The findings emerging from this study are presented in two parts. In the first part we present findings relating to changes in the range of HIV services offered post-transition in case-study facilities. In the second part we present patients’ and HIV service managers’ perceptions of changes in the quality of HIV services post-transition.
Changes in the range of HIV services offered
While core HIV services (e.g. testing, treatment) by case-study facilities which offered them prior to transition were sustained, we found that more specialist services as well as various supportive services offered by these facilities often ceased. The reported ‘narrowing’ in the HIV services offered included the loss of specialized pediatric HIV services, the discontinuation of “mentor mother” programs, the winding down of nutrition support to HIV clients and the end of free HIV testing services at a for-profit clinic.
Specialized pediatric HIV services ceased
Our focus groups (FGDs) with patients revealed that specialized pediatric ART services ceased at select case-study facilities (PUB-002, PUB-003, and PUB-004). Prior to transition, facilities providing ART services separated pediatric clients from adults on ART clinic days. During on-site visits to PUB-002 and PUB-003 by investigators, it was observed that children were mixed with adults in the patients’ waiting area and in the queue to see clinicians. This was confirmed in interviews with informants.
‘We used to have specialized HIV services for teenagers and adolescents but now we incorporate them with the adult services because the IP (implementing organization) closed’ [ART clinic in-charge, PUB-003]
Interviewees reported that the PEPFAR implementing organizations provided incentives to care takers of pediatric patients to improve their adherence by providing them with transport monies for attending appointments for review as well as receiving nutrition support such as milk and soya all of which were not sustained post-transition.
Discontinued ‘mentor mother’ adherence support program
The ‘mentor mother’ model was discontinued at PUB 002 and PUB 003. ‘Mentor mothers’ were model female HIV clients who were recruited as informal health workers and paid a monthly allowance to offer adherence support to care-takers of children enrolled on ART as well HIV positive expectant mothers for prevention of mother to child transmission (PMTCT). Mentor mothers traced clients who were lost-to- follow-up within their communities. Monetary allowances to ‘mentor mothers’ were paid directly by the PEPFAR implementing organization. Once the payment of allowances ceased, ‘mentor mothers’ could no longer afford to spend prolonged periods at ART clinics providing adherence support.
‘These mentor mothers some of them stopped coming. We could not do follow-ups so it created a big gap in our services ‘[Health worker, PUB-002].
‘Mentor mothers were attached to pregnant mothers and children below 18 months. They would counsel them, make sure they take their medication and encourage them with counselling. Clients would come [to the clinic] because of their love and care’ [ART clinic in-charge, PUB-003]
The loss of funding for the ‘mentor mother’ program at the facility was described as a loss of a vital link to the community because it undermined the capacity of health facilities to do client follow-up and adherence support for their pediatric and adolescent clients.
‘The challenge came with mentor mothers. The mothers would do follow-up and that’s why you find that some children, their viral loads have not been suppressed. Once they disappear they take time to come back’ [Health worker, PUB-002].
Loss of nutrition support to HIV clients
From the focus group discussions (FGDs) with patients at three sub-district health centres (PUB-002 PUB-003, PUB-004) it emerged that the nutrition support provided to patients during ART clinic days was discontinued after donor transition. It was reported that nutrition support was part of the core package of care offered by implementing organizations to health facilities in their regions of operation. Nutrition support was thought by respondents to be critical due to ART medication which increased appetite, and the absence of adequate food, which led to severe hunger in patients. To enhance adherence to treatment, food support was provided such as maize porridge served to clients attending the ART clinic as well as maize flour provided to patients for consumption at home.
‘The implementing partner used to send the sick very many things. It used to send us milk, baby soya and other things which we do not see any more’ [Patient FGD, PUB-002].
Most of the case-study facilities (such as PUB 002) were based in areas which were prone to food insecurity and catered to the majority rural poor who live off the land. Basic meals were not a guarantee in these settings and yet adherence to ART demanded regular food in-take.
‘We are facing famine in this area. You see a client has lost 10 kilograms. We used to have nutrition support. We used to have a nutritionist from within the hospital. Clients could get food from here. This was affected by transition’ [Patient FGD, PUB-002]
Free HIV testing services ended at a for-profit clinic
In-depth interviews with health workers and the in-charge of a case-study for-profit clinic (PFP-001) indicated that PEPFAR implementing organizations provided funding that enabled them to provide free HIV testing services for the densely populated slum area surrounding the clinic. The support included the provision of free HIV test kits (and related commodities) as well as monetary allowances to clinic staff during field outreaches for demand-creation campaigns among most-at-risk populations such as sex workers and boda boda (motor cycle taxi) riders living within the community.
