The key themes from the data analyses included, individual- and health system- related barriers to HIV testing, PrEP, and PEP, and how these may be addressed through community-wide educational efforts, health policies and health provider capacity-building strategies and intersectoral approaches.

“Being HIV-positive you lose everything” – fear, health beliefs and stigma represent prominent barriers to HIV testing

At an individual level, fear was frequently cited as reason why ACB community members didn’t access HIV testing. Several focus group participants reported that since HIV continues to be perceived as a death sentence, individuals often avoid getting tested.

They are scared to learn what their status is because he knows that HIV it kills and then maybe that the person can’t accept living with that virus. That’s why he doesn’t even want to know, even want to talk about screening and it’s why I can say that really, it’s what makes it that our Black community doesn’t even want to go [get] tested and there is a lot that incre… that it increases every year (Female, Toronto, FG4).

Among ACB individuals who were temporary immigrants or refugee claimants, the fear of testing extended to the fear of deportation if there is a positive test.

So some people even think that maybe if your HIV status could be a reason for you being denied coming into Canada, which is wrong (Female, Toronto, FG3)

And also, fear in regard to immigration status, some people have a clause that if they are found to be HIV positive they think that they can be deported back to their home country (Female, Ottawa, FG2).

Health beliefs were a barrier to medical help-seeking in general and to HIV services more specifically. For example, there are perceptions among ACB community members that individuals do not typically use preventive health care services, such as testing. Gender differences in help-seeking behaviours were also noted. As a focus group participant explained,

I find it’s very hard to get your Black man to go to the doctor. I have to say that, you know. They are very … I don’t know what they’re afraid of. They have to be really really sick before they decide. Say, you know, woman on a whole, we say I have a check-up, let me go see my doctor. Maybe they have their regular check-ups, so once a year. You would never really see a man do that. He has to be sick (Female, Ottawa, FG5).

Social norms pertaining to sexual health, mental health, sex work, and gender-based violence (GBV) also contributed to stigma and acted as a barrier to HIV-testing.

Those social norms could be the difference between whether somebody gets tested or not. Whether someone’s direct close community is encouraging them to get tested or not (Female, Toronto, FG3).

The stigma associated with HIV was very strong. As one focus group participant explained,

I said what my African brothers and sisters do not understand is that when you come from the Caribbean and you test positive in the Caribbean, you lose everything. You lose your house. You lose your job. You lose everything. You don’t get anything. Whereas in Africa, there is so much mobilization and there’s so much NGOs that is run by HIV positive people that the stigma that they … people come in. They don’t get the same stigma as the people from the Caribbean; right? So I think there’s a lot of stuff we have to look at and who’s getting access and why the Caribbean people are getting left behind (Female, Toronto, FG6).

Focus group participants spoke of community members who, after sharing their HIV status with people who were part of their support networks, were subsequently rejected and stigmatized to the extent that their basic needs could no longer be met.

I think there’s a lot of stigma when it comes to HIV. So, there’s a lot of … because most people feel like maybe if I go and test it’s maybe, like a death sentence. But also, even among their peers, and this is from a fact, when people say, there are a few people who have come out and I think that also has been like an encouragement. So and so has tested and you know, they are living their life, but also you know, there’s a lot of stigma when it comes to the subject. (Female, Toronto, FG3).

It was further recognized that people’s experiences varied according to their social locations. Several focus group participants noted that ACB communities are extremely diverse in terms of their economic, political and social identities including, socio-economic status, education, immigration experiences, countries of origin, faith and language fluency, etc.

“A love-hate relationship with health care” – health system barriers to HIV-testing abound

Several focus group participants expressed concerns about racism and the lack of cultural competency within health systems. For example, one participant raised the issue that many providers do not understand the lived experiences of their ACB patients.

I have a love-hate relationship with health care. I personally don’t go to emergency and I don’t go to drop-in clinics. I have to see doctors I know. Because we have a lot of existing trauma, whether it’s trauma that’s generational trauma from you know, colonialism, we have a lot of trauma from … other Black people have a lot of trauma from other things. But trauma from even migrating to this country. And sometimes … and abuse and other things and when you go to seek health care and you start explaining this to people who don’t really understand where you’re coming from, it’s challenging (Female, Toronto, FG6).

