Travel pack.

The travel pack option – provided in an unmarked wallet for men and a handbag for women – was incredibly popular among participants. Its popularity was partly a result of the pack’s versatility. Several participants used it for ID cards, money, and medication, as well as study-provided discreet packaging for medication. It was also a way to keep everything necessary for care engagement and ART adherence in one place in case of abrupt travel: “They put the forms, a phone number and the extra fourteen pills and 20,000 shillings for transport for that day when I received the pack. I was also given a box-like object with compartments for putting in my tablet.” (49 y.o. female, Uganda) The pack also eased stigma associated with taking medication when travelling:

“Well, this wallet is very important for me. In case I want to travel, I will make some kind of preparations. First, I would take my medication and, after placing those medications in a drug envelope, then I put it in my wallet, depending on the number of days I am going to stay away. During that period when I am away, I would just remove my pill as if I am getting some money from the wallet and take it. This has eased my work because if you carry those medications in something else apart from the wallet – let us say the bottle – then people around you become suspicious of you. But with the wallet, they would think I want to count my money, yet I am taking my pills (laughter).” (49 y.o. male, Kenya)

The benefit of keeping everything together was useful even for less mobile participants, who mainly used the travel pack when coming to the health facility for medication refills or for last-minute or far-away travel. A provider summed up the popularity of the travel packs and wallets:

“Actually, all men have opted to have their packs. Some women have preferred men’s packs <i.e., wallets> and not women’s because men’s packs are smaller… The men’s travel pack is something that can go into your pocket and some women have opted to go for that than to go for their packs because of the size. …Even when you find that someone has not travelled, they use the travel packs frequently. Someone would prefer to first open the travel pack and use the drugs and later replace them instead of opening the usual drug tins. So, I have not heard of the challenges or people complaining about them <but rather> people embracing them” (34 y.o. Study Nurse, Uganda)

In fact, multiple participants appreciated the extra twelve to fourteen pills in their bottles to serve a stop-gap measure in case of unexpected travel or delay in returning to the clinic and said it relieved them of stress in case of unexpected circumstances. The only concern a few participants expressed is that if the packs become widespread (i.e., given to all people in the area diagnosed with HIV), people would understand that they were given only to people receiving ART.

Mobility coordinators and mobility conversations.

A cornerstone of the intervention was asking participants about their travel plans; several other components depended on the response to this question. Participant experiences were tied to different types of mobility, as “some are mobile on economic bases while some on social grounds.” (35 y.o. Mobility Coordinator, Kenya)

Economic reasons for mobility included occupations such as fishing, trading, or work in the transport and construction sectors, as well as searching for employment. Social reasons included marriage, bringing family members to hospital, visiting friends, and funerals. Time away from home ranged from a day or two when travelling nearby, to between three and five months for construction jobs or bar work, to longer journeys in both time (more than five months) and distance (crossing international borders) for traders. Typically, shorter-term mobility was more abrupt, while longer-term travel was pre-planned. A few participants did not consider themselves mobile, or had their previous mobility curtailed due to pregnancy, illness, or injury (and potentially age).

Overall, patient-clients liked being asked about their mobility plans because it gave them a chance to work with the provider and strategise support for ART adherence as expressed by participants from two different sites:

“<Being identified as mobile> helped me a lot because at times I would want to travel yet couldn’t come and pick up medication before the next appointment.” (35 y.o. female, Uganda)

“I loved the idea since in the past, we would not be able to get a chance to talk with the provider and for the provider to understand our challenges. At the moment, I can come and talk to him, and he would ask, ‘How many days are you going to take outside this community? Take this; I am sure you will be back by this date.’” (31 y.o. female, Kenya)

One provider emphasized the importance of being specific when making this inquiry:

“It is also upon the provider to make it clear that a ‘travel’ can even take a day. Sometimes, when you ask about the travels, they think that they need to be carrying bags and travel to Nairobi or Kisumu. Yet they might travel to the mainland <from Mfangano Island> or Rusinga Island and spend a day or a night. You have to remind them about this all the time for them to inform you so that you can support them during their travels.” (36 y.o. Mobility Coordinator, Kenya)

Participants remarked that such openness with their providers around travelling was new to them, and some quickly adapted to the change, incorporating planning medication and informing the providers into their trip plans.

