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Narrative experiences of interactions with pharmacists among African-born persons living with HIV: “It's mostly business."
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Research in Social and Administrative Pharmacy journal homepage: www.elsevier.com/locate/rsap
Narrative experiences of interactions with pharmacists among African-born persons living with HIV: “It's mostly business." Alina Cernasev1,∗, William L. Larson2, Todd Rockwood3, Cynthia Peden-McAlpine4, Paul L. Ranelli5, Olihe Okoro5, Jon C. Schommer1 1
University of Minnesota, College of Pharmacy, 308 Harvard Street SE, Minneapolis, MN, 55455, USA Allina Health Uptown Clinic, Park Nicollet, and North Memorial Infectious Disease, Allina Health, 1221 West Lake St., Suite 201, Minneapolis, MN, 55408, USA 3 University of Minnesota, School of Public Health, 420 Delaware Street SE, Minneapolis, MN, 55455, USA 4 University of Minnesota, School of Nursing, 308 Harvard Street SE Minneapolis, MN, 55455, USA 5 University of Minnesota, College of Pharmacy, 232 Life Science Duluth, 111 Kirby Drive, MN, 55812, USA 2
A R T I C LE I N FO
A B S T R A C T
Keywords: Pharmacist Disclosure Secrecy HIV/AIDS Interaction
Background: African-born persons constitute 1% of the total Minnesota population, yet 24% of new HIV infections occurred in this population in 2016. Furthermore, 32% of the African born persons living with HIV [PLWH] did not check their CD4 counts or viral load in 2018. Little is known of the role of pharmacists in antiretroviral (ARV) management in the PLWH of African origin. Objective: This study aimed to describe the experiences of African-born PLWH in their interactions with pharmacists and perceptions of pharmacists’ roles in fostering adherence to ARV therapy. Methods: A qualitative approach was used for this study. Recruitment via fliers for in-person interviews with African-born PLWH in Minnesota continued until saturation was achieved. Narrative Interviews with 14 participants lasting up to 2 h were conducted over five months. All interviews were audio recorded and transcribed verbatim by a professional transcription service. Conventional Content Analysis was used to analyze the data. Results: Three themes emerged from analyzed data “Interaction with the pharmacists,” “Revealing the diagnosis to a pharmacist,” and “Lack of disclosure of HIV status to a pharmacist.“ Conclusions: The participants referred to the interaction with pharmacists as a “business” or “transactional interaction.” To better understand the interaction between pharmacists and PLWH of African-born, future studies could benefit from interviewing pharmacists from different practice settings.
Introduction In the early 1980s, the landscape of infectious diseases changed by the identification of a mysterious disease later termed human immunodeficiency virus (HIV). Consequent to the development of antiretroviral (ARV) medications, HIV is now a chronic and manageable disease, especially in high-income countries. Adherence to ARV therapy is vital for patients because treatment suppresses the viral load, decreases the risk of drug resistance, and improves quality of life, prevents transmission of the virus, and ultimately increases life expectancy.1,2 Previous studies have recommended that persons living with HIV (PLWH) should take at least 95% of the prescribed doses to prevent the development of resistance.3 Along with other healthcare professionals, pharmacists in the U.S.
have been involved in patient care since the start of the pandemic.4 In the clinic context, the patients are referred to a pharmacist for medication adherence issues by a physician. In this situation, the pharmacist had full access to the patient's medication and treatment profile. Furthermore, the advantage of seeing a clinical pharmacist is that the pharmacists have the flexibility to schedule follow-up appointments with the patient to further discuss the medication regimen. Various studies demonstrated the clinical role of pharmacists in helping PLWH to improve their adherence to ARV therapy and decrease the cost of treatment due to hospitalizations.5,6 In the hospital settings, a recent study showed that the staff pharmacists were able to reduce error rates for hospitalized PLWH.7 In the last three decades, Minnesota has seen an increase in the number of immigrants from Africa, noticeably in the mid-1990s. In a
∗
Corresponding author. E-mail addresses: [email protected] (A. Cernasev), [email protected] (W.L. Larson), [email protected] (T. Rockwood), [email protected] (C. Peden-McAlpine), [email protected] (P.L. Ranelli), [email protected] (O. Okoro), [email protected] (J.C. Schommer). https://doi.org/10.1016/j.sapharm.2019.07.009 Received 18 February 2019; Received in revised form 11 July 2019; Accepted 14 July 2019 1551-7411/ © 2019 Elsevier Inc. All rights reserved.
Please cite this article as: Alina Cernasev, et al., Research in Social and Administrative Pharmacy, https://doi.org/10.1016/j.sapharm.2019.07.009
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extensive review of literature. To ensure that the instrument aligned with the scope of this research, the PI consulted with the study team comprised of experienced researchers and health professionals (pharmacists and physicians) specializing in HIV. The interview questions can be found in Appendix 1.
previous report from the Minnesota Department of Health (MDH), some community members estimate that number to be close to 100,000 African immigrants.8 Despite the fact that the African-born population is around 1% of the total Minnesota population, 24% of new HIV infections in 2016 occurred in this population.9 Per a recent report, 32% of African-born PLWH did not check their CD4 or viral load in the last year.10 Furthermore, in the same statement, it was reported that the women of African origin were the most impacted by HIV.10 There are many impediments that cause important difficulties not only for HIV prevention, but also for treatment and care options: language, lack of education about HIV, and cultural beliefs about the role of the pharmacist in their medication regimen. Pharmacists are the third largest healthcare profession in the U.S. and one of the most accessible professionals.11 Although previous quantitative studies conducted in the U.S. suggest that this population is adherent to ARV therapy, the studies are limited because they did not capture social and cultural perspectives of PLWH when interacting with the pharmacist.1213 Therefore, it would be valuable to delve into this understudied population to better understand their experiences when interacting with their pharmacist. This study aimed to describe the perceptions of African-born PLWH regarding pharmacists’ roles in fostering adherence to ARV therapy.
Data analysis The initial step before data analysis is transcription. After the interviews were audio recorded, the records were transcribed verbatim by a professional transcription service (QHR Consultants, Madison, WI). Before data analysis took place, the PI read over the transcripts multiple times to immerse herself in the world of the participants. While reading the transcripts, the PI took notes in the form of reflective memos.19 Before analysis took place, the PI took time to reflect on the preconceptions about the experience as part of the personal memo. Conventional Content Analysis was selected as the main method for NI analysis.20 A key characteristic of the Conventional Content Analysis is not using preconceived categories. On the contrary, the Conventional Content Analysis enables the categories and names for categories to arise from the data.20 In this situation, researchers engagement in the data foster new perceptions.20 This method has been described in the qualitative analysis as inductive category development.20 Inductive coding occurred line by line and facilitated the development of initial codes.21 Each code had a descriptor that defined the backgrounds of code and enabled the differences and similarities between codes to arise. After all the codes were extracted, the codes were analyzed for similarities and placed into categories.20,21 The categories were linked based on the commonalities of content topic that facilitated the development of themes.20,21 All the data analysis, such as extraction of codes, sub-codes, categories, themes, and writing memos, were conducted using Dedoose, a qualitative software that helped in managing data.
