Study overview

The study was undertaken as part of a larger, multi-part project studying implementation of Treat All in Rwanda. Authors on this study included investigators in the Einstein/Rwanda Research and Capacity Building Program, a collaboration of American and Rwandan investigators. Rwanda, a Central African nation with an estimated HIV prevalence of 3.0% [20], implemented Treat All in July 2016, with all PLWH immediately eligible for ART. National guidelines recommend that HIV pre-test counseling should be focused and streamlined, and that ART initiation should occur as soon as possible after diagnosis [21]. Earlier research we conducted demonstrated rapid uptake of Treat All by health centers in Rwanda with most patients initiating ART soon after diagnosis [22]. We decided to conduct the present study to better understand patients’ experiences of receiving care under this new paradigm, in particular to learn whether the larger numbers of individuals accessing ART, recommendation to initiate ART within 7 days of diagnosis, and the related reduced amount of pre-ART counseling might place additional burdens on some patients.

We conducted individual, semi-structured interviews with PLWH at two health centers in Kigali, Rwanda. The study, approved by the Rwanda National Ethics Committee and the Institutional Review Board of the Albert Einstein College of Medicine, was conducted according to the principles expressed in the Declaration of Helsinki and is reported in accordance with Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines (S1 Checklist) [23]. Participants provided written informed consent prior to enrollment in the study.

Setting and participants

We recruited a convenience sample of participants from two health centers that each provide routine HIV care and treatment to approximately 2,000 PLWH. Participants were recruited after referrals from health center staff. Inclusion criteria were: 1) ≥18 years; 2) living with HIV; 3) receiving/had received care from study health centers. Exclusion criteria were: 1) unable to communicate in Kinyarwanda, and 2) unable to provide informed consent. We purposefully recruited younger participants (ages 18–24), who have historically had poorer HIV outcomes, and those who missed appointments over the year prior to enrollment (i.e. patient files demonstrated ≥1 occasions on which they did not attend a scheduled appointment), aiming for a sample that was at least one-third younger participants and one-third persons who missed appointments. Participants were compensated 8,000 Rwandan francs ($8 USD) for their time, and transportation to and from the health center for the research interview.

Data collection

An interview guide informed by the socioecological model (SEM) [24] was developed to elicit perceived barriers to, facilitators of and acceptability of initiating ART rapidly, adhering to ART, and attending health center appointments as they related to individual experiences, social networks, health care settings, and Rwandan society (Table 1; S1 Table). Prior to data collection, the interview guide was piloted with research staff not involved in the current study to ensure questions were comprehensible and interview length was appropriate After obtaining informed consent, semi-structured interviews lasting 60–90 minutes were conducted in Kinyarwanda (the language most commonly spoken in Rwanda) by a nurse (FU) and a social worker (JG), both trained in qualitative interviewing. Interviewers were not clinicians at the study health centers and had no prior or subsequent relationships with participants. Each interview was conducted in a private room at the health centers with only the participant, an interviewer and a note taker present; interviews were audio-recorded, transcribed in Kinyarwanda and translated to English. Transcripts were reviewed and compared to field notes to ensure that they reflected all content that arose during interviews. Interview guides were iteratively refined to clarify and further explore emerging themes relevant to implementation of Treat All.

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Table 1. Example questions from interview guide.

