The findings emerging from this study are presented based on themes derived from the analytical framework advanced by Levesque and colleagues  described above. The broad themes proposed were individual-level, health-system, community and contextual factors.
Focus group discussions with patients and interviews with HIV service managers revealed multiple individual-level barriers to use of DSD models in Uganda. These were: internalized stigma, fear of detachment from the health system and limited patient literacy about Differentiated Service Delivery.
Internalized HIV-related stigma
Our findings show that internalized stigma is a fundamental barrier to enrollment in community-based DSD models due to fear of breach of confidentiality of their HIV sero-status which would be inadvertently disclosed to all members of a patient group to which an individual belongs. Individual fears of involuntary disclosure of HIV status to peers was frequently cited as an impediment to enrollment in DSD models across our focus groups with patients and interviews with health workers. As one patient said:
‘Patients don’t want to join CCLAD [community client-led ART delivery] groups because they say ‘so and so will get to know that I have HIV’. So, the lines are still long at my hospital because people still live in fear to come out and join patient groups for picking their medicines because they think if you take for him ARVs then you will tell somebody else who was not aware of their HIV status. So people still have that fear’ Patient, FGD, PUB-01
Fear of detachment from the health-system
Numerous patients enrolled in community-based DSD models expressed a fear of detachment from the health-system due to a markedly reduced engagement with the health system for the majority of whom were deemed stable on ART and hence did not have a clinical need to make monthly visits to HIV clinics for reviews. Several patients in the FGDs described deriving psychosocial support in regular face-to-face interactions with health workers. Some patients also expressed personal attachment to individual health workers who they had grown accustomed to meeting monthly for scheduled reviews. Patients frequently expressed fears that prolonged periods without being seen by health workers would imply inability to access comprehensive care including in the event of opportunistic infections such as tuberculosis (TB).
‘When the clients are given drugs for three months, one may get an attack like TB or another opportunistic infection so it may take long for health workers to discover. When you are in the community drug pick-up groups (CDDP) you feel you are no longer part of the health system. Sometimes you sit there and think, they took us to the community to die from there’ Patient FGD, PNFP-01
Overall, our findings from FGDs reveal that that the majority of patients appeared to prefer facility-based models over community-based DSD models. This notion seemed to hold even among health workers. Many health workers perceived fast-track refills (FTDR) to be the most practical DSD model to implement hence patient enrollments were reported to be skewed as such. Community-based DSD models, especially Community drug pick points (CDDP), were described as costly to implement as they required fuel for transporting health workers into communities to monitor CDDP groups, preparing pre-packaged ART medicines and finding suitable physical infrastructure to designate as community drug pick-up points in remote, rural settings. Hence health-system constraints and challenging operational contexts appeared to influence the uptake of (especially) community-based DSD models.
‘The enrollment in fast-track refill models is high which is good because it is the easiest to implement at the facility level in my opinion. The guidelines are very clear, two viral loads and you are stable, no problems, it’s easy’ ART clinic in-charge, PUB-01
The national-level HIV program managers reported national statistics on patient enrollment in DSD models that appear to corroborate our qualitative findings.
‘Currently, facility-based models account for the biggest proportion of enrollment in DSD models. Fast- track drug refills (FTDR) stand at 38%, facility-based groups (FBG) are at 9% and CCLAD (patient community groups) are at 7%. Nevertheless, the Ministry of Health is very optimistic about seeing more utilization of community models’ National-level, HIV program manager.
Contrary to what has been reported in the literature, a number of patients discounted the advantages associated with reduced frequency of visits to facilities such as reported savings in time and transport costs. Health workers reported that although patients are frequently sensitized about the advantages of enrolling in DSD models during their visits to the facilities for clinical reviews, some patients expressed a willingness to meet the costs of frequent visits to facilities especially those in urban settings.