Methods Narrative Interviews (NI) elicit the story of individuals and have been selected as a research methodology for this study.14 A key purpose of NI is to encourage and inspire the participant to share a significant event of his/her life with the interviewer.14,15 One of the main characteristics of NI is the use of semi-structured dialogue with probing questions if the participant does not discuss the topic in the probes.14,15 The interviewer impact in the narrative process should be negligible because the purpose of NI is to allow the interviewee to freely recreate social events.15
Trustworthiness of data Sampling and data collection Lincoln and Guba's framework was used to address and meet criteria for quality and rigor.22 These authors recommended four criteria, credibility, dependability, confirmability, and transferability to critique narrative research studies.22 Each of the four criteria for trustworthiness were achieved at different stages of the data collection and analysis. In this study, the credibility criteria was obtained by audio recording, transcription, and analytical memos written during data analysis. The audiotapes were transcribed verbatim by a professional transcription service where each transcript was checked for accuracy twice by the company. The analytical memos were kept organized by Dedoose; an analytical software that allowed all the memos to receive a time stamp and be easily retrieved with the analyzed text. Additionally, the emerged themes were refined based on the written analytical memos. Dependability indicates the solidity of data over a period and across situations (Lincoln & Guba, 1985). In this study, dependability criteria was obtained by careful documentation that occurred in the interview process. For example, after each interview, the PI wrote summaries that captured non-verbal communication that might be relevant to the data analysis. Furthermore, reflective journaling allowed rigor building because it captured non-verbal responses during interviews and other experiences during data collection. Confirmability refers to the possibility of reaching congruence between two or more team members regarding the data's relevance, sense, and accuracy (Lincoln & Guba, 1985). The roots of this criterion are in the information provided by the data that ensures the interpretations of the participants' words are represented accurately (Lincoln & Guba, 1985). This criterion was accomplished by careful documentation, intercoder checks, and the development of the codes. Intercoder checks
Qualitative researchers look for thick descriptions and rich themes that emerge from the interviews, therefore reaching a level of saturation.16 Saturation has been defined as a point beyond which no significantly new information is being obtained.17 In this study, the recruitment of participants continued until data saturation was obtained. Once saturation of the data was achieved, no further interviews were arranged.17,18 For this study, saturation was reached at interview number 14. After the study received approval from the Institutional Review Board (IRB) of the University of Minnesota, the recruitment through fliers started. The fliers were placed in community pharmacies, HIV clinics, and one AIDS service organization located in the Twin Cities area of Minnesota. The inclusion criteria were African-born adults who lived in Minnesota, had a diagnosis of HIV, taking ARV medications, spoke English, and were willing to share their stories. The fliers had the researcher's contact information and an explanation of the research study. The interested persons contacted the principal investigator (PI) via phone and set up convenient interview times and locations. At the beginning of each interview, the purpose of the study was explained, questions were answered, and the participant reviewed an informed consent form. The PI asked for permission to audio recording the interview. All the participants agreed to be audio recorded. All the interviews were face-to-face, and each interview ranged in length from half an hour up to 2 h. Each of the participants was offered compensation (a $50 gift card) for their participation in the study, to reimburse them for their time and the costs of participating (e.g., childcare, transportation). The recruitment was launched in December 2017 and continued until saturation of the data was reached in April 2018. The interview questions were developed by the PI based on 2
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participant explained that the pharmacist asks her additional questions to better determine if any changes are needed in her treatment.
refers to the codes being checked by another researcher. In this study the codes were reviewed by two independent researchers (JS and OO). For example, one researcher reviewed the codes of two transcripts; while the other researcher (OO) coded four interviews independently. Then, the team met several times to discuss the codes and consensus was achieved. Transferability discusses to the level to which the results of the study might be transferred to or have applications in other settings (Lincoln & Guba, 1985). This step was obtained by thick, vivid explanations. The thick and rich descriptions were achieved at the fourteenth interview, at which point no new information was forthcoming.
“Oh yea, they are very nice to me. The lady at, uh, [PHARMACY], she'sshe's nice. She calls me, asks me how I'm doing, how are my meds doing. Even the driver that brings- deliver it, he's a nice guy. Mhm.” (Participant 3, Female) Participant 4 reinforced the “transactional” nature of the relationship; pointing to the similarities that exist regardless of which pharmacy he uses to refill his ARV medications. He also stated that the “payment” for medications plays an important role in the “transactional” part of the prescription. In the quote below this participant expressed his personal view of the “transactional” relationship with the pharmacist.
Results All 14 participants were taking ARV medications at the time of the interview. Eight participants were female and six were male. Eight of the participants were diagnosed with HIV in the U.S., while the rest of the participants received the diagnosis in their country of origin. The participants were from different geographic areas of Africa. Four participants were born in Ethiopia, four Kenya, two Liberia, one Tanzania, one Togo, one Zambia, and one Guinea. Two of the participants identified themselves as college students. One person identified himself as homosexual. All participants were insured at the time of the interview. Most were recipients of Medicaid (Medical Assistance in Minnesota). All the narratives were characterized by secrecy despite the fact that one or two decades had passed since diagnosis. The secrecy of their diagnosis was observed throughout all the interviews where the participants would refrain from using the word “HIV” and refer it as “this,” “it,” or “the disease.” When asked if they would disclose their HIV positive status to a pharmacist, two themes emerged from the participants’ responses: Revealing the diagnosis to a pharmacist and Lack of disclosure of the status to a pharmacist.
“I think- there's no different as long as you pay your, ya know, the fee that they want you so they will give you the medication. So, the thing, ya know- when I used to pick it from- So when I go there, ya know, they willfirst of all, I will call them and order the medication to refill. So, they will refill it and when I go there to pick it up, I will go and pick it up and so. It is depend- if I have the money, the fee that they wanted, I will pay the fee and then they will give me the medication, so there is no problem.” (Participant 4, Male) Participant 11 uses the term “business communication” to illustrate the relationship with the pharmacist. The participant also emphasized the lack of a caring relationship between him and the pharmacist. The relationship between the physician and the patient was perceived as more caring and comforting, in contrast to a “business communication” with the pharmacist. He further elaborated: “No, no, no, like a doctor like the feeling that you get like a support type of thing. It's mostly just like mostly business communication. So, it's notyeah, you won't notice any change in their voice or anything like that. I don't feel anything from them. Just like, “yeah did you order this?” “Yeah, it's fine you can have that.” (Participant #11, Male)
Theme 1: Interaction with the pharmacist
We can see in the following excerpt a positive interaction perceived through pharmacy services such as providing refills and resolving insurance issues. For instance, Participant 6 states that he has a good relationship with the pharmacist because of the services they perform including replenishment of his ARV medications. However, the participant did not clarify further if the pharmacist played a role in the treatment he received.
The data analysis resulted in the emergence of the central theme that describes the participants’ perceptions of pharmacist roles in their treatment. The study participants were asked not only to describe the interaction with the pharmacist when they receive ARV medications; but also, to present examples positive or negative of the interaction with the pharmacist. The study participants received their ARV medications from community pharmacies, outpatient pharmacies, and mail order. Overall, the study participants used favorable terms such as “nice,” “good,” “business” to characterize their interaction with the pharmacist. None of the participants described the interaction with the pharmacist negatively. Furthermore, none of the study participants were aware that the PI was a pharmacist. Although the participants characterized their interaction with the pharmacist positively, most of them described it as a “transactional” relationship. In this context, “transactional” means that the interaction with the pharmacist is generally business-like; the pharmacist interaction with the participant might not go further to developing a relationship or seeking to better understand the participant's issues. For some participants, the concept of interaction with the pharmacist was described as being “good” because the pharmacist counsels them on the prescribed ARV medications.
