Experiences of Migrant People Living with HIV in a Multidisciplinary HIV Care Setting with Rapid B/F/TAF Initiation and Cost-Covered Treatment: The ‘ASAP’ Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Research Question
2.2. Design
2.3. Data Collection
2.4. Data Analysis
2.5. Patient and Stakeholder Engagement
2.6. Ethics
3. Results
3.1. Participant Demographics at Enrollment
3.2. Categories
3.2.1. HIV Diagnosis
3.2.2. Linkage to HIV Care
3.2.3. Treatment Initiation
3.2.4. Retention in Care
3.2.5. Adherence to Treatment
3.2.6. Viral Suppression
3.2.7. Perceived Health-Related Quality of Life (HrQoL)
4. Discussion
4.1. Diagnosis: Dominated by Distress & Immigration-Related Concerns
4.2. Linkage: A Time of Navigation Challenges and an Opportunity to Connect with Clinicians
4.3. Treatment Initiation: Rapid ART Is Satisfying, but Concerns Exist
4.4. Retention in Care: The Burden of Challenges beyond HIV and Importance of Patient-Centered Care
4.5. Adherence to Treatment: The Heightened Importance of Taking Control over HIV
4.6. Viral Suppression: Characterized by Peace of Mind and a Sense of Control
4.7. Perceived Health-Related Quality of Life: Promoted by Social Networks and Personal Activities
4.8. Strengths and Limitations
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Participant # | Age | Sex | Sexual Orientation | Region of Birth | Immigration Status | Health Coverage | Education | Paid Employment Status | Interviews Completed | ||
---|---|---|---|---|---|---|---|---|---|---|---|
Week 1 | Week 24 | Week 48 | |||||||||
1 | 41–50 | Male | Heterosexual | East Asia | Visitor | No or Low Coverage | College/CEGEP/Technical Degree | Unemployed | |||
2 | 21–30 | Male | Bisexual | East Africa | International Student | No or Low Coverage | University | Unemployed | |||
3 | 21–30 | Female | Heterosexual | Southern Africa | Asylum Seeker | Sufficient | University | Paid Employment | |||
4 | 51–60 | Female | Heterosexual | Southern Africa | Asylum Seeker | Sufficient | College/CEGEP/ Technical Degree | Unemployed | |||
5 | 41–50 | Male | Homosexual | Southeast Asia | Asylum Seeker | Sufficient | University | Unemployed | |||
6 | 21–30 | Male | Homosexual | North Africa | International Student | No or Low Coverage | University | Unemployed | |||
7 | 31–40 | Male | Homosexual | Latin America | Asylum Seeker | Sufficient | College/CEGEP/Technical Degree | Paid Employment | |||
8 | 21–30 | Male | Bisexual | North Africa | Temporary Worker | No or Low Coverage | University | Paid Employment | |||
9 | 31–40 | Male | Bisexual | Southern Africa | Asylum Seeker | Sufficient | University | Paid Employment | |||
10 | 21–30 | Male | Homosexual | Latin America | No Status | No or Low Coverage | University | Paid Employment | |||
11 | 41–50 | Male | Homosexual | Latin America | Visitor | Sufficient | University | Unemployed | |||
12 | 21–30 | Male | Homosexual | East Asia | International Student | No or Low Coverage | Secondary/Professional Degree | Paid Employment | |||
13 | 21–30 | Male | Homosexual | Southeast Asia | Visitor | No or Low Coverage | Secondary/Professional Degree | Unemployed | |||
14 | 21–30 | Male | Heterosexual | Caribbean | Asylum Seeker | Sufficient | College/CEGEP/Technical Degree | Unemployed | |||
15 | 51–60 | Male | Homosexual | Western Europe | Naturalized Citizen | Sufficient | University | Unemployed | |||
16 | 31–40 | Male | Heterosexual | Caribbean | Asylum Seeker | Sufficient | University | Unemployed |
Category | Illustrative Excerpt | Contributing Participants (n/16) | Contributing Interviews (n/32) |
---|---|---|---|
HIV Diagnosis | |||
Initially experiencing distress Feeling:
| “I could not believe it. I came [to Canada] with hopes, I had a dream. And I did not believe it […] I blacked out.” Participant #5, W1 | 10 7 6 6 4 | 14 8 7 6 4 |
Questioning the impact of HIV diagnosis on immigration | “I was very concerned about how the diagnosis might impact my permanent residency process. I thought I had to go back to my country.” [Translated from French]—Participant #8, W1 | 6 | 6 |
Fearing stigmatization (from clinicians, family, friends, and/or community members) | “I just worried about [how] to tell people around me, for the first thing.”—Participant #30, W1 | 4 | 5 |
Uncertainty about HIV testing requirements for migrants | “Normally, the work permit does not require a medical visit. […] It was not mandatory to have a medical examination. Me, I wanted to do [the examination] for if I find a volunteer [position] in a hospital [so] I can work without any problem…” [Translated from French]—Participant #6, W1 | 3 | 3 |
Linkage to HIV Care | |||
Facing psychosocial challenges beyond HIV
