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      Spinning plates: livelihood mobility, household responsibility and anti‐retroviral treatment in an urban Zambian community during the HPTN 071 (PopART) study

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          Abstract

          Introduction

          Qualitative data are lacking on the impact of mobility among people living with HIV (PLHIV) and their decision‐making around anti‐retroviral treatment (ART). We describe challenges of juggling household responsibility, livelihood mobility and HIV management for six PLHIV in urban Zambia.

          Methods

          Six PLHIV (three men and three women, aged 21 to 44) were recruited from different geographic zones in one urban community drawn from a qualitative cohort in a social science component of a cluster‐randomized trial (HPTN071 PopART). Participants were on ART (n = 2), not on ART (n = 2) and had started and stopped ART (n = 2). At least two in‐depth interviews and participant observations, and three drop‐in household visits with each were carried out between February and August 2017. Themed and comparative analysis was conducted.

          Results

          The six participants relied on the informal economy to meet basic household needs. Routine livelihood mobility, either within the community and to a nearby town centre, or further afield for longer periods of time, was essential to get by. Although aware of ART benefits, only one of the six participants managed to successfully access and sustain treatment. The other five struggled to find time to access ART alongside other priorities, routine mobility and when daily routines were more chaotic. Difficulty in accessing ART was exacerbated by local health facility factors (congestion, a culture of reprimanding PLHIV who miss appointments, sporadic rationed drug supply), stigma and more limited social capital.

          Conclusions

          Using a time‐space framework illustrated how household responsibility, livelihood mobility and HIV management every day were like spinning plates, each liable to topple and demanding constant attention. If universal lifelong ART is to be delivered, the current service model needs to adjust the limited time that some PLHIV have to access ART because of household responsibilities and the need to earn a living moving around, often away from home. Practical strategies that could facilitate ART access in the context of livelihood mobility include challenging the practice of reprimand, improving drug supply, having ART services more widely distributed, mapped and available at night and weekends, and an effective centralized client health information system.

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          Adherence to HAART: A Systematic Review of Developed and Developing Nation Patient-Reported Barriers and Facilitators

