Reasons for using traditional and complementary care by people living with HIV on antiretroviral therapy and association with interrupted care: a mixed methods study in Eswatini.

The use of traditional, complementary, and alternative medicine (TCAM) can lead to delays and interruptions in the HIV continuum of care. This study explores reasons for TCAM use in people living with HIV on antiretroviral therapy (ART) in Eswatini and compares interrupted care between different types of TCAM users. Data were collected using surveys in the MaxART study (a test-and-treat trial) between 2014 and 2017 to assess the exposure, namely visiting a TCAM provider. Additionally, visit dates were retrieved from clinic records to assess the outcome, interrupted care. Open-ended questions were analysed with qualitative content analysis (n = 602) and closed questions with bivariable and multivariable analysis (n = 202). Out of 202 participants, 145 (72%) never used TCAM, 40 (20%) ever used, and 17 (8%) is currently using TCAM (diviners, herbalists, and religious healers). No differences in interrupted care were found comparing never (reference category), past (Odds Ratio: 1.31, 95% confidence interval: 0.63-2.72), and current users (1.34, 0.47-3.77), while adjusting for gender, time since HIV diagnosis, and time on ART. Contextual factors affecting the choice for TCAM were the influence of family, advice from the health facility, and religious beliefs. Individual factors include trust in biomedical care, type of illness, no need for additional care, and practical reasons such as financial means. In conclusion, individual and contextual factors influence the choice for TCAM. Interrupted care does not differ between never, past, and current users.

The "ready-to-hand" test: Diagnostic availability and usability in primary health care settings in Sierra Leone.

This article assesses the availability of essential diagnostic tests in primary health care facilities in two districts in Sierra Leone. In addition to evaluating whether a test is physically present at a facility, it extends the concept of availability to include whether equipment is functional and whether infrastructure, systems, personnel and resources are in place to allow a particular test to be "ready to hand", that is, available for immediate use when needed. Between February 2019 and September 2019, a cross-sectional mixed-methods survey was conducted in all 40 Community Health Centres (CHCs) in Western Area, one of five principal divisions in Sierra Leone. The number of rapid diagnostic tests (RDTs) available ranged from 1-12, with 75% of facilities having 9 or less RDTs available out of a possible 17. While RDTs were overall more widely present than manual assays, there was wide variation between tests. The presence of RDTs at individual facilities was associated with having a permanent laboratory technician on staff. Despite CHCs being formally designated as providing laboratory services, no CHC fulfilled standard World Health Organisation (WHO) criteria for a laboratory. Only 9/40 (22.5%) CHCs had a designated laboratory space and a permanently employed laboratory technician. There was low availability of essential equipment and infrastructure. Supply chains were fragmented and unreliable, including a high dependency (>50%) on informal private sources for the majority of the available RDTs, consumables, and reagents. We conclude that the readiness of diagnostic services, including RDTs, depends on the presence and functionality of essential infrastructure, human resources, equipment and systems and that RDTs are not on their own a solution to infrastructural failings. Efforts to strengthen laboratory systems at the primary care level should take a holistic approach and focus on whether tests are "ready-to-hand" in addition to whether they are physically present.

Reasons for, and factors associated with, positive HIV retesting: a cross-sectional study in Eswatini.

Eswatini has a high HIV prevalence but has made progress towards improving HIV-status awareness, ART uptake and viral suppression. However, there is still a delay in ART initiation, which could partly be attributed to positive HIV-retesting. This study examines reasons for, and factors associated with, positive HIV-retesting among MaxART participants in Eswatini. Data from 601 participants is included in this cross-sectional study. Descriptive statistics and logistic regressions were used. Of the participants, 32.8% has ever retested after a previous positive result. Most participants who retested did this because they could not accept their results (61.9% of all retesters). Other main reasons are related to external influences, gender or the progression of their HIV infection (respectively 18.3%, 10.2%, and 6.1% of all retesters). Participants without a current partner and participants with less time since their first positive test have lower odds of retesting. To decrease retesting and reduce the delay in ART initiation resulting from it, efforts could be made on increasing the acceptance of positive HIV results. Providing more information on the process of testing and importance of early ART initiation, could be part of the solution.

Human preparedness: Relational infrastructures and medical countermeasures in Sierra Leone.

