Current care context for HIV

During the interviews, providers identified several specific programs considered part of differentiated care delivery for HIV patients. These included CCMDD, adherence clubs, and MomConnect, an mHealth antenatal care program with a component for Prevention of Mother to Child Transmission (PMTCT). Respondents noted that many of the programs are led or supported by collaborating non-governmental organizations (NGOs), including several PEPFAR-funded partners with a mandate to implement programs in collaboration with government clinics.

In considering past predictors of program success, providers focused on perceived program impacts as a key factor. Providers described a variety of barriers and facilitators influencing the implementation of new programs and services at the clinics. These are grouped loosely into those related to the perception of the program and its benefits, resource availability for the program, and communication about organizational roles and the functioning of the program. It was also apparent that specific barriers and facilitators were related to one another across the patient, clinic, and system levels.

Perceived program impacts

Providers cited the convenience of programs, and specifically the ability of a program to save patient time and money, as being key to that program being well received by patients. For example, fast track queues that reduced clinic wait times for appointments or medications were particularly well received. One provider mentioned that patients love the CCMDD program because it allows people to collect their medication without having to miss work or other commitments. This clear benefit to patients was noted as a motivating factor for the providers.

However, there were limits to the advantages of convenience, as reflected by comments that multiple providers made about adherence clubs. Although the clubs were created to assist with support and medication dispensing, they also had the unintended consequence of patients no longer perceiving a benefit to returning to the facility for other aspects of HIV care. This was a problem because although adherence clubs support routine medication pick-up, they also require bi-annual clinic check-up visits to assess clinical stability and extend the ART prescription. Failing to present for 6-monthly check-ups can result in the unexpected discontinuation of medication until the patient returns to the clinic. One provider also mentioned challenges with adequate club participation. At that clinic, external personnel from a collaborating NGO were travelling from a distant location to assist with the club’s management. Unfortunately, when NGO personnel would arrive at the venue, they would find only a minimal number of patients. This occurred despite the clinic and NGO agreeing to open the club on a Saturday to accommodate those with scheduling challenges. Because attendance proved so low and the program was inconvenient, the clinic discontinued it.

Another factor that impacted provider perception of programs was whether they adequately and appropriately addressed patient needs for privacy. For example, one participant shared similar experiences about the adherence clubs in her facility, saying that the clubs had been the most difficult program for the facility to implement due to the low attendance. A second participant believed that poor attendance at clubs was due in part to stigma, as explained in the following quote:

We do have clubs, but we are lacking in clubs that involve young people like children. We tried to start a group to try and target children because we have a challenge with retaining them to care, but it fell through because of parents, there is still this stigma attached. Parents who bring their children to the clubs get stigmatized that this is a group of parents with HIV positive children.

(Interview: clinic provider 1)

Despite many challenges that hinder program success, providers mentioned that programs that address widely recognized, existing problems, such as overcrowding in the clinic, tend to be more successful. Because the problem is one all providers and staff wish to solve, there is high motivation to make a potential solution a success, whether it involves implementing a new program or changes to operational guidelines. For example, one provider described the introduction of universal test and treat (UTT) as a success because clinicians could initiate every eligible patient immediately, thereby simplifying the process and reducing risks of opportunistic infections, which had previously been of concern. UTT has also reduced the number of people who test but are not linked to care – so it is of benefit to the patient and the provider.

I think it was the improvement of the guidelines. Because when you really think about it, we come a long way with the management of HIV patients, before we used to initiate people with CD4 count of 200 and guidelines improved and said we must initiate people with 350, it then went to 500, now we initiate everyone who is tested HIV positive, I think this is a success because we do not have to wait for someone to have a low CD4 count and possibly opportunistic infections… . I also think Universal Test and Treat plays an important role because if you test someone and let them go there is a possibility that they will never come back without being initiated. I think the UTT gives us better result when initiating people.

(Interview: clinic provider 6)

Programs that help decongest the clinic, such as CCMDD, have also been perceived as useful because they foster a more manageable environment that allows for patients whose acuity or need still requires services at the clinic to receive better care. One participant described how clinic decongesting reduces the risk of potential transmission of any airborne illnesses while they wait in long queues.

The advantage is that the patient does not have to sit and wait in long queues, you do not know who you could be sitting next to, the person could have TB or they can be sick you can pick up anything whilst sitting because our facility does not have ventilated areas, so in regard of that even if they are working they are to collect their medication and still go to work, where as if they are in the queue they have got to wait for their place, for blood that is still going to take a little bit longer and they might not even make it to go to work.

(Interview: clinic provider 7)

Providers also mentioned that patient buy-in for a new program was enhanced when patients saw familiar people taking part in it. Seeing someone they recognize helps to facilitate trust and illustrates the potential benefits of a program. One participant mentioned specifically that peer and adult engagement was especially valuable for programs serving young people, as seeing the involvement of others in the community helped foster a safe environment and potential roles models:

It was successful because it helped show the young children that they are not a alone, there’s a lot of them on treatment, they see familiar faces of people they go to school with and so on, and they also see that these people are living a normal life and are alright and don’t have any problems, even younger children who are 9 or 10 years of age who haven’t understood their condition well realize that you can take this treatment and live a normal life, they see the older people here who are taking this and have been for a while.

(Interview: clinic provider 3)

As a result, programs that the providers view as benefitting patients and patient care outcomes and programs that facilitate the providers’ work or workflow were most well received.

Resource availability

There was wide agreement that shortages of space in clinics poses substantive challenges because of the inability to accommodate all patients who visit the clinic. For example, mothers of children living with HIV all use the same dedicated room on a certain day. This made some mothers uncomfortable due to the gossip associated with walking into that room on the “HIV” day. One participant mentioned that in the clinic where she works, there are patients who hold their adherence club meetings in the medication storage area because there is no other space for them to use.