          Introduction The introduction of antiretrovirals has been credited with extending the life span of people living with HIV/AIDS [1]. However, treatment efficacy relies on access to treatment and excellent adherence, which has proven to be a serious challenge to those receiving highly active antiretroviral therapy (HAART) [2,3]. The regimens are often complicated, can require dietary restrictions, and may lead to adverse effects [4]. Non-adherence to antiretroviral therapy in adult populations has been shown to range from 33%–88%, depending on how adherence is defined and evaluated [5]. Research indicates that consistently high levels of adherence are necessary for reliable viral suppression [6,7] and prevention of resistance [8], disease progression [9], and death [10]. As successful HIV treatment requires exceptional adherence to antiretroviral therapy, interventions to improve and maintain adherence are needed. Several studies have been conducted that examine factors affecting adherence to HAART. We used a novel methodology to synthesize the information from these studies by performing a systematic review on all the literature available in this field using content analysis, particularly focusing on the currently existing qualitative studies and examining their generalizability through quantitative data. We examined both developed and developing nation patient populations [11]. Methods Search Strategy We performed a systematic, all-language literature search for all qualitative studies and quantitative surveys that addressed barriers and motivators influencing adherence to antiretroviral regimens in HIV-positive individuals. We (EJM and BR) searched the following databases: AMED (inception to June 2005), Campbell Collaboration (inception to June 2005), CinAhl (inception to June 2005), Cochrane Library (inception to June 2005), Embase (inception to June 2005), ERIC (inception to June 2005), MedLine (inception to June 2005), and NHS EED (inception to June 2005). Unpublished studies were also sought using the search terms “adherence” and “HIV” on Clinicaltrials.gov, the UK National Research Register, and conference abstracts from international conference Web sites: International AIDS Society conferences (inception to 2005) and Conferences on Retroviruses and Opportunitistic Infections (inception to 2005). Our search strategy combined terms that represented attitudes, barriers, and anxieties. Our search vocabulary included “HIV” or “AIDS”, “compliance OR adherence”, “factors OR determinant* OR barriers”, “motivate* OR facilit*”, and “HAART OR antiretroviral*”. The detailed search strategy is available from the corresponding author upon request. We supplemented this search by reviewing the bibliographies of key papers. Study Selection Two members of the study team (BR and PW) independently reviewed the abstracts. Eligible studies met the following criteria: (1) reported an original research study, (2) contained content addressing barriers or facilitators to antiretroviral adherence, and (3) were either a qualitative study or quantitative survey. The studies were divided to represent developed or developing nations, as according to the United Nations Human Development Index (HDI) [12]. The HDI is a composite index that measures a country's average achievements in three basic aspects of human development: longevity, knowledge, and a decent standard of living. Figure 1 Flow Chart of Studies Included in Review Data Extraction Two reviewers (BR and PW) independently extracted data and appraised both quality and content. From an initial review of qualitative studies by BR and PW, a coding template was iteratively developed to categorize key barriers to adherence to HAART. The reviewers then conducted a second review of the papers and identified whether they contained the barriers present in the complete template. At each stage of the data abstraction, the reviewers discussed the studies to determine consensus regarding the identification and coding of themes. We analyzed the themes presented in the qualitative studies. After the initial viewing of the selected articles, these themes were grouped into categories. Barriers/facilitators fell under the following subheadings: (1) patient-related, (2) beliefs about medication, (3) daily schedules, and (4) interpersonal factors/relationships. To determine the extent to which these themes exist in the wider communities of developed and developing nations, the reviewers then abstracted data from the survey studies to determine if the issues addressed in the qualitative studies had been asked about in the surveys. We abstracted data on the prevalence of the issues as reported in the surveys. We extracted data on the quality of both qualitative and quantitative studies using pre-determined criteria for quality. We previously reported our rationale for assessing the quality of qualitative studies and in this study have extended our quality assessment to examine quantitative surveys [13]. Although no formal criteria exist for appraising the quality of surveys, we a priori determined that the following criteria are important across surveys: 1) the survey included members of the target community in the preparation of the survey tool, 2) the survey instrument was assessed for face validity, 3) the survey population was randomly selected, 4) a rationale for determining the response rate was provided, and 4) the investigators attempted to contact non-responders. We did not propose a cut-off score for higher-quality surveys versus lower-quality surveys. Table 1 Study Characteristics Table 2 Reporting Criteria of Qualitative Studies Table 3 Quality Criteria for Survey Studies Statistical Analysis We measured chance-adjusted inter-rater agreement for eligibility using the κ statistic. EM and PW conducted all statistical analyses. When information on proportions was available in the quantitative studies, we first stabilized the variances of the raw proportions (r/n) using a Freeman-Tukey-type arcsine square-root transformation [14], and then conducted weighted analysis of studies using methods described by Fleiss [15]. The pooled proportion is calculated as the back-transform of the weighted mean of the transformed proportions, using inverse arcsine variance weights for the fixed-effects model and DerSimonian-Laird weights for the random-effects model. The random-effects model recognizes that the studies are a sample of all potential studies and incorporates an additional between-study component to the estimate of variability [16]. Thus, larger studies with smaller variances have relatively more impact on the final estimate. We present the weighted mean with 95% confidence intervals, with lower confidence intervals truncated at zero. The I2 statistic was calculated as a measure of the proportion of the overall variation in the meta-analyses that was attributable to between-study heterogeneity [17]. Table 4 Barriers to Adherence Identified in Qualitative Studies (Developed Countries) Figure 2 Barriers Reported in Developed Countries Results Study Selection and Characteristics The primary literature search produced 228 studies. There was near-perfect agreement between EJM and BR on choosing the 115 applicable studies from the reviewed abstracts (K ≥ 0.8). Of these, 31 were excluded as they were either not original studies or did not examine factors that influence adherence to antiretroviral therapy. The remaining 84 studies were included in our analysis (see Figure 1). There was perfect agreement on the final studies selected between BR and PW. All studies were published in English. Thirty-seven of the studies were qualitative (see Tables 1 and 2). Twelve used focus groups (total number of patients, n = 415) [18–29], 15 used semi-structured interviews (n = 729) [30–44], and nine used open-ended questioning (n = 694) [45–53] to explore barriers and facilitators to adherence. One study employed a writing intervention to solicit barriers and motivators to adherence [54]. The 47 remaining studies employed a quantitative methodology (surveys) and used structured questionnaires or structured interviews (total n = 12,902 [55]) [4,56–100] to determine potential factors. Table 3 displays the quality criteria results for the quantitative studies. No studies reported following up with non-responders to the surveys. Of the total sample of eligible studies, 72 were conducted in developed countries [4,18–25,30–39,44–46,48–50,53–56,58,59,61,62,64–67,69–76,79–81,83,84,86,87,108], and 12 in developing nations [47,52,57,60,63,68,77,78,82,85,94,96]. Fifty-six were from the United States [4,18–26,28,30–36,38–40,46,49–51,53,54,58,59,61,62,66,67,70,71,73,74,76,79–81,84,86,88–91,93,95,108], three from Canada [27,45,72], three from the United Kingdom [55,69,98], two from Italy [56,64], two from France [75,92], two from The Netherlands [42,83], and one each from Australia [48], Switerland [37], and Belgium [44]. Two studies were multinational [65,87]. The studies conducted in developing countries included four from Brazil [47,68,78,85], and one each from Uganda [57], Cote d'Ivoire [63], South Africa [82], Malawi [96], Botswana [52], Costa Rica [94], Romania [60], and China [77]. Tables 4 and 5 outline the factors affecting HAART adherence reported by HIV-positive individuals from developed and developing countries as determined by the qualitative studies. Table 5 Facilitators Reported in Qualitative Studies Barriers and Facilitators Listed by Patients in Developed Countries: Themes from Qualitative Studies Barriers. Thirty-three individual themes of barriers were recorded in 34 qualitative studies (see Table 4). Patient-related: Thirteen barriers were patient-related and included: a fear of disclosure and wanting to avoid taking medications in public places (23/34) [18–20,22–25,27–29,31–33,35–37,40,42,44,45,49–51,108]; feeling depressed, hopeless, or overwhelmed (18/34) [19,23–26,29,31,33,36,40,41,43,45,46,49,50]; having a concurrent addiction (14/34) [23,24,27,31,33,36,39–42,49–51,81]; and forgetting to take medication at the specified time (11/34) [20,24,25,28,31–33,37,40,44,50]. Other barriers include: being suspicious of treatment/medical establishment (9/34) [21,26,35,36,38,41,42,50,51]; wanting to be free of medications or preferring a natural approach (10/34) [20,21,29,31,32,37,44,50,54,108]; feeling that treatment is a reminder of HIV status (8/34) [18,32,38,39,41,43,49,54]; wanting to be in control (7/34) [28,31,37,38,41,54,108]; not understanding treatment instructions (5/34) [31,33,36,38,42]; still having doubt or not being able to accept HIV status (5/34) [18,33,42,44,51]; and a lack of self-worth (4/34) [35,43,44,51]. Financial constraints [31,42,46], being homeless [40,42], and having other concurrent illnesses affecting adherence were also cited. Beliefs about medication: There were eight reported barriers pertaining to beliefs/perceptions about medications. Some common barriers in this category included: side effects (either real or anticipated) (27/34) [18,20,21,23–32,35,37,38,41–46,48–50,54,108]; complicated regimens (12/34) [18,22,23,26–28,32,42,48–50,54]; and the taste, size, dosing frequency, and/or pill count (12/34) [18,20,23–25,29,45,48–50,54]. In nine studies, when individuals prescribed HAART felt healthy, adherence was often negatively affected [22,24,25,29,32,33,38,43,44]. Other barriers included: doubting the efficacy of HAART (7/34) [21,23,25,26,42,45,46]; having a decreased quality of life (6/34) [20,24,25,38,42,46]; uncertainty of long-term effects (6/34) [30,32,45,46,48,49]; and unwanted changes in body image (5/34) [18,28,37,45,54]. Daily schedules: Nine common barriers were related to daily schedules and included: disruptions in routine or having a chaotic schedule (16/34) [19,22,23,25,27,30,37,39–45,54,108]; finding HAART too inconvenient or difficult to incorporate (14/34) [19,20,27–29,31,32,37,38,41,44,46,48,54,108]; and difficulties coordinating adherence with work, family, or care-giving responsibilities (11/34) [18,20,24,27,28,31,32,37,45,54]. Individuals in seven studies found it difficult to balance the numerous strict dietary requirements associated with HAART [18,19,22,25,30,39,45]. Six studies cited sleeping through a dose [19,29,31,39,40,49]. Other barriers included: being away from home and not bringing medication (6/34) [24,31,33,39,40,42]; being too distracted or busy (5/34) [24,29,33,40,51]; and having no time to refill prescriptions, or other pharmacy-related problems (4/34) [22,24,25,31]. Finally, four studies described difficulties with a particular dose, particularly the middle-of-day or early-morning dose [19,29,42,48]. Interpersonal relationships: Interpersonal relationships can affect adherence behaviors. Twelve studies noted a lack of trust or a dislike of a patient's health-care provider as an impediment to adherence [21–24,27,31,34,36,38,42,49,50]. Ten studies noted social isolation [23,25,33,36,42,44,48–51]. Nine studies noted negative publicity regarding HAART or the medical establishment [21,28,35,36,38,44–46,51]. Finally, five studies noted that having a discouraging social network often deterred patients from successful adherence (5/34) [21,23,28,35,45]. Facilitators. Patient-related: Fourteen factors facilitating successful adherence to HAART were abstracted. Patient-related facilitators included having self-worth (15/23) [19,23,26,28,29,32,36,41,42,44,45,49–51,53], medication taking priority over substance use (4/23) [23,36,40,42] and seeing positive results when adhering to HAART (6/23) [24,26,28,32,45,50]. Also, those patients who had accepted their HIV-seropositivity reported improved adherence (8/23) [18,28,29,32,41,44,49,51]. Beliefs about medication: The most common motivator (12/23) to adherence is a belief in the efficacy of HAART and “having faith” in the treatment [18,19,21–24,42,44,45,49,50,53]. Other motivators included understanding the need for strict compliance (9/23) [18,24,26,28,30,32,36,42,44], and having a simple regimen (3/23)[18,21,49]. Daily schedules: Twelve studies reported learning to balance HAART with daily schedules as a facilitator of adherence. Having a routine in which taking antiretrovirals could be easily incorporated (11/23) [22,23,26,30,32,36,40,42,44,45,49], and making use of reminder tools (7/23) [18,22,23,40,42,44,49] are both reported to be effective tools for optimizing adherence. Interpersonal relationships: Positive interpersonal relationships were reported as necessary for successful adherence. Having a trusting relationship with a health-care provider was reported as a facilitator of adherence in 17 studies [18,19,21–24,28,29,32,34,36,42,44,45,49–51,53,108]. In addition, openly disclosing HIV status to family and friends and having a strong support network was reported as influential to adherence (18/23) [18,19,22,23,26,30,32,35,36,40,42–45,49–51,53]. Other motivators included: living for someone, especially, children (9/23) [19,21,23,26,28,43,45,50,51]; being actively involved in treatment decision making (4/23) [18,22,34,36]; and using friends and family as reminders (6/23) [18,19,23,35,40,53]. Common themes from surveys and quantitative studies. Figure 2 displays the pooled results of studies assessing barriers and reporting proportions of responders. Table 6 displays the surveys that did inquire of the issues addressed in the qualitative studies. There were three barriers described in qualitative reports but not in the quantitative studies. These were: having suspicions regarding HAART, wanting to be in control, and doubting or having difficulty accepting one's HIV status. Table 6 Barriers Reported in Quantitative Studies (Surveys) Eight quantitative studies reported facilitators to adherence (see Table 7). Four themes for facilitation of adherence were mentioned in the qualitative studies that were not discussed in the relevant quantitative studies (i.e., having medication take priority over substance abuse, having a simple regimen, using reminder tools, and living for someone). Barriers Listed by Patients in Developing Countries: Themes from Qualitative Studies As there were only two studies identified, we describe the findings here. Eighteen specific barriers are cited in two studies [47,52]. Patient-related: The most common patient-related barriers were: having a co-existing substance addiction, simply forgetting, and financial constraints [47,52]. Other barriers affecting adherence incorporated: a fear of disclosure [52]; difficulty understanding both treatment instructions; the need for compliance [47]; and the presence of concurrent diseases or illnesses, including malnutrition [52]. Beliefs about medication: Barriers reflective of patient beliefs regarding antiretrovirals included: side effects (either real or anticipated) [52]; complicated regimens [52]; the taste, size, and frequency of dosing [52]; having doubts about HAART efficacy [47]; feeling fine or healthy [52]; a decreased quality of life while taking medications, or feeling too sick [52]; and being uncertain about potential long-term effects of HIV treatment [47]. Daily schedules: Trouble incorporating work and family responsibilities with HAART was seen as a barrier to adherence in both studies. Traveling long distances to receive treatment was common, and not surprisingly, transportation difficulties were often reported to be a major hindrance to adherence (2/2). Other barriers included running out of medications or having an irregular supply [52]; being away from home [52]; and being too busy or distracted to properly comply [52]. No studies mentioned interpersonal relationships as a barrier to adherence in this population. No facilitators to adherence were discussed in any study in a developing nation setting. Themes from surveys and quantitative studies. Ten surveys were found in developing settings (see Figure 3). No quantitative study enquired of difficulties with morning or afternoon doses, work and family responsibilities, or listed inconvenience as a barrier. Discussion To our knowledge, this is the first systematic review to examine the concerns of HIV patients to maintaining adherence. We found that fear of disclosure, forgetfulness, a lack of understanding of treatment benefits, complicated regimens, and being away from their medications were consistent barriers to adherence across developed and developing nations. More common to developing settings were issues of access, including financial constraints and a disruption in access to medications. While there is a tremendous paucity of qualitative research in developing settings, our findings indicate that many barriers to adherence can be addressed with patients through discussion and education regarding treatment benefits to health. In developing settings, access to medications is the greatest concern. Indeed, discussion in both economic settings may alleviate patients' suspicions regarding treatment and address practical barriers to improve adherence. This study should also be used to guide the development of interventions aiming to improve adherence in any setting. This study has several important strengths. The methods we employed to tabulate these findings come from a multi-step process. We first systematically identified qualitative and quantitative studies examining the questions. We then extracted the themes from the qualitative studies and determined which of them were sampled in the quantitative studies. Finally, we synthesized the available quantitative data. By systematically determining the existence and prevalence of barriers in multiple qualitative and quantitative studies, we believe that stronger inferences can be made into patient-related adherence obstacles and facilitators. We have previously demonstrated that surveys benefit from systematically examining qualitative studies, as this improves content validity [13,101]. To this end, our review of qualitative studies identified several key themes addressing barriers to adherence that were not examined in larger quantitative studies. The presence of barriers in more than one qualitative study, consisting of populations of patients representing different patient populations, supports the conclusion that these barriers are somewhat applicable. Our meta-analysis of survey data is a relatively new process that we have previously demonstrated [102,103], and can permit stronger inferences into the generalizability of our findings. Finally, our criteria to assess the quality of both qualitative studies and surveys are a new contribution to the methodological literature. Recognizing that the absence of reporting particular methodological criteria may not reflect what was actually conducted during a study [104], we invite discussion regarding the relative usefulness and applicability of these criteria. This work has several limitations. We aimed to reduce reviewer bias by conducting abstraction independently, in duplicate. We cannot, however, know to what extent we may miss themes or to what extent reporting bias of the original report may have contributed. We emphasize that our methodology is specific but not sensitive for identifying themes. Reporting bias in the included manuscripts may have limited our ability to identify all barriers and facilitators to adherence. A broad range of economic and social conditions fall under the Human Development Index. It would wrong to assume that all individuals living in a HDI-categorized “developed” nation are in a better economic situation than all individuals living in a “developing” nation. Detailed information pertaining to this was rarely available in the original reports included in this review. It is possible that surveys used in developing nations were similar to surveys used in developed nations. However, the validity of these surveys in developing settings may not be appropriate, and we press for further qualitative research on this topic. Detailed population descriptions (e.g., education level) and the regional conditions from which this study is produced (e.g., gross national product) would benefit interpretation of future studies in this field. There are several interpretations of appropriate adherence and execution of drug regimens. We did not evaluate patients' perceptions of what “adherence” mean to them, whether it meant acceptance, execution, or persistence of drug therapy [105]. In our meta-analyses of pooled survey data, we found large heterogeneity (as displayed by the I2 values in Figures 2 and 3), indicating large variation between the surveys. Very little methodological literature deals with pooling proportions, and our findings call for further exploration to determine the importance of this heterogeneity. Finally, there were few studies in developing countries that studied early adopters to antiretroviral therapy. These individuals may not be representative of the larger epidemic and may not have experienced longer-term side effects of therapy. Table 7 Facilitators Reported in Quantitative Studies (Surveys) It is important to note that the qualitative studies generated a richer spectrum of barriers and facilitators than did the quantitative studies. Qualitative studies are superior at identifying patient-important barriers and facilitators. We would submit that the ideal study of adherence would be one that occurs across several phases and incorporates both qualitative and quantitative elements. For example, to avoid biasing one's investigation with a priori assumptions about what may be important factors relating to adherence in a given population, it is logical to commence a study with qualitative research, thereby allowing the local population to tell the researchers what they believe to be important barriers, rather than the reverse. By using questionnaires developed in settings that are economically or culturally foreseeably different, the surveys force respondents to answer potentially irrelevant questions. Clearly, the evidence base for barriers and facilitators of adherence is far richer from developed countries than from developing countries. In our analysis we found only two qualitative studies published from developing nation settings. This is sadly paradoxical, given that the vast majority of HIV/AIDS patients live in the developing world, and over the coming decades will constitute a growing proportion, and probably the majority, of the world's HAART recipients. Consequently, we see further research on HAART adherence in developing countries that incorporates both qualitative and quantitative elements as a priority. Figure 3 Barriers Reported in Developing Countries Our findings should influence adherence program delivery systems in developing settings. We found that issues such as fear of disclosure, suspicions about treatment, forgetfulness, and irregular supply were important barriers identified by large proportions of the populations studied. It seems appropriate that before mandating any adherence program, such as disclosure or accompagnateurs, opportunities should be provided for individuals who require opting out [106,107]. Further, in developing settings, the reliability of medication access is an important adherence barrier that individuals have little opportunity to facilitate. Patient-level adherence can be determined only when a steady supply of medication exists. We identified a broad range of barriers and facilitators to adherence. These barriers should be inferred as guides for interventional research to improve adherence rates. Given the many factors tabulated in this review, clinicians should use this information to engage in open discussion with patients to promote adherence and identify barriers and facilitators within their own populations. The methodology we used to pool the quantitative data is novel and may prove a useful methodological tool for generalizing patient-important issues.
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            Explaining Adherence Success in Sub-Saharan Africa: An Ethnographic Study

