Barriers to HIV Treatment Adherence: A Qualitative Study of Discrepancies Between Perceptions of Patients and Health Providers in Tanzania and Uganda

Abstract

Previous qualitative studies about antiretroviral therapy (ART) adherence have largely focused on patient experiences. Less is known about the perspective of health care providers—particularly in low-income countries—who serve as gatekeepers and influencers of patients' HIV care experiences. This study explored patients' and providers' perceptions of important ART adherence determinants. Interviews were conducted at HIV treatment sites in Tanzania and Uganda, with adult patients on ART (n = 148), and with health care providers (n = 49). Patients were asked about their experiences with ART adherence, and providers were asked about their perceptions of what adherence challenges are faced by their patients. All interviews were conducted in local languages; transcripts were translated into English and analyzed using a codebook informed by the social ecological model. Themes were examined across and within countries. Adherence-related challenges were frequently reported, but patients and providers did not often agree about the reasons. Many patients cited challenges related to being away from home and therefore away from their pill supply; and, in Uganda, challenges picking up refills (access to care) and related to food sufficiency/diet. Providers also identified these access to care barriers, but otherwise focused on different key determinants (e.g., they rarely mentioned food/diet); instead, providers were more likely to mention alcohol/alcoholism, stigma, and lack of understanding about the importance of adhering. These findings suggest areas of opportunity for future research and for improving clinical care by aligning perceptions of adherence challenges, to deliver better-informed and useful ART counseling and support.

Introduction

Highly-effective antiretroviral therapy (ART) has been transformative in extending and improving the lives of people living with HIV (PLHIV).¹ But successful treatment requires life-long daily pill taking, which can introduce adherence-related challenges that affect morbidity and mortality.^2,3 It is therefore essential to understand what factors affect adherence, and the barriers and enablers faced by patients.^4,5 Previous articles examining barriers to ART adherence^6

–10 have identified important factors, such as financial constraints,¹¹ food insecurity,^12

–17 care preferences, including use of traditional medicine,¹⁸ religiosity¹⁹ and other cultural factors,^20,21 ART side effects,²² day-to-day dosage scheduling challenges,^23,24 and substance use and abuse.^25

–28 This literature has primarily used health behavior frameworks, such as the Theory of Planned Behavior and the Health Behavior Model,^29

–32 which focus on the patient experience and omit the perspective of other key informants—such as health care providers.

Health care providers are gatekeepers and influencers of patients' experiences with the health system and with HIV care.^33,34 Their impressions and opinions of adherence determinants may be critical in shaping patient interactions, clinical care recommendations, and the success of adherence interventions. Although there is an increasing body of literature on providers' opinions about their patients' HIV care experiences^35

–38 (provider stigma toward HIV-positive patients constitutes a separate but related literature),^39

–44 very few studies have taken a comparative approach to understanding where patients' and providers' perceptions of ART adherence determinants overlap or differ.

This study draws on primary qualitative data collected through interviews with patients and providers in Tanzania and Uganda, and uses Action Identification Theory (AIT)⁴⁵ to explore areas of convergence and discrepancy between these two groups' opinions. AIT is a social psychology theory that posits how people's actions are influenced by their broader thoughts and intentions. It proposes that actions can be arranged hierarchically, from the level of how (details of an action) to why (motivations for an action and its implications). For this analysis, the social ecological model is used to analyze perceptions of adherence determinants, and AIT informs the interpretation of differences between groups' perceptions of key determinants.

Methods

Study setting

Qualitative data were collected at high-volume ART clinics in southwestern Tanzania (hospitals, health centers, and dispensaries; n = 8) and northern Uganda (hospitals and health center levels 3 and 4; n = 10) in 2015. In both countries, HIV care (including ART) is provided through specialized clinics at all levels of the health system; at the time of this study, patients on ART in Tanzania were receiving their medications monthly, whereas patients in Uganda were eligible to receive medications once every 3 months. Sites were primarily located in rural areas of both countries, with a small number in peri-urban locations.