This paper examines health worker experiences in two areas of post-epidemic preparedness in Sierra Leone - vaccine trials and laboratory strengthening - to reflect on the place of people in current models of epidemic response. Drawing on ethnographic research and interviews with health workers in the aftermath of Ebola, it explores the hopes and expectations that interventions foster for frontline workers in under-resourced health systems, and describes the unseen work involved in sustaining robust response infrastructures. Our analysis focuses on what it means for the people who sustain health systems in an emergency to be 'prepared' for an epidemic. Human preparedness entails more than the presence of a labour force; it involves building and maintaining 'relational infrastructures', often fragile social and moral relationships between health workers, publics, governments, and international organisations. The COVID-19 pandemic has underscored the value of rethinking human resources from an anthropological perspective, and investing in the safety and support of people at the forefront of response. In describing the labour, personal losses, and social risks undertaken by frontline workers for protocols and practicality to meet in an emergency context, we describe the social process of preparedness; that is, the contextual engineering and investment that make response systems work.

HIV Support Groups and the Chronicities of Everyday Life in eSwatini.

Drawing on ethnographic research, I examine the evolution of HIV support groups and biosociality during the "treat-all era" in eSwatini. I show how support groups are shaped by local actors to cater to a need for social solidarity that transcends diagnostic status, and thereby move beyond donors' HIV-centric rationales to use the groups for HIV treatment scale-up. In this particular phase of the HIV epidemic, I suggest, support groups make up a particular kind of biosociality, which is shaped by shared experiences of structural vulnerability to chronic illness, and a desire to be prepared for future diseases and other misfortune.

Diagnostic waste: whose responsibility?

Waste management is notably absent from current discussions about efforts to improve access to diagnostics in low-and middle-income Countries (LMICs). Yet an increase in testing will inevitably lead to an increase in diagnostic waste, especially since many of the diagnostic tests designed for use in LMICs are single-use point-of-care tests. Diagnostic waste poses a threat to both human and environmental health. In this commentary we draw on our experience of diagnostic waste management in Sierra Leone and review current evidence on: the volume and impact of diagnostic waste in LMICs, existing health-care waste management capacity in LMICs, established national and international policies for improving health-care waste management, and opportunities for strengthening policy in this area. We argue that questions of safe disposal for diagnostics should not be an afterthought, only posed once questions of access have already been addressed. Moreover, responsibility for safe disposal of diagnostic waste should not fall solely on national health systems by default. Instead, consideration of the end-life of diagnostic products must be fully integrated into the diagnostic access agenda and greater pressure should be placed on manufacturers to take responsibility for the full life-cycle of their products.

Responsibility, repair and care in Sierra Leone's health system.

Central to the workings of a hospital are the technical and bureaucratic systems that ensure the effective coordination of information and biological materials of patients across time and space. In this paper, which is based on ethnographic research in a public referral hospital in Freetown, Sierra Leone, conducted between October 2018 and September 2019, we adopt a patient pathway approach to examine moments of breakdown and repair in the coordination of patient care. Through the in-depth analysis of a single patient pathway through the hospital, we show how coordination work depends on frequent small acts of intervention and improvisation by multiple people across the pathway, including doctors, managers, nurses, patients and their relatives. We argue that such interventions depend on the individualisation of responsibility for 'making the system work' and are best conceptualised as acts of temporary repair and care for the health system itself. Examining how responsibility for the repair of the system is distributed and valued, both within the hospital and in terms of broader structures of health funding and policy, we argue, is essential to developing more sustainable systems for repair.

Experiences from a community advisory Board in the Implementation of early access to ART for all in Eswatini: a qualitative study.

BACKGROUND: Engaging communities in community-based health research is increasingly being adopted in low- and middle-income countries. The use of community advisory boards (CABs) is one method of practicing community involvement in health research. To date, few studies provide in-depth accounts of the strategies that CAB members use to practice community engagement. We assessed the perspectives, experiences and practices of the first local CAB in Eswatini (formerly known as Swaziland), which was implemented as part of the MaxART Early Access to ART for All study. METHODS: Trained Swazi research assistants conducted two focus group discussions and 13 semi-structured interviews with CAB members who had been part of the MaxART study for at least 2.5 years. Interviews explored CAB composition and recruitment, the activities of CAB members, the mechanisms used to engage with communities and the challenges they faced in their role. RESULTS: The MaxART CAB played an active role in the implementation of the Early Access to Art for All study, and activities mainly focused on: (1) promoting ethical conduct, in particular privacy, consent and confidentiality; (2) communication and education, communicating about the study and educating the community on the benefits of HIV testing and early access to HIV treatment; and (3) liaising between the community and the research team. Strategies for interacting with communities were varied and included attending general community meetings, visiting health facilities and visiting public places such as cattle dipping tanks, buses, bars and churches. Differences in the approach to community engagement between CAB members living in the study areas and those residing outside were identified. CONCLUSION: The experiences of the first CAB in Eswatini demonstrate that community engagement using CABs is a valuable mechanism for engaging communities in implementation studies. Considerations that could impact CAB functioning include clearly defining the scope of the CAB, addressing issues of CAB independence, the CAB budget, providing emotional support for CAB members, and providing continuous training and capacity building. These issues should be addressed during the early stages of CAB formation in order to optimize functioning.