‘Who told you I don’t have transport money to come here (at health facility) every month? For me I am prepared and ready to pay my 10,000 Uganda shillings ($ 2.74) every month to come here to pick my drugs’ Patient FGD, PUB-02
‘When it comes to DSD we are not on the same page with patients. Although DSD confers several advantages to patients such as savings in time spent at facilities and a reduction in transport costs incurred in seeking care, patients have other considerations which we have found to be contrary to our expectations’ ART clinic in-charge, PNFP-01
Health workers at two participating facilities (PUB-01, PUB-02) reported increasing cases of patients requesting self-referrals to especially private health facilities (many of which had not yet started implementing Differentiated ART delivery) on account of their reluctance to join patient groups especially involuntary ones initiated by health workers in some facilities.
Low patient literacy of DSD models
Low patient literacy of DSD models was a recurring theme across our interviews with health workers and in our FGDs with patients. It emerged that patients had not been sufficiently sensitized on the merits of enrollment in DSD models and there remained demand-side gaps in knowledge and awareness about DSD.
‘As a client in Kampala, I rarely hear mention of DSD at my facility. Even my fellow clients don’t know about DSD. That is a fact. As a peer-leader, if I tell them about DSD they have not seen it in practice’ Patient FGD, PUB-03
National-level HIV program managers conceded that there was a section of patients across Uganda who had not yet been reached by national DSD sensitization drives and community engagement efforts across the country which were reported to be on-going. Our interviews revealed that where DSD community-engagement drives had been conducted in Uganda they had targeted only a section of health workers and patient ‘peer-leaders’ who had not yet widely disseminated to the broader base of patients at health facilities.
‘Some of the patients have not heard about DSD, but this not surprising because we have not yet reached 100% of health facilities. Even in the Central Region, not all facilities have been trained. When we do facility-based trainings, the patients that we actually reach are the peer leaders’ National-level HIV program manager.
The national-level HIV program managers reported that increased health education talks for patients had been followed by increased DSD uptake including community-based models.
‘Facilities where sensitization has happened, you see that the uptake not only for the facility-based but even the community models goes up because then patients appreciate why they should actually join’ National-level HIV program manager.
One emergent finding from our interviews with health workers was that patient preference of DSD models was partly influenced by their socio-economic class. Specifically, health workers reported observing trends suggesting that individuals with relatively high income preferred facility-based individual models due to a perceived higher need of privacy and confidentiality. Lower-income individuals were said to prefer community-based models such as community drug pick-up points (CDDP) because they enabled them to make savings in transport costs.
‘What we are seeing is that patients who are better off (financially) decline joining community groups such as CCLADs and CDDPs because they crave privacy and prefer to receive individualized care at the health facility. But the reverse is true of our poorer and rural clients who prefer community models such as CDDP which reduce their transport costs’ ART clinic in-charge, PUB-02
Health worker competence in DSD delivery
Health worker competence in DSD was revealed as a bottleneck in service implementation in our sample of health facilities. Participants revealed that some health facilities had health workers who had not yet been trained in DSD delivery while for those facilities which had been reached by DSD training programs of the Ministry of Health, only a proportion of their health workers in the ART clinics had been trained in DSD delivery. Interviews with national-level HIV program managers revealed that 67% of health facilities across Uganda had been covered by the national program on health worker training in DSD service delivery.
‘Currently, we have trained health workers in 1,200 (out of 1,800) health facilities providing ART in Uganda. They have been engaged and trained on DSD implementation. Only 600 facilities are yet to be covered’. National-level HIV program manager.
Our findings in Eastern Uganda suggest that health worker trainings in DSD delivery did not necessarily translate into implementation particularly in lower-level health facilities especially those at the county (Health Centre IVs) and sub-county (Health center IIIs) levels.
‘Some health workers haven’t yet understood DSD fully, the existing policies and national guidelines are confusing to them. There are constraints around health worker competence’ ART clinic in-charger, PFP-01
Frequent ART medicines stock-outs were highlighted as a recurring bottleneck in implementing DSD models particularly the Fast-Track Drug Refill (FTDR) and Community Drug Distribution Points (CDDP) models. Across our interviews with health workers and focus groups with patients it was revealed that clients, in some case-study facilities, were getting one-month or even two-weeks supply of ARVs (anti-retroviral) owing to frequent stock-outs. Participants confirmed that there were country-wide ARVs stock-outs in the last quarter of 2018 which impeded multi-month refills which are a cornerstone of differentiated ART delivery.
