Examining Barriers to Medication Adherence and Retention in Care among Women Living with HIV in the Face of Homelessness and Unstable Housing
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Location and Participants
2.2. Interview Protocol and Procedures
2.3. Analysis
3. Results
3.1. Storing and Misplacing Medication
There have been times where I have lost it because I do keep it hidden. Which is, actually, what I’m experiencing now…Yes I do [keep my medication hidden] …I don’t leave it in my pocket for whatever reason… Probably because I feel like if someone uses my bathroom. You know, a lot of people that use medication, do know what they are for. And that’s not for everyone to know depending on the knowledge of the person and what they know. I just don’t leave it around. So, sometimes that results in me misplacing… A lot of times people just steal this stuff because a lot of times, as I understand it, some of these medications, people will buy them on the streets… I think that’s more of a personal issue with me that I have to deal with. Because I know that that’s just my issue and that’s just what I do. But, um, not everybody necessarily suffers from that.US born, non-Hispanic Black, 43-year-old.
I had to keep them in a cooler, you know, in a cooler bag. I had to keep my meds in there. I bought it from a Dollar Tree Store.US born, non-Hispanic Black, 37-year-old.
Sometimes I would miss it because I was staying over somewhere, and my things were somewhere else.US born, White Hispanic, 56-year-old.
3.2. Privacy Issues with Those with Whom They Live
I have to be even more cautious who I share with. I mean I even have a very close friend that doesn’t even know. She probably suspects, but I’ve never shared with her because, next time you have a friend, you should be careful who you tell. Because some people they seem very educated, they seem like they know a lot of things. The moment you tell them, they’re scared! So generally, I’m not going drink, take my drugs openly. Or like in a family dinner, I have my drugs. I’ll make sure, I’ll make time to take my drugs. I’ll go to the room. I’ll be in my space, take the drugs. But I will not be open about it or keep the drugs… At the [Shelter], I request them, I always take the time to just see what is in there. It just, living this part of your life where you have to be extra cautious, keeping the information to yourself. I have learned to be cautious.African born, non-Hispanic, Black, 40-year-old.
Sometimes people would be around, so sometimes I would take it in the morning, sometimes I would take it at night or sometimes I would take it early, early morning. It varied. I can’t tell you my exact schedule but it would all vary when nobody was around, that’s when I would take it. And I know you’re not supposed to double up, but if I knew I was going to be around somebody all day I would take two of my medicines the day before.US born, Non-Hispanic, White, 36-year-old.
It’s such a task to go to a doctor’s visit, try to get some rest, and then make it down to [location of doctor which is far from current location of participant] to get the medicine. So, if I was living with someone, and they see that on a day off I have all of these extra-curricular to do, then people will start wanting to wonder, ‘Why does she go to the doctor so often? What kind of medication is she gonna pick up every month at this place?’Jamaican born, non-Hispanic Black, age not provided.
3.3. Inconsistent Access to Medication and Health Care Disruptions
What that looked like was missed application for insurance. Having a gap in medication. So that’s what that would look like and, only by the grace of God, I remain virally suppressed. But if you can’t get your medication, for whatever reason, you can’t take it and that is a hindrance to your health care and your well-being. Cause the whole month when I didn’t have it it’s like, ‘Oh my God, I don’t know what my viral load is. I don’t know what my CD4 is’. You don’t know what’s going on with your health because everything is done through labs. So those were some stressful…I mean they may have told me by email to change but I didn’t reapply. And when you don’t reapply, everything gets shut off, everything. Your food stamps, your Medicaid. Everything gets cut off until you reapply.US born, non-Hispanic, Black, 50-year-old.
And then of course with the care being denied, or the care being trampled. That’s also been a thing about me having to go and restart and get all of this set up, set up a time with the case manager and then make an appointment to see the doctor. And then go to the doctor, and then, go to the lab. You know, that also causes issues with that as well… So, that has sometimes caused me to be out of care.US born, Non-Hispanic, Black, 43-year-old.
I did have an incident where I wasn’t able to take my medicine for 7 days ‘cause I wasn’t aware that my program had expired. I got no letter, no nothing from the case managers. I wrote corporate, I asked, I explained. I heard nothing from them yet.US Born, non-Hispanic, Black, 50-year-old.
