Abstract
HIV care and treatment programs in sub-Saharan Africa have been remarkably successful, but disengagement from care by people living with HIV (PLHIV) remains high. The goal of this study was to explore the experiences of PLHIV who disengaged from HIV care in Iringa, Tanzania. We conducted a series of three longitudinal, semi-structured interviews with 14 PLHIV who had disengaged from ART programs for a total of 37 interviews. Narrative analysis was used to identify key themes. Our findings indicate that an individual's decision to disengage from care often resulted from harsh and disrespectful treatment from providers following missed appointments. Once disengaged, participants reported a strong desire to re-engage in care but also reluctance to return due to fear of further mistreatment. Participants who successfully re-engaged in care during the course of this study leveraged social support networks to facilitate this process, but often felt guilt and shame for breaking clinic rules and believed themselves to be at fault for disengagement. Developing strategies to minimize disengagement and facilitate re-engagement through more flexible attendance policies, improved client-provider interactions, and outreach and support for disengaged clients could increase retention and re-engagement in HIV care and treatment programs.
Introduction
T
The Iringa region of Tanzania has the second highest HIV prevalence (9.1%) in the country, almost twice the national average of 5.1%. 12 Country-level estimates suggest that of people living with HIV (PLHIV) who are eligible for ART based on WHO 2010 guidelines, only 68% are receiving it. 1 While little data around disengagement from care exist in Iringa specifically, one study assessing medical records from HIV care and treatment centers throughout Tanzania found that 36% of adults were LTFU after 3 years, 13 similar to findings from across sub-Saharan Africa. 2
Disengagement from care, and resulting treatment interruption and nonadherence, is associated with increased risk of morbidity and mortality, 14 drug resistance 15,16 and onward HIV transmission. 17 Understanding why individuals disengage from HIV care and treatment programs and developing strategies to promote adherence to ART and re-engagement in care is an important public health goal. In 2013, Ware and colleagues developed a framework to understand factors affecting disengagement, which introduced “reluctance to return” as an analytic construct leading to disengagement from care. 7 This framework demonstrated how missed clinic visits lead to a sense of shame and fear of negative reaction by service providers upon return, which promotes a reluctance to return. The reluctance to return then leads to a weakened sense of connectedness to care and, ultimately, disengagement. We conducted a longitudinal qualitative study to examine experiences of PLHIV who disengaged from HIV care and treatment programs in Iringa, Tanzania. Specifically, we sought to gain an in-depth understanding of contextual factors affecting the decision to disengage from care, experiences while disengaged and, if applicable, the re-engagement process. The framework developed by Ware and colleagues was used to analyze the data and frame the presentation of results.
Methods
Between March and November, 2013, we conducted 37 in-depth interviews with 14 PLHIV who had disengaged from HIV care and treatment services. Participants were eligible if they had previously been receiving ART from a care and treatment center (CTC) but stopped attending appointments and were not currently attending monthly CTC appointments. No specific time period for disengagement was required. We aimed to conduct three interviews with each participant at 3-month intervals to understand changes in their experiences over a 6-month period. Participants were recruited from both urban and rural areas of Iringa region with the help of community health workers who knew PLHIV in the community who had disengaged from HIV services. We interviewed six male and eight female participants with an average age of 35 (range 27–50). The average time disengaged from care was approximately 2 years, ranging from 1 to 5 years.
Eleven participants completed all three rounds of data collection; two participants were lost to follow-up after the first round of data collection, and one participant was lost to follow-up after the second round of data collection. The study team made three separate attempts (including phone calls and visits to the participant's home of record) to locate participants for follow-up interviews. One participant declined to continue participating in the study after the first interview, and two participants could not be located. Participants were compensated for their time with 10,000 Tanzanian Shillings (∼USD6) at the end of each interview. Findings presented here are part of a larger qualitative study assessing barriers and facilitators to linkages to care in Iringa region, which included data collection at HIV testing and treatment facilities, community-based HIV care and support services, and longitudinal in-depth interviews with PLHIV (including both those currently engaged in care and those not engaged in care). 18
Semi-structured interview guides were used to explore participants' experiences with linkages to care, with an emphasis on both initial engagement in services and the participants' decisions to disengage from care, resulting experiences while disengaged and, if applicable, the re-engagement process. Questions were open-ended and probing was used to explore additional topics that arose throughout the interview. Interviews were conducted in Swahili by experienced Tanzanian ethnographers who received an additional week-long training specific to this study. We took a narrative approach to data analysis. 19 Interviews were recorded, transcribed, and translated into English. The first and third author read and re-storied individual interview transcripts for each participant into a semi-structured narrative summary of that participant's experiences. The authors discussed similarities and differences in participant experiences and created summary memos for each major theme based generally on the Ware framework, including reasons for disengagement and reluctance to return. In addition, we included a section on re-engagement in care. Data from summary memos and representative quotes were developed into the results presented here.