| “I feel dreaded, maybe I wasn’t eating well. I was worrying about so many things that, so many financial challenges there… I haven’t seen doctors for months, years maybe, because I don’t [have] insurance or anything and I couldn’t afford it.”—Participant #4, W48 | 12 11 8 6 4 | 23 16 10 10 4 |
Navigating the health system with difficulty
| “You have to understand as a foreigner […] for all the [health] system running in North America, I have no clue, no idea … And then the language problem as well, ok … Because especially for me, I’m a foreigner. I don’t know the procedure [for accessing care] or the round, you know.”—Participant #1, W1 | 15 15 9 | 21 20 12 |
Humanizing clinical encounters Feeling:
| “[The care I received] was perfect, I felt loved, cared for. I felt understood, for the first time. Everything that happened to me was not planned. I did not have a plan to take care of this. Then, when I arrived here, I had it, I had a plan. I met Dr. [name omitted] and the other people and they told me it was important to start care, and they told me how it would happen. I never felt any safer than I felt around these people. I felt helped […]”—Participant #4, W1 | 14 12 10 7 5 3 | 19 15 12 7 6 3 |
Being reassured about living with HIV | “Well, before I had misinformation, bad ideas about this disease. But when I came to the hospital, [the health professionals] calmed me down. They said to me, ‘There’s nothing to worry about. It’s just that you’re going to have treatment and then you’re going to be fine and you’re going to live your normal life.’ With their behavior, how they talk to me, all that was good. I left the clinic really happy. […] There was a big difference between how I entered the clinic and when I left the clinic.” [Translated from French]—Participant #6, W1 | 12 | 19 |
Receiving personalized health information | “And also, I’m always asking like: ‘My blood pressure, is that a good thing?’ And they are like: ‘Yeah, yeah, that’s good.’ And I always have questions and they answer very well … Because it’s not like, you know when you ask a question and then somebody gives you one answer one way. No, they actually explain.”—Participant #3, W1 | 13 | 17 |
Quickly accessing care | “In fact, it went very quickly, I received a call telling me that I had to show up here. I was given the news and it was very difficult to take at that time. But very quickly, I think the next day or two, I had an appointment. And I met everyone, the social worker, the nurse, the doctor.” [Translated from French]—Participant #2, W24 | 10 | 12 |
Treatment Initiation | |||
Being satisfied with treatment Due to:
| “The medicine is really good, it’s really great because I don’t feel bad at all. I feel fine, no pain, nothing.” [Translated from French]—Participant #14, W1 | 15 11 7 7 6 6 3 3 | 18 11 8 7 7 6 4 4 |
Having concerns with starting treatment
| “[Starting treatment] was a hard decision because [when] you start, you cannot stop to take [the treatment]. But you cannot avoid the situation, you have to take it. So, you have no choice. So, personally it’s hard because I like to choose everything that I do but, in this case, I don’t have any option.”—Participant #7, W1 | 11 8 5 | 15 9 8 |
Needing reassurance about treatment safety | “The only thing for me is dizzy[ness]. Especially for the first day … So, I talked [about] this to Dr. [name omitted] again. He said: ‘The body needs time for the medication.’ So, it’s have to be take time.”—Participant #1, W1 | 8 | 13 |
Dissipating side effects over time | “Well the first 2 days I was in a lot of pain. I think, like, my body was getting used to it, but I was really nauseous. And I had nightmares. A lot. […] it was intense at first, but now it’s okay.” [Translated from French]—Participant #2, W1 | 7 | 7 |
Retention in Care | |||
Facing psychosocial or health-related challenges beyond HIV
| “Yeah, not having enough money, that is a barrier. So, I couldn’t even go, if I wanted to go get some fruit or something, the money would challenge me. I would just stay and do with whatever I had. […] Financially, if there is some organizations that can help give you something like a coupon to go get some food at [the grocery store], whatever, I would welcome that. But I don’t have that kind of access.”—Participant #4, W48 | 16 12 12 12 13 11 8 | 31 22 20 18 17 13 12 |
Feeling empowered to self-manage HIV
| “I got control of my health. So, if I come here then I understand: ‘Ok, my CD4 count is 715.’ Then I know: ‘Ok, now I know that [I’m] ok. I’m a step ahead. My health is excellent, so I have to maintain it.’ And what is CD4 count? That’s what I’m going on Google. On Google ‘what is CD4 count’. Then I know: ‘Ok. These are the white blood cells and bla, bla, bla. And what is viral load?’ That’s how I do it. So, yeah, I feel good about it. I feel like I’ve got control of my health.”—Participant #9, W48 | 15 13 13 6 | 31 29 21 6 |