            Introduction People living with HIV/AIDS in sub-Saharan Africa generally take more than 90% of prescribed doses of antiretroviral therapy (ART) [1–12]. This number exceeds the levels of adherence observed in North America [13] and dispels early scale-up concerns that adherence would be inadequate in settings of extreme poverty [14–16]. These near-perfect levels of adherence are being achieved despite formidable obstacles in the poorest regions of the world. Prohibitive costs of self-pay medications and drug stock-outs create insurmountable access barriers and lead to missed doses [3,7,10,12,17–20]. Expanding access to free ART and better distribution systems are addressing these obstacles. However, out-of-pocket expenses, including user fees, laboratory tests, and transportation over often long distances to and from treatment sites remain important barriers to sustained adherence and medical care [5,21–24]. Time spent traveling to and attending clinical appointments places additional economic strain on patients and their families by competing with income generating activities. Failure to negotiate economic obstacles can lead to ART interruptions, viral rebound, and resistance to limited available regimens [2,25]. Social and cultural obstacles also threaten adherence success. Stigma and the fear of disclosure cause patients to skip doses if privacy is unavailable at a scheduled dosing time [5,21]. Conflicting messages from health care practitioners and religious authorities may also interfere with adherence [26,27]. Behavioral obstacles similar to those observed elsewhere, including forgetting doses, fear of side effects, traveling without medications, and stopping drugs when symptoms disappear have also been reported for sub-Saharan Africa [3,4,10,18,25,26]. Adherence facilitators in resource-scarce settings have received less attention than adherence barriers. Currently, home-based adherence “help” is emerging as an important resource to support adherence. One form of home-based help centers on community health workers. Community health workers are laypersons trained and paid through treatment programs to provide adherence support and other services at home. They deliver medications, observe dosing, refer individuals for HIV-testing, offer encouragement, provide nutritional and housing support, help with transportation, and in general represent important links between clinics and communities [22,28–32]. A second form of home-based help is treatment supporters [33]. Treatment supporters (also termed treatment “partners” and treatment “assistants”) are laypersons nominated by patients to help with treatment adherence. They remind patients of dosing times, and often (though not always) witness dosing. They are not health care workers, but individuals with close personal ties to patients. As family members or friends, treatment supporters often live in the same or a nearby household. Treatment supporters are not specifically trained or paid, but nonetheless make a formal commitment to their role. Early studies suggest that both treatment support and community health worker approaches to home-based help may improve treatment outcomes [4,22,28,34]. More structured support in the form of clinic-based modified directly observed therapy (MDOT) has shown promising results in Kenya [35]. The factors accounting for the observed benefit of MDOT are currently unknown. Results of similar initiatives in the United States are more mixed [36,37]. To better understand exceptional adherence in sub-Saharan Africa, we analyzed qualitative data from an ethnographic study carried out in three countries: Nigeria, Tanzania, and Uganda. Methods Study Design This patient-centered ethnographic study took place in public HIV-treatment settings in Nigeria, Tanzania, and Uganda (see Table 1). The HIV/AIDS Clinic at Jos University Teaching Hospital (JUTH) is located in a medium-sized city in Nigeria's central plateau and currently follows more than 8,400 patients prescribed ART. The ART Clinic of Amana District Hospital is located in Dar es Salaam, Tanzania, and currently follows approximately 5,300 patients on ART. The Immune Suppression Syndrome (ISS) Clinic at Mbarara University of Science and Technology is located in rural southwest Uganda and currently follows approximately 7,000 patients prescribed ART. A wide range of geographic and social variation is represented across the three sites. Table 1 Study Site Characteristics Sampling We used a purposeful sampling design. The goal of purposeful sampling is to systematically represent a variety of perspectives on the topic under study [38]. Three different perspectives chosen for relevance to the topic of adherence were represented in this research: (1) patients; (2) treatment partners (termed “assistants” at the Tanzanian site); and (3) health care providers. In Nigeria and Tanzania, random samples of potential patient participants were drawn from the larger populations of adults meeting inclusion criteria. Inclusion criteria were: (1) age 18 y or older; (2) prescribed antiretroviral therapy for HIV/AIDS for no fewer than 6 and no more than 12 mo at the time of sampling; and (3) residence within 20 km of Jos University Teaching Hospital or Amana District Hospital. In Uganda, patient participants were drawn from the larger Uganda Antiretroviral Treatment Outcomes (UARTO) study, a prospective study of antiretroviral-naïve patients initiating ART led by one of the authors (DRB). Treatment partners who participated in the study were referred by patient participants. Patients were asked to name “someone who assisted them in their efforts to take antiretroviral medications.” Health care providers who participated were volunteers who responded to a letter of invitation introducing the study. Recruitment In Nigeria and Tanzania, patient participants were recruited at the clinic during routine follow-up visits. At a free moment (e.g., while waiting to be seen or at the conclusion of the visit), staff approached eligible individuals to describe the study and extend an invitation to participate. In Uganda, permission to contact prospective patient participants for recruitment was first obtained by UARTO research staff. Once permission was obtained, a research assistant for this ethnographic study approached the participant for consent. Treatment partners were visited or telephoned by staff after giving permission for contact. Health care providers who indicated interest in response to the letter of invitation were invited to participate. The research was approved by the institutional review boards at Harvard Medical School (Boston, Massachusetts, United States); Jos University Teaching Hospital (Jos, Nigeria); Muhimbili University of Health and Allied Sciences (Dar es Salaam, Tanzania); Mbarara University of Science and Technology (Mbarara, Uganda); and the Uganda National Council for Science and Technology (Kampala, Uganda). Written informed consent was obtained from all participants. Data Collection Data were collected through in-person qualitative interviews and observations of clinic activities. Information on adherence was collected through the 3-d self-report instrument from the AIDS Clinical Trials Group edited and adapted for cultural context [39]. All data were collected by African researchers. The researchers were Nigerians, Tanzanians, and Ugandans who had been trained in ethnographic data collection techniques by two of the authors (NCW and MAW). In-Person Interviews Multiple interviews were conducted with patient and treatment partner participants to allow for elaboration of areas whose significance emerged as analysis proceeded. The interviews were semistructured, meaning that predesignated core topics, but not specific questions, were covered in each session. This approach ensured that specific areas were covered in each interview, but also allowed unanticipated themes to emerge. Core topics for patient interviews included: (1) specific experiences of taking ART (e.g., “stories” of the most recent dose taken, most recent dose missed); (2) clinic visits; (3) help received from treatment partners. Core topics for treatment partner interviews included: (1) types of help provided; (2) feelings about being a treatment partner; (3) perceptions of the impact of help. Core topics for health care provider interviews included: (1) description of typical clinic visit; (2) the ways adherence comes up in clinical visits; (3) perceptions of barriers to adherence for patients. The goal of the interviews was to understand ART adherence from the interviewees' points of view. Patient participant and treatment partner interviews were conducted in homes or at other locations of the interviewee's choosing outside the clinic. Health provider interviews were conducted at the clinic. Privacy was protected by conducting the interviews in locations where the conversation could not be overheard. Interviewees had the option of conducting the interview in the local language (Hausa, Kiswhahili, Runyankore) or in English. Interviews were audio-recorded with permission and averaged about an hour in length. Patients received compensation in the form of reimbursement for transportation (where applicable) or a small stipend. Field Observations Observations are a hallmark of ethnographic data collection. They involve the presence of a researcher in a naturalistic setting and the witnessing of events and activities of interest to a given research inquiry [40]. Observations have the advantage of providing a direct view of phenomena under study to complement one that is mediated through verbal interview reports. The following activities were observed by research staff at each of the clinical sites: (1) routine follow-up visits of patients taking ART; (2) counseling sessions; (3) health education sessions; and (4) the dispensing of antiretroviral medications. Observation sessions lasted 30 min to 1 h. Data Preparation Shortly after the completion of each interview, the interviewer produced a detailed write-up in English on the interview content, using the audio-recording and notes taken during the interview to ensure accuracy and completeness. The interview write-ups took the form of “stream-lined” transcripts. A “stream-lined” transcript is produced in English (without first transcribing in the local language) and consists only of interview questions asked and their responses. This approach to data preparation has several advantages. First and foremost, it captures the desired level of detail often lost in a summary and preserves the exact words of the interviewee. It can be completed in a reasonable amount of time by the interviewer, eliminating the expense of separate transcription. Accuracy is also improved using this approach. The write-ups contain a section in which the interviewer adds relevant contextual details and impressions not captured in the transcript. Descriptions of activities observed were written up following each session as field notes. Data Analysis Analysis aimed at explaining adherence to ART using an inductive approach to category construction and interpretation of data [41,42]. Descriptive categories were constructed to characterize approaches to overcoming economic obstacles to care. To construct the categories, content related to patients' adherence experiences was retrieved from coded data. Relevant sections of text were identified, copied, and grouped according to the type of adherence obstacle represented. These sections of text were then reread to characterize the ways in which patients negotiated these obstacles to avoid missing doses and clinic visits. The data were re-organized in terms of these characterizations to produce an initial category “set.” Each category forming the set was named, defined, and illustrated through interview excerpts. The set was refined—revised, specified, and elaborated—through successive returns to the data in which additional sections of relevant text were extracted. Interpretive analysis used a theoretic social science construct to develop an argument based on the categories. The data suggested “social capital,” i.e., resources accruing from social networks, as the best explanatory construct to interpret adherence strategies and explain their success. Results Study Participants 158 patients, 45 treatment partners, and 49 health care providers participated in this study. 414 interviews and 136 observation sessions were conducted across the three sites. Characteristics of Study Participants Patients. Approximately two-thirds (65%) of patients who participated in this study were women. The mean age of the patient group was 38 y. Less than half (44%) were married or living with a partner. Approximately three-quarters (71%) of the patients were Christian; the remainder were Muslim. Primary school was the highest level of education completed for slightly more than half (57%) of the patient sample. 65% of patients met criteria for Stage III or Stage IV disease according to World Health Organization (WHO) criteria at initiation of HIV care. Treatment partners. More than half (56%) of treatment partners were female. The mean age of the group was 39 y. Three-quarters (73%) were married or living with a partner. 60% were Christian; the remainder were Muslim. Primary school was the highest level of education completed for about a third (35%) of the group. Health care providers. Approximately two-thirds (64%) of health care provider participants were women, and the mean age of the group was 38 y. About a quarter (27%) of the sample were physicians; a third (35%) were nurses. Nineteen percent were counselors and 16% were pharmacists or medication dispensers. Two full-time “tracking” officers, responsible for locating patients lost to follow-up, were included in the sample (2%), as was another expert patient fulfilling an administrative function (1%). Ethnographic Data On the basis of category construction and interpretation of the data, we organized the findings from ethnographic data to demonstrate: (1) prioritization of adherence to overcome economic obstacles, and (2) responsibility in social relationships as an explanation of prioritization. Prioritizing adherence to overcome economic obstacles. Participants reported that most adherence obstacles were related to resource scarcity. Resource scarcity means that basic commodities required for daily living are not easily available. For example, obtaining money for transportation to clinic appointments (where prescriptions are refilled) is rarely a simple matter of dipping into a ready supply of cash. Concerted effort and specific strategies were required to raise needed funds to secure medications. Patient participants spoke of raising transport funds through loans and handouts, what they termed borrowing and “begging.” Loans—from treatment partners and other family and friends—were a reliable source of cash but were expected to be repaid, often with interest. Some interviewees reported selling possessions or earning income through work to repay loans. Others borrowed repeatedly but saw no way to resolve the debts they had incurred. Chronic indebtedness was a source of considerable emotional distress for borrowers, as these interview excerpts indicate: “Most times I borrow money [to get to clinic] and worry about re-paying the debt.” (Interviewer: “How do you re-pay the debts?”) “I work and look for money digging and weeding in people's plantations.” And: “When you do not have money you think of how you will come to clinic for medicine. [Last time] I borrowed from a friend but now I have paid it back.” (Interviewer: “How did you feel about borrowing?”) “I felt raw and depressed because I got worried. Actually I lost kilograms. When I came to the clinic and got weighed I had lost 2 kgs.” Treatment partners reported borrowing to help patients. In the following excerpt, a treatment partner describes how “having friends who have shops” provides access to credit that enables her to accommodate the food preferences of the patient she helps, who is not doing well: “The patient is seriously sick now. She is not ok. And when patients are seriously sick they lose their appetite. If you give her beans she will not eat. So we are borrowing rice from people with shops. They trust us and they lend, paying is a problem. I live with good neighbors who have shops. They help me, and at the end of the month I pay them. She likes rice very much. If you cook rice with anything, she eats.” Requesting handouts of cash—termed “begging” by interviewees—was also reported. Handouts were not expected to be repaid. Interviewees “begged” handouts for transport funds from family, friends, and health care providers: “If I see the date [of clinic visit] is approaching, I will start begging for help. I tell people the date of my clinic is coming and that I don't have money, so they should assist me.” And: “Sometimes I beg or ask for money to attend the clinic. Sometimes I have