Perspectives of people living with HIV and health workers about a point-of-care adherence assay: a qualitative study on acceptability.

Current antiretroviral therapy (ART) adherence monitoring is premised on patients' self-reported adherence behaviour (prone to recall error) and verified by blood viral load measurement (which can delay results). A newly developed Urine Tenofovir Rapid Assay (UTRA) assesses tenofovir in urine at point-of-care and is a novel tool to test and immediately respond to adherence levels of people living with HIV (PLHIV). We explored PLHIV and health workers' initial perceptions about integrating the UTRA into routine medical care for adherence support. We conducted a series of once-off in-depth qualitative interviews with PLHIV (n = 25) and health workers (n = 5) at a primary care health facility in Cape Town, South Africa. Data analysis involved descriptive summaries of key emergent themes with illustrative case examples. We applied a deductive, outcomes-driven analytic approach to the summaries using the Implementation Outcomes Framework proffered by Proctor et al. (2011). The three relevant concepts from this framework that guided our evaluation were: acceptability, appropriateness, and feasibility. We found positive perceptions about the UTRA from many PLHIV and health worker participants. Many PLHIV reported that the immediate results offered by the UTRA could enable them to have constructive discussions with health workers on how to resolve adherence challenges in real-time. Few PLHIV reported concerns that drinking alcohol could affect their UTRA results. Many health workers reported that the UTRA could help them identify patients at risk of treatment failure and immediately intervene through counselling, though some relayed that they would support the UTRA's implementation if more staff members could be added in their busy facility. Overall, these findings show that the UTRA was widely perceived to be acceptable and actionable by many PLHIV and health workers in the study.

Understanding health worker data use in a South African antiretroviral therapy register.

OBJECTIVE: To evaluate how electronic data management systems affect data use practices in antiretroviral therapy (ART) programs within local health districts, and individual health facilities. METHODS: We used a data quality audit to establish a baseline of the quality of data in the electronic register alongside in-depth interviews with health workers and managers, to understand perceptions of data quality, data use by facility staff and challenges affecting data use. RESULTS: The findings provide a four-level continuum of data use that can be applied to other settings and recommendations for optimising facility-level data use. CONCLUSION: By defining four levels of data use our findings suggest the potential to encourage a structured process of moving from passive data use, to more active and engaged data use, where data could be used to anticipate patient behaviour and link that behaviour to differentiated care plans.

A scoping review of patient-centred tuberculosis care interventions: Gaps and opportunities.

Tuberculosis (TB) is a leading cause of death globally. In 2015, the World Health Organization hailed patient-centred care as the first of three pillars in the End TB strategy. Few examples of how to deliver patient-centred care in TB programmes exist in practice; TB control efforts have historically prioritised health systems structures and processes, with little consideration for the experiences of people affected by TB. We aimed to describe how patient-centred care interventions have been implemented for TB, highlighting gaps and opportunities. We conducted a scoping review of the published peer-reviewed research literature and grey literature on patient-centred TB care interventions between January 2005 and March 2020. We found limited information on implementing patient-centred care for TB programmes (13 research articles, 7 project reports, and 19 conference abstracts). Patient-centred TB care was implemented primarily as a means to improve adherence, reduce loss to follow-up, and improve treatment outcomes. Interventions focused on education and information for people affected by TB, and psychosocial, and socioeconomic support. Few patient-centred TB care interventions focused on screening, diagnosis, or treatment initiation. Patient-centred TB care has to go beyond programmatic improvements and requires recognition of the diverse needs of people affected by TB to provide holistic care in all aspects of TB prevention, care, and treatment.

Analysing interventions designed to reduce tuberculosis-related stigma: A scoping review.

Stigma is a critical barrier for TB care delivery; yet data on stigma reduction interventions is limited. This review maps the available literature on TB stigma reduction interventions, using the Health Stigma and Discrimination framework and an implementation analysis to identify research gaps and inform intervention design. Using search terms for TB and stigma, we systematically searched PubMed, EMBASE and Web of Science. Two independent reviewers screened all abstracts, full-texts, extracted data, conducted a quality assessment, and assessed implementation. Results were categorized by socio-ecological level, then sub-categorized by the stigma driver or manifestation targeted. After screening 1865 articles, we extracted data from nine. Three studies were implemented at the individual and interpersonal level using a combination of TB clubs and interpersonal support to target internal and anticipated stigma among persons with TB. Two studies were implemented at the interpersonal level using counselling or a video based informational tool delivered to households to reduce stigma drivers and manifestations. Three studies were implemented at the organizational level, targeting drivers of stigma among healthcare workers (HW) and enacted stigma among HWs. One study was implemented at the community level using an educational campaign for community members. Stakeholder consultation emphasized the importance of policy level interventions and education on the universality of risk to destigmatize TB. Review findings suggest that internal and anticipated TB stigma may be addressed effectively with interventions targeted towards individuals using counselling or support groups. In contrast, enacted TB stigma may be better addressed with information-based interventions implemented at the organizational or community level. Policy level interventions were absent but identified as critical by stakeholders. Implementation barriers included the lack of high-quality training and integration with mental health services. Three key gaps must be addressed in future research: consistent stigma definitions, standardized stigma measurement, and measurement of implementation outcomes.