Viral Load Notification and counselling.

Although providers and staff are trained on viral load counselling, the mobility coordinators also had the opportunity to fill gaps and reinforce participant knowledge around viral load. Confusion sometimes persisted about the difference between CD4 levels and viral load; as one participant admitted, “I didn’t understand whether all worked the same way that is the CD4 being low and also viral load low or otherwise” (49 y.o. female, Uganda), and some participants even thought it was good to have both a high CD4 count and a high viral load. Nonetheless, a mobility coordinator explained that,

“Initially, the importance of viral load was not emphasised; the service provider would take the blood sample and inform the patient that the results were not looking good. The patients did not understand what was being tested. Today, they are more informed about the viral load results; they know how to interpret the results and what it means and know what to do to improve.” (36 y.o. Mobility Coordinator, Kenya)

Reviewing viral load results with patients and counselling them on what it meant helped providers create strategies with their patients to support ART adherence: “When they give me my result – let us say <hypothetically> 1000 or 2000 copies – they will have to explain to me why it is at that level. They will offer me counselling about the reasons why it is high and what I should do in order to reduce my viral load level.” (49 y.o. male, Kenya) Meanwhile, providers felt viral load counselling fostered greater openness with patients. “Viral load and adherence counselling has been so important to most patients’ lives, in addition to the strong rapport between the patients and us; this is so because, despite all odds, they feel cared for” (35 y.o. Mobility Coordinator, Kenya). Once participants understood the relationship between adherence and viral load, they reported being motivated to adhere to achieve viral suppression, and the only drawback mentioned was anxiety if it was high.

Phone contact and streamlined care.

Participants appreciated the quicker service at clinic and pharmacy, as well as the friendly providers who would conduct follow-up calls, both of which were new to many participants.

“This provider is good because he calls me two days before my appointment. If he does not see you in the clinic on that day and you tell him that you are at home or in the market, he will carry the medication and give it to you privately. This helps because those of us who sell omena <a small Lake Victoria fish> might be very busy until after dark, and you might only remember your appointment at your pill time. It has helped us.” (35 y.o. female, Kenya)

Phone contact with providers was new to some participants, who felt reassured that they would still receive HIV care if they woke up sick. Several participants used the provider contacts for assistance. In the context of financial constraints, while phone contact was appreciated, some observed that phone contact with airtime would be better, and a provider noted the challenge of patients sharing phones and giving someone else’s phone number as the contact.

Longer refills.

The local MoH clinics had begun extending refills from between one and three-month long refills per visit to six-month refills during the COVID pandemic to reduce congestion at the facilities. Yet longer refills also helped save on cost of transport, eased work schedule conflicts and the stigma of frequent clinic visits, and permitted participants to focus on adherence rather than on clinic appointments.

“Previously, I used to be given one month, but now I am given three months, and this helps me in saving on transport to come to the hospital. I was later given five months. …One is not under pressure to come every other time for their clinic appointment so one concentrates on taking their medication till the next appointment.” (35 y.o. female, Uganda)

Longer refills meant fewer clinic appointments and less community speculation about why some participants were ‘always’ at the facility, allowing participants to avoid the stigma associated with recurrent clinic visits. “(chuckles)…you know that when we walk around the community, people say, ‘So and so is always going to the hospital.’ The people within the facility love that, but within the community, people say, ‘She keeps going to the hospital, what is she going to get?’ It has helped me with that.” (31 y.o. female, Kenya) In this way, the longer refills helped some participants avoid the (self-)stigma that resulted from monthly visits to the clinic, potentially facilitating greater adherence.

Synergy between mobility conversations, phone contact, and multi-month refills.

The longer refill option plus sharing mobility plans meant that if a participant had a journey, they felt able to call the providers, state how much ART remained in their current prescription, and the providers would top up the remainder. Longer refills depended in part on mobility, but also on demonstrated adherence patterns.