Ethical approval was obtained from Muhimbili University of Health and Allied Sciences, the Tanzania National Institute for Medical Research, and the Johns Hopkins Bloomberg School of Public Health.
Results
Results are presented below based on an extended “reluctance to return” framework introduced by Ware and colleagues. 7 We begin by discussing reasons for disengagement from care, followed by the reluctance to return. As an extension of the Ware framework, we also discuss experiences re-engaging in care, which we were able to capture throughout the course of this longitudinal study.
Reasons for disengagement
The decision to disengage from care often resulted from a combination of events that began with missing one or more scheduled appointments. Most often, this occurred when a person worked away from home and was unable to return to the clinic for a scheduled appointment. Other reasons for missed appointments included lack of money for transportation, traveling to care for a sick relative, and losing a CTC card and being told by providers to get an official letter from the police before returning to care.
For many participants in our study, disengagement from care then occurred because of the way they were treated by service providers after returning to the CTC on a later date, or because of anticipated fear of mistreatment. Participants almost universally discussed being shouted at, “scolded,” or denied services as punishment for disobeying clinic rules and failing to attend scheduled appointments. One participant, who failed to attend services for 3 months due to lack of money for transportation, described how she was treated upon return:
I attended [CTC services] until I stopped going because I didn't have transport money to go to the hospital…When I returned after 3 months, the doctor found my file and saw that [I had missed visits] and started yelling at me and asking why I had missed all these visits. I said that I didn't have transport money and when I get to the clinic I feel hungry but I don't have money [for food]…so I lost hope. −F, 50
Another participant, who traveled for his job and missed two appointments, was denied services when he returned. He explained:
I arrived [at the CTC] and I went to explain myself. I gave [the nurse] a card and told her, “Madam, I had travelled for the past two months. Please help me, what should I do?” She said, “We do not care about your issues; get out.” −M, 33
Despite this negative treatment, participants were often determined to continue engaging in care and treatment services. After their initial negative experience, several participants returned to their health facility, apologized, and asked to continue with services, but were again treated with disrespect. For example, after missing one appointment due to work, one woman said that the service provider she met was extremely rude and spoke to her harshly, even though she apologized several times. She waited at the CTC all day, but providers refused to give her services. Frustrated by this encounter, she stayed away for 2 months. During the third month, she again tried to return to the CTC but noted “they continued to be rude to me and I felt really bad, so I decided to stop my [ART] dose.”
Reluctance to return
Participants who had disengaged from care discussed a desire to return and were aware of the importance of ART for their survival. However, all participants also expressed a strong reluctance to return.
Fear of harsh treatment upon re-engagement was the main reason for reluctance to return. Participants agreed that regular clients of CTC services were commonly treated with disrespect and worried that re-engaging in care after an extended absence would trigger even harsher treatment than normal. One woman explained:
I am scared because I have not gone there [CTC] for a while; I tell myself that if the patients who normally attend the clinic are regularly scolded, then what will be done to me? [Service providers] will tell me, “You are negligent. Where is your card? Why are you like this?” That's what scares me because I think of what will happen if I go there for the medications. They will start scolding when I enter. −F, 28
In addition, after extended disengagement from care, study participants often felt that they were at fault for missing appointments and believed they had been “rude” or “disrespectful” to service providers by breaking the rules clients were supposed to follow. One participant expressed her apprehension about returning:
I will [return] but it will be hard…Because if you stop taking medication, it is difficult to receive services [when you return] because you were rude to them…[Service providers] attend to you, but after a delay. They will refuse to attend to you before seeing people who remained in care. −F, 25
Several participants with formal employment were reluctant to return to care because they knew they would not be able to adhere to monthly appointments due to their inability to regularly travel to health facilities. This was especially true for participants who migrated for work, on agricultural plantations or road construction sites, and traveled to new locations frequently. One timber plantation worker explained his hesitation to reengage in care in this way:
I want to return [to the CTC] but with the work that I am doing, I go to the forest and can be gone for 3 to 5 days. You find that they schedule your appointment on a day when you are unable to attend. So you miss the appointment again. I need to find an office job so that I wouldn't have to go to the forest. −M, 31
Despite their reluctance, some participants were determined to return because of their need for ART. One woman said:
I have to go back because I don't want to die. I have to take the medications to stay alive. Of course it's our fault that we dropped out of services, but we ask God to soften their [service providers'] hearts so that they accept a few of us who have dropped out…I am just praying to God to help me go back to the clinic. I pray that they accept me without scolding. −F, 33
Re-engagement process
Among participants who completed all three interviews, 73% (8 out of 11) re-engaged in care during the duration of the study and the remaining participants said they planned to return. While some participants attributed their decision to re-engage to declining health or pressure from a family member, others explained that their decision was a direct result of their participation in this study and the presence of the interviewer who spoke to them about their experiences. Speaking to the interviewer, one woman said, “I thought that since you came to advise me and then I don't go…I thought it won't be good; let me go [to the CTC].”