"It Stays Between Us": Managing Comorbidities and Public/Private Dichotomies in HPTN071 (POPART) Trial Communities.

In contexts of scarcity, managing comorbidities is a complex process, shaped by divergent understandings of causes, prognoses, and social meanings of illness. Drawing on research with one young South African woman living with HIV and epilepsy, and 13 other people with comorbidities, we describe how concepts of "public" and "private" shape the management of co-morbid conditions. Despite narratives of HIV "normalization," participants labored to keep their HIV status private, while sharing other illness experiences more publicly. We challenge simple dichotomies between public and private spheres and emphasize the need for more fluid understandings of how people negotiate social space.

Implementing 'universal' access to antiretroviral treatment in South Africa: a scoping review on research priorities.

'Universal' access to antiretroviral treatment (ART) has become the global standard for treating people living with HIV and achieving epidemic control; yet, findings from numerous 'test and treat' trials and implementation studies in sub-Saharan Africa suggest that bringing 'universal' access to ART to scale is more complex than anticipated. Using South Africa as a case example, we describe the research priorities and foci in the literature on expanded ART access. To do so, we adapted Arksey and O'Malley's six-stage scoping review framework to describe the peer-reviewed literature and opinion pieces on expanding access to ART in South Africa between 2000 and 2017. Data collection included systematic searches of two databases and hand-searching of a sub-sample of reference lists. We used an adapted socio-ecological thematic framework to categorize data according to where it located the challenges and opportunities of expanded ART eligibility: individual/client, health worker-client relationship, clinic/community context, health systems infrastructure and/or policy context. We included 194 research articles and 23 opinion pieces, of 1512 identified, addressing expanded ART access in South Africa. The peer-reviewed literature focused on the individual and health systems infrastructure; opinion pieces focused on changing roles of individuals, communities and health services implementers. We contextualized our findings through a consultative process with a group of researchers, HIV clinicians and programme managers to consider critical knowledge gaps. Unlike the published literature, the consultative process offered particular insights into the importance of researching and intervening in the relational aspects of HIV service delivery as South Africa's HIV programme expands. An overwhelming focus on individual and health systems infrastructure factors in the published literature on expanded ART access in South Africa may skew understanding of HIV programme shortfalls away from the relational aspects of HIV services delivery and delay progress with finding ways to leverage non-medical modalities for achieving HIV epidemic control.

Transition to an in-facility electronic Tuberculosis register: Lessons from a South African pilot project.

BACKGROUND: South Africa has one of the highest incidences of Tuberculosis (TB) globally. High co-morbid HIV prevalence complicates TB management and treatment outcomes. Growing evidence suggests that integrating the TB and HIV programmes will improve the overall results. OBJECTIVES: To describe how TB programme staff at various levels of the South African health system responded to the transition from a paper-based to an electronic register of TB data integrated with HIV programme data. METHOD: Three primary health service facilities in the Cape Winelands district, Western Cape province, South Africa served as pilot sites for implementation. Semi-structured interviews were conducted with 21 TB programme staff purposively selected at facility, sub-district, district and provincial levels of the health system, based on their involvement in implementing electronic TB data. An objective-driven thematic frame was used to analyse the data. RESULTS: Fears about the transition included reductions in data quality, changes to the status quo and a lack of computer literacy. Participants acknowledged benefits of reduced workloads, speed of accessing patient-level data and click-of-a-button reporting. Three factors influenced the ease of adopting the new system: firstly, implementation challenged the vertical position of the TB programme, TB data and staff's conventional roles and responsibilities; secondly, perceptions of the paper-based register as functional and reliable made the transition to electronic seem unnecessary; and thirdly, lack of a process of change management challenged staff's ability to internalise the proposed change. CONCLUSION: A process of change management is critical to facilitate the efficiency and effectiveness with which the electronic in-facility TB register is implemented.

Opportunities for Mobile App-Based Adherence Support for Children With Tuberculosis in South Africa.

Tuberculosis is the number one infectious cause of death globally. Young children, generally those younger than 5 years, are at the highest risk of progressing from tuberculosis infection to tuberculosis disease and of developing the most severe forms of tuberculosis. Most current tuberculosis drug formulations have poor acceptability among children and require consistent adherence for prolonged periods of time. These challenges complicate children's adherence to treatment and caregivers' daily administration of the drugs. Rapid developments in mobile technologies and apps present opportunities for using widely available technology to support national tuberculosis programs and patient treatment adherence. Pilot studies have demonstrated that mobile apps are a feasible and acceptable means of enhancing children's treatment adherence for other chronic conditions. Despite this, no mobile apps that aim to promote adherence to tuberculosis treatment have been developed for children. In this paper, we draw on our experiences carrying out research in clinical pediatric tuberculosis studies in South Africa. We present hypothetical scenarios of children's adherence to tuberculosis medication to suggest priorities for behavioral and educational strategies that a mobile app could incorporate to address some of the adherence support gaps faced by children diagnosed with tuberculosis. We argue that a mobile app has the potential to lessen some of the negative experiences that children associate with taking tuberculosis treatment and to facilitate a more positive treatment adherence experience for children and their caregivers.

