, patient

In terms of systems-level supports, patient participants identified that peers could coach patients to advocate for themselves at HIV care visits, particularly in how to manage anticipated SUD stigma from HCWs or to help advocate for the patient with individual HIV providers. In this way, a peer would act as a bridge between patients and the HCW. One patient shared:

“Even if you missed one day, you become scared of going because you know you are going to be shouted at, you will be asked a lot of questions, if there could be someone like that [peer] that you could talk to and someone who will at least understand you and that person could be the one who speaks directly with the nurses.” –Female, mid-30s, patient

Stakeholders also identified a role for peers that involved helping providers better understand how to work with PWH with SUD. They provided suggestions for how peers could work alongside HCWs to enhance patient care:

“The combination of both professional individuals as well as individuals in recovery…the registered individuals sort of come from a textbook environment…they come with the theoretical knowledge, but it's the individuals that have gone through recovery that understand the nuances and challenges of recovery…that really gives a more well-rounded package…it does help to have to have a recovering individual that can support the professional person…offer their perspective in sessions.” –Male, late 30s, stakeholder, SUD care

Additionally, some stakeholders thought that peers could play a role in educating other HCWs in how to effectively communicate and engage with PWH with SUD in non-stigmatizing ways:

“They are you know experienced...they just have to teach us how to approach maybe that patient or problem or whatever...teach us the basics and what to say and not what to say…Because sometimes the [HCW’s] attitude can also you know, change that person [impact the patient] and [lead to them] not hearing us.” –Female, early 40s, stakeholder, HIV care

However, several stakeholders made suggestions that were likely unrealistic for the peer role, including getting the peer provider to address broader social determinants of health, social problems, and food insecurity.

Regarding characteristics necessary for peers to be successful in their role, patient and stakeholder participants almost uniformly agreed that the peer should have lived experience of SUD and SUD recovery, which they considered critical to their ability to support patients. Most participants reported that the peer should ideally also be living with HIV, though some stakeholder participants thought it would be sufficient if the peer had adequate information on living with HIV or had a close relationship with PWH. One provider said:

“And if that person themselves is HIV positive, and adheres…they can be open about it…It just makes it more likely that someone would adhere…or be convinced to actually do it, because they've seen it, they've heard it, and the person is right there…evidence in front of them.” –Male, late 30’s, stakeholder, SUD care

Apart from fluency in the same language, socio-demographic characteristics were seen as less important characteristics on which to match peers and patients. Language skills were seen as critical so that peers would be able to speak to and build rapport with patients, and some noted the importance of matching peers and patients on both race and language:

“Sometimes when you want to talk about something, it's better to talk about it in your own language you know? If you are working in a Black community, let a Black person work there, somebody that they will understand...So if you are explaining something in your own language, then the person will understand you very well...you will also understand that person very well because it's in his or her own language. You must also consider race when it comes to hiring these people.” –Female, late 30s, stakeholder, HIV care

Gender and age were mentioned by some participants as important for building rapport or for peer safety, mostly by stakeholders but also by some patients. Findings were however mixed; with other participants stating that age and gender should not matter when recruiting peers or matching peers and patients.