Background
National DSD implementation in Uganda
Methods
Study design
Analytical framework
Study sites and sample selection
1. National-level HIV program managers | 18 |
2. District health team leaders | 24 |
3. PEPFAR ‘implementing partner’ representatives. (Local and international non-government organizations) | 11 |
4. ART clinic in-charges and staff | 23 |
5. Participants in patient focus group discussions | 48 |
PUB-01 | PUB-02 | PUB-03 | PUB-04 | PFP-01 | PNFP-01 | |
---|---|---|---|---|---|---|
Ownership-type | Public | Public | Public | Public | For-profit | Not for profit |
Level of care | Regional Referral Hospital | District Hospital | Sub-district health centre | Sub-district health centre | Clinic (HC III) | Health centre III |
Urban setting | Urban | Urban | Peri-urban | Rural | Urban | Rural |
HIV services offered | VCT, ART, PMCT | VCT, ART, PMCT | VCT, ART, PMCT | VCT, ART, PMCT | VCT, ART | VCT, ART |
Data collection
Data capture and analysis
PRINCIPLE | |
---|---|
Prolonged engagement | We spent 2–3 weeks at each of the six case-study facilities. Multiple on-site visits were spent engaging in informal discussions with ART clinic in-charges. |
Use of theory | The analytical framework by Levesque et al. (2013) which proposes a multi-level perspective on factors affecting access to health care guided our analysis of the study findings. |
Case selection | Six health facilities were purposefully selected in areas of Uganda with a relatively high HIV burden and a concentration of ART sites to enable purposive sampling. |
Sampling | We aimed to have a sample that had appropriate representation of health facility demographics in Uganda with respect to a) setting (rural/urban), b) ownership-type (public, for-profit, not-for-profit), c) Level of care (tertiary, secondary, primary). |
Multiple methods | Multiple methods were used including face-to-face interviews, focus group discussions (FGDs) and informal engagements with clinicians and ART Clinic in-charges. |
Triangulation | Case descriptions were constructed based on triangulation across multiple data sources (Interviewee data and document review). |
Negative case analysis | Emergent themes/ findings that contradicted initial assumptions were identified. |
Peer debriefing and support | Data analysis at each of the four major stages involved a team-based process involving at least three authors. |
Respondent validation | A multi-stakeholder data validation workshop was conducted at which the initial study findings were presented. Participant feedback informed the final analyses. |
Results
Individual-level factors
Internalized HIV-related stigma
‘Patients don’t want to join CCLAD 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
‘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 CDDP groups 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.
‘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.
‘Currently, facility-based models account for the biggest proportion of enrollment in DSD models. Fast- Track Drug Refills stand at 38%, Facility-Based Groups are at 9% and Community Client-Led ART Delivery are at 7%. Nevertheless, the Ministry of Health is very optimistic about seeing more utilization of community models’ National-level, HIV program manager.
‘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.
Low patient literacy of DSD models
‘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.
‘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.
‘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.
‘What we are seeing is that patients who are better off (financially) decline joining community groups such as CCLAD and CDDP 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-system factors
Health worker competence in DSD 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.
Frequent stock-outs
‘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, 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 model?’ Patient FGD, PUB, 002.
DSD not implemented in lower health facilities
‘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.
‘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
‘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.
‘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 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.
‘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
‘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.
‘I am 63 years old and I have been on ART for eleven years. Last year during a routine check they found I had both pressure (hypertension) and sugar (diabetes). Now, I have to visit the Diabetes clinic every month yet I am stable on ART and visit the HIV clinic once every three months’. Patient FGD, PUB-01.
‘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.
Community-level factors
‘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.
Community-level stigma
‘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 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.
‘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 within the community’ National-level HIV program manager.
Implementation challenges associated with community-based DSD models
‘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 ($ 2.7) 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.
‘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.
‘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
‘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.
Contextual factors
‘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
‘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.
‘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.
‘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.