Households, fluidity, and HIV service delivery in Zambia and South Africa - an exploratory analysis of longitudinal qualitative data from the HPTN 071 (PopART) trial.

INTRODUCTION: Population distributions, family and household compositions, and people's sense of belonging and social stability in southern Africa have been shaped by tumultuous, continuing large-scale historical disruptions. As a result, many people experience high levels of geographic and social fluidity, which intersect with individual and population-level migration patterns. We describe the complexities of household fluidity and HIV service access in South Africa and Zambia to explore implications for health systems and service delivery in contexts of high household fluidity. METHODS: HPTN 071 (PopART) is a three-arm cluster randomized controlled trial implemented in 21 peri-urban study communities in Zambia and South Africa between 2013 and 2018. A qualitative cohort nested in the trial included 148 purposively sampled households. Data collection was informed by ethnographic and participatory research principles. The analysis process was reflexive and findings are descriptive narrative summaries of emergent ideas. RESULTS: Households in southern Africa are extremely fluid, with people having a tenuous sense of security in their social networks. This fluidity intersects with high individual and population mobility. To characterize fluidity, we describe thematic patterns of household membership and residence. We also identify reasons people give for moving around and shifting social ties, including economic survival, fostering interpersonal relationships, participating in cultural, traditional, religious, or familial gatherings, being institutionalized, and maintaining patterns of substance use. High fluidity disrupted HIV service access for some participants. Despite these challenges, many participants were able to regularly access HIV testing services and participants living with HIV were especially resourceful in maintaining continuity of antiretroviral therapy (ART). We identify three key features of health service interactions that facilitated care continuity: disclosure to family members, understanding attitudes among health services staff including flexibility to accommodate clients' transient pressures, and participants' agency in ART-related decisions. CONCLUSIONS: Choices made to manage one's experiential sense of household fluidity are intentional responses to livelihood and social support constraints. To enhance retention in care for people living with HIV, policy makers and service providers should focus on creating responsive, flexible health service delivery systems designed to accommodate many shifts in client circumstances.

Breaking Down Barriers to Tell: A Mixed Methods Study of Health Worker Involvement in Disclosing to Children That They Are Living with HIV in Rural South Africa.

Disclosing to a child that s/he is living with HIV is necessary to promote adherence to treatment and improve health outcomes. Facilitating disclosure between caregivers and children remains a challenge for health workers. Understanding how health workers are involved in and perceive the disclosure process is integral to engaging with such challenges. We held group discussions with and surveyed 73 physicians, nurses, and counselors across 16 randomly selected facilities in two rural South African health districts, exploring their experiences of supporting disclosure between caregivers and children. Ninety percent of those surveyed agreed that children should be informed of their HIV status. Differences between categories of health workers regarding training, involvement in the disclosure process, and perceived responsibility for disclosure support led to inconsistent disclosure practices within facilities. Disclosure-strengthening interventions must consider the composition of the health worker team and the role that each category of health worker performs in their local settings.

Implementation of an electronic monitoring and evaluation system for the antiretroviral treatment programme in the Cape Winelands district, South Africa: a qualitative evaluation.

BACKGROUND: A pragmatic three-tiered approach to monitor the world's largest antiretroviral treatment (ART) programme was adopted by the South African National Department of Health in 2010. With the rapid expansion of the programme, the limitations of the paper-based register (tier 1) were the catalyst for implementation of the stand-alone electronic register (tier 2), which offers simple digitisation of the paper-based register. This article engages with theory on implementation to identify and contextualise enabling and constraining factors for implementation of the electronic register, to describe experiences and use of the register, and to make recommendations for implementation in similar settings where standardisation of ART monitoring and evaluation has not been achieved. METHODS: We conducted a qualitative evaluation of the roll-out of the register. This comprised twenty in-depth interviews with a diverse sample of stakeholders at facility, sub-district, and district levels of the health system. Facility-level participants were selected across five sub-districts, including one facility per sub-district. Responses were coded and analysed using a thematic approach. An implementation science framework guided interpretation of the data. RESULTS & DISCUSSION: We identified the following seven themes: 1) ease of implementation, 2) perceived value of an electronic M&E system, 3) importance of stakeholder engagement, 4) influence of a data champion, 5) operational and logistical factors, 6) workload and role clarity, and 7) importance of integrating the electronic register with routine facility monitoring and evaluation. Interpreting our findings through an implementation theory enabled us to construct the scaffolding for implementation across the five facility-settings. This approach illustrated that implementation was not a linear process but occurred at two nodes: at the adoption of the register for roll-out, and at implementation at facility-level. CONCLUSION: In this study we found that relative advantage of an intervention and stakeholder engagement are critical to implementation. We suggest that without these aspects of implementation, formative and summative outcomes of implementation at both the adoption and coalface stages of implementation would be negatively affected.