‘The implementing organization used to support us in HIV Counseling and Testing (HTC) but that ended in 2015. They provided us with inputs necessary for HTC services such as HIV test kits and laboratory reagents, monetary allowances for our staff engaged in project activities such as outreaches. [Facility In-charge, PFP-001]
The loss of PEPFAR support was reported to have had far-reaching effects on HIV testing rates at the clinic (PFP-001) which was compelled to introduce a fee for HIV tests. Both health workers and patients concurred that HIV testing rates had declined significantly after transition. Besides the effects of introducing a fee for paying for routine HIV tests at PF-001, HIV testing rates were also reported to have declined remarkably post-transition due to the discontinuation of community-based outreach activities for HIV testing which had been key in combating the stigma surrounding HIV testing.
‘During the time (PEPFAR Implementing organization) supported us, our HIV testing services were free of charge. In a day we could get 400 or 500 clients. On peak days, we could even get 1,000 clients. Now they are down to 100’ [In-charge, PFP-001].
‘I used to look for the people (community outreach). Now I wait for the people. But how many people come here? They hardly turn up. They only do HIV tests when they have come for malaria treatment or some other ailment. We only convince those who have come to the clinic to do HIV tests. There is a very, very big difference between now and the time we had PEPFAR support. The attendance these days is very poor’. [Health worker, PFP-001].
The sense that the loss of PEPFAR support through transition had contributed considerably to a decline in HIV testing rates at this private-for-profit facility was corroborated by representatives at the district level:
‘They were affected (PFP-001). The turn up at the clinic reduces, the total number of clients they serve reduces and they cannot do outreaches anymore yet VCT (voluntary counselling and testing) is done at outreach posts because it is difficult for someone to wake up and go to a clinic for an (HIV) test but when they find you (clients) in your comfort zone chances of getting tested are higher’ [Representative of PEPFAR Implementing organization, PFP-001]
Perceptions of Change in the Quality of HIV services offered
Patients reported changes in the quality of HIV care offered in some case-study facilities following transition. In comparing the focus group discussions held in May 2017 (round 1) and those conducted six months later in November 2017, patients at four of the six case-study facilities described significant variations in the quality of HIV services offered at PUB-01, PUB-02, PUB-03 and PUB-04 when compared to the pre-transition phase. Both patients’ and health workers’ perceived a decline in the quality of HIV services post-transition. The specific aspects cited include the notion that ART medicines stock-outs had become more frequent (PUB-02, PUB-03, PUB-04), perceived increases in out-of-pocket expenditures on HIV care (PFP-01, PUB-03) a reduction in basic supplies and commodities for handling patients and a decline in patient-centric and holistic HIV care (PUB-02, PUB-03, PUB-04).
Perceived changes in patient-centered HIV care
In the focus groups, patients described enduring longer waiting times in the second round compared to the previous one due to what was described as a less efficient patient flow system post-transition which, in part, was attributed to a reduction in staffing especially the loss of the supportive roles played by ‘expert patients’ in managing triage systems at ART-providing facilities (PUB-002, PUB-003). Patient flow management in ART clinics at public facilities (PUB-002, PUB-003) was described as less organized compared to the pre-transition period and that the patient waiting area did not have a tent or a protective shade in the patient waiting areas. Patients were unequivocal in relaying the notion of a change in the general quality of HIV care.
‘The implementing partner (IP) used to provide patient files but we don’t have them now. So (PUB-002) has to buy them so that our information is organized. The IP would support sweeping of the rooms where we sit, provide these dusters, provide these seats because (PUB-002) hadn’t bought theirs so now that is the gap. We used to sit under the IP’s tent because (PUB-002) doesn’t have any so we sit in the corridor, we sit under the hot sun’ [Patient FGD, PUB-002].
The sense that the quality of HIV services had changed post-transition was a perception held not only by patients but across a broad spectrum of informants including the health workers themselves.
‘Services have continued but at a little lower level than they would have if support had continued. The way we do things is not the way we used to do things. The implementing organization had high quality, but now?’ [Health worker, PUB-002].
‘The implementing partner helped us to bring services to a different level and I know as time goes on staff will decline and services will go down’ [Facility in-charge, PUB-003].
More frequent stock outs of antiretroviral medicines
Across four case-study facilities, based on interviews with facility personnel and focus groups with patients, it emerged that stock outs of anti-retroviral medicines had become more frequent compared to the pre-transition period (PUB-001; PUB-002; PUB-003 and PUB-004).