money for going there and beg at the clinic [for money to return]. Last time my uncle gave me money to go there. To get back I had to beg for money from the doctor.” Cash in hand, whether borrowed, “begged,” or earned, is immediately subject to competing claims. As a result, patient participants were continually confronted with “impossible choices”: HIV care or treatment for a sick child? HIV care or school fees? HIV care or food for the family? Resource scarcity sometimes required denying the needs of loved ones in order to secure money for transportation to clinic: “Seven days before going to get the medicine, I try to look around for money. If it means not eating or buying food for the children I do that, because they told us that we are not supposed to miss …” Food, essential to survival and functional recovery while on ART, was often treated as expendable. Patient participants understood that taking medications with food and adhering to a healthy diet that includes a variety of food groups is important for their treatment and recovery on ART. Though reluctant to ignore doctors' orders, patient participants sacrificed their own need for food to meet the needs of others close to them: “If I don't have porridge [when I take the pills] I feel nauseated. [But at times it's hard to get porridge] because I buy it with money and when it's the school fee season there is no money.” Strategies for obtaining help from others notwithstanding, there are times when patients simply “do without.” They do without food, but take their medications anyway, despite hunger-induced exacerbation of ART side effects. They do without transport, and walk to clinic, which can often take several hours: “It's hard to take meds without food. When I take meds without food I get a stomachache. But you can't miss meds because of food. I take meds with an expectation that I may get food later.” And: “[When there's no food] I just take [the drugs] on an empty stomach. And I will feel like vomiting – dizzy, weak and all. When I don't eat before taking drugs, honestly, I don't find it easy at all.” And: “Five months ago the car got spoilt and now I am walking to the clinic. At first I had money for a [motorcycle taxi] but now I do not even have that. I will continue walking whatever happens.” Borrowing and “begging” transport funds, making impossible choices, and “doing without” are ways of overcoming the economic obstacles that continue to block access to treatment for HIV/AIDS despite the availability of free ART. These sacrifices reflect the extraordinary efforts and commitment of individuals who are assigning “first priority” to HIV care: “Taking meds is my life. I have to give meds first priority because they are helping me.” Explaining prioritization: adherence to improve health and fulfill responsibility in social relationships. As in resource-rich settings, the immediate reason patients assign “first priority” to adherence is to improve health. Patient participants described profound improvements after starting ART, as grave illness gave way to weight gain, renewed energy and strength, and the ability to care for themselves. With treatment, most patients returned to normal activities, including income-generation. Clinical improvement also brought renewed hope for a long life. The restoration of health and hope, together with the memory of previous suffering and the threat of jeopardizing what has been gained should adherence lapse, provide powerful motivation to take ART correctly. However, the pursuit of health does not completely explain why patients assign first priority to adherence. For African patients, good health is important because it helps to preserve relationships with others. The contribution of social relationships to mental and physical health is well-documented for North America [43–47]. In settings of economic scarcity, relationships are not only important for health but also essential to survival. Our data suggest the prioritization of adherence reflects the importance of relationships as a resource for managing economic hardship. Chronic illness is always hard on close relationships. But when health care is a scarce resource, illness imposes an extra burden on social intimates who must then assume responsibility for care. Care provision means investing valuable time, energy, and financial resources to promote the patient's health. The investment is justified when there is an expectation of recovery, but becomes harder to defend if it appears the illness may be terminal. When an illness is considered terminal, caregivers may look for ways of severing their connection with the patient and ending the drain on scarce resources. One interviewee explained it this way: “When I fell sick, some of the people in my family thought I was going to die soon, so they advised my brother and sister (whom I was living with) to look for transport to send me back to the village. Some people, if they see you in terminal illness, they start to value their money. They think, ‘this illness is getting worse. It'll really cost me to transport a dead body, whereas to arrange to transport a living body is different….'” Patient participants in this study received adherence assistance from several sources. In addition to money for transport, treatment partners, other family and friends, and fellow patients provided regular reminders of dosing times. They offered encouragement by emphasizing the benefits of treatment and continually reinforcing the importance of taking medications as prescribed. Treatment supporters also worked to destigmatize HIV/AIDS. They socialized in public with infected persons; likened HIV/AIDS to common, but less stigmatized conditions (e.g., malaria); and challenged myths by deliberately sharing food and eating utensils. “…when they [a set of friends of the patient] started understanding the problem [HIV/AIDS], everybody started withdrawing from eating in the same container with him. …I saw everyone was running away from him so I called him and lied to him. I did not want to create division and break him the more. So I told him, ‘look, I met one of your doctors and she told me that you have to be very careful because of infection. You don't eat anything anybody else eats, you don't use the same cup anybody else uses, because you could get another infection and it could be even worse.' And then I ate with him, so the others would see.” Health care providers were also important sources of help. They supported adherence through education, reinforcement, even the organization of care. At one site, providers maintained a flexible schedule to accommodate patients, even though it made their days longer. They instituted a policy of accepting “latecomers”—individuals who arrived after the deadline for being seen on a given day had passed. Not infrequently, providers stepped outside their professional roles to make resources available to those in need. They provided money and food at their own expense, and organized larger efforts to generate support. In the following quote, a provider describes her practice of helping indigent women patients toward financial independence by securing small loans and then indicating how they might use the funds to start small businesses: “I say, ‘go around in your area, your community. Look at what people like that is not available there. Go and get some of these things and begin to sell them.' That is how I do it.” Providers expected adherence and did not hesitate to make their expectations known. In clinic, staff communicated expectations of adherence by stating repeatedly that antiretroviral therapy must be taken as prescribed. In extreme cases, they even threatened those who repeatedly missed clinic appointments with withdrawal of access, as we see from the following report: “I told [the patient] this morning, ‘You had better decide if you are going to take these drugs. Because the way you are doing, you are creating resistance. I am giving you my last warning. If you come next time with the same story, even if you beg from heaven, we will discontinue you.' That is what I told her. (Interviewer: And would you really?) If she comes back with the same story, I am serious. We will discontinue her. We will.” Treatment partners also expected adherence. As one person put it: “We insist she take her meds. We help her because we want her to take her meds….If you don't take your meds, you will die.” Friends and family members taking responsibility for someone's well-being were sensitive to the fact that adherence meant “doing well,” and “doing well” made their job easier. They insisted on adherence as a gesture aimed at reducing what one treatment partner termed the “work” of care. He explained this way: “If he [patient] continues well, the work of caring for him will be over. If he continues well, I can visit him at the time I want. But if he is sick, I have to help him so he will be okay and everyone else can continue with their business. That's why I insist, ‘my relative, don't ignore what they instruct you to do. If they tell you to take [ART] in the morning and evening—do it! Don't feel it is difficult work and don't feel tired.'” Making a similar observation, someone else said: “[Before the patient improved] it was difficult. I had to be there all the time. I kept the time for meds in my mind instead of him. I was unable to go anywhere or do anything else before he takes his meds. Now I'm free to do anything at any time without having many thoughts.” Social expectations of adherence create obligations on the part of patients, who must meet these expectations to preserve relationships with helpers. By taking ART as prescribed and “doing well,” patients reduce the burden of help and acknowledge the work of care. This in turn fosters continued good will on the part of helpers and reinforces the likelihood that assistance will be available when future needs arise. In settings of poverty, where “community safety nets” [48] replace public entitlements as resources for weathering economic crises, the consistent good will of potential helpers is required for survival. Discussion Our data point to economic obstacles and the strength of social relationships as principal mediators of sustained adherence in sub-Saharan Africa. These obstacles are being routinely overcome through strategies aimed at prioritizing adherence. Prioritization is accomplished with help from others. The relationships that provide this assistance are a critical resource not only for supporting adherence, but for managing economic hardship more generally. In social science, the use of relationships to obtain benefits and achieve desired ends has been termed “social capital.” In North America, adherence to ART for HIV/AIDS has been interpreted as the product of information, motivation, and behavioral skills operating at the individual level [49]. Such an interpretation depicts the individual as the primary agent of behavior, and de-emphasizes social context. As an analytic construct, social capital has been characterized as a property of individuals and of organizations. It has been used in the U.S. and Europe to examine the dynamics of civic engagement [50], the accomplishment of social action [51], and the production and reproduction of inequalities [52]. The ingredients of social capital (trust, cooperation, reciprocity, sociability) have been well-studied, and care has been taken to distinguish social capital from other forms of capital (e.g., economic, human, symbolic) [53]. Analysts agree on the characterization of social capital as a resource grounded in networks of social relationships. We define it as “resources accruing from a network of relationships that help individuals to solve problems and get things done.” The concept of social capital adds considerable explanatory power to the study of HIV/AIDS in sub-Saharan Africa. It explains not only adherence success, but also the threat of stigma. Stigma is feared because it leads to social isolation, undermining relationships that are essential to survival. Avoiding HIV-related stigma can be understood as an effort to conserve social capital, a necessary resource in settings of poverty. Relationships confer responsibility in addition to providing resources. Recipients of help must recognize what they receive and reciprocate. To ignore these responsibilities is to risk resentment on the part of helpers. Adherence allows patients to meet social responsibilities by preventing health decline and reducing the need for support. This creates a positive feedback loop in which social relationships help patients overcome economic barriers to sustained adherence. Adherence in turn fulfills responsibilities to others. Recognizing and fulfilling responsibilities to helpers through adherence strengthens social relationships and ensures more help will be available in the future. Preservation of social capital lies at the heart of our explanation, but we recognize influences in other domains. These include: (1) social structure, e.g., patterns of inequality; (2) infrastructure, e.g. weaknesses in health systems; (3) culture, e.g., values, religious beliefs; and (4) individual experience and behavior, e.g., side effects, lack of information, psychological distress. We offer here a social relational theory to explain adherence differences between resource-rich and resource-poor settings, while acknowledging other kinds of determinants that merit further study. Qualitative analyses contribute to quantitative research in medicine and public health by delineating useful constructs and testable hypotheses. In detailing the explanatory power of social capital, we point to its likely predictive value in examining hypotheses such as: Greater social capital will be associated with better ART access and adherence. Verification of such hypotheses will guide interventions to sustain adherence and improve treatment effectiveness. A question that immediately arises is whether the benefits of social capital are sustainable? How long can patients realistically expect to receive resources from others who are struggling with resource scarcity themselves? Social capital, unlike many other forms of capital, increases with use [54]. However, while it may explain how economic obstacles to adherence have been overcome to date, it leaves the fundamental problem of poverty unaddressed. Caregiver efforts to compensate for the effects of poverty are not a substitute for affordable transportation, plentiful nutritious food, clean water, adequate living situations, and accessible and effective medical care. Eliminating underlying economic obstacles will reduce the strain on relationships and thus help to sustain both social capital and adherence. We are not the first to address the social dimensions of adherence to ART in the context of international scale-up. A call for a biosocial framing laid out general principles of a socially grounded analysis and proposed relevant analytic concepts—social capital among them [55]. The importance of explaining adherence success in sub-Saharan Africa was stated specifically in a more recent account, which offered an anthropological history of treatment access and introduced “therapeutic citizenship” as an explanatory construct [56]. We propose an alternative construct emphasizing interpersonal relations, and add supporting data. There are several limitations to our findings. First, African societies are highly heterogeneous. We collected data in urban and rural settings in East and West Africa. However, the extent to which these concepts explain adherence behavior in other African contexts will be an important area of future study. Second, we have developed a social explanation but left other domains of influence unexplored. As we develop theoretical models of adherence for resource-scarce locations, these types of influences should be more comprehensively represented. Third, while ART scale-up has been highly successful, the dynamics of adherence will likely evolve as patients confront long-term treatment. Finally, we draw upon social capital as an explanatory construct, but stop short of elaborating underlying cross-cultural differences in definitions of personhood [57]. Conclusion Like persons living with HIV/AIDS all over the world, sub-Saharan Africans adhere to ART because they want to be healthy. But the desire for health alone does not adequately explain adherence success. A more complete explanation highlights the role of social capital in relationships as a resource for prioritizing adherence and overcoming economic obstacles to care. Adherence preserves social capital by protecting relationships required for survival in settings of poverty. This may be what patients are referring to when they tell us they have “no choice” but to adhere.
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              Toward an Understanding of Disengagement from HIV Treatment and Care in Sub-Saharan Africa: A Qualitative Study

