Mechanisms such as pharmacy pickup and clinic-based fast tracks were mentioned as possibly reducing stigma by allowing individuals to pick up medications at their convenience, thus avoiding the stigma that can occur with frequent facility visits. Furthermore, the early shift to including medications for other chronic conditions at pickup points emerged in an effort to reduce HIV-related stigma associated with these models. Many interviewees mentioned decreases in stigma for clients as treatment access expanded and HIV was increasingly perceived as a chronic condition (Table 3).
Nurses and other HCP stated that having multiple sites/means to collect ART was part of the overall shift toward client-centered care. Many participants spoke about the different options they offered clients, and they also noted that flexible program approaches could be adapted to the context of the region/province (Table 3). Overall, program implementers and HCP appreciated flexibility and reported that it increased the appeal of these models for clients.
Policy Related to Leadership and Guidance
At the health services, policy, and systems levels, the 2016 NDoH Adherence Guidelines were codified, which increased client options and flexibility while standardizing key criteria, such as eligibility and start date, across all options. In addition to creating new policies with clear program guidance, the NDoH provided strong leadership and support for transfers to new models. Respondents stated that the guidance was an enabler in that it promoted flexibility in each model. Many interviewees reported that having clear training manuals and standard operating procedures facilitated changes and was an enabler to adopting new and scaling up existing ART delivery mechanisms (Table 3). Another critical enabler was to start in pilot provinces and finalize procedures before national scale-up.
Monitoring targets were set by NDoH; however, many program implementers mentioned that the targets were confusing and unrealistic, noting that targets did not adequately consider the realities of moving clients to new systems without enough time, funds, and other resources for clients to understand and adopt new ART delivery mechanisms.
Linkage to Health Services
Respondents cited that one of the main perceived benefits to clients being in an adherence club, which is a group of patients who meet regularly to pick up their medications without having to attend a full clinic appointment, was continued linkage to the facility. Many groups included regular symptom screenings and weight checks, among their activities, allowing for quick referrals for follow-up (Table 3). Given the importance of maintaining a linkage between the client and the health system, some respondents expressed their concern that delivery models might not provide a strong enough linkage to formal care, potentially leading to symptoms going unnoticed or risking a client's retention. Many cautioned that some of these models, such as pharmacy pickup, could pull clients too far out of the facility, potentially putting them at the risk for default and not achieving viral suppression.
Many respondents described a lack of key resources and unanticipated costs as barriers after implementation. Many of the costs were low but still presented challenges because they had not been accounted for in the budget. Respondents mentioned a lack of space for either client meetings or proper storage of prepacked medications. Funding challenges were mentioned with particular concern in the context of rapid scale-up. Additionally, each province had different systems and infrastructure capacities, and many participants noted that starting new services in rural or other capacity-challenged settings could be difficult (Table 3).
Flexibility and time savings were repeatedly discussed as enablers at the client and health services levels. Shorter wait times were mentioned frequently, as beneficial for clients, who spent less time at the clinic, and also for nurses who could spend more time with higher-need clients, a finding consistent with studies assessing enablers to ART retention in South Africa (Bedelu, Ford, Hilderbrand, & Reuter, 2007; Decroo et al., 2013; Grimsrud, Sharp, Kalombo, Bekker, & Myer, 2015; Mukumbang, van Belle, Marchal, & van Wyk, 2016). Program implementers and HCP felt that the written policy, which included clear guidance, was beneficial. In particular, policies that allowed clients to access medication via multiple options reinforced client choice and empowerment, and ultimately allowed for medication to be delivered closer to where clients worked and lived. Model flexibility was directly linked to policy creation/guidance, but it could lead to higher costs related to human resources needs that have been associated with delivering more customized services to increasing client numbers (Bango, Ashmore, Wilkinson, van Cutsem, & Cleary, 2016). Despite this, giving options to clients, with the ability to move within a system, were overwhelmingly viewed as positive by respondents. Additionally, strong guidance and eligibility requirements at the national policy level provided scaffolding for standardization in many contexts (e.g., rural, urban). Key enablers included the importance of having inspired leadership, sound management and guidance, and transparent governance and coordination.
Many respondents highlighted the need for standards and consistency with regard to adherence clubs, including regular facilitators. Facilitators were an important link to further care for the client. Such linkages continuously emerged as enablers affecting the model's success, whereas the lack of these linkages was consistently reported as a barrier. Linkages may increase retention in care critical to plan for because more clients are moved into these models, which is consistent with findings of clients enrolled in adherence clubs in Khayelitsha, South Africa, who reported fewer missed visits (Bango et al., 2016). Lack of resources (financial, human, space) also emerged as a barrier at the health services and systems levels. Participants reported difficulty meeting unanticipated challenges that emerged after implementation, such as finding suitable meeting spaces. Furthermore, there was some apprehension about reaching targets with available resources and many respondents acknowledged that new resources might be needed to support scale-up. These factors should be seriously considered as scale-up continues. Another critical finding was the need to ensure time for clients and providers to see the value of new dispensing and delivery approaches rather than promoting the process too quickly, which could be a barrier to change.