“When I started care, I was coming to the hospital every month. I think they also assess your commitment and persistence to care; if you are coming for your appointment without missing, then they adjust your schedule. This made them give me a refill every two months as they continued to assess whether I could obey the two-month appointment schedule. Then currently, they are giving me after three months because I usually keep my scheduled clinic appointment date. They are happy with me.” (49 y.o. male, Kenya)

The usual length of refill was three months, but some more mobile persons had longer refills. Some participants felt those less engaged in care might forget to return for their refills. Yet longer refills also came with encouragement to contact providers if any challenge should arise, as one participant noted: “I was told to be reporting to them any challenge that I may be experiencing when I have a long-term stock of the drugs, either through a phone call or I may physically come to the health facility.” (29 y.o female, Kenya) A more important drawback, however, was mentioned by one participant who related a time when the clinic was short on stocks of ART, compromising their usual ability to give out longer refills:

“I remember there was a time I was given a refill lasting for a month, and I asked, ‘Why are we given such short refills?’ The then healthcare providers said, ‘There are few doses of the drugs in our stock and thus, we are giving such so that all of you may benefit.’ At times, we could be given a refill lasting for only three weeks, and it may be this time when you have no money for fare and the children are also out of school due to lack of school fees. … This was so devastating.” (38 y.o. female, Kenya, beginning virally unsuppressed)

Study providers were careful to indicate the tailored nature of longer refills:

“For those who requested for offsite delivery, now, it will depend on the time we gave. Some we give 6 months or 4 months depending on the condition, or like I told you, for 2 months to those with issues <with adherence>. But someone can’t go beyond 6 months without coming to the clinic, even if they opted for a long refill. So we make sure that at 6 months he comes back within the clinic because we want to fully assess the condition of the patient by the clinician.” (47 y.o. Mobility Coordinator, Uganda)

Community ART delivery and other services.

Participants also found off-site delivery of medication to be new and well-liked; in some cases, community delivery of medication also meant blood draws were done at home for viral load testing. Participants liked offsite delivery because it assured them of receiving on-time refills in case they couldn’t make a clinic appointment due to illness: “The only thing that runs in my mind was that someone can fall sick at any time, and if this happens, whom can I send? Therefore, when the provider told me he could bring me medication at home, I was impressed.” (49 y.o. male, Kenya)

The few participants who did not use community delivery tended to be in town when their medication refill time approached; for those participants, the longer refills were more beneficial than home delivery. Those who didn’t use this option noted that they had the provider's phone number and could call the clinic in case they needed to make use of the service. The drawback participants mentioned when it came to home delivery was that the providers came only with ART, not medication for other health issues.

With respect to the final two components of the intervention, although the intervention attempted to streamline transfer letter requests and broker care at other clinics, other clinics might have different operating hours or procedures, as one participant discovered when she attempted to access medication at a clinic where she took her mother for care:

“I had some pills to last me for four days… <My provider> suggested going to the ART clinic at the facility where my mother was admitted. She said I should tell her how it goes at that clinic. When I got there, they told me, ‘We do not work on this day, we work on such and such a day.’” (22 y.o. female, Uganda)

Facilitating transfers, however, was comparatively easier, and several mobility coordinators described this process:

“What we do is we tell them to find a nearby health facility, then after identifying it, we track and get contacts from the facility and tell them we have our participants who are part of the study… After this, we tell our participant to go on that very day or a specific day and look for X to help them. It has been working, and we haven't failed to link any of our participants who wanted to be transferred out.” (47 y.o. Mobility Coordinator, Uganda)

Despite transferring to a new clinic, some participants still considered the study clinic to be their ‘home’ clinic. Although we did not interview participants who transferred out of the community, mobility coordinators maintained contact with the ‘distal’ clinic to facilitate the participant’s return home:

“I have another patient who receives his refill in <a different> sub-county hospital. I instructed him on how to go about it, and he received his drugs; these people still consider this as their home, and they say that they will come back to the community once in a while. When they come back, we encourage them to let us know so that we can do a review to know how they are doing and what needs to be done.” (36 y.o. Mobility Coordinator, Kenya)

Continued services.