              Introduction The rollout of antiretroviral therapy (ART) in sub-Saharan Africa has brought lifesaving treatment to millions of HIV-infected individuals. To continue to benefit from therapy, however, patients must remain in care. Ensuring long-term retention in care and treatment for HIV/AIDS has proven challenging in resource-scarce settings [1]–[5]. Tracking studies in which patients lost to follow-up are sought in the community to ascertain outcomes suggest that 20%–80% of patients “lost” but alive are no longer in care [6],[7]. Previous research by Geng et al. [8] using tracking data to estimate outcomes for a large clinic population indicated that approximately one in six patients taking ART were not in care after 2 y. Understanding disengagement from care is essential to improving retention and, thus, long-term outcomes of treatment. The existing literature on barriers to ART adherence sheds considerable light on the retention problem. Since adherence means not only following dosing regimens but also being able to refill prescriptions, and since prescriptions are refilled as part of routine follow-up visits in Africa, barriers to adherence and retention overlap. Travel distance to clinic sites and associated costs, stigma and fear of disclosure, competing demands for scarce resources, religious and cultural beliefs, and unanticipated obligations and events (e.g., attending a family funeral) are key adherence barriers identified through previous research that also bear upon retention [9]–[14]. Motivation stemming from improved health following ART initiation, material and emotional support from others, and the promise of increased longevity are overlapping facilitators [15],[16]. As retention research develops, a number of patterns are emerging to suggest factors shaping disengagement. Disengagement rates appear particularly high for patients who have not yet initiated ART [17]–[23], and lower in decentralized care sites [24]–[27]. There is some evidence that younger patients, men, pregnant women, and individuals who have not disclosed their HIV status disappear from care more frequently [23],[28]–[32]. A wide variety of contributors to missed visits have been cited in patients' own accounts. Patient-reported barriers include travel distance to clinic, and associated time and expense; traveling/being away from home on the visit date; fear of disclosure; stigma; dissatisfaction with care; improved health; discouragement and the desire to “give up”; “return to normal life”; and a relatively low perception of risk associated with HIV [33]–[40]. Psychological facilitators have also been suggested, among them motivation, high perceived risk associated with HIV, and a sense of self-efficacy (feeling capable of meeting treatment requirements) [35],[41]. The number of studies with data on reasons for missed visits collected from patients has grown rapidly in recent years. In most cases, these data are reported simply as lists of reasons patient participants have provided, stopping short of deeper analysis. For a more integrated, interpretive approach, we may look to the “meta-ethnography” by Merten et al. [40], which reviewed existing qualitative studies and integrated data to propose an explanatory “line of argument”. Drawing inductively upon results from 31 primary studies, the authors highlighted the importance of social processes in mediating ART adherence and retention in HIV care in Africa. Patients' “social integrity” and “social careers”—both of which refer to negotiation of social relationships in the context of ART treatment—were offered as concepts to clarify the social processes involved. The goals of our research are also explanatory. Our conceptual starting point is a social contextual explanation of ART adherence in Africa centering on patients' sense of social responsibility as a motivating factor. This sense of responsibility is seen as a reciprocal response to material and emotional help from family, treatment supporters, health care providers, and others without which continued adherence to ART and to clinic follow-up appointments would not be possible. As recipients of ongoing adherence help, individuals taking ART feel a responsibility to helpers to succeed at therapy. Success thus becomes both a social responsibility and a means of ensuring help continues to be available into the future [42]. This qualitative, patient-centered research aimed to help explain missed clinic visits and subsequent disengagement from HIV/AIDS treatment and care in sub-Saharan Africa. The study took place in three African countries—Nigeria, Tanzania, and Uganda—and had two objectives. First, we set out to inductively identify and characterize in depth reasons for missed visits from the perspectives of patients. Second, we worked to assemble identified reasons into a broader explanation of missed visits and disengagement from care. Methods Country Settings and Clinical Study Sites Tanzania, Uganda, and Nigeria represent diverse geographic and cultural settings. However, all three countries have generalized HIV epidemics in which women are disproportionately affected [43]. Characteristics of the epidemics vary across countries, but all three have seen prevalence rates drop with global scale-up of free ART. Huge health gains have resulted from the scale-up effort, yet more than half of eligible adults remain without access to therapy. Recent estimates place the number of adults living with HIV/AIDS at 1–1.5 million in Tanzania and Uganda, and at 3.3 million in Nigeria (see Table 1). The difference in numbers reflects population differences, at least in part. At approximately 160 million, Nigeria's population is the largest of all African countries. The number of adults living with HIV/AIDS in Nigeria is reported to be the third highest in the world [44]. 10.1371/journal.pmed.1001369.t001 Table 1 Characteristics of country settings [63]–[74]. Characteristic Country Nigeria Uganda Tanzania Population 158,423,000 (2010) 33,425,000 (2010) 44,841,000 (2010) HIV prevalence before ART scale-up 4.5% (1998) 8.3% (1999) 8.0% (1998) Year free ART became available 2006 2004 2004 HIV prevalence after ART scale-up 3.6% [3.3%–4%] (2009) 6.5% [5.9%–6.9%] (2009) 5.6% [5.3%–6.1%] (2009) Number of adults on ART 359,200 (2010) 248,200 (2010) 258,100 (2010) Percent eligible receiving ART 31.0% (2009) 47.0% (2011) 50.0% (2010) Number of adults living with HIV 3.3 million [2.9–3.6 million] (2009) 1.2 million [1.1–1.3 million] (2009) 1.4 million [1.3–1.5 million] (2009) 95% CIs given in brackets; year given in parentheses. Participating clinical study sites were the Jos University Teaching Hospital (JUTH) AIDS Prevention Initiative in Nigeria HIV/AIDS Clinic (APIN Clinic) in Jos, Nigeria; the Mwananyamala Hospital HIV/AIDS Care and Treatment Center in Dar es Salaam, Tanzania; and the Mbarara Regional Referral Hospital Immune Suppression Syndrome Clinic (ISS Clinic) in Mbarara, Uganda. All three are large clinics providing comprehensive treatment, care, and support services for patients with HIV/AIDS. Physicians, nurses, counselors, and pharmacists provide services to patients, supported by technical, administrative, and ancillary staff. The total number of direct care staff ranges widely across the sites, from fewer than 30 to more than 70 (full- and part-time). The JUTH APIN Clinic serves the city of Jos, with a population of approximately 1.5 million, and the surrounding central plateau region of Nigeria. Mwananyamala Hospital HIV/AIDS Care and Treatment Center serves the Kinondoni Municipality of Dar es Salaam, Tanzania's largest city, numbering about 4 million people. The ISS Clinic serves the Mbarara District of southwest Uganda and parts of neighboring districts (approximately 3 million people). Additional information about participating clinical study sites appears in Table 2. 10.1371/journal.pmed.1001369.t002 Table 2 Characteristics of participating study sites. Characteristic APIN Clinic (Jos, Nigeria) Mwananyamala Hospital HIV/AIDS Care and Treatment Center (Dar es Salaam, Tanzania) ISS Clinic (Mbarara, Uganda) Geographic setting Urban Urban Peri-urban and rural Size of population served 22 million 4 million 3 million Year opened 2002 2004 1998 Total adults enrolled in HIV/AIDS care 17,139 16,107 21,149 Total adults currently followed 10,532 5,478 8,808 Adults currently followed on ART 8,854 3,930 7,140 Patient Tracking for Research and Clinical Care With the identification of loss to follow-up as a threat to the long-term success of ART scale-up in Africa, patient tracking has been increasingly relied upon by researchers as a means of obtaining information on patients who have missed clinic visits [7],[8],[37],[38]. At the same time, local treatment program planners and health care practitioners have independently developed patient tracking as part of HIV clinical care. For clinical purposes, tracking is used to encourage retention and to contact patients who need to be seen outside of regular appointment schedules. Clinical trackers are trained health care workers or volunteers. Permission for tracking is requested from patients at enrollment in care. In-person patient tracking is a culturally meaningful clinical strategy for making contact with patients in the absence of highly developed telecommunications systems. As mobile phones become more widely available, telephone tracking is replacing the in-person approach. Clinical trackers travel outside clinics to locate patients in the community. From lists of patients to be tracked, trackers organize itineraries for in-person tracking and lists of individuals to be followed up by telephone, then attempt to make contact. The tracking programs at the three clinical sites participating in this study differed in size, mode of transport, reliance on phone versus in-person tracking, and distance traveled to locate patients. Differences reflected distinctions in clinic policy and/or local practice. Trackers at all three sites were paid and received training in HIV treatment, ethical practice, and tracking procedures. Sampling and Recruitment The sample for this study was generated using clinic tracking lists. The lists identified adult patients aged 18 y and older who were (1) enrolled in care, (2) had missed a regularly scheduled follow-up visit, and (3) had not subsequently returned to the clinic for 3 mo or more. A 3-mo period of absence was chosen following the practices of participating clinics for identifying patients to be tracked. Lists of persons fulfilling these criteria were generated by data managers at the sites from clinic databases and forwarded to clinic trackers for follow-up. When an individual was contacted through clinic tracking, and after standard clinic tracking procedures had been completed, trackers briefly introduced the research using an institutional-review-board-approved script, and requested permission for follow-up by study research assistants. Individuals giving permission were then recontacted by research assistants, who described the study in detail, answered questions, and enrolled those who expressed interest in participating. Thus, individuals participating in the study met the following inclusion criteria: (1) were absent from the clinic for 3 mo or more, (2) were tracked and contacted by clinic trackers, (3) gave permission for additional follow-up by study research assistants, (4) were successfully recontacted by study research assistants, and (5) were able and willing to provide informed consent. Ethics This study was approved by the Harvard Medical School Committee on Human Studies, Boston, Massachusetts; the JUTH Institutional Health Ethical Research Committee, Jos, Nigeria; the Muhimbili University of Health and Allied Sciences Senate Research and Publications Committee, Dar es Salaam, Tanzania; the Mbarara University of Science and Technology Institutional Review Committee, Mbarara, Uganda; and the Uganda National Council on Science and Technology, Kampala, Uganda. All study participants provided written informed consent. Compensation in the form of cash and/or reimbursement for travel to interview locations was provided. Amounts and forms of compensation were determined in consultation with investigators and ethical review boards at participating sites. Data Collection Data were collected from 15 January 2010 through 30 March 2012 using in-depth in-person interviews with enrolled patient participants. Consistent with an inductive approach, interviews were designed to be flexible, following a general, topic-oriented structure. Topics were selected to address the goals of the research and included the following: (1) experiences of care at the clinic, (2) experiences of tracking, and (3) circumstances of missed appointments. Interviews sought to elicit detailed accounts of actual experiences of interviewees from their points of view. They were conducted by trained research assistants in each of the three countries in local languages, and were audio-recorded with permission. They took place in private locations—at patients' homes or at other convenient places of their choosing—and lasted approximately one hour. Data Preparation Upon completion of each interview, interviewers produced a complete transcript in English from local language audio-recordings. Each transcript was reviewed for quality by M. A. W. Interviewers made additions and corrections to transcripts as indicated by the quality review. The transcripts constituted the study data. Data Analysis Analysis of data aimed to characterize patients' reasons for missing clinic visits and to represent them as descriptive categories. An inductive approach to concept development centering on category construction and informed by grounded theory methodology [45],[46] was used to carry out the analysis. Analysis began with repeated review of interview transcripts to identify sections of text illuminating reasons for missing clinic visits. These sections of text were displayed in matrices to reduce the data and facilitate identification of content similarities or patterns. Sections of text determined to be similar in content were grouped and assigned provisional labels to form an initial set of “reason categories.” The initial category set was then reviewed to confirm that labels accurately reflected corresponding sections of text. Labels were revised as necessary to strengthen correspondences and improve precision. Illustrative quotes were retrieved from interview transcripts. Multiple authors participated in this process. Disagreements and inconsistencies arising in the analytic process were resolved through discussion. Data from the three sites were analyzed separately. Once the categories were formulated, they were examined interpretively for broader underlying dimensions and relationships to each other. This interpretive analysis allowed us to move beyond a listing of individual reasons for missing clinic appointments toward a larger, more integrated explanation, and to highlight previously underemphasized aspects of the problem. Categories were then further grouped to represent “unintentional” versus “intentional” reasons for missing appointments and were loosely arranged in time sequence. Of course, other interpretations are possible. Our goal was to advance thinking and research on disengagement from HIV care in sub-Saharan Africa by proposing new conceptualizations suggested by qualitative data. Results Outcomes of Tracking Eight-hundred-ninety patients were tracked at the three sites as part of recruitment. Two-hundred-eighty-seven were located, and 91 ultimately took part in the study (see Table 3). Of the 91 participants, 76 were being prescribed ART; 15 had not initiated treatment. Length of time out of care varied widely across the sample of participants. Reasons for not participating in the study among located patients included the following: (1) refusal to give permission for follow-up contact for research, (2) denial of HIV-positive status to trackers, (3) fear of disclosure of HIV status as a result of research participation, and (4) preference for remaining uninvolved in any further HIV-focused activity (treatment or research). Of 603 patients tracked but not located, 211 (35%) were reported dead, 144 (24%) had moved, and 79 (13%) were traveling away from home at the time of tracking visits. No information could be obtained for the remainder. 10.1371/journal.pmed.1001369.t003 Table 3 Study tracking activities and outcomes. Site Number of Trackers Participating Tracking Period for Study Recruitment Number of Patients Tracked Number of Patients Located (Percent) Number of Patients Enrolled Jos, Nigeria 3 18 mo 254 140 (55%) 40 Dar es Salaam, Tanzania 19 6 mo 208 46 (22%) 20 Mbarara, Uganda 2 17 mo 428 101 (24%) 31 Of the 140 people located in Jos, 17 (12%) were tracked by home visit only (no phone). In Mbarara and Dar es Salaam, the large majority of people were tracked by home visit only. Characteristics of Interviewees The average age of patient interviewees was 36 years. Almost 60% were women; 62% were Christian. On average, they had a little less than 10 y of education. Three-quarters of interviewees reported being employed. Median reported travel time to clinic was about 45 min. Nigerian participants had more years of schooling than Ugandan or Tanzanian participants, and were more likely to be employed than Tanzanian participants. Travel time to clinic was longest in Uganda. Characteristics of patient interviewees are detailed in Table 4. 