Several focus group participants described challenges in accessing a regular health care provider. Even when ACB community members had a regular health care provider, the lack of HIV awareness among health providers was a recurring theme. As one focus group participant explained,

So I think there’s a lot of education that needs to be done with primary care physicians and people who are offering– or doing the tests themselves. I think that that community, the physicians, need additional opportunities for education themselves because they’re not– they may not be exactly aware of what’s available (Female, Ottawa, FG5).

Some participants described being encouraged to go for testing based on their social location and identity, and others being denied testing based on the judgements of health care providers. Other focus group participants described the process of testing as degrading and insensitive. For example, participants described having to repeatedly explain and prove that they had certain symptoms and why testing was needed.

Is it respectful to ask a third age (‘senior’) person how many sexual partners he has… why not take care of him instead of asking him this kind of question? Why ask me the reasons why I want screening tests every six months? This question is inappropriate. If I want to do screenings regularly, it’s my problem, full stop? (Moderator, Ottawa, FG4)

Focus group participants identified confidentiality as a major concern when going for HIV testing. Several participants disclosed that they were not informed about testing prior to it being carried out and that confidentiality was essential to ensure emotional, physical and social safety.

Several focus group participants named systemic racism as a key barrier to HIV care. As one participant explained:

Unless we start addressing systemic racism in a way that is actually effective, the stigma piece around HIV testing with ACB community will always be there (Male, Ottawa, FG2).

Compared to the United States and other countries, focus group participants believed there were fewer HIV testing options available in Canada.

You know, Canada is really behind when it comes to testing. In the States and other countries there’s just much more options of testing, you know, and they’re much used to going to gay prides where there’s HIV testing done on location and things like that. You know, the notion that it’s 2020 and it’s only done in certain locations or certain times, it’s really antiquated (Male, Ottawa, FG3).

Several focus group participants recommended that testing be mandatory and/or part of a systematic health assessment, rather than optional or voluntary. As one focus group participant explained,

With education if people know that this is something that is standardized when they come to Canada, be it immigrants or second generation or third generation knowing that this is part of the standards of keeping them healthy will make the test much more accessible and less difficult to access considering the cultural considerations and the fear and stigma that can often be associated with that (Moderator, Ottawa, French, FG1).

However, other focus group participants expressed concerns about the time commitment involved with increasing the frequency of HIV testing and felt that testing should be associated with risk level, and not be mandatory.

I think you should think about your own risk factors but also I think it should just be whenever you feel like you want to be tested, I don’t think there is anything like over testing. So long as you feel like maybe you’re unsafe or you feel you’re exposed or you just feel like ‘oh, no, now at this time I want to know my status’. Maybe you went and tested three months ago, I mean, a week and they tell you come back after six months and then you go back (Female, Toronto, FG3).

Overall, many focus group participants were in favour of self-testing kits to reduce the stigma of HIV testing. As one participant explained,

I think self-testing kits would be very helpful as far as HIV testing is concerned. There’s a general sense of fear still because of stigma that comes with HIV, even in a situation where anonymity is guaranteed. And so having a self-test, it can’t get any better than that (Male, Ottawa, FG3).

“There is PrEP but who can access PrEP?” – access to information about PrEP is limited

At the individual level, accessibility issues such as lack of information and location were identified. Many focus group participants were not aware or did not have direct experience with the use of PrEP/PEP treatments. One of the main reasons why these treatments are not better known in ACB communities is because they were originally marketed as a drug for white gay men.

So even when we go to PrEP, which is the pre-exposure, it’s supposed to be as gay men say, gay White people say, it’s supposed to be like birth control. You take it. You don’t get pregnant (Female, Toronto, FG6).

There is PrEP but who can access PrEP? Who is PrEP for? How many Black people access PrEP? How many Black people know about PrEP? How many Black people can access PrEP even if they know about it? What are the questions Black people will be asked? One of my doctor friends runs a PrEP clinic. And every time he tells me I don’t see any Black men. I don’t see gay Black men (Female, Toronto, FG6).

