Patients, Social Workers, and Pharmacists’ Perceptions of Barriers to Providing HIV Care in Community Pharmacies in the United States
Abstract
:1. Introduction
1.1. Underutilization of HIV Care Services and the Implications of Poor Retention in Care
1.2. Community Pharmacies as a Readily Available Resource for People Living with HIV
1.3. Exploring Barriers to Retention in Care in the Community Pharmacy Environment
2. Methods
2.1. Study Design and Sample
2.2. Data Collection
2.3. Data Analysis
Ethics and Compliance Statement
3. Results
3.1. Perceptions of the Role of Community Pharmacists in HIV Care
“I don’t think the rest like of care teams understand how important the role of pharmacist is or the pharmacy is, because they are your every month point of contact.”[SW 2].
3.1.1. Pharmacists have a Limited Role in HIV Care as Drug Experts
“When you think about pharmacists, you think about, you know, like pure medication.”[SW3].
3.1.2. Pharmacists Act as Patient Advocates
“[…]the pharmacist can kind of almost step in and either allay some of those fears and dispel some of the myths, as well as maybe just kind of step in and be, you know, like a tiny surrogate caregiver.”[CP 3].
3.2. Perceptions of Pharmacists’ HIV Knowledge about HIV Resources
“(Pharmacists) may be not as confident in their knowledge and background as, say, (name of pharmacist), who had friends who had had AIDS and, you know, was very plugged into the community, so I found that very helpful.”[PLWH 1].
“So, right, like I have a fair number of people with cognitive delay. Sometimes people with cognitive delay or with learning disabilities or people with, you know, this is a whole other thing unto itself, but limited literacy, are pharmacists aware of that, and do they ask that question, and how do they perceive, if the person says that?”[SW 3].
“So it felt like, and I don’t know if the newer generation of pharmacists are doing quite it’s like, oh, your insurance doesn’t work, sorry. You know, it’s like, oh, your insurance doesn’t work, let’s find out why your insurance doesn’t work, you know. So I did a lot of that. And, oh, you don’t think you can afford your meds.”[CP 1].
“So sometimes that takes a little bit of teaching the pharmacy that they’re connecting with to, you know, educate them about, okay, what does it mean when somebody has coverage through the ADAP program and how, you know, this is how you run into barriers filling it if this, and coming up with like a huge bill, and then there’s something wrong with the billing[...]”[CP 5].
3.3. Perception of Pharmacy Operation and Services
3.3.1. Pharmacists Provide Patient-Care Services That are Impersonal
“Well, it was just the impersonality of it. I mean, I didn’t do anything wrong. I mean, when, and when they would call me to check on things, I mean, they were very caring people on the other end. But it was a voice on the phone, and I don’t care for phones that much. So, you know, I, and they would call, and they would say, well, you know, they would kind of do a little survey. How are you doing?”[PLWH 3].
“And some people don’t like phone calls at all and will never answer the phone, so I feel like we could do better with, yeah, I think about that a lot. We could do better with how pharmacy in our clinic follows patients.”[SW 4].
3.3.2. Pharmacists Provide Insufficient Medication Adherence Support
“I see big failures with pharmacies and adherence. So even our mail order pharmacy, which is, I, I think anyone who has HIV who was enrolled in the mail order pharmacy is enrolled in this special program where a pharmacist is supposed to monitor adherence and call the patient every three months, I think, and just check in. Sometimes I hear my co-workers saying, oh, they haven’t refilled in three months. And no one called from the pharmacy.”[SW 1].
“I would say the biggest difference, and if you sum it all up, it would be a proactive approach to patient care. Where this is how I look it, retail is more reactive like they just go in their retail store, most of the times you’re not going to have the pharmacy reaching out monthly calling patients saying, hey, it looks like you’re due for this refill. A lot of times it’s the patient calling the pharmacy and saying, hey, I need this filled.”[PLWH 4].
3.3.3. Pharmacists Have Limited Time and Resources
“Now the bottom line is so tight that I think a lot of pharmacists don’t have time to really be advocates because they’re making $1.25 on a prescription, you know, and you could go over 500 scripts a day.”[SW 4].
3.3.4. Patients Do Not Build Trust with Pharmacists Due to Changes in Pharmacy Staff
“So how do you build trust? And how do you maintain it. So switching someone around doesn’t build trust. It destroys it. No matter how caring the people are, it makes it very difficult.”[PLWH 2].
“I think if you’re getting a phone call from a pharmacist you’ve never met, it is more difficult to have those trickier discussions with than someone maybe you’ve seen.”[SW 2].
3.4. Negative Patient Experiences within the Community Pharmacy Space
3.4.1. Pharmacist Attitude and Behavior towards People Living with HIV
“Well, being nonjudgmental first, I mean, just being understanding of where the person is coming, your patient is coming from because they’re very diverse. You know, it’s not like they’re well educated, middle class.”[SW 3].