3.4. Competing Physical and Mental Health Needs
Sometimes I feel very depressed, I feel down, and I don’t feel like doing anything, sometimes I feel like ‘Oh, I’m tired of this. I’m tired of taking medicine. I’m gonna give up and I’m gonna let it slide and see what happens... And I’ll be like, ‘I’m gonna die anyways someday.’ You know sometimes people think that negative stuff, trying to hurt your own self and I do that sometimes on myself because I’m human. I feel. But I still continue, you know, going forward because of my staff like I said before and my mom. They are my only family. That’s it.Nicaragua Born, Hispanic, White, 43-year-old.
I mean stress trying to find a place, stress, stress, plus, you know me. I can honestly say that for me and 20 years being positive and taking medication for all these years, I’ve had those times where I’m like I don’t wanna take this pill, I wanna skip a day, I wanna skip a week. I’m going to skip a month because of the day to day living situations that become overwhelming at times. And I think I’ve never had a problem of taking it in these 20 years but at times it’s like you don’t really care. But then you do remember that you have to care. So I couldn’t, I wouldn’t sit here and tell you that, yeah I’m an advocate, I teach people, I tell people this and that and I’m perfect. Which would be a lie. Cause sometimes I look at these big ass fat horse pills and I’m like, I’m not taking those pills.US Born, Non-Hispanic Black 50-year-old.
Anytime when I begin to use, I quit taking my medications. That’s the first thing to go out the window, it’s my medications and going to doctor’s appointments. Cause I have no time for it. I only have time for drinking and drugging or using. And being homeless, you can’t eat on time or take medications on time, or at least I couldn’t. You know? So, yeah, every time that I become homeless, I quit taking medications and been out of care for a while. I’m very lucky that I respond well to medications. They haven’t put me on anything that I haven’t responded well to and I guess I’ve been on 5 different regimens because they won’t put you back on the one that you were on once you stop taking it. So um, but I’m undetectable. And I become undetectable quickly once I get back into care again.Non-Hispanic White, 55-year-old.
I was taking my medicine without food sometimes because I couldn’t afford the food so sometimes I would take the medicine and it would make me feel so horrible.Jamaican Born, non-Hispanic Black, age not provided.
Somedays when I was on the beach and I didn’t have no money, no nothing, no food, no nothing, oh my God, it was hard. Cause that medication, you have to take with food, or it will affect your body. So, I was like crazy. Sometimes I ate out of garbage can... I begged, I panhandle. I used to prostitute and, then, that stuff got old. I tried selling my body for food. Sometimes it was just hard.US Born, non-Hispanic, Black, 37-year-old.
4. Discussion
5. Limitations
6. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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|
No. (%) | |
---|---|
Age, mean (SD) | 48.47 (8.78) |
Where were you born, no. (%) | |
US | 12 (75.0) |
Puerto Rico | 1 (6.3) |
Nicaragua | 1 (6.3) |
Jamaica | 1 (6.3) |
Africa | 1 (6.3) |
Ethnicity | |
Hispanic/Latino | 5 (31.3) |
Non-Hispanic/Latino | 11 (68.8) |
Race | |
Black/African American | 11 (68.8) |
White | 4 (25.0) |
Prefer not to answer | 1 (6.3) |
Marital status | |
Single | 7 (43.8) |
Married/living together with a partner | 2 (12.5) |
Separated or divorced | 5 (31.3) |
Widowed | 1 (6.3) |
Engaged | 1 (6.3) |
Current living situation | |
Own house/apartment | 7 (43.8) |
Parent’s house/apartment | 1 (6.3) |
Someone else’s house/apartment | 4 (25.0) |
Residential drug, alcohol treatment facility, or halfway house | 2 (12.5) |
Single room occupancy (SRO) | 1 (6.7) |
Shelter | 1 (6.7) |
How long have you stayed at the place you stayed last night? | |
Less than a week | 1 (6.3) |
More than 1 week but less than 1 month | 1 (6.3) |
1–3 months | 4 (25.0) |
More than 3 months but less than 6 months | 9 (56.3) |