Participants recommended continuing longer refills and the flexibility of community delivery. Participants advocated continuing viral load testing “because it helps us a lot” (36 y.o. female, control arm, Uganda). They appreciated adherence encouragement calls from providers (including the mobility coordinators who monitor participant progress), and wanted their availability for phone consults to continue. Providers concurred:

“…You know when you give patients like a six-month refill, we normally give them calls every three months. I didn’t know that even that one would be there and it has been very good because whenever you call a patient and you say that ‘I am X your health worker trying to find out how you feel,’ they are like, ‘I feel very happy, I feel so good to talk to you’.” (47 y.o. Mobility Coordinator, Uganda)

Participants also wanted mobility conversations to continue:

“Actually, when the provider asked such questions, he just reminds me to be active in care, and he triggers my mind to go to the hospital for my medication. … I always take it positively because he is trying to help me. … I would add that let them continue asking me such questions to keep me awake… (laughter).” (49 y.o. male, Kenya)

As mentioned, the travel packs were very popular, and aside from the men’s packs also being popular with women, the only caution participants expressed was that if the packs are given only to PLHIV then the community will come to know the packs signify someone with HIV. Therefore, a derived suggestion is to make travel packs available to anyone with medication-treated chronic diseases (e.g., diabetes, hypertension).

Service improvements.

Most improvement suggestions came from people who were well pleased with the viral load component and wanted more frequent viral load testing, quicker turnaround time, and consistent sharing of results to strategise with the providers around adherence if necessary. “I would like to know the specific amounts of the viral load so that I can be able to tell how much the viral load has reduced. … I wish they test our viral load every two months such that these two months I have spent while taking ARVs, I should be able to tell the levels.” (22 y.o. female, Uganda) Participants also suggested even longer refills or a yearly injection, though some paired this with three-month check-in calls to ensure the patient isn’t facing setbacks. One person suggested that the mobility coordinator follow up in person if the participant is unreachable by phone.

Participants also expressed concerns about potential interactions between pharmaceutical medication (e.g., diabetes pills) and ART. Similar concerns related to how diet and ART interact, or how diet can support ART. Participants tended to think about food in relation to how ART works partly because of the context of food insecurity, and this concern often, but not always, came from participants who were food insecure or who also recommended the clinic supply some food provisions. In this context, some participants incorporated such social determinants of health into what would otherwise be a lay explanatory model for how ART works on the body, suggesting that participants form their own ‘extended’ or ‘holistic’ explanations about HIV treatment efficacy beyond ART adherence alone:

“Sensitization on balanced diet is a key thing here for those who do not know the kinds of foods that they should be taking and when to take them. … Since if you do not eat well and you are taking medication it will not work effectively, the medication works well when you have eaten. And not just any food, every food is important in its own way.” (31 y.o. male, Kenya)

“Sometimes the normal procedure of taking the weights helps to determine whether one is adhering well to the treatment or not, with the trend in the body weights. The clients are given the chance to explain why their body weights are the way they present. Some of the reasons as to why there are low body weights is that various clients have different levels of income. You may be taking the drugs, and there is no good food to maintain the body, and when this one becomes a routine, the drugs will have no effect on the body. It should be that there is some food in the stomach either before or after taking the drugs.” (38 y.o. female, Kenya, beginning virally unsuppressed)

The lay etiology or causal chain for concluding that poor diet leads to high viral load appears to be that food insecurity means people take ART without food, leading to side effects. These side effects then lead to poor adherence, a resultant high viral load, and further weight loss. In parallel, consistent adherence leads one to appear in good health through weight gain. Weight, therefore, stands in as a proxy for viral load in some patients’ perceptions.

Nearly all participants preferred their current location and foresaw adherence challenges if they switched clinics. A young participant suggested that a single provider be assigned to one's case, so the patient could later refer friends to that specific doctor. One provider recognised that clinic transfers are problematic when each clinic has its own system, and recommended electronic medical records (EMR) for all clinics: “If all facilities would transition from physical files to EMR, then it would be much easier to assist such kinds of transfer-outs because the participant would not need to move with a physical transfer letter.” (36 y.o. Mobility Coordinator, Kenya)