During the initial return to care, most participants asked a family member or treatment supporter to accompany them to the CTC clinic to speak on their behalf and facilitate the re-engagement process. Alternatively, several participants approached someone they knew and trusted at the clinic. One male participant, who did not have a treatment supporter, told the interviewer that he could not return to the CTC alone and asked the interviewer to help him through this process.
Although participants expressed fear of returning to care, all who tried were successfully able to re-engage. One woman explained that she was “not scolded that much” by providers, and participants generally explained that they were “warned” not to repeat this behavior again. Most participants felt that they needed to apologize for their disengagement, which they viewed as a serious mistake, and asked service providers for forgiveness. Another participant, who was afraid to return to her original CTC for fear of mistreatment, attended a different facility and never told anyone she had previously initiated ART. She was able to re-initiate ART, but only after re-testing for HIV and repeating several weeks of pre-ART training.
Discussion
As HIV programs seek to improve long-term retention in care and treatment in order to minimize negative consequences of treatment interruptions, an understanding of contextual factors leading to disengagement, and barriers to re-engagement, is crucial. In this study, the decision to disengage from HIV care and treatment programs was most commonly the result of disrespectful and harsh treatment following missed clinic appointments. Participants expressed a strong reluctance to return; however, despite this reluctance, a majority re-engaged in care in the course of the study.
Our findings support and extend the framework developed by Ware et al. in understanding processes around disengagement from care. 7 Consistent with findings from the study by Ware et al., we found that most of the conflict that led to disengagement occurred after a client had missed an appointment, often due to unavoidable events such as traveling for work, caring for a sick relative, or lack of money for transportation, barriers that have been widely documented in other settings. 8,20 –22 Missed visits for HIV care and treatment services are to be expected throughout a person's lifetime on ART, and systems must be able to accommodate these occasional absences. However, our findings suggest that in this setting, clinic policies are rigid and provide little flexibility to accommodate absences. At the time of this study, CTCs in Iringa region used paper-based client records, which were organized by assigned appointment date. A missed appointment created additional work for service providers who had to re-locate the file when the client returned on an alternate day, which was discussed by providers in our larger study as a reason for little tolerance for missed appointments. 18 Systems that allow for less frequent clinic visits, a longer supply of ART, or more flexible hours have been shown to reduce attrition in other settings 23,24 and could provide the necessary support and flexibility for clients like those in our study. In addition, developing systems that allow clients to have a say in scheduling or rescheduling appointments, and more easily accessible client recordkeeping systems, could further reduce the conflict documented here.
Our findings support the Ware framework in which disrespectful and often abusive treatment by service providers following an absence was the main cause of disengagement and reluctance to return. These findings highlight the critical need to improve provider–client relationships in HIV care and treatment programs. Disrespectful treatment by service providers has been noted in several studies as a barrier to retention in HIV care 7,25,26 and may represent a sizeable yet understudied factor contributing to disengagement. Consistent with findings from other settings, previous work by our team in the Iringa region 18 suggests that provider demotivation and burnout is common and a result of staff shortages, unrealistic workloads, emotional strain, and lack of supervision and training. 27 –29 In addition, stigma continues to be an issue that permeates many aspects of HIV care and treatment and, while not explicitly stated, likely played a role in the negative provider attitudes discussed in this study. Finally, hierarchical relationships and discipline through shame and punishment as a form of motivation are consistent with other practices within the health care system and other institutions in Tanzania and elsewhere. 30 –33 Increased support, supervision and training for service providers, including skills and techniques to promote recommended behaviors among patients could promote respectful relationships and help to improve provider–client interactions, but should be considered within the context of institutional norms and practices that are larger than this specific CTC setting.