6 months or more | 1 (6.3) |
Who do you currently live with? | |
Alone | 2 (12.5) |
Spouse/partner/significant other | 4 (25.0) |
Other adult family members/relatives | 1 (6.3) |
Dependent children/grandchildren | 3 (18.8) |
Friends/roommates/other unrelated persons | 4 (25.0) |
Group home/shelter | 1 (6.3) |
Other | 1 (6.3) |
Care for children under 18 years old | |
Yes | 5 (31.3) |
No | 11 (68.8) |
Highest level of education | |
Grades 1 through 8 | 3 (18.8) |
Grades 9 through 12 | 3 (18.8) |
Grade 12 or GED | 3 (18.8) |
Some college, associate’s degree. or technical degree | 5 (31.3) |
Bachelor’s degree | 2 (12.5) |
Receive housing assistance | |
Yes | 7 (43.8) |
No | 9 (56.3) |
Theme | Illustrative Quote(s) |
---|---|
Storing and misplacing mediation | I wouldn’t keep it [HIV medication] on me. I would hide it in the bushes. I wouldn’t take it at the same time every day…But nobody would know it ‘cause I wouldn’t tell nobody I had it… Yup, so no one would see it or no one would get my purse and see…I would take the name thing off and hide it in the bushes and then, when nobody was around I would take it. US Born, non-Hispanic White, 36-year-old. |
Privacy issues with persons with whom they live | I’ve not shared my status with many people that know me so I need the privacy to make sure that I be taking my medicine. Jamaican born, non-Hispanic Black, age not provided. |
Inconsistent access to medication and health care disruptions | Another issue that I had was with my labs to renew my case through ADAP. The labs are… were old. And I haven’t been to the doctor. The last time that they went to the doctor, I don’t know if they made an error or what they did. But they did not give me a return appointment. They told me ‘Oh, we don’t have a return appointment for you so you just gone’. So, what ended up happening was that my labs ended up getting over the 6 months due date. So, what they were saying was for me to renew my med, for me to renew my case, I need to have current labs. In order for me to have current labs, I have to schedule an appointment with the doctor. And go down there and wait for the labs to come. That’s ridiculous…And then they don’t send any reminders as to when… Like they verbally tell you, but they don’t send me any reminders. And even though I could write it down, that’s me slipping it and know when my paperwork is due, but they don’t have a system, a text message system, where they say, ‘Hey, look your insurance is going to end up in…’ None of that. So, once it goes out, it’s a mess. Yeah, there’s a lot of barriers, I do not like that system. I don’t, I’m sorry. US born, Non-Hispanic, Black, 43-year-old. |
Competing physical and mental health concerns | Last time was drugs. I wouldn’t care. I would forget. I would rather have drugs before my medication. But now it really don’t affect me. I know when I have to take my medication. Because I would stay high. I wouldn’t want to go pick up my medication. Puerto Rico Born, Hispanic, 36-year-old. |
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Share and Cite
Fernandez, S.B.; Lopez, C.; Ibarra, C.; Sheehan, D.M.; Ladner, R.A.; Trepka, M.J. Examining Barriers to Medication Adherence and Retention in Care among Women Living with HIV in the Face of Homelessness and Unstable Housing. Int. J. Environ. Res. Public Health 2022, 19, 11484. https://doi.org/10.3390/ijerph191811484
Fernandez SB, Lopez C, Ibarra C, Sheehan DM, Ladner RA, Trepka MJ. Examining Barriers to Medication Adherence and Retention in Care among Women Living with HIV in the Face of Homelessness and Unstable Housing. International Journal of Environmental Research and Public Health. 2022; 19(18):11484. https://doi.org/10.3390/ijerph191811484
Chicago/Turabian StyleFernandez, Sofia B., Cindy Lopez, Cynthia Ibarra, Diana M. Sheehan, Robert A. Ladner, and Mary Jo Trepka. 2022. "Examining Barriers to Medication Adherence and Retention in Care among Women Living with HIV in the Face of Homelessness and Unstable Housing" International Journal of Environmental Research and Public Health 19, no. 18: 11484. https://doi.org/10.3390/ijerph191811484