‘Drug stock outs are a big challenge. We had stock-outs in the last quarter of 2018 and the first quarter of 2019. Those of us on fast-track drug refills(FTDR) , instead of being given a three month supply, we were getting one month and even two weeks at one point. So, how will we sustain the (FTDR) model?’ Patient FGD, PUB, 002
DSD not implemented in lower health facilities
We observed variations in DSD implementation by level of care in the Ugandan health system. In our sample of health facilities from Eastern Uganda, DSD implementation was reported to have commenced at the tertiary-level (regional and district hospitals). However, participating lower-level health centers (sub-district and sub-county health centers) indicated they hadn’t yet implemented DSD.
‘DSD is being rolled out at the level of tertiary hospitals and not yet at lower level health centers. Although some facilities have been trained in DSD services, they have not gone ahead to implement. The training was done but the implementation has not yet taken place because of so many issues’ ART clinic in-charge, PFP-01
In our FGDs at sub-district public health facilities in Eastern Uganda, patients indicated that although they had heard about DSD from their peers attending tertiary hospitals they had not yet been enrolled into DSD models. However, we found a handful of centers of excellence in HIV care such as The AIDS Support Organization (TASO) were already implementing DSD.
‘DSD is not a totally a new concept. It was named DSD but you will notice that in Uganda, we had already done differentiation. People were coming after every two months, after three months and in some places, like the centers of excellence like TASO. Actually, most of our learning around DSD was from TASO, they had already initiated the community drug distribution points’ National-level HIV program manager
‘’Unstable’ as a stigmatizing label
Patients described the terms used in DSD nomenclature of ‘unstable’ and ‘stable’ as stigmatizing. Although the terms ‘unstable’ or ‘stable’ denote clinical assessment of whether patients are doing well on treatment or not and therefore their eligibility for the various DSD models, patients expressed disapproval of the use of the term ‘unstable’.
‘Using the term ‘unstable’ and ‘stable’, to me and I think to some of us, that language is stigmatizing. If you tell me that John you are ‘unstable’, I will feel down. I feel that is unfair to me’ Patient FGD, PUB-01
Interviews with health workers revealed that prior to the introduction of DSD nomenclature in Uganda’s national ART guidelines of 2016, ART-providing organizations had devised more acceptable in-house terms to refer to ‘stable’ and ‘unstable’ patients. This included the use of colors to indicate a patient’s clinical status such as those suppressing and those not suppressing. Health workers maintained that DSD was not an entirely new approach in Uganda and that they had originally devised terms that were more patient-sensitive before the introduction of new nomenclature following country-wide DSD roll-out.
‘Where I get care they call it a ‘pink card’. When you get a pink card it means you are stable, you do not need to see a doctor all the time and people really strive to earn that card. They even call their doctor and say ‘doctor, I have got a pink card and I am so happy’. It is like a graduation’ Patient FGD, PUB-003
‘In Uganda, these are not the words we use because when you go to Buganda (central Uganda), they have simplified the ‘stable’ and ‘unstable’ by using local language alternatives. You get it? But our nomenclature in English of defining this person who is not suppressing is wanting. I understand and appreciate patient concerns’ National-level HIV program manager.
DSD is not client-centered
Patients and health workers concurred in relaying the notion that although DSD was intended to be a client-centered, current DSD delivery especially decisions on assignment of DSD models were provider-intensive and not sufficiently patient-centred. Although clinical criteria is paramount in patient differentiation, focus groups with patients revealed that their individual preferences were rarely put into consideration in assessing their readiness for a particular DSD model.
‘Patients are just told that “you, you will be getting drugs from your community’’. We are told that it is client –centred but is it? Clients should be involved in making decisions about their care’ Patient FGD.
National-level HIV program managers revealed a need to engender client-centeredness in the curricula of the on-going health worker DSD trainings across Uganda and to the need to provide opportunity for the participation of patients in DSD program design and the further refinement of these models.