Reasons for disengagement from care and resulting reluctance to return in this study align well with the “reluctance to return” framework developed by Ware and colleagues. 7 Our longitudinal study extended beyond the disengagement period and allowed us to examine the experiences of a majority of participants as they re-engaged in care. Although our study participants expressed a reluctance to return to care, a majority re-engaged during the course of this study. Developing systems to facilitate this process is an important consideration. Our findings suggest that a small nudge, in the form of support from a family member or friend, or even a conversation with an interviewer in a research study, was often enough to prompt re-engagement in care. Three participants who did not re-engage in care during the course of this study noted that they would like to return to care, but all discussed two main reasons for failing to return: continued anxiety over returning to care due to fear of mistreatment by health care workers, and a lack of strong support systems to help facilitate the re-engagement process. Over the course of the study, the same barriers were raised when interviewed over time, indicating that there were no changes in the factors that prevented re-entry into HIV care. Community health workers or patient tracers can be effective in tracking people lost to follow-up 5,34 and could play an important role in this process by acting as the link between the facility and client and supporting PLHIV throughout the process of their re-engagement with care. Participants in our study wanted reassurance that they would be able to re-engage in care without facing severe negative treatment. Providing this support, and facilitating a safe and respectful return to care could increase re-engagement in care.
Participants in our study commonly viewed their disengagement from care as shameful and blamed themselves for disobeying firm rules around HIV care, even if the decision to disengage was a direct result of abusive treatment by providers at these facilities. In addition, participants were “warned” by service providers not to repeat their behavior, which furthered feelings of guilt and shame. Ware et al. discuss this reciprocal relationship, whereby a patient is provided with life-saving medications in return for strict adherence to medication and clinic appointments, as a way to explain and justify the behavior of both clients and providers. However, our findings indicate that these judgmental attitudes and hierarchical relationships contribute to disengagement and reluctance to return. Studies in the United States have found that positive patient–provider relationships, in which the patient feels “known as a person,” increase ART adherence among PLHIV. 35,36 Both our study and others 26 highlight the importance of improved communication and respect between patients and providers and the need to understand better the barriers in order to facilitate this process from the perspective of the client as well as the provider.
The longitudinal approach of this study design provided an in-depth understanding of participant experiences and allowed us to follow participants prospectively through disengagement and, in many cases, re-engagement in care. However, this study has limitations. First, participants were generally recruited with the help of community health workers who knew participants personally. Experiences of disengaged individuals who have no link to the health system may be different from those of participants in our study, but most crucial to understanding disengagement. Second, this study was conducted in one region of Tanzania; reasons for disengagement may differ in other settings in sub-Saharan Africa and elsewhere. Third, while provider mistreatment was a main reason for clients to disengage from care, we did not explicitly explore reasons for this mistreatment from the provider perspective; further studies examining this behavior are recommended.
In conclusion, finding from this study confirm the applicability of the “reluctance to return” construct to understand disengagement from HIV care in Iringa, Tanzania. This study further explores experiences throughout the re-engagement process. Developing strategies to minimize disengagement and facilitate re-engagement through more flexible attendance policies, improved client-provider interactions, and outreach and support for disengaged clients could help to improve retention and re-engagement in lifelong HIV care and treatment programs, ultimately improving health outcomes.
Footnotes
Acknowledgments
We are grateful to the study participants and the support of all those who have contributed to this study and the Research to Prevention (R2P) project. We would especially like to thank he LTC Tanzania Collaborative Study Team, including Dr. Jessie Mbwambo, Dr. Samuel Likindikoki, Catherine Shembilu, David Gitagno, Lilian Mgeni, Maureen Peter, Editha Laizer, and Emmanuel Massawe from Muhimbili University of Health and Allied Sciences. This work was supported by USAID | Project SEARCH, Task Order No. 2, funded by the US Agency for International Development under Contract No. GHH-I-00-07-00032-00, beginning 30 September 2008, and supported by the President's Emergency Plan for AIDS Relief.
Author Disclosure Statement
No competing financial interests exist.