‘Sometimes we get stock outs of ARVs especially second-line [regimens]. This this did not happen because back in the days of [name of implementing organization] stock was always provided on time’ [Patient FGD, PUB-001]
The shortage of pediatric ARV drugs was also frequently cited in three (of the six) case-study facilities (PUB-002, PUB-003-PUB-004) as was the shortage of septrin (cotrimaxazole).
‘When we were still with those people [name of implementing organization], they would provide ARVs for children but now it’s out of stock’ Facility in-charge, PUB-002.
When we probed interviewees on why stock-outs had become more frequent after transition, the District Health Officers and facility in-charges described the kind of support PEPFAR implementing organizations (IPs) offered in managing HIV commodities supply chains. This included assigning IP personnel to the task of ensuring sufficient stock of HIV commodities across all health facilities within sub-regions under their purview. The IPs maintained emergency stocks of commodities, which they drew upon during stock-out events. IP staff were also instrumental in redistributing HIV commodities across health facilities such as taking excess stock from one health facility and distributing it to another experiencing shortage. These efforts were supported with a dedicated transport budget for fuel and vehicles for the purpose.
‘The implementing partner used to support us to re-distribute some of these supplies from other districts where they had excess’ [District Health Team leader, PUB-002].
‘The IP would come in during emergencies of stock outs. They would fill gaps when NMS (National Medical Stores) supplied less stock than we needed and they would fill the gap in between the NMS supply cycle’ [ART clinic in-charge, PUB-001].
The additional personnel recruited by PEPFAR to manage HIV commodities supply chains and the transport costs provided for stock re-distribution by PEPFAR IPs were support mechanisms that were not sustained by the case-study health facilities after transition. Although ordinarily districts in Uganda retain overall responsibility for social services provision, interviewees widely perceived districts as cash-strapped and pre-occupied with basic functionality as sub-national units. This was especially the case for new districts, recently formed through the government’s rapid decentralization efforts. The majority of facilities in our sample were located in districts created after 2014, and therefore several of them experienced challenges related to the establishment of new districts.
‘We have been supporting the district to play its role. But even the district has challenges. It’s a new district and still has some challenges to overcome. We support the district to do routine supervision of the health sector. They need fuel. You have to send a car with fuel and a driver to move them about’ [Representative, implementing organization, PUB-002]
‘HIV services cannot work without donor support. The district has no funding to support HIV activities. When you look at the budget of the district, it is very small. It cannot support HIV activities.’ [District Health Team member, PUB-003]
From the interviews with facility personnel and representatives of PEPFAR implementing organizations it emerged that districts did not provide any significant funding to replace PEPFAR support post-transition although this was the anticipated action for districts following transition.
‘The facility budget has not been adjusted to respond to the problems (transition). Even just allocating one million shillings ($270) in a quarter can do something but that hasn’t happened so they just left them there (PUB-001)’ [Representative, PEPFAR implementing organization, PUB-003].
‘I don’t know how to describe our district but our district believes health is well supported and they don’t put any money in health at all. That has been my major quarrel with them. Whatever is got from (district) revenue is used for other things’ [Facility in-charge, PUB-002].
Of the six districts, one district was reported to have stepped up when the PEPFAR contract with the implementing organization supporting PUB-003 elapsed. This relatively well-established district in Eastern Uganda (formed prior to district splitting in 2014) provided fuel for transporting laboratory samples from the ART clinic to a regional lab hub in the region as well as becoming more engaged in on-site supervision at PUB-003.
Transition effects on basic supplies and commodities
Health workers associated the loss of PEPFAR support with a reduction in the stock of basic supplies available for routine service delivery. The shortage of syringes and gloves was frequently mentioned by health workers across case-study facilities.
‘We used to be supplied with things like gloves and syringes and if there were no syringes in OPD (outpatients’ department) or maternity, we would supply those units with syringes and gloves. But right now the patient can even convulse to death without a syringe’ [Health worker, PUB-002].
It emerged from the interviews with facility personnel that the PEPFAR implementing organizations periodically supplied health facilities with basic supplies (such as gloves and syringes). Although these were primarily meant for HIV services such as in the case of commodities for HIV testing, health workers frequently utilized these same supplies for routine non-HIV services owing to the resource-limited settings in which they operated.
‘We were receiving supplies for SMC (Safe Male Circumcision). A lot of them…we could use the excess of these supplies in other departments. This facility used not to lack gloves. Because in the (HIV test) kits there were excess gloves. So we would give then to other departments which wanted them. Cotton and gauze would go to maternity (section)’ [ART clinic in-charge, PUB-003].