‘We are trying to build the capacity of health workers in letting them know that groups that are self-formed are groups that are going to last. We have seen instances where the health workers go ahead and prescribe and two months down the road, everybody they put in that group is no longer there. Because they practically push them there’ National-level HIV program manager.
Clash between DSD and tuberculosis appointment spacing
An important finding of this study is that patients enrolled in DSD models such as those enrolled in the fast-track drug refill (FTDR) model or those receiving multi-month supplies of ARVs, but who were also on Tuberculosis (TB) management, were still expected to make monthly visits to the health facility regardless of whether they were stable on both ART and TB. Both health workers and patients perceived this as a practice that undermines the intended benefits of differentiated care of reducing burdens on patients who are clinically stable.
‘TB is one of the new areas that is coming up. How do we do differentiation for TB services? For example, you are giving preventive therapy of isoniazid for one month and yet this person who is stable on ART gets their review every 6 months, how do we reconcile these two?’ ART clinic in-charge, PUB-03
A few of the patients in our focus groups, particularly older HIV patients with co-morbidities especially Non-Communicable Diseases (NCDs) such as hypertension and diabetes reported that their NCDs conditions were being managed separately from their HIV care needs and the benefits of reducing the frequency of clinic visits were not being realized for them despite DSD implementation.
‘We have clients who are in the age groups of 50 and above, most of them due to cohort ageing, have NCDs and it gets difficult to have these people get into the drug refill programs the more you have a mature cohort the more you have other problems coming up’ Health worker, PUB-01.
National-level HIV program managers reported that patient enrollment in community-based DSD models across the country stood at between 5 and 7%. Participants reported that community DSD models were beset by multiple constraints ranging from HIV-related stigma to insufficient funding for operationalizing these models across Uganda.
‘Enrollment in community-based models is at about 5-7%.We need to see more involvement of stable patients in community-based models which is where everybody should be comfortable to avoid congesting health facilities when they are well’ National-level HIV program manager.
Across our interviews with health workers and focus groups with patients, stigma within communities stood out as a critical barrier to realizing the full potential of DSD in relieving pressure on over-burdened health facilities.
‘Community models are not very popular with clients. One of the reasons cited is stigma. Patients in many health facilities prefer to receive care at the health facilities because they are afraid of stigma from other community members. You know when you join a CCLAD (patient group) of ten people, all those ten people will now know your HIV status. And these are people who live in your neighborhood, in your village. Stigma is really a big challenge’. ART clinic in-charge, PUB-01
Health workers highlighted stigma as a leading barrier to patient enrollment in community DSD models. For instance, it was pointed out that the CCLAD model entailed self-forming patient groups constituted on a voluntary basis by individuals living in the same community who know each other and have found a convenient place within the community to meet.
‘As we implement these models, it is incumbent upon us to regard stigma as a key issue. Stigma is a key challenge which is still exists in our communities. This is what I have found during the on-site supervisions of DSD that I have conducted. Patients prefer to stay at the facility because of stigma with in the community’ National-level HIV program manager.
‘The problem we face is that most CCLAD groups are failing. You find that you need to be 3-6 members in a group that resides in the same location. You may find that all the six members are illiterate. They can’t read, they can’t write and none is willing to take lead and when you are a leader, you need to do some documentation. So that has been a challenge for us’ Patient FGD, PUB-04
‘Most of our clients come from hilly places they spend about 10,000 shillings ($ 2.74) to and from. So, I told them, if we form a group of 10 members, instead of each one of us spending 10,000 you can give 10,000 to one person we have selected to go pick our medicines. They accepted but I remain with that transport burden alone. My income is very little yet I have to support this group’ Patient FGD, PUB-04
Leaders of Community Client-Led ART Delivery (CCLADs) groups who pick drugs from health facilities on behalf of their members reported difficulty in identifying individual drug packages for each of their members. Delivering incorrect drug packages to their members was reported to happen in some instances as narrated in the quote below:
‘There are challenges in identifying individual drugs for members of the CCLAD patient group. I can be a group leader delivering drugs to other clients but you realize someone says ‘they have packed for so and so different ARVs, yet he takes a different regimen’ Patient FGD, PNFP-01
Health workers decried the additional workload involved in packaging and labelling ARVs drug packages for each individual member in a CCLAD group. In high-volume health facilities, CCLAD groups were said to be as many as 40 in number with an average membership of six members which reflects the packaging burden involved but also for facility-based DSD models such as the Fast-Track Drug Refill (FTDR) model. Health workers maintained that DSD implementation had introduced additional tasks and increased workloads in some respects.