https://doi.org/10.1371/journal.pone.0251645.t001

Data analysis and validation

English-language transcripts were analyzed using a mixed deductive and inductive thematic analysis approach to describe key barriers to and facilitators of initiating and adhering to HIV care under Treat All. Three investigators (JR, CI, MA) developed the initial coding scheme using the SEM to categorize common themes that were present in three transcripts. The coding scheme was refined based on inductive analysis of emergent themes from transcripts as well as field notes related to elements of healthcare delivery that changed with the implementation of Treat All; discrepancies were discussed in detail and resolved by consensus. Using DeDoose software [25], the final coding scheme was independently applied to all 37 interviews by 4 coders (JR, CI, FU, JG), with each interview being coded by at least 2 investigators. The coding team regularly reviewed progress and resolved issues by consensus. These discussions also helped to establish that saturation had been reached. After all interviews were coded, excerpts were reviewed, examining themes within codes as well as between codes and using the constant comparative method to identify, refine and consolidate emergent themes. At the completion of data analysis, three investigators (CI, FU, JG) conducted a focus group, inviting 8 study participants to validate the findings and ensure that major emergent themes were consistent with participants’ experiences. This group was purposefully selected to represent the variation among study participants in terms of gender, age, health center, and engagement in care; all 8 individuals agreed to participation. Investigators presented key themes that emerged from the analysis and solicited impressions from participants, incorporating feedback from this focus group into the final analysis.

Trauma of HIV diagnosis as a barrier to initiating ART

The experience of being diagnosed with HIV was described by most participants as a devastating and overwhelming event. Many recounted shock, trauma and grief when they received a positive result, feelings that were often compounded by isolation and anticipated stigma from their social networks. One participant explained, “When I arrived at home, I was invaded by grief, as you can understand. I felt like I didn’t want anyone to speak with me because I felt that anyone who knew me knew that thing [HIV-positive status]. It was very hard for me, to the extent I thought that living was not necessary for me. I didn’t need to live; I stopped working and spent two months thinking about it.” (35-year old male).

Many participants described how they equated their HIV diagnosis with death, anticipating that the virus would soon end their lives. For some participants, the emotional crisis stemming from the diagnosis was severe enough that they contemplated suicide. For example, “Immediately after they told it to me, I thought there was no more life. I thought that was the end. The healthcare provider told me that I will continue to live—but me, I thought that even though I would continue to live, I would not live more than 10 days. When I thought about how a person who died of that contamination looked like, I said that I would not die in that way with a skin rash, losing my hair, skinny with visible bones on the whole body. I thought that there was no more life. I thought to kill myself after arriving home from the health center” (38-year old female).

Because of these overwhelming feelings, many had difficulty accepting their diagnosis and engaging in treatment immediately after diagnosis. One participant noted, “The healthcare providers gave me an appointment date so that I could start medication like others, but I didn’t respect the appointment because I was not mentally well and I had not accepted it. I spent 2 months without going to the health center” (27-year old male). Similarly, another participant summed up the challenges of starting to engage in treatment while still processing their diagnosis, stating, “I haven’t had a thought to take medication yet…they gave me medication but I was not yet sure that I had HIV” (22-year old female).

Contrasting opinions about initiating ART rapidly

Participants reported mixed feelings about rapid ART initiation, describing both the challenges of and the potential benefits of starting medications soon after diagnosis. For many, major individual-level barriers to initiating ART rapidly included lack of accepting their diagnosis, fear of lifelong medication and severe side effects at ART initiation. For example, one participant discussed how the prospect of taking daily ART for the rest of his life was overwhelming to him so early in the course of his treatment: “What terrified me is taking medications every day till I die. I wondered how I could spend 50 years on medications… I asked healthcare providers if I could not take a short break but they told me that I had to take pills every day. That traumatized me” (31-year old female).

Other participants described severe side effects in the immediate period after initiating ART. While these typically subsided after several days or weeks, many participants described these experiences as adding to the challenges of starting to take medications during the unsettling first days after diagnosis, and making it difficult to develop a habit of adherence. One participant recalled, “I started medication but it was not going well. I took medication and I felt dizzy, felt bad, had nightmares, had many things really. I could take medication one day, and didn’t take it the next day. I wished I could die so that it ends” (49-year old male).

For some, feeling healthy was a barrier to initiating ART, as they had difficulty reconciling their new HIV status with a lack of any feeling of illness. One participant noted, “They have to give you some time so that your brain can accept that you are sick and have to be treated, and have to take medications without skipping any day for a long time” (31-year old female).