Participant recruitment

At each participating facility, interviews were conducted with patients and providers. A random subset of adults visiting each participating facility for an ART refill (stratified to ensure inclusion of both male and female respondents) were approached and briefed about the study; only those who had been on ART for at least 12 months were eligible to participate. Eligible providers were those who routinely provide HIV care at the participating health facilities; sampling aimed to recruit diversity across cadres. All prospective participants had the opportunity to ask questions and provided oral assent before the interview began. The sample size was calculated based on available resources: a minimum of 10–12 patients at each facility, and up to 3 health workers per facility.

Data collection

Qualitative interview guides for patients and providers were developed and revised based on feedback from research teams in both countries. There were two different interview guides for patients (administered to different respondents, independently sampled from one another): one with a focus on adherence experiences, and another that queried about that day's visit (but also included some adherence-related questions); data from both are included in this study as relevant (these guides were developed and implemented for an evaluation project; this analysis uses a subset of the qualitative data collected at baseline to address the research questions presented in this study). These instruments included open-ended questions about experiences with ART adherence, including perceived benefits and challenges (e.g., “What do you perceive as most difficult about taking ARV medicines?” and “If you sometimes miss a dose of ART, please can you tell me the reasons—can you give an example or two?”). There were also specific questions about a number of potential adherence-related challenges: alcohol use; food and nutrition; family and community forces; discrimination and stigma; and health care access. Providers were asked a set of general and open-ended questions about their perceptions of what challenges patients face for ART adherence.

Final guides were translated into Swahili (for use in Tanzania), and Acholi and Langi (for use in Uganda). The guides were pilot tested and slight modifications (for ease of administration and comprehension) were made before commencing data collection. Interviews were conducted in a private space at each health facility by trained qualitative interviewers who were provided additional training and information about this study and its protocol. Interview responses were recorded through detailed note taking; interviews lasted between 20 and 40 min on average.

Data analysis

Interview notes were translated into English. A codebook was developed based on the social ecological model (emergent codes were also identified inductively from a subset of transcripts). This codebook was imported to NVivo software (QSR International, v11) and was used to analyze all transcripts. Themes and variations within the codes (e.g., if findings varied between male and female patients) were examined across patients and countries. Count data were aggregated and summarized for questions that were asked identically to all participants.

Ethics review

This research was deemed exempt from human subjects review by the Harvard T.H. Chan School of Public Health; no identifiable information was collected on any of the participants. All interviewees provided oral assent before participating.

Results

Interviews were conducted with patients (n = 148; n = 89 in Tanzania, n = 59 in Uganda) and with service providers (n = 49; n = 25 in Tanzania, n = 24 in Uganda). Table 1 shows characteristics of interviewees. Most patients interviewed were female (69% in Tanzania, 56% in Uganda). Patients were on average 41.5 years old in both countries; time since HIV diagnosis was longer on average in Uganda (6.5 years) than Tanzania (4 years), as was time since ART initiation (4 years in Uganda vs. 3 years in Tanzania). In both countries, most patient participants were engaged in agricultural activities for work (89.5% of those in Tanzania and 62.7% of those in Uganda). Reported travel time to the health facility was nearly twice as long in Uganda (102 min) than in Tanzania (64 min). Interviewed providers had ∼3–4 years of experience with HIV care in both countries; nurses were the most common type of provider interviewed in Uganda, while the interviewees represented a wider range of cadres in Tanzania.

Table 1.

Characteristics of Interview Participants, by Country and Respondent Type

Patients	Tanzania (n = 89)	Uganda (n = 59)
Sex, female, n (%)	61 (68.5)	33 (55.9)
Age, years, average (median)	41.5 (41)	41.5 (40)
Years since diagnosis, average (median)	4 (3)	6.5 (7)
Years since ART initiation, average (median)	3 (2)	4 (3)
Occupation: Agriculture, n (%)	77 (89.5)	37 (62.7)
Laborer, n (%)		10 (17.0)
Others, n (%)	9 (10.5)^a	12 (20.3)^b
Travel time to health facility, minutes, average (median)	64 (60)	102 (60)

Providers	Tanzania (n = 25)	Uganda (n = 24)
Cadre: Clinician, n (%)	3 (12.0)	2 (8.3)
Enrolled nurse, n (%)		8 (33.3)
Nursing officer, n (%)		10 (41.7)
Other nurse, n (%)		4 (16.7)
Nurse (includes nurse-midwife and nurse assistant)	5 (25.0%)
Medical assistant/attendant, n (%)	4 (16.0)
Other,^c n (%)	13 (52.0)
Years working in HIV care, average	2.9	3.8

Most common “other” occupation in Tanzania: business person, student (also four people were missing occupation data).