“Yea, yea. I used to talk with them by telephone. Eh, I tell them to res- I want to refill my medicine. You make it ready for me, I take it on this day. They do and I go and pick [it up] with my family.” (Participant # 6, Male) In contrast, two participants’ experiences describe a trusting and caring experience rather than a “transactional” one with the pharmacist. Both experiences occurred in the clinic with the clinical pharmacist where they go for routine follow-up. In this context, these two participants do not receive their ARV medications directly from the clinical pharmacist. These two participants pick up their medications from the community pharmacy; but they also receive medical advice from the clinical pharmacist. Participant 10 describes the meeting with her clinical pharmacist who explained the rationale for separating some of her medications. In the following quotation, the participant illustrates the active role played by the clinical pharmacist in managing her current ARV regimen. The pharmacist says “No” multiple times suggesting a strong concern for his patient's medication regimen. This illustrates how the pharmacist builds trust by playing an active role in monitoring the medication regimen.
“A good one. When I visit, they give me the new medication. She {the pharmacist} explains to me how to take it and sometimes what will happen and so forth so … we are in good relationship.” (Participant 1, Female) The term “nice” was used by a participant to characterize the relationship with the mail order pharmacist and the pharmacy staff. When asked to elaborate the meaning of “nice” relationship, the
“Oh, they are good (laughs) they are good, very good, very good. Yeah, they would also advise like what to- OK, they are- in fact before then I 3
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down the medicine that I take so yeah.” (Participant 7, Female)
didn't know, like when you're taking HIV medication, shouldn't mix with any other medication. Yeah? I didn't know. I would take, like if they've given me, like if I have HIV- my, my, my normal medication and then I have maybe something else. Maybe like the calcium, the vitamin, I would put them together and take them together at a go. So, this pharmacist told me “no, no, no. You have two HIV medicine, you take them on their own.” On their own, yeah. So, I if I have any other medication then I take them um, maybe an hour or two after. Yeah, but HIV medication, take them singly, just like that. For them to work better.” (Participant 10, Female)
On the contrary, one participant only became aware of the importance of disclosing his HIV status and the ARV regimen to a pharmacist after the discussion with his physician. His use of the words “never really disclosed” in the following excerpt emphasized his unawareness of the importance to revealing the disease status. “Mmm. Yes, I actually I just realized that today which usually he did [DOCTOR NAME] just told me I should probably let them know I am taking this medication, but I hadn't really thought about it, so I never really disclosed that information like I'm taking this kind of medication. Yeah, so I never would disclose it when I would pick up any allergy or fill my medications I never really disclose, I just pick it up. I never thought it would be that impactful. But I guess now as my doctor mentioned it … But yeah, if I ever have in the future, I probably do have to start letting them know.” (Participant 11, Male)
The following quotation also accurately captures the active role played by a clinical pharmacist who meets with the participant quarterly to discuss the medication regimen. Participant 12 vividly describes how the clinical pharmacist plays an essential role in his medication regimen by making necessary adjustments. “Yes, like {Clinic Name} has a pharmacist … they look at my medications and they see on my lab test, they want to take out some medication I will go and meet and then they will explain to me you don't need to take this other one. We're replacing it with this or stuff like that. So, I mean, that happens 3 months, quarterly. Like I went for dialysis last week and they told me to bring my medication and they took the list … they going to do some adjustment based upon my lab tests.” (Participant 12, Male)
Theme 3: Lack of disclosure of the HIV status In the third theme, the participants narrated their experiences along with their reasons on why they would not disclose their HIV status to a pharmacist. Before the results of the third theme are presented, it is vital to understand the participants' African background regarding confidentiality and distrust of healthcare professionals. For example, one of the participants clarified that in their home country, healthcare staff have access to a person's files containing confidential information such as the HIV diagnosis. According to this participant statement, a healthcare professional could easily open the file and disclose her diagnosis to others. She further elaborates:
Theme 2: Revealing the diagnosis to a pharmacist The following themes, Theme 2: Revealing the diagnosis to a pharmacist and Theme 3: Lack of the disclosure of the HIV status, emerged as all of the participants responded to the scenario “if you have to buy an Over-the-Counter (OTC) product from any chain pharmacy, would you go to talk to a pharmacist and ask for guidance?” during the interview. The second theme presents the participants’ perspective on revealing their HIV status and their ARV regimen to a pharmacist in case they would like to purchase an OTC product from any community pharmacy, while the third theme describes the reasons why some of the participants would not disclose their status to a pharmacist in case they would purchase an OTC. In Theme 2, one of the main reasons why some of the participants would like to receive the pharmacist advice and disclose their HIV status to a community pharmacist is to avoid any drug-drug interactions. One participant presents a situation in which she went to her community pharmacy to ask for the pharmacist's recommendation on an OTC. Based on the participant's ARV medication regimen, the pharmacist took the opportunity to consult with the prescribing physician. The consultation ensured the participant received the appropriate OTC and potential drug interactions were avoided.
“Yeah, yeah. Those working there who keeps files, they bring the file to the doctor, they open it … they all know. That one is there is Africa. So, we used to get scare of that because already we knew some people who are sick so if you know other people, you know even you are going to be like that.” (Participant13, Female) The following quotation portrays a growing impression of how vital it is for a few of the participants to hide their diagnosis to the medical professionals. The participant highlights that he would not seek the pharmacist's recommendation on an OTC, and he would not disclose his status with most of the medical staff. His use of terms “no reason … to know” emphasizes the need for this participant to keep his diagnosis a “secret.” Here we can see how he does not want anyone, including the medical professionals, to know his “secret.” When further asked why he would not disclose the HIV status, the participant did not offer any additional information. The participant vividly captures the process of not revealing his diagnosis and not asking for the pharmacist's advice on any OTC purchase.
“Like, when I was coughing heavily sometime, I went to {Pharmacy Name}, the clinic there. And she even contacted, um- the hospital. To ensure there is no drug interactions and- Mhm, yea.” (Participant 3, Female)
“No, I will not go to talk to them. Because it did happen to me, it's just only sometimes when I take the {OTC Name}. Yea, I just read the prescription, what the information on the box and I go get it and take it at home. uh, ya know, ya, hide it, of course. But I don't go to the counter and talk to it about it, no … No, no, no. I don't mention to them. I don't mention to them because there's no reason to you- you want them to know …” (Participant 4, Male)
We can perceive here Participant 3’ emphasis on the importance of revealing her This participant talked about routinely disclosing her HIV diagnosis to the medical professionals. “Everywhere I go. I went to my clinic- clinic, they took the form, put it there. Everywhere I go. Once it's medical place, I let them know.” (Participant 3, Female)
Similarly, another participant would not seek the pharmacist's advice because he finds the information on the medication guide informative. This participant also reinforced the lack of disclosure of the HIV status to a pharmacist. This is echoed by Participant # 8 who says:
Similarly, another participant shared her views of the importance of revealing her diagnosis to the pharmacist and also other medical team members.