“But I had, sometimes they’re not up to par as far as looking at stuff as they should be. And when, at first, especially, when I first started, when I moved into this apartment where I am now, when I got that, when they knew that they were getting ready to fill out my ARV, and all they, you know, were kind of rude on the phone just, well, we don’t carry this.”[PLWH 3].
“And some, you know, sometimes, a lot of the times, the [pharmacy] staff aren’t respectful and courteous and professional. So that’s another reason to avoid a place.”[PLWH 1].
3.4.2. Breach of Patient Privacy in Pharmacies
“And then I also think, we’ve touched on this a little bit, but the way pharmacies are designed, in general, does not offer privacy. And the way pharmacy staff function, largely breaks privacy just across the board in the worst ways.”[SW 3].
“I mean, after sort of ten years taking the new medications, to go in every time and say, okay, now there’s this, and these are the side effects and, you know. And like, okay, your medicines are ready. Here is the Atripla. Here, you know, in a really loud voice that’s kind of like, you know, you never know who’s going to be around. And I would just prefer them to respect my privacy, and for that to be my decision, how open I want to be about it.”[PLWH 3].
“And if a place is known for the treatment of people living with HIV, that’s another reason why people would avoid it. They don’t want to be associated with a place that’s exclusively for people living with HIV.”[PLWH 4].
3.4.3. Recommendations for Pharmacists Providing HIV Care
- Build rapport with patients to encourage engagement in HIV care
“I think what my pharmacists were able to do, they knew me well enough to look and say, you know, is everything all right? So they could tell if things weren’t going well, you know, for whatever reason.”[PLWH 3].
“[…] the stigma surrounding it can be very, very isolating for people, if you just have people who like you feel care about you, I think that can make a difference to you staying linked in to care.”[CP 3].
- b.
- Create a safe space in the community pharmacies for patients
“And so I think meds are such a huge, huge part of HIV care that, and patients know that, that they are like very concerned that they have a good pharmacist and a good pharmacy and someone that they can ask really important questions to and still feel trusted.”[CP 2].
“As long as they stay open to change and open to understanding each person that approaches their counter is a different person, is a different person with a different circumstance.”[PLWH 1].
“So as long as they stay open and not try to always, you know, pre-assume anything by when they first look at you no matter what age you are, no matter what color you are, no matter any of that, as long as they don’t try to pre-assume anything, then they will have a much better day of doing their job.”[PLWH 3].
“And I think knowing that there is immense stigma around HIV is super important for any provider, whether it’s pharmacist or other community providers, to be aware of. I think being very aware of the importance of engagement in care, or retention in care, is really important, because for some pharmacists, they, you know, might be, a lot of patients are maybe, their chronic health conditions are maybe not as potentially problematic as HIV can be for someone’s life and their health.”[SW 4].
- c.
- Protect the privacy of patients with HIV
“And some of them are like absolutely not and will go ballistic if the pharmacy calls them, because they’re so, so scared about somebody finding out.”[SW 2].
“I just didn’t want the medication bottle in my house. And I used to take, I used to put my pills in another more discreet bottle. So if people had that option, I think that would ease some people.”[PLWH 5].
“It’s nice to have a little area, if you’re waiting, that you can sit down and that’s semi-private. I think, in general, most pharmacists probably are, in terms of, you know, they’re not going to like yell your name out and what you’re there for, you know.”[SW 1].
“We don’t have any signage on our like delivery drivers, things like that. So we try to make sure everything is unmarked. We also are very receptive to patient requests.”[CP 2].
“But, yeah, as far as stigma goes, I would say pharmacists just trying to be as discreet as possible when discussing things with patients [...] encouraging other employees to not be gossipy or indiscreet about talking about people living with HIV.”[CP 3].
- d.
- Hire diverse pharmacy staff
“But having gay people working there [a community pharmacy] was really helpful [...] in fact, I think if I wouldn’t have felt that, I would have felt more isolated.”[PLWH 2].
“And all the people who work at (Pharmacy) were plugged into that community. There were a lot of gay and lesbians there, who worked there, so it just felt very comfortable to me.”[PLWH3].
“But there’s only one black person working in there. I’m just noticing how the disparities are, you know, they’re not reaching as many people as they possibly can reach, because they’re not hiring a more diverse team.”[PLWH 5].
- e.
- Provide pharmacy staff with information about transgender people
“I would like for them to have a lot of information on trans people.”[PLWH 3].
“But with trans people, you have to walk this fine line of being very respectful and not looking at them as though they were in a circus. And so that would also help in the pharmaceutical industry.”[PLWH 5].
- f.