……they [patients] don’t have places where they can sit and have meetings, and they should have meetings. An adherence club is not a pickup point, people go there to support one another, these people don’t have a place to sit, they have no space available to be utilized for their meetings and they end up going to communities. They also need to get a mobile facility.

(Interview: clinic provider 5)

Staff shortages were also raised as a key resource challenge to successful implementation of HIV programs. Providers described themselves as being overworked by the introduction of new programs, which occurs frequently. The challenges are exacerbated by temporary staffing shortages, such as when staff are on maternity leave. One provider separately noted that staff shortages were also due in part to certain positions being frozen after a resignation.

There will always be challenges whenever there’s something new that’s implemented, it will come with more work for the staff where you find that the staff number is not being increased so the workload increases for the staff of that facility. Sometimes you might see that when we have new things, new guidelines or new programs that are being implemented some of the old ones fall back because we are focusing on this new thing, and we tend to disregard [the old].

(Interview: clinic provider 4)

Providers also mentioned challenges created by paper-based management systems. For patients this can have a very real impact, as a misplaced file can lead to a prescription not arriving at a CCMDD site in time for the patient to refill their medications. Others mentioned that even when and where electronic record technology is available (MomConnect), system failures sometimes compel a return to paper-based record keeping.

Lines of authority and communication

There were numerous challenges to clinic implementation of HIV programming that were specific to clear lines of authority, roles and responsibilities, and communication. This poor communication was identified at all levels, including patient, provider, and health system. At the patient level, for example, providers had trouble with their abilities to communicate and support patients, which arose in a context of a patient not being comfortable disclosing to family. Clinic personnel felt able to offer only limited assistance because of the precautions required to avoid accidental disclosure when reaching out to patients and/or their families. These challenges were summarized well by one participant:

Some people haven’t even disclosed to their families. So, if the family sends that person to do something on the day where they should pick up their treatment, they cannot say to the family I need to go pick up my treatment. They just go where they are sent and end up missing their pickup. Some have not disclosed even to their partners, you find that someone is visiting their partner and they cannot go to pick up their medication because they do not know what to tell their partner about where they are going.

(Interview: Male district official 1)

Communication issues were not confined to patients, with similar challenges sometimes emerging between provider and NGO staff at the clinic level. Providers agreed that NGO support in the clinics is essential to improving HIV care. Providers noted that NGOs regularly provide counsellors to assist in facilities, and NGO staff visit facilities to provide additional clinical and monitoring support. According to the providers, NGOs also aid the clinics by overseeing adherence clubs in communities with high rates of HIV infection and assist with out-of-facility HIV care, including home-based HIV prevention and treatment. One participant described how this help has led to successes with adherence clubs.

We have adherence clubs; it was introduced to us through [name of NGO], they want patients who are HIV positive who are on regimen 1 and are stable patients and the patients need to be able to come collect their own medicine, the purpose of clubs is that patients are able to come collect their medicine and leave quickly without having to sit in the queues for the whole day, which unfortunately does seem to happen. What made it successful is that the guy who’s doing it is pretty dynamic, he’s pretty keen and he pushes hard, he’s got 24 clubs I think or more that he’s managing. (Interview: clinic provider 8).

Providers also described the role NGOs play in assisting clinics in retaining clients in care. NGOs help track people who have missed appointments or have defaulted on treatment and support them to return and remain in care.

I would say it is successful because before we used to lose a lot of patients. But since [name of NGO] started here, they can contact people to ask them why they did not come for their appointments, and they would write down […appointment reminders]. What they do also, they make sure that UTT is implemented, when you test someone, but they do not want to be initiated so they leave their contact details. So, the [name of NGO] team makes sure they contact that person to find out if they are ready to be initiated.

(Interview: clinic provider 9)

While providers generally described the valuable support from NGOs, they also noted that there were systems-level challenges in working with these external partners, particularly when miscommunication occurs. For example, sometimes NGOs offer incentives when conducting HIV testing but fail to coordinate with the clinics. As a result, people already in care take up this service because they want the incentive while continuing to return to the clinic for care. Providers also spoke about how the implementing partners responsible for the CCMDD program sometimes create challenges. For example, in some cases, only a subset of a client’s total medication needs may be available through an NGO-run CCMDD program. The client is then forced to return to the clinic and request clinic staff to repack and supply them with their medication.

Two providers mentioned communication failures with NGOs related to community testing, noting that NGOs were conducting testing in the communities but that one was not giving the patients their results.

They [referring to the NGO] would go around testing people from 12 to 25 years old then they would test them and not give them back their results and they would have to come back to the clinic to get their results, bear in mind these were the kids, we didn’t have a clear understanding, we weren’t adequately told about everything and we didn’t know how they were testing these young children, all we knew was that they were taking blood samples, when the young children came to fetch their results it just indicated if they were positive or not in the file, one of them said that they were being tested for STIs so we also ended up confused as to what was happening, and they never came back to inform us on what exactly they were testing.

(Interview: clinic provider 3).

Providers described how the lack of understanding of the local community context can also be a problem when working with NGOs. One participant spoke about an NGO that wanted to create a clinic booking system for patients.

The one thing that they want us to do is have a booking system, whereby you book patients to come and if they don’t come then you phone them then you check why they didn’t come, the problem we have is that patients don’t stick to their bookings, you can tell them to come to that date and they will come a week or 2 later, the problem is that a lot of them work in the informal sector, so they have to take time off, and they don’t know when they going to be off, you can’t plan appointments.

(Interview: clinic provider 8)