“I have the prescription; it's already written in that thing. They write, they describe every new thing they try to tell me I have to wait and- just give me the damn thing, I can read …” (Participant 8, Male)
“so- and even I go to dental I have to fill out the form, the medicine I take so yeah, so I have to tell them. Everywhere I go like, they concern about the dental or maybe somebody related, I have to tell them I just write
On the contrary, Participant 14 would not ask for the pharmacist's 4
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pharmacists have to be mindful of the social and cultural background of the patient by keeping in mind these participants are afraid of disclosing their HIV status and use of ARV medications because of the confidentiality concerns. Pharmacists could benefit from continuing education credits that focus on cultural competency in African-born patients. The participants are coming from various African countries where confidentiality laws are different and might not be as strictly enforced as in the U.S. Therefore, re-assuring the patient that information about their disease state and medications would remain confidential would allow the pharmacists to develop a relationship with the participants. In order to develop a more “caring” relationship, the pharmacists should use a private space where they could counsel and address the participant's needs. Lastly, pharmacists could bring more awareness about their roles in medication management and a provider of health-care information. This awareness could be achieved by collaborating with physicians and other healthcare team-members, who could recommend talking to a pharmacist. Additionally, pharmacists should reinforce the confidentiality of all the medication information and encourage the patient to call them whenever they have questions. Furthermore, pharmacy educators might use some of the findings uncovered in this study when they teach students. For example, incorporating some socio-cultural awareness when creating the pharmacotherapy cases would prepare the students to better understand the various populations. Encouraging pharmacy students to develop more interprofessional healthcare fairs in the African-born community would be beneficial to the patient, student, pharmacist, and educator. For example, the healthcare fair would be an excellent opportunity to bring awareness of the pharmacists’ roles in the community.
advice because he relies on the physician's advice. When asked if he would share his diagnosis with the pharmacist, he responded negatively. He says: “No. No. What I buy there the {OTC Names}. No. {I don't talk to the pharmacist}. Yeah doctor [NAME] talk about it. Um, about the {OTC Names} I take that sometimes especially in the winter. Yeah, so he {the physician} knows that I'm taking this in the morning sometimes.” (Participant 14, Male) Discussion The participants described their interaction with the pharmacists as “transactional” in nature. The participants characterized the interaction with the pharmacists positively; however, most of them seemed unaware of the potential role that could be played by the pharmacists in assisting them to take ARV medications. Earlier quantitative research showed the role played by pharmacists in adherence to ARV medications in various populations with HIV.23,24 Additionally, the findings of a qualitative study conducted with PLWH and pharmacists in the San Francisco area showed that most of the participants do not think of a pharmacist as part of the adherence team.25 To better serve the PLWH in developing services for HIV one of the recommendations for pharmacies is to provide adequate workspace that promotes the development of a patient-pharmacist relationship with the main possibility of increasing adherence counseling.1 Our unique findings also show that the study participants did not perceive a personal relationship with the pharmacist. Most of the participants felt that they were not connected with the pharmacist, and whenever they had additional questions regarding their medication regimens, they would contact their physician. For participant 11, the interaction between pharmacist and the PLWH was described as a “business relationship.” This sense of “business” or “transactional” relationship might come from a lack of understanding of how the U.S. health system works and how pharmacist might counsel and advise them. Another qualitative study conducted with pharmacists from different settings in the Midwest highlighted the fact that pharmacists are not used at their full potential regarding their knowledge and training.26 This underuse of the pharmacists was also corroborated by our findings that showed most of the participants might not contact a pharmacist for further questions regarding their ARV medications. Furthermore, during the interview, the participant revealed reasons why they would not disclose their status to a pharmacist, such as lack of trust in the confidentiality of information because of their original roots. A few participants noted the difference between the privacy of medical information in the U.S. versus their country of origin. According to them, in their country of origin, the medical files might be left open, while other people could have access to their medical records that could result in “gossip.” These views were reflected in the findings of a recent qualitative study conducted in South African cities.27 This study presented situations where the confidentiality of the PLWH was violated in government clinics.27 Clearly, our unique findings support reasons for diagnosis secrecy and a tendency to not reveal their diagnosis to a pharmacist. The secrecy of their diagnosis and lack of trust persists in the participants despite of immigrating to the US some years ago. In contrast, some participants would disclose their diagnosis to the pharmacist. Possible speculation about those participants openness to reveal their diagnosis was their educational level and their better understanding of the confidentiality of the healthcare data in the U.S.
Limitations The limitations of this study must be acknowledged. The demographics of this sample was limited to gender, country of origin, self-reported diagnosis, and the country where treatment was initiated. Future research could have a larger representation of other African countries. This study did not use any medical records to validate the reported diagnosis, and the ARV medications used. It would be beneficial to follow this study up with further research where the medical records could validate the participants’ diagnosis and the prescribed ARV regimen. Lastly, within this sample, all of the participants had a form of insurance at the time of the interview. Finding non-insured participants were challenging because recruitment occurred via fliers through community pharmacies and clinics. Future studies would benefit from including non-insured participants who will have a different perspective of their interaction with the pharmacist. Conclusion The emerged themes showed that the participants’ perceptions of the interaction with the pharmacists were limited and it was referred as a “business” or “transactional interaction.” To better understand the interaction between pharmacists and PLWH of African origin, future studies could benefit from interviewing pharmacists from different settings. The results of this study showed that some African-born PLWH may not find it easy to disclose their diagnosis to a pharmacist, nor their ARV medications when purchasing an OTC. They may not want anyone to know about their “secret,” and this leads to various implications for health outcomes. Pharmacists might use these findings for progressing into more expansive patient care roles. One application could be culturally appropriate care as a way to build trust with PLWH of African origin so that they may feel more comfortable in consulting with the
Recommendations for pharmacists and pharmacy educators This study showed that these participants seemed unaware of the possible roles that pharmacists could play in their ARV medication management. When interacting with African-born PLWH, the 5
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pharmacists involved in their health care.
date: December 2018. 10. Minnesota HIV strategy: a comprehensive plan to end HIV/AIDS. Available at: https://www.health.state.mn.us/diseases/hiv/partners/strategy/mhs2019.pdf Accessed June-July, 2019. 11. Maine L. Pharmacists on the frontline of healthcare. Available at: http://www. thesullivanalliance.org/cue/index.html Accessed February-July, 2019. 12. Akinsete OO, Sides T, Hirigoyen D, et al. Demographic, clinical, and virologic characteristics of African-born persons with HIV/AIDS in a Minnesota hospital. AIDS Patient Care STDS. 2007;21(5):356–365. 13. Blood E, Beckwith C, Bazerman L, Cu-Uvin S, Mitty J. Pregnancy Among HIV-Infected Refugees in Rhode Island. AIDS Care Psychological and Socio Medical Aspects of AIDS/ HIV. vol. 21. 2009; 2009:207–211 (2). 14. Riessman CK. Narrative Methods for the Human Sciences. Sage; 2008. 15. Muylaert CJ, Sarubbi Jr V, Gallo PR, Neto MLR, Reis AOA. Narrative interviews: an important resource in qualitative research. Rev Esc Enferm USP. 2014;48(SPE2):184–189. 16. Geertz C. The Interpretation of Cultures: Selected Essays. vol. 5019. Basic books; 1973. 17. Reid S, Mash B. African Primary Care Research: qualitative interviewing in primary care. Afr J Prim Health Care Fam Med. 2014;6(1):E1–E6. 18. Morse J. Strategies for sampling. In: Morse JM, ed. Qualitative Nursing Research: A Contemporary Dialogue. London: Sage Publications; 1991. 19. Birks M, Chapman Y, Francis K. Memoing in qualitative research: probing data and processes. J Res Nurs. 2008;13(1):68–75. 20. Hsieh H-F, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–1288. 21. Miles MB, Huberman AM, Saldana J. Qualitative Data Analysis. Sage; 2013. 22. Lincoln YS, Guba EG. Naturalistic Inquiry. vol. 75. Sage; 1985. 23. Rosenquist A, Best BM, Miller TA, Gilmer TP, Hirsch JD. Medication therapy management services in community pharmacy: a pilot programme in HIV specialty pharmacies. J Eval Clin Pract. 2010;16(6):1142–1146. 24. Hirsch JD, Gonzales M, Rosenquist A, Miller TA, Gilmer TP, Best BM. Antiretroviral therapy adherence, medication use, and health care costs during 3 years of a community pharmacy medication therapy management program for Medi-Cal beneficiaries with HIV/AIDS. J Manag Care Pharm. 2011;17(3):213–223. 25. Cocohoba J, Comfort M, Kianfar H, Johnson MO. A qualitative study examining HIV antiretroviral adherence counseling and support in community pharmacies. J Manag Care Pharm. 2013;19(6):454–460. 26. Kibicho J, Pinkerton SD, Owczarzak J, Mkandawire-Valhmu L, Kako PM. Are community-based pharmacists underused in the care of persons living with HIV? A need for structural and policy changes. J Am Pharm Assoc. 2015;55(1):19–30. 27. Duby Z, Nkosi B, Scheibe A, Brown B, Bekker L-G. ‘Scared of going to the clinic’: contextualising healthcare access for men who have sex with men, female sex workers and people who use drugs in two South African cities. South Afr J HIV Med. 2018;19(1).