Finally, stigma emerged as both a barrier and enabler. HCP repeatedly reported that some clients had a real and pervasive fear of involuntary disclosure in the adherence club models, which was concerning, as stigma is a known threat to retention and adherence (Coetzee, Kagee, & Vermeulen, 2011; Ware et al., 2013). Consistent with previous studies, certain delivery methods (pharmacy pickup, clinic-based fast tracks) were mentioned as potentially stigma reducing, given that they reduced time spent collecting ART and the frequency of visits. As a result, clients felt that it was less likely for them to be seen at the clinic or for people to notice their frequent visits to the clinic (Decroo et al., 2011; Kwarisiima et al., 2017; Mabirizi, Embrey, Saleeb, & Aboagye-Nyame, 2014; Macdonald, Verster, & Baggaley, 2017). Club participation did not require disclosure, but it was reported that clients thought their HIV status disclosure was a necessity for joining. Such perceptions have the potential to be off-putting and to decrease client participation. Indeed, some HCP reported that clients attended adherence clubs outside of their own communities to avoid unwanted public disclosure of their status, which was consistent with findings from a similar study in South Africa (Kagee, Nothling, & Coetzee, 2012). HCP who had less interaction with clients were more likely to say that stigma was not an issue and that as new models of ART delivery emerged, stigma concerns could eventually be eradicated. However, these opinions contrasted with those of nurses with frequent interaction with clients, who noted that many community members still perceived that alternative delivery methods were for PLWH only, which might keep PLWH from participating. Respondents reported that some clients attempted to avoid risks of unwanted disclosure at the community level by staying in their facility-based adherence clubs rather than moving to community-based groups or by joining community adherence groups further away from their residences.
Interestingly, our findings were among the first to emerge showing evidence of the potential negative impact of stigma in community delivery models, which was reinforced by findings in Malawi (Pellechia et al., 2017). To the best of our knowledge, these emerging findings may be attributed to the reality that South Africa is more advanced in nationalizing, changing, and integrating differentiated care into the health service delivery systems, resulting in new lessons (Dudhia & Kagee, 2015; Magadzire et al., 2015; Rasschaert et al., 2014). Recent data from Malawi reinforced the findings from South Africa and noted that community adherence clubs might have little impact on reducing HIV-related stigma (Pellecchia et al., 2017). Specific service delivery and policy recommendations are shown in Table 4.
Strengths and Limitations
One of the primary strengths of our evaluation was the use of multiple data sources including focus group discussions and semistructured interviews, involving program implementers and HCP with experience introducing new treatment methods. Key limitations included the lack of interviews with clients and that participants were limited to USAID-funded organizations, which were beyond the scope of this evaluation. The utilization of snowball sampling that emerged from the initial list of interviewees allowed the study to take place with a limited number of initial participants, and further study is needed using quantitative methods.
Future studies should allow for randomization and include clients' voices to increase the relevance of the findings about client experiences and gain better understandings of how models could be modified to increase demand and meet client needs. Subsequent evaluations could include groups implementing differentiated ART approaches that do not receive USAID funding to identify potentially useful models that could successfully reach clients in unique contexts and populations.
Ultimately, multiple methods of ART delivery are needed to cover the millions of PLWH who should be on treatment in South Africa and globally. Our findings can inform strategies to facilitate successful ART delivery scale-up at the provider, facility, and policy levels (Table 4). Creating and strengthening models that cater to the needs and desires of clients will help transition HIV care and treatment from a system of long-term care managed by health workers to one that is person centered, with clients who are resourced and empowered to manage their own treatment regimens, achieve better health outcomes, and lead longer, healthier lives. The innovative efforts in South Africa have yielded robust findings that may inform other contexts and settings, ultimately laying a foundation of learning to inform emerging models of differentiated care.
The authors report no real or perceived vested interests related to this article that could be construed as a conflict of interest.
- Differentiated HIV treatment delivery models are critical to achieve HIV epidemic control.
- Delivery models that are person centered can empower clients to manage treatment regimens, achieve better health outcomes, and lead longer, healthier lives.
- Differentiated models must consider and address stigma reduction prior to implementation.
- Findings on differentiated ART delivery models can inform other settings and provide a foundation for sustained epidemic control.
This study was funded by the generous support of the American people through the President's Emergency Plan for AIDS Relief (PEPFAR) with the U.S. Agency for International Development (USAID) under the terms of the cooperative agreement, Strengthening High Impact Interventions for an AIDS-free Generation, number AID-OAA-A-14-00046. The contents are the responsibility of AIDSFree and do not necessarily reflect the views of USAID, PEPFAR, or the U.S. Government. The authors would like to thank the following individuals and organizations: Ugochukwu Amanyeiwe, Nida Parks, Sthembile Gombarume, Catherine Brokenshire-Scott, Refilwe Sello, AgriAids, ANOVA, BroadReach, Foundation for Professional Development, Hospice and Palliative Care Association of South Africa, Kheth'Impilo, MatCH, Project Last Mile, Republic of South Africa Department of Health, Right to Care, USAID|South Africa, Wikoppen Health and Welfare Centre, and Wits Reproductive Health and HIV Institute.
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antiretroviral therapy differentiation; community ART programs; HIV treatment; South Africa; stigma
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