Focus group participants also noted that very little research has been conducted on the use of these treatments in ACB communities, and even less research has been conducted with women, which may deter Black women from feeling like this is something that they can inquire about for themselves. As a female focus group participant went on to say,

When we look at the HIV landscape and everything, are Black women disproportionately affected by HIV more than other women? And there has never been proper research to even look at side effects of PrEP for women, PrEP and pregnancy, PrEP and all these things. So PrEP is not even for Black women (Female, Toronto, FG6).

“Just give it to me because you just believe that I need it” – health system barriers to PrEP/PEP are common

Focus group participants noted that while these treatments are very effective, they are not covered by public health insurance, and private health insurance plans are very costly, so these treatments are not affordable to many people.

Focus group participants who accessed PrEP treatment described experiences of feeling stigmatized when requesting this treatment. As in the case of HIV testing, ACB community members resented the need to continually prove their need for treatment.

Don’t ask me for ID. Don’t ask me for health card. Just give it to me because you just believe that I need it. I wouldn’t come here if I didn’t need it. I think that would only … that would help in terms of how we as Black people access PrEP (Female, Toronto, FG6).

Even to access that PrEP you have to go and disclose … and stigma is a big issue. Because if I have to go and say I want PrEP, it means I am disclosing my partner’s status. People don’t want to do that. Because of stigma, a lot of people even when there is a discordant relationship, it is top secret. They won’t tell anybody else because if anybody else knows, it’s going to be a whole conversation and the stigma and everything. (Female, Toronto, FG6).

Focus group participants identified numerous multi-level strategies to address HIV needs and reduce barriers to testing and care, including community-based, educational, health provider, organizational and innovative, inter-sectoral strategies.

“Okay, this is an issue we have in the community, everyone let’s get involved” – community-wide educational efforts are needed

The need for community-wide educational efforts was identified as a way to increase to address stigma, increase individual and community HIV critical literacy about risk, prevention and available supports, and to normalize testing, treatment and disclosure.

We need to normalize the fact that we need to disclose our status about whether we have contracted HIV or not, we need to normalize conversations about this between, in the community and also to address the problem of HIV (Reporter, Toronto, FG1).

Some focus group participants spoke about the importance of critical health literacy in order to be able to advocate for themselves in the health care system and make informed decisions.

..to change how Black people’s specific contact with health system by educating Black people in how they have to communicate with their health care providers, how to self-advocate for themselves when they go to access health care, how to have knowledge before they go to access health care (Female, Toronto, FG6).

Several focus group participants noted that informal support systems, such as friends and family, must be involved in encouraging HIV testing and treatment.

Some participants perceived a decline in traditional ‘grassroots’ education and expressed the need to increase the availability and accessibility of HIV information in places that ACB communities frequent, such as community centers, stores, schools, and faith-based organizations.

Instead of us waiting for people to come to the agencies to access services, reach out to them, go where they are, go back to the basics of how people used to do grassroots outreach because that was working and there was the sense that currently– AIDS service organizations or the services out there become too corporatized and going back to the basics of grassroots and that way we will be able to do a better job at doing HIV prevention and education (Female, Toronto, FG1).

The type of features focus group participants wanted to see included targeted, creative and culturally-specific messaging.

Are we targeting young Black males, young Black youth. Are we targeting new immigrants? Are we targeting, you know, people who are aging, right, and it has to be a different message, you know, for the different communities (Male, Ottawa, FG5).

We have PhDs but we don’t like to read some pamphlets or messages like that. So but when you package it into a drama, into a song, into a poem, we actually … or into something that is a … that has pictures and colourful, we will be able to consume it better than when it is a black and white five-page document. We really get tired of reading it, you know. If you package it into a nice WhatsApp message we’ll actually be able to consume it better than when you give me a three-page document (Female, Ottawa, FG6).

Several focus group participants spoke about the importance of developing interventions and sharing information specifically targeted for ACB communities.

So when they came to share the information, they said my name is Jack Jones, I’m a gay person and I’m a gay White man and I’m very privileged. And then they say I am on Truvada. I take Truvada every day because I can afford it so that I can protect myself from HIV and I can have sex with anyone that I want. Well for me, this person is so privileged. Why is he coming to talk to us anti-racism anti-oppression? Because he thinks because he is a gay man he is actually oppressed or has experienced oppression but already he said I find myself very … very privileged. I live in a loft, a loft in Toronto, whatever, anyway, so all that. For me I actually, I closed down. I stopped listening (F, Ottawa).