Most common “other” occupation in Uganda: vendor, tailor.

“Other” provider types in Tanzania: pharmacist, laboratory technician, clerk, expert client, counselor.

ART, antiretroviral therapy.

When asked if they had ever faced an ART adherence challenge, over half of patient interviewees (53.2%, n = 83) responded in the affirmative (no gender differences); this was more common in Uganda (73.0%, n = 46) than in Tanzania (39.8%, n = 37). Nearly all providers interviewed (96.0%, n = 47) spoke about patients' adherence challenges (Tanzania, n = 24, 96.0%; Uganda, n = 23, 95.8%). Patients and providers generally emphasized different challenges for ART adherence, although response patterns were remarkably consistent across the two study countries (Table 2).

Table 2.

Reported Determinants of Antiretroviral Therapy Adherence, by Country and Respondent Type

	Tanzania		Uganda
	Patients (n = 42)	Providers (n = 24)	Patients (n = 46)	Providers (n = 23)
Away from home	12	0	15	3
Challenges picking up refills	1	5	20	12
Food/diet	4	0	8	1
Pill burden	5	1	3	1
Side effects	2	1	5	3
Alcohol	3	2	1	4
Lack of understanding	0	5	2	0
Stigma	1	0	0	5
Community norms	0	0	1	3
Other treatment approaches	0	4	0	1
Transfer to other facilities	0	0	0	4

Individual factors

Overall, individual determinants of adherence (lower-level factors, on the AIT hierarchy) appeared much more salient for patients than providers. The most commonly mentioned challenge for patients across countries was being away from home (n = 27, 30.7%) and therefore away from their pill supply, particularly for employment or family funerals. This was the top reason for respondents in Tanzania and the second-most common reason in Uganda. But very few providers cited this adherence issue for their patients (only 6.4%, or three providers total).

“I sometimes travel with the hope of coming back but later fail to return for days, especially when I go for a funeral, so I end up missing my medicines for days.” (Patient, male, Uganda)

“When it is the time to plant, you go to the farm very early and return late, so the timing to take your medication can change.” (Patient, female, Tanzania)

Diet, including having sufficient quantity and quality food, was mentioned by 13.6% of patients (n = 12) during open-ended questions: “Not taking a balanced diet because of my economic situation.” (Patient, female, Tanzania); “The problem is eating food before taking ARVs; in morning I have no food.” (Patient, female, Uganda). However, only 1 provider mentioned food/diet as a patient adherence challenge. When asked a close-ended question about whether their ART adherence was affected by lack of food, many patients reported yes; this was much more common in Uganda (62.2%) than in Tanzania (23.5%) and, in both countries, was more common among women than men.

In both countries, pill burden and side effects were more likely to be mentioned by patients than providers; pill burden was more common in Tanzania, and side effects in Uganda.

There were some individual-level factors that were mentioned more often by providers than patients (although relatively infrequently overall). In Uganda, providers were more likely than patients to mention alcohol/alcoholism as an adherence-related challenge during open-ended questions (n = 4; “Alcoholism is a major challenge especially for the men because they get drunk and forget their appointment dates.” [Provider, Uganda]). Across countries, patient respondents were asked close-ended questions specifically about this, and less than 5% (n = 4) replied that alcohol was an adherence problem for them.