10.1371/journal.pmed.1001369.t004 Table 4 Patient participant interviewee characteristics. Characteristic All (n = 91) Nigeria (n = 40) Tanzania (n = 20) Uganda (n = 31) Gender female (percent) 59.3 62.5 55.0 58.1 Age (years), mean (SD) 35.9 (8.1) 34.9 (7.4) 39.3 (9.0) 35.0 (8.1) Religion (percent) Christian 61.5 52.5 50.0 80.1 Muslim 38.5 47.5 50.0 19.4 Education (years), mean (SD) 9.8 (3.9) 11.9 (3.7) 9.1 (2.8) 7.6 (3.6) Employment (percent) Employed 75.8 85.0 55.0 77.4 Unemployed 24.2 15.0 45.0 22.6 Travel time to clinic (minutes), median (IQR) 45 (30–120) 30 (30–60) 30 (30–52.5) 120 (60–180) IQR, interquartile range; SD, standard deviation. Reasons for Missing Visits Core terms used in the discourse on retention in HIV treatment and care reflect the evolution of research and thinking on the topic, while pointing to one or another potential source of retention problems. “Loss to follow-up” connotes clinics' difficulties in keeping track of patients, while patient-centered terms—the currently preferred “disengagement” or the African term “defaulter”—imply that missed visits result from patient choice. In contrast, it was the unintentional origins of missed visits that stood out among our study participants. Interviewees continually confronted competing demands on their time. When demands stemmed from cultural and family obligations, or economic requirements—e.g., caring for a sick family member in a distant location, traveling for work, attending a relative's funeral in another town—they took precedence over keeping clinic appointments. The following interview excerpt illustrates this: I went to the village in December and when it was time to come back before my appointment of January 3, 2011, I was not able to come back because I lost a brother. A few days after losing my brother, I lost another relative and so I stayed in the village. I had planned to come back on January 1, since my clinic appointment was for January 3, but I did not come back. [Female, age 27] Plans were routinely upended by unexpected events, another source of unintentional absences. Accidents, vehicle breakdowns, and other travel delays meant that individuals who had traveled but planned to return before their clinic visit date were stranded away from home, as in the following case: What caused me not to come to the clinic was that I lost my father. When he died, I went to [name of town] for the burial and the money that I had taken with me ran out. And so I had to first stay there to make some more to facilitate my return. When I was able to return to my home, I failed to get the money for transport to the hospital and so I started working to be able to earn the amount enough to facilitate my transport fare. [Male, age 40] Encounters with violence were obstacles for some patients. Lack of support from family and community in the form of failure to provide transport funds or of active opposition to care led to unintentional absences for some interviewees. Errors—misunderstanding visit dates or forgetting an appointment—were another unintentional reason for missing. Some missed visits were intentional. For example, patients might decide to stop attending a particular clinic as decentralization initiatives provided the option of receiving care closer to home. Patients offered an alternative to long, expensive travel for care transferred to local facilities. If transfers were not recorded at the initial care sites, those patients were categorized as “missing.” When patients decided to stop keeping clinic appointments, the reason could also be dissatisfaction with care. Interviewees reported objections to clinic policy (e.g., insistence on adherence to certain days and times of appointments) or some aspect of care organization (e.g., clinic schedules that made for long waiting times). Interviewees also complained of harsh treatment by providers. Harsh treatment typically referred to behavior perceived by patients to be rude and/or rejecting. For example, interviewees reported being spoken to “roughly” or feeling that the clinic staff “didn't care.” “Shouting” and “bad language” were cited. At one site, references were made to threats that missed visits would result in being dropped from care. Experiences of harsh treatment left patients feeling hurt, angry, and humiliated, as the following quotes illustrate: I felt humiliated. I felt very bad. After receiving the services I was full of pain. After that incident I didn't go back to the hospital. I decided to leave everything and opt for fruits and food…and until now I am not taking it [ART]. [Male, age 60] Like my last clinic visit, it became too much. They really looked like they didn't care. [Interviewer: Why do you say they looked like they didn't care?] When people come to the clinic and go to their [consulting] rooms, they don't care about them. There are many patient files piled on their desks but they just sit there. Or sometimes, they come, look at the files and then just go their own way. Or sometimes when you enter the doctor's room, they start conversing and talking about their own things while you just sit there and wait for them to finish. [Female, age 27] …the first day I came, I didn't know I had to drop my card—hand card—by the door. So I came in and sat down where my friend said. The nurse there was so harsh that I didn't drop my card. She said all nasty things to me and at a point I said, “Amen! Let me just go.” That was the first day; that was the first experience. I felt it was not a place to be. It was like I should just leave the hospital immediately. [Female, age 35] They [staff] told me, “You are late.” Now, there are problems people face. I don't know how they perceive it but for me this thing is very difficult. Attending clinic every month is very difficult, because you have to leave your work, sometimes report [to work] late—reasons like these. Everyone has problems. They are supposed to solve these problems with love, not harshly like they do. Until people are afraid of their words—abusive words. They behave as if we are there to beg for meds. It's our right to get the meds. [Female, age 34] Examined closely, absences are revealed to be less the simple result of one or another “reason” taken individually, and more the product of complex chains of events. To identify only the initial, “surface” reason is to provide an incomplete, sometimes inaccurate, account. For a full understanding, one must follow the events in the chain. An example is the frequently cited “problem of transport.” Transport problems often gloss a much more complicated set of circumstances. In the following instance, for example, an interviewee who began his explanation of missed visits by citing a “transport problem,” went on to reveal more about what that problem led to and meant: We fail to get vehicles sometimes. And when you go to look for money for [a motorcycle taxi] you find you do not have it. So when you miss your appointment and go to clinic on another day, [the provider] starts quarreling with you about not having come on the appointed day. And when you tell that person you got problems, he tells you, “You should spend the night on the road.” How can I spend the night on the road? Here I am, having failed to get money for taking me to the hospital and then I'm supposed to get money to spend the night somewhere and feed myself? These are some of the problems I have in going to the clinic. [Male, age 56] This patient became discouraged and abandoned care—not so much due to transport difficulties as to the lack of understanding and accommodation of these difficulties by staff. When located for this study, he had not been seen for care for 2 y. In addition to being complex, many obstacles to missed visits are also transitory. They end, dissipate, or cease to be obstacles as circumstances change over time. Recognizing this raises the question, if initial obstacles no longer block clinic attendance, why don't patients who miss visits then return? A strong reluctance to return for care after an absence emerged from the qualitative data. I was scared to come back to the clinic since a lot of time had already passed and I might come back and they chase me away. [Male, age 40] I was scared of coming back and them telling me that they will not accept me because I didn't come when they told me to. I was wondering whether they would accept me or not or whether they would scold me. [Female, age 35] I was afraid to go back because I didn't have my card and I stopped meds for a long time. I was afraid the nurses would yell at me. [Female, age 35] Reluctance to Return Two reasons for this reluctance stand out. The first centers on a sense of shame articulated by interviewees, who felt a strong sense of the responsibility that comes with starting ART. Having gained access to a valuable resource in a resource-scarce environment, and having been extensively “educated” as to the adherence commitment access to that resource entails, patients who miss clinic visits seemed to see themselves as having failed to live up to their responsibilities when they missed visits and experienced a treatment lapse. The following quotes illustrate this: When they accept us and open our files, they tell us this—that when you start, you should not stop. And if you know you will play with it, then do not start. So it was because I know I was wrong. That is why I said I will not be able to return. [Female, age 25] In fact, when [the tracker] called me, I felt a sense of guilt. This is my health. I am supposed to be worrying about my health, not somebody else worrying about my health—you know? [Male, age 46] Apprehension at anticipated negative responses from care providers is a second explanation suggested by the data for reluctance to return. Over time, the distress at perceived poor treatment prompting patients to miss visits evolves into anticipation of the painful encounters they see awaiting them upon return. Interviewees articulated a fear of being “yelled at,” “abused,” and/or “chased” from the clinic should they attempt to resume treatment after an absence. Rather than face this, they simply stayed away. I was afraid to go back because I had stopped meds for a long time and I didn't have my [clinic identity] card. I was afraid the nurses would yell at me…. [Female, age 35] I did not come back on the date I was given. When the date for me to go back to the clinic had passed, I feared I would be abused if I went back past my appointment date. [Female, age 20] I was scared to come back to the clinic since a lot of time had already passed and I might come back and they chase me away. [Female, age 20] The way she told me, “Why did you miss clinic…despite what happened, you should have come to the clinic and met other people.” I told her no, I didn't want to show up because what happened to me [at the clinic] was still in my heart. If I was treated nicely the situation would have been different; since I was treated badly I saw the treatment was meaningless. [Male, age 60] [Interviewer: The situation of stopping care or treatment at the clinic, how did that make you feel?] It made me feel bad to see that I had to go to get meds. Looking at how badly the provider spoke to me, I asked him how they would be benefiting from my death? I said to myself, “Let me leave these things. If I am to die let me do that—die.” [Male, age 56] Reluctance to return, whether originating in shame at having failed to fulfill a responsibility or apprehension about the anticipated negative response of providers, signals the erosion of a subjective sense of connectedness to the idea, processes, and, for some, the specific site of care. We propose it is this sense of connectedness, together with family and community support, that fuels patients' motivation to consistently overcome economic and other obstacles to keeping clinic appointments. The lifelong commitment patients understand themselves to be making in initiating ART, a sense of caring and expectation of success from providers, and solidarity with fellow patients all contribute. The data point to patients' subjective sense of connectedness to care as a significant, and to date underappreciated, antecedent of retention (see Figure 1). 10.1371/journal.pmed.1001369.g001 Figure 1 How missed visits may become disengagement from HIV/AIDS treatment and care in Africa. Discussion This qualitative study reveals the importance of recognizing the unintentional origins of many missed visits, the often hidden complexity of reasons for missing, and the ways in which reasons change over time. A prospective approach to the qualitative data revealed both the transitory nature of some obstacles to clinic attendance and a trajectory whereby initial obstacles develop into reluctance to return. In highlighting these broader dimensions and identifying “reluctance to return” as an analytic construct, our aim is to move away from a narrow focus on individual barriers toward a larger and more integrated explanation. The prominence of reluctance to return in interviewee accounts of absences from care signals a potential caution for providers overseeing initiation of ART. Patient education in clinical settings for ART initiation in Africa has featured stern warnings about the lifelong commitment treatment represents, the meaning and importance of medication adherence, and the dire consequences of lapses. Patients' feelings of shame at missing visits and fear of clinic staff's negative response to absences may indicate just how seriously they have taken these warnings. Educational efforts intended to maximize the benefits of ART for patients may paradoxically be driving some away from care. How shall we understand the patient complaints of harsh treatment by staff seen in accounts of reluctance to return? The quality of relationships between patients and health care providers in poor countries has received relatively little research attention. However, the available literature does clearly indicate that friction between the two groups, and reports of “abuse” by clinical staff, are neither specific to HIV/AIDS care nor limited to the sites and countries represented here [47]–[53]. Analyses shedding light on the origins of friction are scarce, but suggest as contributing factors the overwhelming numbers of patients and the emotional strain of HIV/AIDS care provision [54]–[57], perceived threats to professional identity [47],[52], and conflicting priorities of patients and staff [51]. Qualitative research in medicine and public health intentionally aims for in-depth analysis rather than generalizable results. Nevertheless, single site qualitative studies may reflect limitations in resources more than dictates of research design. This study was carried out at three HIV treatment sites in three sub-Saharan African countries. Results reflect commonalities and contrasts across the three patient participant groups. In all three, visits are missed both unintentionally and by design, and evolve into reluctance to return. The specific forms this pattern takes vary, however. The availability of data from three sites in this study offer the advantage of a broader base for analysis, but do not allow for formal cross-site comparison, as the qualitative samples were not designed to be representative. The recent shift in emphasis from increasing access to HIV treatment to enhancing retention in care has led to a number of suggestions and changes aimed at reducing absences. Some of these are structural, e.g., reorganizations of services to make clinic attendance more convenient and efficient (decentralization, reduced waiting times, reduced visit frequency) [58]. Others feature one or another form of community-based support [59],[60]. Returning patients to care following an absence has received less attention as an intervention objective overall. Yet recent research confirms substantial numbers of lost patients are alive and can be located [7],[8],[38],[61],[62]. This study calls attention to reluctance to return as a retention barrier. It follows that interventions designed to address and resolve reluctance might inspire “missing” patients to return to care [61]. To target return to care (rather than prevention of missed visits) would be to bring a harm reduction approach to the retention problem, and to recognize that, while not optimal, absences will be unavoidable over a lifetime of treatment. A harm reduction approach would seek to reduce barriers to re-engagement. The process through which unintentional and intentional missed visits evolve into a weakened sense of connectedness, reluctance to return, and, ultimately, disengagement from care points to an underlying exchange-based relationship between health care providers and HIV/AIDS patients receiving care and ART. In return for access to lifesaving treatment and care, patients are expected to, and agree to, reciprocate with adherence to both medication and clinic appointments. The commitment entails a moral obligation; missed visits are thus a moral failing. Understanding the moral dimensions of the treatment relationship makes sense of patients' shame, justifies “scolding” by providers, and explains the common usage of the term “defaulter” (i.e., someone who fails to repay a debt) to refer to patients who miss clinic appointments in sub-Saharan Africa. This study has a number of limitations. First, the study is based on a convenience sample of patients who could be located through tracking. Reasons for missed visits among persons who could not be located are not represented. Social desirability bias and recall bias may have also resulted in some reasons for missing visits not appearing in the data. Neither reasons for returning to care following an absence nor differences across the clinical sites is examined. A limitation of this analysis qualitatively is that it reflects only a single perspective: the patient's perspective. In a more comprehensive qualitative examination, multiple perspectives on the retention problem would be represented. Conclusion International scale-up of treatment and care for HIV/AIDS has been a resounding public health success. To realize full benefit from the initiative, high rates of long-term retention are essential. Retention research focusing on Africa has shed considerable light on the dimensions of the problem and on reasons for absences from care as directly reported by patients. This paper offers a broader and more complete explanation of disengagement and a new explanatory construct: reluctance to return. To focus on return is to acknowledge the inevitability of absences over a lifetime course of treatment for HIV/AIDS. Efforts to prevent missed clinic visits complemented by moves to minimize barriers to re-entry into care are more likely than either alone to keep missed visits from turning into long-term disengagement.
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                Author and article information