Funding This work was supported by the Olstein Fellowship; and the Doctoral Dissertation Fellowship at University of Minnesota. Declaration of interest None Appendix A. Supplementary data Supplementary data to this article can be found online at https:// doi.org/10.1016/j.sapharm.2019.07.009. References 1. Cocohoba J, Comfort M, Kianfar H, Johnson MO. A qualitative study examining HIV antiretroviral adherence counseling and support in community pharmacies. J Manag Care Pharm : JMCP. 2013;19(6):454–460. 2. Cramer JA, Roy A, Burrell A, et al. Medication compliance and persistence: terminology and definitions. Value Health. 2008;11(1):44–47. 3. Paterson DL, Swindells S, Mohr J, et al. Adherence to protease inhibitor therapy and outcomes in patients with HIV infection. Ann Intern Med. 2000;133(1):21–30. 4. Scott JD, Abernathy KA, Diaz-Linares M, Graham KK, Lee J. HIV clinical pharmacists–the US perspective. Farm Hosp. 2010;34(6):303–308. 5. Samuel O, Unonu JM, Dotson K, et al. Interdisciplinary care team with pharmacist in a community-based HIV clinic. J Natl Med Assoc. 2018;110(4):378–383. 6. Dilworth TJ, Klein PW, Mercier R-C, Borrego ME, Jakeman B, Pinkerton SD. Clinical and economic effects of a pharmacist-administered antiretroviral therapy adherence Clinic for Patients Living with HIV. J Manag Care Spec Pharm. 2018;24(2):165–172. 7. Shea KM, Hobbs AL, Shumake JD, Templet DJ, Padilla-Tolentino E, Mondy KE. Impact of an antiretroviral stewardship strategy on medication error rates. Bull Am Soc Hosp Pharm. 2018;75(12):876–885. 8. Minnesota department of health [website]. http://www.health.state.mn.us/divs/ idepc/diseases/hiv/index.html Available at:. 9. Minnesota Department of Health. HIV incidence report. Available at: http://www. health.state.mn.us/divs/idepc/diseases/hiv/stats/2017/hivinc.pdf 2017, Accessed
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Contents lists available at ScienceDirect
Research in Social and Administrative Pharmacy journal homepage: www.elsevier.com/locate/rsap
Narrative experiences of interactions with pharmacists among African-born persons living with HIV: “It's mostly business." Alina Cernasev1,∗, William L. Larson2, Todd Rockwood3, Cynthia Peden-McAlpine4, Paul L. Ranelli5, Olihe Okoro5, Jon C. Schommer1 1
University of Minnesota, College of Pharmacy, 308 Harvard Street SE, Minneapolis, MN, 55455, USA Allina Health Uptown Clinic, Park Nicollet, and North Memorial Infectious Disease, Allina Health, 1221 West Lake St., Suite 201, Minneapolis, MN, 55408, USA 3 University of Minnesota, School of Public Health, 420 Delaware Street SE, Minneapolis, MN, 55455, USA 4 University of Minnesota, School of Nursing, 308 Harvard Street SE Minneapolis, MN, 55455, USA 5 University of Minnesota, College of Pharmacy, 232 Life Science Duluth, 111 Kirby Drive, MN, 55812, USA 2
A R T I C LE I N FO
A B S T R A C T
Keywords: Pharmacist Disclosure Secrecy HIV/AIDS Interaction
Background: African-born persons constitute 1% of the total Minnesota population, yet 24% of new HIV infections occurred in this population in 2016. Furthermore, 32% of the African born persons living with HIV [PLWH] did not check their CD4 counts or viral load in 2018. Little is known of the role of pharmacists in antiretroviral (ARV) management in the PLWH of African origin. Objective: This study aimed to describe the experiences of African-born PLWH in their interactions with pharmacists and perceptions of pharmacists’ roles in fostering adherence to ARV therapy. Methods: A qualitative approach was used for this study. Recruitment via fliers for in-person interviews with African-born PLWH in Minnesota continued until saturation was achieved. Narrative Interviews with 14 participants lasting up to 2 h were conducted over five months. All interviews were audio recorded and transcribed verbatim by a professional transcription service. Conventional Content Analysis was used to analyze the data. Results: Three themes emerged from analyzed data “Interaction with the pharmacists,” “Revealing the diagnosis to a pharmacist,” and “Lack of disclosure of HIV status to a pharmacist.“ Conclusions: The participants referred to the interaction with pharmacists as a “business” or “transactional interaction.” To better understand the interaction between pharmacists and PLWH of African-born, future studies could benefit from interviewing pharmacists from different practice settings.
Introduction In the early 1980s, the landscape of infectious diseases changed by the identification of a mysterious disease later termed human immunodeficiency virus (HIV). Consequent to the development of antiretroviral (ARV) medications, HIV is now a chronic and manageable disease, especially in high-income countries. Adherence to ARV therapy is vital for patients because treatment suppresses the viral load, decreases the risk of drug resistance, and improves quality of life, prevents transmission of the virus, and ultimately increases life expectancy.1,2 Previous studies have recommended that persons living with HIV (PLWH) should take at least 95% of the prescribed doses to prevent the development of resistance.3 Along with other healthcare professionals, pharmacists in the U.S.
have been involved in patient care since the start of the pandemic.4 In the clinic context, the patients are referred to a pharmacist for medication adherence issues by a physician. In this situation, the pharmacist had full access to the patient's medication and treatment profile. Furthermore, the advantage of seeing a clinical pharmacist is that the pharmacists have the flexibility to schedule follow-up appointments with the patient to further discuss the medication regimen. Various studies demonstrated the clinical role of pharmacists in helping PLWH to improve their adherence to ARV therapy and decrease the cost of treatment due to hospitalizations.5,6 In the hospital settings, a recent study showed that the staff pharmacists were able to reduce error rates for hospitalized PLWH.7 In the last three decades, Minnesota has seen an increase in the number of immigrants from Africa, noticeably in the mid-1990s. In a
∗
Corresponding author. E-mail addresses: [email protected] (A. Cernasev), [email protected] (W.L. Larson), [email protected] (T. Rockwood), [email protected] (C. Peden-McAlpine), [email protected] (P.L. Ranelli), [email protected] (O. Okoro), [email protected] (J.C. Schommer). https://doi.org/10.1016/j.sapharm.2019.07.009 Received 18 February 2019; Received in revised form 11 July 2019; Accepted 14 July 2019 1551-7411/ © 2019 Elsevier Inc. All rights reserved.