Other focus group participants recommended the use of positive, strength-based messaging to normalize HIV and promote HIV testing as part of a regular health exam.

So I think kind of our way of promoting testing as a strength or as a positive thing to do is perhaps more about where we have to really go. Right? Why this is good for you as opposed to ‘oh, you know, you’ve had unsafe sex and you might be positive and you don’t … ’ like all the kind of negative messages people get. That reframing things into you know, how this helps you is– I think that’s really important to think about (Female, Toronto, FG3).

This could include the use of positive, vocal, role models in community education and awareness initiatives to promote HIV testing and dispel myths about people living with HIV. For example, community leaders who are open about their HIV status or peer leaders.

The young man that you brought from the Black community, I don’t remember him, but he said he was born with HIV and he was 19 years, very vibrant, he was such an inspiration. I would hear his story and say,’ you know what, I want to go and test’. Because I see someone else who is living a wholesome life and so you know what, what does it cost me? Let me go and test, I may as well still live a wholesome life like [Name 1] is or anybody else is (Male, Ottawa, FG3)..

In addition to increasing the availability and accessibility of HIV educational materials, several focus group participants recommended expanding activities to include media/social media messaging. For example,

Say for example like when you are going on [public transportation] or everywhere there are all these adverts which are showing ‘oh, if you have a heart issue, or if you want to stop smoking, or if you have been beaten or you know, they are encouraging people like to go and take that step. But I have never, I think I only saw once, an advert on TTC talking about HIV or even just even programming on radio or TV. There is no like a robust programming that encourages people you know, to go out there and you know, like say ‘okay, this is an issue we have in the community, everyone let’s get involved.’ (Female, Toronto, FG3).

“I think the options available need to be expanded” – health policies and health provider capacity-building strategies are needed to increase access to testing and care

Focus group participants identified numerous strategies to improve health provider knowledge and competency, and reduce organizational HIV testing barriers and increase HIV testing options.

Several focus group participants made recommendations for the delivery of culturally competent HIV information and care. Foremost, health providers need information and training on HIV to reduce stigma among their patients. As one focus group participant explained,

Reducing that stigma so that all the levels of health care professionals are comfortable talking about it so that they are hearing about this information from their doctors, from their nurses, from their community workers (Reporter, Ottawa, French, FG1).

Another focus group participant highlighted an approach currently underway in the United States where health providers engaged patients in in-depth discussions about HIV and health.

If you test negative, there should still be a conversation with your health care provider in terms of okay, so why did you come here. What was your exposure? You came for a reason, right. So you have that conversation about preventing HIV in the future, even if you test negative, right. So health provision should be aware of that and that is the place where you can have these conversations around PrEP, around PEP and all of these things that we’re talking about. So even if you’re testing negative, you’re assessing, you know, somebody’s you know, future risks and future options and having that conversation. Not that you test negative so go home. Everything is good. Which is what we normally do, and we focus on the person testing positive, right (Male, Ottawa, FG5).

There was general consensus among focus group participants that access to HIV testing needs to be greatly expanded to address intersectional issues and increase availability to demographically and geographically diverse ACB communities.

Whether you’re targeting young Black youth, or you know, older ACB folks, whether they’re first generation or have been here for a long time. So even in the ACB community, we have to have different testing strategies based on the particular demographic that you’re trying to target. And also, you have to go geographically to where people are to make it more accessible (Male, Ottawa, FG2).

Taking the HIV testing into some of the African, Caribbean, Black events. So we need to work proactively, taking the services closer to where our clients are. I think that helps us to remove some of the barriers and help our community members access our culturally appropriate services (Male, Toronto, FG6).