                Contributors
                gbond@zambart.org.zm , virginia.bond@lshtm.ac.uk
                Journal
                J Int AIDS Soc
                J Int AIDS Soc
                10.1002/(ISSN)1758-2652
                JIA2
                Journal of the International AIDS Society
                John Wiley and Sons Inc. (Hoboken )
                1758-2652
                19 July 2018
                July 2018
                : 21
                : Suppl Suppl 4 , Population mobility: challenges for universal HIV testing and treatment, Guest Editors: Carol S Camlin, Susan Cassels, Janet Seeley ( doiID: 10.1111/jia2.2018.21.issue-S4 )
                : e25117
                Affiliations
                [ 1 ] Zambart, School of Medicine University of Zambia Lusaka Zambia
                [ 2 ] Department of Global Health and Development Faculty of Public Health and Policy London School of Hygiene and Tropical Medicine London UK
                [ 3 ] Desmond Tutu TB Centre Stellenbosch University Tygerberg South Africa
                [ 4 ] Department of Medicine Imperial College London St Mary's Campus London UK
                [ 5 ] Department of Infectious Disease Epidemiology London School of Hygiene and Tropical Medicine London UK
                [ 6 ] Department of Clinical Research London School of Hygiene and Tropical Medicine London UK
                [ 7 ] MRC/UVRI Uganda Research Unit on AIDS Entebbe Uganda
                Author notes
                [*] [* ] Corresponding author: Virginia Anne Bond, Zambart House, School of Medicine, Ridgeway Campus, University of Zambia, Box 50697, Lusaka 10101, Zambia. Tel: +260 211 254 710. ( gbond@ 123456zambart.org.zm ; virginia.bond@ 123456lshtm.ac.uk )
                [†]