Please cite this article as: Alina Cernasev, et al., Research in Social and Administrative Pharmacy, https://doi.org/10.1016/j.sapharm.2019.07.009
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extensive review of literature. To ensure that the instrument aligned with the scope of this research, the PI consulted with the study team comprised of experienced researchers and health professionals (pharmacists and physicians) specializing in HIV. The interview questions can be found in Appendix 1.
previous report from the Minnesota Department of Health (MDH), some community members estimate that number to be close to 100,000 African immigrants.8 Despite the fact that the African-born population is around 1% of the total Minnesota population, 24% of new HIV infections in 2016 occurred in this population.9 Per a recent report, 32% of African-born PLWH did not check their CD4 or viral load in the last year.10 Furthermore, in the same statement, it was reported that the women of African origin were the most impacted by HIV.10 There are many impediments that cause important difficulties not only for HIV prevention, but also for treatment and care options: language, lack of education about HIV, and cultural beliefs about the role of the pharmacist in their medication regimen. Pharmacists are the third largest healthcare profession in the U.S. and one of the most accessible professionals.11 Although previous quantitative studies conducted in the U.S. suggest that this population is adherent to ARV therapy, the studies are limited because they did not capture social and cultural perspectives of PLWH when interacting with the pharmacist.1213 Therefore, it would be valuable to delve into this understudied population to better understand their experiences when interacting with their pharmacist. This study aimed to describe the perceptions of African-born PLWH regarding pharmacists’ roles in fostering adherence to ARV therapy.
Data analysis The initial step before data analysis is transcription. After the interviews were audio recorded, the records were transcribed verbatim by a professional transcription service (QHR Consultants, Madison, WI). Before data analysis took place, the PI read over the transcripts multiple times to immerse herself in the world of the participants. While reading the transcripts, the PI took notes in the form of reflective memos.19 Before analysis took place, the PI took time to reflect on the preconceptions about the experience as part of the personal memo. Conventional Content Analysis was selected as the main method for NI analysis.20 A key characteristic of the Conventional Content Analysis is not using preconceived categories. On the contrary, the Conventional Content Analysis enables the categories and names for categories to arise from the data.20 In this situation, researchers engagement in the data foster new perceptions.20 This method has been described in the qualitative analysis as inductive category development.20 Inductive coding occurred line by line and facilitated the development of initial codes.21 Each code had a descriptor that defined the backgrounds of code and enabled the differences and similarities between codes to arise. After all the codes were extracted, the codes were analyzed for similarities and placed into categories.20,21 The categories were linked based on the commonalities of content topic that facilitated the development of themes.20,21 All the data analysis, such as extraction of codes, sub-codes, categories, themes, and writing memos, were conducted using Dedoose, a qualitative software that helped in managing data.
Methods Narrative Interviews (NI) elicit the story of individuals and have been selected as a research methodology for this study.14 A key purpose of NI is to encourage and inspire the participant to share a significant event of his/her life with the interviewer.14,15 One of the main characteristics of NI is the use of semi-structured dialogue with probing questions if the participant does not discuss the topic in the probes.14,15 The interviewer impact in the narrative process should be negligible because the purpose of NI is to allow the interviewee to freely recreate social events.15
Trustworthiness of data Sampling and data collection Lincoln and Guba's framework was used to address and meet criteria for quality and rigor.22 These authors recommended four criteria, credibility, dependability, confirmability, and transferability to critique narrative research studies.22 Each of the four criteria for trustworthiness were achieved at different stages of the data collection and analysis. In this study, the credibility criteria was obtained by audio recording, transcription, and analytical memos written during data analysis. The audiotapes were transcribed verbatim by a professional transcription service where each transcript was checked for accuracy twice by the company. The analytical memos were kept organized by Dedoose; an analytical software that allowed all the memos to receive a time stamp and be easily retrieved with the analyzed text. Additionally, the emerged themes were refined based on the written analytical memos. Dependability indicates the solidity of data over a period and across situations (Lincoln & Guba, 1985). In this study, dependability criteria was obtained by careful documentation that occurred in the interview process. For example, after each interview, the PI wrote summaries that captured non-verbal communication that might be relevant to the data analysis. Furthermore, reflective journaling allowed rigor building because it captured non-verbal responses during interviews and other experiences during data collection. Confirmability refers to the possibility of reaching congruence between two or more team members regarding the data's relevance, sense, and accuracy (Lincoln & Guba, 1985). The roots of this criterion are in the information provided by the data that ensures the interpretations of the participants' words are represented accurately (Lincoln & Guba, 1985). This criterion was accomplished by careful documentation, intercoder checks, and the development of the codes. Intercoder checks
Qualitative researchers look for thick descriptions and rich themes that emerge from the interviews, therefore reaching a level of saturation.16 Saturation has been defined as a point beyond which no significantly new information is being obtained.17 In this study, the recruitment of participants continued until data saturation was obtained. Once saturation of the data was achieved, no further interviews were arranged.17,18 For this study, saturation was reached at interview number 14. After the study received approval from the Institutional Review Board (IRB) of the University of Minnesota, the recruitment through fliers started. The fliers were placed in community pharmacies, HIV clinics, and one AIDS service organization located in the Twin Cities area of Minnesota. The inclusion criteria were African-born adults who lived in Minnesota, had a diagnosis of HIV, taking ARV medications, spoke English, and were willing to share their stories. The fliers had the researcher's contact information and an explanation of the research study. The interested persons contacted the principal investigator (PI) via phone and set up convenient interview times and locations. At the beginning of each interview, the purpose of the study was explained, questions were answered, and the participant reviewed an informed consent form. The PI asked for permission to audio recording the interview. All the participants agreed to be audio recorded. All the interviews were face-to-face, and each interview ranged in length from half an hour up to 2 h. Each of the participants was offered compensation (a $50 gift card) for their participation in the study, to reimburse them for their time and the costs of participating (e.g., childcare, transportation). The recruitment was launched in December 2017 and continued until saturation of the data was reached in April 2018. The interview questions were developed by the PI based on 2
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participant explained that the pharmacist asks her additional questions to better determine if any changes are needed in her treatment.
refers to the codes being checked by another researcher. In this study the codes were reviewed by two independent researchers (JS and OO). For example, one researcher reviewed the codes of two transcripts; while the other researcher (OO) coded four interviews independently. Then, the team met several times to discuss the codes and consensus was achieved. Transferability discusses to the level to which the results of the study might be transferred to or have applications in other settings (Lincoln & Guba, 1985). This step was obtained by thick, vivid explanations. The thick and rich descriptions were achieved at the fourteenth interview, at which point no new information was forthcoming.
“Oh yea, they are very nice to me. The lady at, uh, [PHARMACY], she'sshe's nice. She calls me, asks me how I'm doing, how are my meds doing. Even the driver that brings- deliver it, he's a nice guy. Mhm.” (Participant 3, Female) Participant 4 reinforced the “transactional” nature of the relationship; pointing to the similarities that exist regardless of which pharmacy he uses to refill his ARV medications. He also stated that the “payment” for medications plays an important role in the “transactional” part of the prescription. In the quote below this participant expressed his personal view of the “transactional” relationship with the pharmacist.
Results All 14 participants were taking ARV medications at the time of the interview. Eight participants were female and six were male. Eight of the participants were diagnosed with HIV in the U.S., while the rest of the participants received the diagnosis in their country of origin. The participants were from different geographic areas of Africa. Four participants were born in Ethiopia, four Kenya, two Liberia, one Tanzania, one Togo, one Zambia, and one Guinea. Two of the participants identified themselves as college students. One person identified himself as homosexual. All participants were insured at the time of the interview. Most were recipients of Medicaid (Medical Assistance in Minnesota). All the narratives were characterized by secrecy despite the fact that one or two decades had passed since diagnosis. The secrecy of their diagnosis was observed throughout all the interviews where the participants would refrain from using the word “HIV” and refer it as “this,” “it,” or “the disease.” When asked if they would disclose their HIV positive status to a pharmacist, two themes emerged from the participants’ responses: Revealing the diagnosis to a pharmacist and Lack of disclosure of the status to a pharmacist.