Although 10% of providers in Tanzania reported that patients do not understand the importance of ART adherence (n = 5), data from patients suggest otherwise: no patients in Tanzania spoke about this in open-ended questions. During open-ended questions in Uganda, no providers spoke of this and only two patients mentioned it. Although no patients in either country mentioned this, providers (especially in Tanzania) discussed use of alternate treatment approaches. In addition, when asked about benefits of ART in close-ended questions, 94.8% of patients across both countries agreed with the statement “I believe that if I take my HIV medicines as prescribed, I will live longer,” and 96.7% said yes to “Do you think ARTs improve your health?” Most patients articulated numerous specific benefits of ART adherence when answering open-ended questions, including very technical reasons, for example, “it helps the virus not to reproduce … to keep the CD4 count high” (Patient, male, Tanzania).

Interpersonal factors

Neither patients nor providers spoke about interpersonal relationships as an important determinant of ART adherence.

Community factors

These higher-level social factors were much more commonly mentioned by providers than patients. Several providers mentioned stigma (10% of interviewees) as an important adherence determinant.

“When the long-term users see that their life is getting better, they tend to stop treatment; this is because they marry young girls whom they don't want to see them taking ARVs.” (Provider, Uganda)

“One of the challenges is the fear of stigma. Somebody who lives here will want to get medicine from another district, and because of the distance, it affects adherence.” (Provider, Uganda)

But when patients were asked a close-ended question about stigma, only 20.8% of respondents reported that stigma or discrimination due to their HIV status had happened to them; most of those who agreed (75%) were women. Stigma did not commonly emerge in patients' open-ended responses; nobody in Uganda spoke about this and only one respondent in Tanzania mentioned it.

System factors

Health system constraints are a higher-level determinant (per AIT) and highly salient for both patients and providers especially in Uganda where patients' most frequently cited determinant challenge was issues with picking up refills (n = 20), and this was also commonly reported by providers (n = 12). Respondents (patients and providers) in Tanzania mentioned this less often (one patient and five providers). Transportation to the health care facility (distance, availability, and/or costs) and stock-outs of medicines were commonly mentioned by both Ugandan providers and patients.

“Yes, I missed for one week when I did not follow my appointment in 2012, when there was some scarcity of medicine. I became sick with cough which took nearly two months to cure, and I developed body rashes. That is the time I realized that missing pills is really bad.” (Patient, female, Uganda)

“The cost of boda boda at every refill and also distance to the health center are the most difficult problems I face.” (Patient, male, Uganda)

“The problem of distance both to us and to our clients, especially during rainy season. There are bad roads, so fewer staff, hence greater workloads.” (Provider, Uganda)

“Antibiotics for opportunistic infections have not been here for the last two weeks. I think it went out of stock and do not know the reason… We prescribe and ask patients to buy the medicines from clinics or drug shops in town.” (Provider, Uganda)

Discussion

The stakeholders interviewed for this study—both adults on ART and providers at ART sites—reported many adherence-related challenges even in the context of free and available treatment. Nearly three-quarters of patients interviewed in Uganda and half of those interviewed in Tanzania have faced an adherence challenge. Many patients discussed tangible barriers, including unexpected travel (being away from pill supply), and especially in Uganda both food/diet and problems with access to refills, such as distance/transportation, stock-outs of medicines, and availability to visit the facility. These adherence challenges echo those from the broader literature,^5,7,46
–48 indicating a need for ongoing research and intervention development to address these persistent issues—such as new models of differentiated care.⁴⁹

Providers perceived different adherence challenges as being most salient for patients. Although they also cited access to refills as a barrier, providers were more likely than patients to mention community-level issues like stigma; and among the individual-level determinants they mentioned, more commonly cited use of alcohol and traditional treatments, and lack of understanding of the benefits of ART. Not only was it uncommon for patient interviewees to mention these problems during open-ended questions, the issues did not resonate with most patients when asked specifically about them. In this study, the majority (80%) of respondents said they had not experienced stigma or discrimination due to their HIV status, and very few mentioned stigma as a factor affecting their adherence. This is a surprising result, given the many studies that cite stigma as an important factor for ART initiation and adherence.^5,50
–52 It is possible that stigma did not emerge among this general adult population of ART users (vs. other studies that have focused on unique subpopulations such as adolescents^53
–55 or pregnant women^56
–58); or that by sampling experienced ART users, this study population was biased toward those with fewer challenges or with improved mechanisms to initiate and adhere. Studies should continue to examine stigma and its role in initiation and adherence, particularly in high-burden contexts with high ART coverage.