                These authors have contributed equally to the work.

                Article
                JIA225117
                10.1002/jia2.25117
                6053474
                30027643
                bf67cc69-c2b4-4e2f-92af-37dc8cd6b014
                © 2018 The Authors. Journal of the International AIDS Society published by John Wiley & sons Ltd on behalf of the International AIDS Society.

                This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                History
                : 20 December 2017
                : 09 May 2018
                Page count
                Figures: 0, Tables: 3, Pages: 13, Words: 10406
                Funding
                Funded by: National Institute of Allergy and Infectious Diseases (NIAID)
                Award ID: UM1‐AI068619
                Award ID: UM1‐AI068617
                Award ID: UM1‐AI068613
                Funded by: U.S. President's Emergency Plan for AIDS Relief (PEPFAR)
                Funded by: International Initiative for Impact Evaluation (3ie) with support from the Bill & Melinda Gates Foundation
                Funded by: NIAID
                Funded by: National Institute on Drug Abuse (NIDA)
                Funded by: National Institute of Mental Health (NIMH)
                Funded by: NIH
                Categories
                Research Article
                Research Articles
                Custom metadata
                2.0
                jia225117
                July 2018
                Converter:WILEY_ML3GV2_TO_NLMPMC version:version=5.4.3 mode:remove_FC converted:19.07.2018

                Infectious disease & Microbiology
                zambia,livelihood mobility,hiv,art,time‐geography,household responsibility

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