- Trainings for community pharmacists to consider
“And that’s still going to all take place, but I figure that some of it, you know, if the pharmacists had like an ongoing training, you know, it’s one thing to be able to supply people with their medications but have a little bit more compassion and human interaction other than just explaining to them what this medication is for.”[SW 4].
- i.
- Train pharmacy staff on how to communicate with vulnerable populations
“And I suppose, because, you know, well, HIV is, I mean, not only associated with gay people and intravenous drug use, and it’s all the things that people can’t have attitudes, so even if people don’t have an attitude, I would probably be sensitive to it and watching out for it. So I think that’s really important to, you know, completely just treat it like a medical issue, and maybe some sensitivity training for those people who, you know, aren’t exposed to the gay community.”[SW 2].
“I think pharmacists assume too much. It’s like, oh, do they(patients) even read their prescription bottle? You know, there’s a, and then there can be language barriers and mental health barriers.”[SW 3].
- ii.
- Train pharmacy staff about HIV insurance
“So sometimes that takes a little bit of teaching the pharmacy that they are connecting with to, you know, educate them about, okay, what does it mean when somebody has coverage through the ADAP program and how, you know, this is how you run into barriers filling it if this, and coming up with like a huge bill, and then there is something wrong with the billing, or trying to prepare a pharmacy that might not usually fill specialty medications as to like keeping those stocked and in expectation of needing to have those available for patients.”[SW 1].
“You need to know simple things like that with the financial, you need to know like the prescription assistance programs, and then you need to know some basics. You are not expected to know, you know what I mean, everything, but those questions that pop up…”[SW 3].
4. Discussion
Study Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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a. Perceptions of the role of community pharmacists in HIV care | |
Pharmacists have a limited role in HIV care as drug experts | “We [social workers] are kind of like the thread that weaves through the patient’s life and their medication and their primary care and their specialty care. And then the pharmacist has kind of like this more narrow picture and also can’t do anything about it, and that’s where I think social work comes in for us now.” [SW 1] |
Pharmacists act as patient advocates | “So I would see an injustice that I felt like people weren’t getting proper care, or they weren’t, you know, getting help from their insurance or whatever, so then I would go. So I became a little bit of a social worker myself.” [CP 1] |
b. Perceptions of Pharmacists’ Knowledge about HIV resources | |
“Well, I don’t know in general…how much of current research that pharmacists are equipped with…Like, again, went to a chain pharmacy, I don’t know if I would just have that automatic confidence.” [PLWH 2] “They (pharmacists) have no idea about ADAP (AIDS Drug Assistance Program). They have no idea about any kind of prescription assistance.” [SW 2] | |
c. Perception of pharmacy operation and services | |
Pharmacists provide patient-care services that are impersonal | “I had to do the mail order thing for a while because of my insurance. I hated it.” [PLWH 5] |
Pharmacists provide insufficient medication adherence support | “I think most of my experience with community pharmacists has been that type of like coordination and not so much the adherence support and stuff.” [SW 3] |
Pharmacists have limited time and resources | “You know what I mean? Like can they (Pharmacists) facilitate care? Do they have like here it just seems like our pharmacies are so like backed up and understaffed.” [SW1] |
Patients don’t build trust with pharmacists due to changes in pharmacy staff | “And if you don’t trust the pharmacist, you’re just going to be like, yeah, I’m taking my med every day. I don’t really want to talk to you.” [SW 5] |
d. Negative experiences within the community pharmacy space | |
Pharmacist attitude and behavior towards people living with HIV | “Probably when I got to know the pharmacist, it would be okay, but I would, perhaps, how to say this, be not 100% confidence about their attitude about people with HIV.” [PLWH 1] |
Breach of privacy in pharmacies | “We’ve had people transfer their meds into this pharmacy because they live in very small rural communities, and even though HIPAA is a thing, sometimes in small communities things can still get out.” [CP 4] |
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Tarfa, A.; Pecanac, K.; Shiyanbola, O. Patients, Social Workers, and Pharmacists’ Perceptions of Barriers to Providing HIV Care in Community Pharmacies in the United States. Pharmacy 2021, 9, 178. https://doi.org/10.3390/pharmacy9040178
Tarfa A, Pecanac K, Shiyanbola O. Patients, Social Workers, and Pharmacists’ Perceptions of Barriers to Providing HIV Care in Community Pharmacies in the United States. Pharmacy. 2021; 9(4):178. https://doi.org/10.3390/pharmacy9040178
Chicago/Turabian StyleTarfa, Adati, Kristen Pecanac, and Olayinka Shiyanbola. 2021. "Patients, Social Workers, and Pharmacists’ Perceptions of Barriers to Providing HIV Care in Community Pharmacies in the United States" Pharmacy 9, no. 4: 178. https://doi.org/10.3390/pharmacy9040178