AIT provides an informative framework for understanding this finding. Providers and patients may attribute adherence barriers to different levels of cause (broader determinants for providers, like social and psychological factors; and narrower logistical factors for patients) due to their differing perspectives and type of involvement in HIV treatment: providers are organized at the care delivery level and are distant from patients' everyday pill-taking behavior. For example, earlier qualitative work has posited that logistical issues like “being away” may in fact stem from fear of disclosure and stigma,³⁵ so it is possible that both providers and patients in this study were accurate in their enumeration of barriers but disagreed on the cause.

This mismatch in providers' and patients' reports suggest new approaches and content may be needed for providers to effectively counsel patients on improving ART adherence. Interventions should seek to close the gap between these perspectives. For example, clinicians might discuss logistical barriers to adherence, including ways to carry medications in case of unexpected travel, and access to health services such as time, cost, and distance of travel to the health facility. There are few examples of studies that intervene on or evaluate patients' and providers' perceptions of adherence determinants, and this is an area meriting further research—particularly since the broader literature has found that improved provider/patient communication may be associated with greater patient satisfaction and increased utilization,^59

–63 as well as improved ART adherence and care engagement for PLHIV.^64
–66

These findings also underscore how food, diet, and nutrition affect adherence. Although only one provider mentioned food/diet as an important adherence-related issue, patients mentioned this in open-ended questions particularly in Uganda—and separate questions about food insecurity (based on the Household Food Security Access Scale domains)⁶⁷ found that 84% of patient interviewees in Uganda reported experiencing a food security concern. There is strong evidence about the importance of nutrition and food insecurity for ART adherence and improved HIV outcomes,^{12,14
–16,68,69} but further work is needed about how to robustly integrate these issues into adherence interventions and implement this at-scale in low-resource settings.^70

–73 We recommend substantial additional research on how food security can be better addressed during adherence counseling, particularly given the strong evidence base and many global HIV initiatives that include a nutrition focus.

The study had some limitations. First, the interview guides included open- and close-ended questions; count values for responses to open-ended questions should be interpreted with caution. Second, Uganda quotations are overrepresented here due to small differences in how the country teams recorded data (verbatim vs. thematically); however, the data from both countries contributed equally during coding and analysis. Third, there may be limited generalizability of these findings, including to other countries or regions; further research like this is needed in a greater variety of settings. The sample size is small, and due to logistical challenges during patient recruitment in Uganda we were unable to reach our larger target sample size. Lastly, there may be bias in the interview results, such as recall bias (if respondents recall particularly negative experiences) or reporting bias (if respondents skew their answers to be more socially desirable). We attempted to mitigate these by using experienced, nonclinical interviewers trained and experienced in qualitative research.

As the global community works toward the 90-90-90 targets by 2020, it is essential to improve our understanding of factors that shape outcomes across the HIV care continuum. This study suggests that providers and patients perceive similar barriers to adherence but may attribute them to different levels of cause: broader determinants in the case of providers (social and psychological factors), and narrower factors for patients (logistical challenges and food/nutrition). Such gaps in understanding may present opportunities for improving clinical care of PLHIV. In particular, providers may improve their understanding of the importance of logistical barriers as well as food and nutrition challenges, and work with patients to identify mechanisms to help mitigate these.

Footnotes

Acknowledgments

The authors gratefully acknowledge the assistance of all those who participated in data collection, and the patients and providers who provided their valuable time and insights. Funding for this work was provided by the US President's Emergency Plan for AIDS Relief (PEPFAR) through the United States Agency for International Development (USAID) and its Applying Science to Strengthen and Improve Systems (ASSIST) Project, implemented by University Research Co., LLC (URC) through Cooperative Agreement Number AID-OAA-A-12-00101. C.M. receives support from the Center for HIV Identification, Prevention, and Treatment (CHIPTS) NIMH grant MH58107; the UCLA Center for AIDS Research (CFAR) grant 5P30AI028697; and the National Center for Advancing Translational Sciences through UCLA CTSI Grant UL1TR000124.

Author Disclosure Statement

No competing financial interests exist.

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