“I think- there's no different as long as you pay your, ya know, the fee that they want you so they will give you the medication. So, the thing, ya know- when I used to pick it from- So when I go there, ya know, they willfirst of all, I will call them and order the medication to refill. So, they will refill it and when I go there to pick it up, I will go and pick it up and so. It is depend- if I have the money, the fee that they wanted, I will pay the fee and then they will give me the medication, so there is no problem.” (Participant 4, Male) Participant 11 uses the term “business communication” to illustrate the relationship with the pharmacist. The participant also emphasized the lack of a caring relationship between him and the pharmacist. The relationship between the physician and the patient was perceived as more caring and comforting, in contrast to a “business communication” with the pharmacist. He further elaborated: “No, no, no, like a doctor like the feeling that you get like a support type of thing. It's mostly just like mostly business communication. So, it's notyeah, you won't notice any change in their voice or anything like that. I don't feel anything from them. Just like, “yeah did you order this?” “Yeah, it's fine you can have that.” (Participant #11, Male)
Theme 1: Interaction with the pharmacist
We can see in the following excerpt a positive interaction perceived through pharmacy services such as providing refills and resolving insurance issues. For instance, Participant 6 states that he has a good relationship with the pharmacist because of the services they perform including replenishment of his ARV medications. However, the participant did not clarify further if the pharmacist played a role in the treatment he received.
The data analysis resulted in the emergence of the central theme that describes the participants’ perceptions of pharmacist roles in their treatment. The study participants were asked not only to describe the interaction with the pharmacist when they receive ARV medications; but also, to present examples positive or negative of the interaction with the pharmacist. The study participants received their ARV medications from community pharmacies, outpatient pharmacies, and mail order. Overall, the study participants used favorable terms such as “nice,” “good,” “business” to characterize their interaction with the pharmacist. None of the participants described the interaction with the pharmacist negatively. Furthermore, none of the study participants were aware that the PI was a pharmacist. Although the participants characterized their interaction with the pharmacist positively, most of them described it as a “transactional” relationship. In this context, “transactional” means that the interaction with the pharmacist is generally business-like; the pharmacist interaction with the participant might not go further to developing a relationship or seeking to better understand the participant's issues. For some participants, the concept of interaction with the pharmacist was described as being “good” because the pharmacist counsels them on the prescribed ARV medications.
“Yea, yea. I used to talk with them by telephone. Eh, I tell them to res- I want to refill my medicine. You make it ready for me, I take it on this day. They do and I go and pick [it up] with my family.” (Participant # 6, Male) In contrast, two participants’ experiences describe a trusting and caring experience rather than a “transactional” one with the pharmacist. Both experiences occurred in the clinic with the clinical pharmacist where they go for routine follow-up. In this context, these two participants do not receive their ARV medications directly from the clinical pharmacist. These two participants pick up their medications from the community pharmacy; but they also receive medical advice from the clinical pharmacist. Participant 10 describes the meeting with her clinical pharmacist who explained the rationale for separating some of her medications. In the following quotation, the participant illustrates the active role played by the clinical pharmacist in managing her current ARV regimen. The pharmacist says “No” multiple times suggesting a strong concern for his patient's medication regimen. This illustrates how the pharmacist builds trust by playing an active role in monitoring the medication regimen.
“A good one. When I visit, they give me the new medication. She {the pharmacist} explains to me how to take it and sometimes what will happen and so forth so … we are in good relationship.” (Participant 1, Female) The term “nice” was used by a participant to characterize the relationship with the mail order pharmacist and the pharmacy staff. When asked to elaborate the meaning of “nice” relationship, the
“Oh, they are good (laughs) they are good, very good, very good. Yeah, they would also advise like what to- OK, they are- in fact before then I 3
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down the medicine that I take so yeah.” (Participant 7, Female)
didn't know, like when you're taking HIV medication, shouldn't mix with any other medication. Yeah? I didn't know. I would take, like if they've given me, like if I have HIV- my, my, my normal medication and then I have maybe something else. Maybe like the calcium, the vitamin, I would put them together and take them together at a go. So, this pharmacist told me “no, no, no. You have two HIV medicine, you take them on their own.” On their own, yeah. So, I if I have any other medication then I take them um, maybe an hour or two after. Yeah, but HIV medication, take them singly, just like that. For them to work better.” (Participant 10, Female)
On the contrary, one participant only became aware of the importance of disclosing his HIV status and the ARV regimen to a pharmacist after the discussion with his physician. His use of the words “never really disclosed” in the following excerpt emphasized his unawareness of the importance to revealing the disease status. “Mmm. Yes, I actually I just realized that today which usually he did [DOCTOR NAME] just told me I should probably let them know I am taking this medication, but I hadn't really thought about it, so I never really disclosed that information like I'm taking this kind of medication. Yeah, so I never would disclose it when I would pick up any allergy or fill my medications I never really disclose, I just pick it up. I never thought it would be that impactful. But I guess now as my doctor mentioned it … But yeah, if I ever have in the future, I probably do have to start letting them know.” (Participant 11, Male)
The following quotation also accurately captures the active role played by a clinical pharmacist who meets with the participant quarterly to discuss the medication regimen. Participant 12 vividly describes how the clinical pharmacist plays an essential role in his medication regimen by making necessary adjustments. “Yes, like {Clinic Name} has a pharmacist … they look at my medications and they see on my lab test, they want to take out some medication I will go and meet and then they will explain to me you don't need to take this other one. We're replacing it with this or stuff like that. So, I mean, that happens 3 months, quarterly. Like I went for dialysis last week and they told me to bring my medication and they took the list … they going to do some adjustment based upon my lab tests.” (Participant 12, Male)
Theme 3: Lack of disclosure of the HIV status In the third theme, the participants narrated their experiences along with their reasons on why they would not disclose their HIV status to a pharmacist. Before the results of the third theme are presented, it is vital to understand the participants' African background regarding confidentiality and distrust of healthcare professionals. For example, one of the participants clarified that in their home country, healthcare staff have access to a person's files containing confidential information such as the HIV diagnosis. According to this participant statement, a healthcare professional could easily open the file and disclose her diagnosis to others. She further elaborates:
Theme 2: Revealing the diagnosis to a pharmacist The following themes, Theme 2: Revealing the diagnosis to a pharmacist and Theme 3: Lack of the disclosure of the HIV status, emerged as all of the participants responded to the scenario “if you have to buy an Over-the-Counter (OTC) product from any chain pharmacy, would you go to talk to a pharmacist and ask for guidance?” during the interview. The second theme presents the participants’ perspective on revealing their HIV status and their ARV regimen to a pharmacist in case they would like to purchase an OTC product from any community pharmacy, while the third theme describes the reasons why some of the participants would not disclose their status to a pharmacist in case they would purchase an OTC. In Theme 2, one of the main reasons why some of the participants would like to receive the pharmacist advice and disclose their HIV status to a community pharmacist is to avoid any drug-drug interactions. One participant presents a situation in which she went to her community pharmacy to ask for the pharmacist's recommendation on an OTC. Based on the participant's ARV medication regimen, the pharmacist took the opportunity to consult with the prescribing physician. The consultation ensured the participant received the appropriate OTC and potential drug interactions were avoided.