On the other hand, many participants recognized the health benefits of early ART initiation, including maintaining health, preventing transmission to others, and avoiding the potentially stigmatizing physical manifestations of advanced HIV. One participant recalled, “I thought that nothing else could make me strong except HIV medication. I took medication so that it made me stronger” (33-year old female). Another noted, “The Treat All program is very good because all people who are contaminated with the virus can immediately start medication instead of being severely sick at home and consequently neighbors and others can know it” (33-year old male).

Moreover, some felt that initiating ART rapidly made it easier for them to accept their HIV status and engage in care. Participants described how receiving medications immediately after diagnosis could limit the potential for doubt and anxiety to sabotage therapy. For example, one described, “I think it is very good because if they test you and give you medications on the same day, you don’t feel very anxious, as you should feel if you start after a long time. It is helpful and prevents you from thinking a lot. It helps to accept the status and commit to taking the medication instead of continuing to think a lot about it” (35-year old female).

ART and HIV-related appointments as stigmatizing

Many participants described anticipated stigma associated with engaging in HIV care, particularly early in the course of disease when they were still learning to accept the diagnosis. They noted that whereas the physical manifestations of advanced HIV were now less of a concern, as these were less likely when initiating ART early, the medication itself, as well as appointments at the health center, now had the potential to signal their status to others.

At the individual and social network levels, participants described ART pills as symbols of disease, and as a result they were afraid to be seen taking their medications. For example, one noted, “When I started medication, I tried to avoid people we interacted with. Sometimes your friend could come to the house, get into the house by surprise and could see your medication. I started to take distance from the time I started medication…I started to be choosy about guests to avoid that people could know it [HIV-positive status]” (35-year old female). Others noted how the side effects of the medications, rather than physical manifestations of HIV, could signal their disease status to others: “I developed lipodystrophy; the fats were built in abdomen, I lost fats in my face, my cheeks went inside and I said that it was caused by the medication and I was afraid that people were going to know that I was contaminated” (24-year old female).

Attendance at appointments at the health center also led to anticipated stigma among participants, who described the fear of being seen by community members or acquaintances who might disclose their status to others. Because of these concerns, participants often skipped appointments early on in their treatment course. For example, one participant described the experience of her first follow-up appointment: “When they told me that I would take medication, I felt ashamed because I thought that I would meet with people who knew me. The first time I came, when I saw a neighbor woman they said she was contaminated, I went back home” (33-year old male).

Often, the long wait times at the health center compounded these feelings, as they added to concerns about exposure. A participant noted that after Treat All was implemented, “We became many patients…many people who come looking for the same service. When there are many people seeking the same service, I prefer to go back home instead of sitting on the queue while there are even people who know me” (24-year old male).

High level of support for Treat All as a policy providing early ART to all PLWH

Despite many of the challenges participants identified with initiating ART rapidly and adhering to care, there was an overall high degree of support for Treat All as a policy that would improve life for PLWH in Rwanda. Many participants appreciated how early ART initiation had physical and emotional benefits, contrasting this with prior policies that did not provide access to therapy for all. “[Before], many people’s health conditions could become worse and some could die. But now, when you start medication, you get hope to live longer” (35-year old female).

In addition to the potential individual gains from universal, early ART, participants also described the community and societal benefits of Treat All. In particular, they noted that early ART initiation and viral suppression could reduce risk of transmission to others. Participants expressed gratitude towards the government for increasing access to ART and in the process improving health equity. One participant stated, “[Before], someone could be sick and not know that he is sick, not take medication, develop opportunistic infection, and continue to infect many others. The decision of giving HIV medication to every person diagnosed who is aware of his status helps you to protect yourself and protect others.” (35-year old female). Another commented that. “[Treat All] is something I am happy with because everyone is eligible. Poor or rich people, they all get the same treatment without any money” (35-year old female).