Humanizing clinical encounters
| “I think I like the attitude of the staff. You know, they’re always like happy and excited to see you and talk and listen. It’s more like they’re concern[ed] about, you know, for you as a person not just like as in a patient. Ok, you know, looking at the time. It’s not like that. It’s like they have time for you. I think that’s really good because, you know, you don’t feel like you’re inconveniencing people or anything like that. So, that makes me look forward to the visits and also all the questions I have, they get answered and they get explanations. Because naturally, I’m anxious on my health questions and things, and I always get them answered.”—Participant #3, W24 | 12 9 10 10 7 8 7 | 25 21 20 15 14 12 9 |
Enjoying smooth operations in the clinic
| “Personally, I find that the system you have adopted, especially for follow-ups with foreigners without [provincial health insurance], is really effective. […] And I also like the fact that the main person I come into contact with is either [the study coordinator] or [their HIV physician] only because they are the main people that are directly related to care, and who I think are, for this team, the main players in what you call caregivers. I like the format that even if I know there are people who are ‘back-up’ like social workers or nurses, there are still only two people who come into contact with me. Because, from the moment there are too many people who intervene, it is more difficult to manage, you see. And I think that precisely for a patient, it is not what he would want that there are too many things to do. I think that’s just like enough for it to be effective…” [Translated from French]—Participant #2, W48 | 11 9 8 8 7 4 | 23 16 14 14 8 4 |
Receiving holistic care | “[The healthcare professionals] have different responsibilities because, you know, they all have different experience in their professions. So, like, for example, I have a social worker who can help me like: ‘Oh, you can go to this if you need food, there are food banks or this, this.’ And then, the doctor will tell you about like, you know, what questions I have about health and that’s good. So, it’s like they both have different… Everybody has their own [role]. Just like, you know, how the body like the head has its function and the hands has its function, I feel like it’s like that. And then together they make like a complete.”—Participant #3, W48 | 12 | 20 |
Wanting more frequent contact with healthcare professionals
| “I know that you guys are busy but maybe when I go after a month or so, just text, email: ‘How is everything?’, whatever. It would also add more to my confidence as well, knowing there are people out there.”—Participant #4, W48 | 11 10 4 4 4 | 20 16 6 6 5 |
Dealing with HIV-related psychological distress | “Taking medication is important to physical health, but my social and mental health is still not good.”—Participant #5, W24 | 11 | 17 |
Sharing responsibility to manage HIV
| “I feel 100% responsible. I’m on top of my game. I’m doing what’s right. I don’t forget. I don’t need an alarm, my brain I programmed it. It’s [a] mindset […] [The healthcare professionals are] 200% plus responsible for all this, yes. They’ve helped me a lot in achieving [undetectability], brought my confidence […] Everybody, the whole team involved in this, I appreciate what they have done. They have made me feel comfortable. They’ve never made me feel any different. Like I’m when I walk in, I’m like I’m coming home. So, this has really driven me to commit to it. If I [was] feeling judged or didn’t feel wanted, or looked at in a different way I wouldn’t have committed. So, they’ve helped a lot.”—Participant #4, W48 | 9 9 8 | 9 9 8 |
Adherence to Treatment | |||
Being satisfied with treatment Due to:
| “Oh, yeah, yeah, yeah! Absolutely! Yeah, there are a lot of changes. I feel energetic. I don’t feel that fatigued. I feel confident. I see life with HIV. So, yeah definitely things, they have changed […] on the psychological side, it’s been so positive […] now I feel much better. My emotions they’re not as how they were before. So, yeah, I feel much better […] now I feel more calm. I feel like I’m at the right place. I’m getting the right treatment…”—Participant #9, W24 | 11 8 7 6 6 5 4 4 | 23 14 10 9 7 7 5 5 |
Feeling resilient and responsible