“Yeah, yeah. Those working there who keeps files, they bring the file to the doctor, they open it … they all know. That one is there is Africa. So, we used to get scare of that because already we knew some people who are sick so if you know other people, you know even you are going to be like that.” (Participant13, Female) The following quotation portrays a growing impression of how vital it is for a few of the participants to hide their diagnosis to the medical professionals. The participant highlights that he would not seek the pharmacist's recommendation on an OTC, and he would not disclose his status with most of the medical staff. His use of terms “no reason … to know” emphasizes the need for this participant to keep his diagnosis a “secret.” Here we can see how he does not want anyone, including the medical professionals, to know his “secret.” When further asked why he would not disclose the HIV status, the participant did not offer any additional information. The participant vividly captures the process of not revealing his diagnosis and not asking for the pharmacist's advice on any OTC purchase.
“Like, when I was coughing heavily sometime, I went to {Pharmacy Name}, the clinic there. And she even contacted, um- the hospital. To ensure there is no drug interactions and- Mhm, yea.” (Participant 3, Female)
“No, I will not go to talk to them. Because it did happen to me, it's just only sometimes when I take the {OTC Name}. Yea, I just read the prescription, what the information on the box and I go get it and take it at home. uh, ya know, ya, hide it, of course. But I don't go to the counter and talk to it about it, no … No, no, no. I don't mention to them. I don't mention to them because there's no reason to you- you want them to know …” (Participant 4, Male)
We can perceive here Participant 3’ emphasis on the importance of revealing her This participant talked about routinely disclosing her HIV diagnosis to the medical professionals. “Everywhere I go. I went to my clinic- clinic, they took the form, put it there. Everywhere I go. Once it's medical place, I let them know.” (Participant 3, Female)
Similarly, another participant would not seek the pharmacist's advice because he finds the information on the medication guide informative. This participant also reinforced the lack of disclosure of the HIV status to a pharmacist. This is echoed by Participant # 8 who says:
Similarly, another participant shared her views of the importance of revealing her diagnosis to the pharmacist and also other medical team members.
“I have the prescription; it's already written in that thing. They write, they describe every new thing they try to tell me I have to wait and- just give me the damn thing, I can read …” (Participant 8, Male)
“so- and even I go to dental I have to fill out the form, the medicine I take so yeah, so I have to tell them. Everywhere I go like, they concern about the dental or maybe somebody related, I have to tell them I just write
On the contrary, Participant 14 would not ask for the pharmacist's 4
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pharmacists have to be mindful of the social and cultural background of the patient by keeping in mind these participants are afraid of disclosing their HIV status and use of ARV medications because of the confidentiality concerns. Pharmacists could benefit from continuing education credits that focus on cultural competency in African-born patients. The participants are coming from various African countries where confidentiality laws are different and might not be as strictly enforced as in the U.S. Therefore, re-assuring the patient that information about their disease state and medications would remain confidential would allow the pharmacists to develop a relationship with the participants. In order to develop a more “caring” relationship, the pharmacists should use a private space where they could counsel and address the participant's needs. Lastly, pharmacists could bring more awareness about their roles in medication management and a provider of health-care information. This awareness could be achieved by collaborating with physicians and other healthcare team-members, who could recommend talking to a pharmacist. Additionally, pharmacists should reinforce the confidentiality of all the medication information and encourage the patient to call them whenever they have questions. Furthermore, pharmacy educators might use some of the findings uncovered in this study when they teach students. For example, incorporating some socio-cultural awareness when creating the pharmacotherapy cases would prepare the students to better understand the various populations. Encouraging pharmacy students to develop more interprofessional healthcare fairs in the African-born community would be beneficial to the patient, student, pharmacist, and educator. For example, the healthcare fair would be an excellent opportunity to bring awareness of the pharmacists’ roles in the community.
advice because he relies on the physician's advice. When asked if he would share his diagnosis with the pharmacist, he responded negatively. He says: “No. No. What I buy there the {OTC Names}. No. {I don't talk to the pharmacist}. Yeah doctor [NAME] talk about it. Um, about the {OTC Names} I take that sometimes especially in the winter. Yeah, so he {the physician} knows that I'm taking this in the morning sometimes.” (Participant 14, Male) Discussion The participants described their interaction with the pharmacists as “transactional” in nature. The participants characterized the interaction with the pharmacists positively; however, most of them seemed unaware of the potential role that could be played by the pharmacists in assisting them to take ARV medications. Earlier quantitative research showed the role played by pharmacists in adherence to ARV medications in various populations with HIV.23,24 Additionally, the findings of a qualitative study conducted with PLWH and pharmacists in the San Francisco area showed that most of the participants do not think of a pharmacist as part of the adherence team.25 To better serve the PLWH in developing services for HIV one of the recommendations for pharmacies is to provide adequate workspace that promotes the development of a patient-pharmacist relationship with the main possibility of increasing adherence counseling.1 Our unique findings also show that the study participants did not perceive a personal relationship with the pharmacist. Most of the participants felt that they were not connected with the pharmacist, and whenever they had additional questions regarding their medication regimens, they would contact their physician. For participant 11, the interaction between pharmacist and the PLWH was described as a “business relationship.” This sense of “business” or “transactional” relationship might come from a lack of understanding of how the U.S. health system works and how pharmacist might counsel and advise them. Another qualitative study conducted with pharmacists from different settings in the Midwest highlighted the fact that pharmacists are not used at their full potential regarding their knowledge and training.26 This underuse of the pharmacists was also corroborated by our findings that showed most of the participants might not contact a pharmacist for further questions regarding their ARV medications. Furthermore, during the interview, the participant revealed reasons why they would not disclose their status to a pharmacist, such as lack of trust in the confidentiality of information because of their original roots. A few participants noted the difference between the privacy of medical information in the U.S. versus their country of origin. According to them, in their country of origin, the medical files might be left open, while other people could have access to their medical records that could result in “gossip.” These views were reflected in the findings of a recent qualitative study conducted in South African cities.27 This study presented situations where the confidentiality of the PLWH was violated in government clinics.27 Clearly, our unique findings support reasons for diagnosis secrecy and a tendency to not reveal their diagnosis to a pharmacist. The secrecy of their diagnosis and lack of trust persists in the participants despite of immigrating to the US some years ago. In contrast, some participants would disclose their diagnosis to the pharmacist. Possible speculation about those participants openness to reveal their diagnosis was their educational level and their better understanding of the confidentiality of the healthcare data in the U.S.
Limitations The limitations of this study must be acknowledged. The demographics of this sample was limited to gender, country of origin, self-reported diagnosis, and the country where treatment was initiated. Future research could have a larger representation of other African countries. This study did not use any medical records to validate the reported diagnosis, and the ARV medications used. It would be beneficial to follow this study up with further research where the medical records could validate the participants’ diagnosis and the prescribed ARV regimen. Lastly, within this sample, all of the participants had a form of insurance at the time of the interview. Finding non-insured participants were challenging because recruitment occurred via fliers through community pharmacies and clinics. Future studies would benefit from including non-insured participants who will have a different perspective of their interaction with the pharmacist. Conclusion The emerged themes showed that the participants’ perceptions of the interaction with the pharmacists were limited and it was referred as a “business” or “transactional interaction.” To better understand the interaction between pharmacists and PLWH of African origin, future studies could benefit from interviewing pharmacists from different settings. The results of this study showed that some African-born PLWH may not find it easy to disclose their diagnosis to a pharmacist, nor their ARV medications when purchasing an OTC. They may not want anyone to know about their “secret,” and this leads to various implications for health outcomes. Pharmacists might use these findings for progressing into more expansive patient care roles. One application could be culturally appropriate care as a way to build trust with PLWH of African origin so that they may feel more comfortable in consulting with the
Recommendations for pharmacists and pharmacy educators This study showed that these participants seemed unaware of the possible roles that pharmacists could play in their ARV medication management. When interacting with African-born PLWH, the 5
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