‘Labelling drug packages for those on multi-month scripts is a headache. You need to indicate on the bottles that these drugs are for month number one, and this is month is for month number two and three. So, if you have 6,000 clients in DSD models that shows just how much work you have to put in packing drugs and correctly labelling them for each and every individual’ -ART clinic in-charge, PUB-01
Insufficient funding for implementing community models
A common refrain from the health workers was the insufficient funding for operationalizing community-based DSD models. Community drug pick-up points (CDDPs) were especially pointed out as examples of community models that require substantial funding to implement. Health workers mentioned the need for constant fuel for health workers to travel outside of the health facilities into the communities to monitor patients, transport for ferrying ART drug packages into communities and the difficulty of finding suitable physical space in remote communities to designate as drug pick-up points. A concern that was frequently raised by health workers was that of sustainability of community-based DSD models, such as Community Drug Distribution Points (CDDPs) which are currently heavily donor-dependent. National DSD scale-up in Uganda has depended substantially on PEPFAR funding since initial roll-out in 2017. Participants perceived facility-based DSD models as more sustainable in the event of loss of donor support. We observed a widely-held perception that community DSD models were expensive to implement and unsustainable without international assistance.
‘I think that the best DSD models should remain the facility-based ones because it is not sustainable going into these communities. You are able to deliver these medicines now just because there is donor funding but time is going to come when there is no funding’ ART clinic in-charge, PUB-02
Overall, our interviews with health workers and FGDs with patients appeared to relay the notion that setting was influential on the uptake of individual DSD models. In our sample of health facilities, patients hailing from urban settings expressed preference for facility-based individual models over community-based models.
‘There are certain unique issues in urban areas like in Kampala (capital city) people do not want to form groups, they just want to go to the facility, get their drugs and go home, or go to a point somewhere to get their drugs and then go home’ PEPFAR Implementing organization representative.
Mobility among urban clients
Health workers of case-study facilities located in urban settings reported that patients frequently changed residential addresses. The dynamic nature of their urban patients was said to impede the smooth running of self-formed patient groups (such as CCLAD) which require stable populations that reside in the same physical location for them to thrive.
‘How do you constitute the groups especially in Kampala (capital city) which is dynamic because people keep moving and frequently change residential addresses? It has been difficult’. ART clinic in-charge, PUB-01
Our focus groups revealed that HIV-related stigma was especially pronounced in urban settings and patients in case-study facilities located in urban areas expressed a reluctance to form groups with peers who lived in close physical proximity. This was raised as one of reasons why patients formed inconvenient groups of individuals (CCLAD) living in disparate locations for fear of breach of confidentiality of their HIV status with recipients of care living in the same neighborhood.
‘The CCLAD approach is not working as well as anticipated due to stigma especially in urban areas. Patients form inconvenient groups with people living in different areas because of stigma. You will find groups where one client is from Kawempe (North of the capital) forming with a client from Nakawa (East of the capital) and may be Makindye (South of the capital) and they will choose a place in the city center where they will receive their drugs’ Representative of PEPFAR implementing organization.
Participants from a case-study facility in the Ugandan capital Kampala reported that self-stigma impeded the running of community ARV pick-up points (CDDPs) and they were compelled to devise alternative distribution points through private retail pharmacy networks in Kampala.
‘What we did in Kampala in collaboration with the National Drug Authority is to just make patients pick their medicines from a nearby (retail) pharmacy because they are not interested in forming groups, they are not interested in doing anything else so they just go to a nearby pharmacy, pick their drugs and in ten minutes they are out’ PEPFAR Implementing organization representative.