| “I quickly got into the habit of taking [my HIV medication] because that’s what I can do to keep my partner healthy and safe. So I take it and for me it’s positive, it allows me to keep discipline and control over what’s going on. […] I don’t think I forget, or else it happens very rarely […] Then too, there is my discipline. I’m studying and working, so I can’t, I don’t have time to think about it, I maintain my discipline and I take my medicine and go to consultations, and the team is there for me too. So I don’t think about the disease anymore, I do what I have to do and I don’t have to think about it. It’s just a routine for me.” [Translated from French]—Participant #2, W24 | 11 6 4 | 18 8 4 |
Viral Suppression | |||
Finding more peace of mind since becoming undetectable | “Now it’s more quiet like more relaxed […] It’s like less anxiety […] Because now I know I’m undetectable so, it makes me feel like: ‘Ok, you are doing it well. It’s part of your routine. So, you are like well disciplined. So, you are doing something good for yourself.’ So, it’s a big difference. Like when I start, I was scared like: ‘Oh, maybe I’m not capable but I have to do it. I need to try it.’ And now I know I’m capable so it’s like: ‘Ok. It’s a really, really big change.’”—Participant #7, W24 | 5 | 6 |
Perceived Health-related Quality of Life | |||
Being helped by a supportive social network | “Everyone around me just like told me to live a stronger and don’t think so much. They always support me […] Because I have a few close friends that I [can] talk [with]. Yeah, so everyone like [comforts] me and yeah, excepts [me].”—Participant #13, W1 | 12 | 16 |
Deciding to improve lifestyle habits since diagnosis
| “My quality of life is getting better because now I’m conscious. I was living carelessly and I cannot do it anymore. So it will improve my quality of life. This is a lifetime process and I need to make changes. I am reading books and information to know if I eat right so my immune system is helping me. I know this is all for the better.”—Participant #4, W24 | 9 7 7 5 5 | 15 10 8 7 6 |
Wanting a long, healthy, and normal life | “I hope to be healthy and be able to live normal. I still have my hopes and dreams and I hope that the treatment will help me achieve them. I just wanna be healthy and normal. I don’t ask for [more] benefits.”—Participant #5, W1 | 11 | 14 |
Feeling better physically and mentally since starting care and treatment | “In fact, everything that I had a problem with related to my physical health was related to the virus. […] Because I was diagnosed, I think, a little too late. […] so when I started taking the medicine, well all those little things that were bothering me [with] my physical health went away. So inevitably my mental health has improved […]” [Translated from French]—Participant #8, W48 | 8 | 15 |
Fostering quality-of-life through activities | “I think I have a good quality of life. I work. I pay more attention to what I miss. I exercise. I run three times a week. I think I improved on that.” [Translated from French]—Participant #2, W24 | 7 | 8 |
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Arora, A.K.; Engler, K.; Lessard, D.; Kronfli, N.; Rodriguez-Cruz, A.; Huerta, E.; Lemire, B.; Routy, J.-P.; Wittmer, R.; Cox, J.; et al. Experiences of Migrant People Living with HIV in a Multidisciplinary HIV Care Setting with Rapid B/F/TAF Initiation and Cost-Covered Treatment: The ‘ASAP’ Study. J. Pers. Med. 2022, 12, 1497. https://doi.org/10.3390/jpm12091497
Arora AK, Engler K, Lessard D, Kronfli N, Rodriguez-Cruz A, Huerta E, Lemire B, Routy J-P, Wittmer R, Cox J, et al. Experiences of Migrant People Living with HIV in a Multidisciplinary HIV Care Setting with Rapid B/F/TAF Initiation and Cost-Covered Treatment: The ‘ASAP’ Study. Journal of Personalized Medicine. 2022; 12(9):1497. https://doi.org/10.3390/jpm12091497
Chicago/Turabian StyleArora, Anish K., Kim Engler, David Lessard, Nadine Kronfli, Adriana Rodriguez-Cruz, Edmundo Huerta, Benoit Lemire, Jean-Pierre Routy, René Wittmer, Joseph Cox, and et al. 2022. "Experiences of Migrant People Living with HIV in a Multidisciplinary HIV Care Setting with Rapid B/F/TAF Initiation and Cost-Covered Treatment: The ‘ASAP’ Study" Journal of Personalized Medicine 12, no. 9: 1497. https://doi.org/10.3390/jpm12091497
APA StyleArora, A. K., Engler, K., Lessard, D., Kronfli, N., Rodriguez-Cruz, A., Huerta, E., Lemire, B., Routy, J. -P., Wittmer, R., Cox, J., de Pokomandy, A., Del Balso, L., Klein, M., Sebastiani, G., Vedel, I., Quesnel-Vallée, A., ASAP Migrant Advisory Committee, & Lebouché, B. (2022). Experiences of Migrant People Living with HIV in a Multidisciplinary HIV Care Setting with Rapid B/F/TAF Initiation and Cost-Covered Treatment: The ‘ASAP’ Study. Journal of Personalized Medicine, 12(9), 1497. https://doi.org/10.3390/jpm12091497