Several focus group participants were in favour of increased access to self-testing in Canada to reduce some of the fear and stigma associated with accessing HIV testing. As one focus group participant explained,

So, you know, the options available are rapid test, going to a clinic or going to a community health center, I think we also need to expand on the types of options available for testing, like having home kits, so that there are barriers to actually going to a physical space to get a test for some people and by offering a mail, a test that you can receive in the mail at your home that might be an option for some people and maybe a better option to maintain confidentiality and reduce stigma and things like that (Female, Ottawa, FG2).

Many focus group participants reported that their health care providers had never discussed PEP or PrEP with them. Clearly, more training is required for health providers on these treatments, especially for those working in primary care or first point of contact services.

So I think there’s a lot of education that needs to be done with primary care physicians and people who are offering– or doing the tests themselves. I think that that community, the physicians, need additional opportunities for education themselves because they’re not– they may not be exactly aware of what’s available (Female, Ottawa, FG5).

Unless you’re involved in work in HIV and STIs, if you go to a general doctor, GP, unless they’re a specialist, they probably will not present all the options available and the information because they may not be aware of it, because they’ll have to look it up on their computers; right? (Female, Ottawa, FG5).

“We are going to have our own organizations but we have to have allies” – successful strategies need to be intersectoral

There was a general recognition among focus group participants that collaborations are key to addressing educational and service related gaps, including between ACB and non-ACB, HIV and non-HIV, and health and community/school provider groups.

Focus group participants recognized that partnerships with other non-ACB providers are important to supplement the services and interventions provided by ACB communities because resources in the ACB community are often limited. As one focus group participant explained,

We are going to have our own organizations but we have to have allies. We have to have the people with the money, the people who are making decisions as our allies so that we can work together and we are going to tell them how they are going to treat us and how they are going to work with us. So allies are going to be very important, much as we will have our own organizations but if we put … if we have organizations and we are putting ourselves in a corner and we are excluding people who actually have the resources. So how can we develop a circle of care so that our allies understand us and they work with us because we cannot all be Black people … all Black doctors, all Black nurses, all Black social workers (Female, Ottawa, FG6).

Focus group participants described the need for collaboration between ACB community agencies (i.e., non-HIV) and HIV agencies specifically serving people at risk or living with HIV, for the provision of HIV information and support.

I think we could build more partnerships. Maybe we need to build more partnerships with people who we don’t know. So non-HIV organization and HIV sector organization and bring them into this partnership. And do the work together (Female, Toronto, FG6).

So I know that, for example, sometimes there’s somebody at Malvern Health or Lawrence or wherever that are tested positive or want information about HIV or have a partner that is positive and they’re not willing to go down to ASO. So having the ASO staff goes out to those places. I think that works (Female, Toronto, FG6).

In addressing educational needs, especially among the school-aged population, focus participants identified the school system as a preferred venue for promoting information on HIV to students and educators, but this needs to be done in collaboration with ACB community agencies. This is evident in the following quotes:

Can you guys team up with the school system to do prevention with the little kids out in the community because not all of them go to churches…? The best way to reach them is probably to become an advocate in one of those school boards. Then you can have a team going through school system and talking to them. I think that’s the best way to reach the young kids. (Male, Toronto, FG2).

We should also target to have probably within the curricular, at the university level, like probably Education 101, so that we get to sensitize people. So health education or health and social education is more in schools (Male, Ottawa, FG5).

The success of these types of initiatives, however, were largely dependent on the receptivity of individual school principals.

I think that’s what Public Health is trying to do. There’s some schools where it’s very easy to have Black CAP come in with, you know, with us, or even on their own … and on their own depending on the principal. You know, principals are really gatekeepers of who gets to come into the school. So if they get a Public Health endorsement, they’re usually, you know, that ups the ante for them. It’s just the way the system works (Female, Toronto, FG6).

It was widely acknowledged that intersectionality must be considered in the development and implementation of all HIV strategies. As a focus group participant explained,

Black people organize in different ways, and I think that’s something that [Name 4] was talking about is about our own experience when we come here. If I look at Facebook groups and other places, we do organize in different ways. We organize religious … religiously, we organize, socially in like in coming from different country. So we have to really go back to how we socialize because Black people are diverse. We can’t just be one heterogeneous group and we are seen as this Black. We have to really clearly look at those social organizations within Black people, within our own diversities and ensure that this knowledge goes there (Female, Toronto, FG6).

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