Changes in disclosure, adherence and healthcare interactions after the introduction of immediate ART initiation: an analysis of patient experiences in Swaziland.

INTRODUCTION: There are concerns that immediate ART initiation (regardless of CD4 count) negatively affects HIV status disclosure, ART adherence and healthcare interactions. We assessed changes in these factors after the 'Early access to ART for all' intervention, a universal test-and-treat study in Swaziland. METHODS: We recruited two samples of participants between 2014 and 2017. The first group was interviewed before the intervention (control); the second group at the implementation and 6 months thereafter (intervention). RESULTS: High levels of disclosure to partners (controls and intervention: 94%) and family members (controls: 78%, intervention: 79%) were reported, and high levels of adherence (85% did not miss a dose among the controls, 84% in the intervention group). There were no changes in patients reporting feeling pressured to initiate ART (controls: 10%, intervention: 11%). The quality of interaction with healthcare workers improved after the intervention; healthcare workers explained more often the choice of ART initiation (controls: 88%, intervention: 93%) and the meaning of both CD4 and viral load test results (controls: 15%, intervention: 47%). More patients in the intervention group reported receiving test results (controls: 13%, intervention: 46%). We observed no changes in disclosure, adherence or patient experiences 6 months into the intervention compared to its start. CONCLUSION: Our results suggest that both reported adherence and disclosure levels remain high after the introduction of immediate ART in Swaziland. We observed an improvement in the healthcare interactions, possibly due to training at participating facilities, which will be an important element for a successful roll-out of immediate ART.

OBJECTIF: Il y a des craintes que l'initiation de l'ART immédiat (quel que soit la numération des CD4) affecte négativement la divulgation du statut VIH, l'adhésion au traitement et les interactions avec les soins de santé. Nous avons évalué les modifications de ces facteurs après l'intervention «Accès précoce à l'ART pour tous¼, une étude universelle de dépistage et traitement au Swaziland. MÉTHODES: Nous avons recruté deux échantillons de participants entre 2014 et 2017. Le premier groupe a été interviewé avant l'intervention (témoins), le deuxième groupe lors de l'implémentation et six mois après (intervention). RÉSULTATS: Des niveaux élevés de divulgation aux partenaires (témoin et intervention: 94%) et aux membres de la famille (témoins: 78%, intervention: 79%) ont été rapportés, ainsi que des taux élevés d'adhésion (85% n'ont pas oublié une dose chez les témoins, 84% dans le groupe d'intervention). Aucun changement n'a été observé chez les patients déclarant se sentir poussés à commencer l'ART (témoins: 10%, intervention: 11%). La qualité de l'interaction avec les agents de la santé s'est améliorée après l'intervention; les agents de santé expliquent plus souvent le choix de l'initiation de l'ART (témoins: 88%, intervention: 93%) et la signification des résultats des tests de CD4 et de la charge virale (témoins: 15%, intervention: 47%). Plus de patients du groupe d'intervention ont déclaré avoir reçu les résultats des tests (témoins: 13%, intervention: 46%). Nous n'avons observé aucun changement dans la divulgation, l'adhésion ou l'expérience des patients six mois après le début de l'intervention par rapport à son début. CONCLUSION: Nos résultats suggèrent que les taux d'adhésion et de divulgation rapportés restent élevés après l'introduction de l'ART immédiat au Swaziland. Nous avons observé une amélioration des interactions avec les soins de santé, probablement due à la formation dispensée dans les établissements participants, ce qui constituera un élément important pour le succès du déploiement de l'ART immédiat.

'Then her neighbour will not know her status': how health providers advocate antiretroviral therapy under universal test and treat.

Introduction: Universal test and treat (UTT)-antiretroviral therapy (ART) for all HIV-positive individuals regardless of CD4 count-is the WHO's recommended treatment guideline. UTT has implications for health providers' workload in areas of high HIV prevalence and for understandings of ART and HIV. This article explores health providers' experiences of implementing UTT in Hhohho Region, Eswatini. Methods: Between March 2015 and October 2016, in-depth interviews were conducted with health providers implementing UTT. Interviews were transcribed verbatim and translated into English for qualitative content analysis. Results: Twenty-five providers from eight facilities were interviewed. Respondents encouraged early ART by promoting its overall health benefits, and the possibility of avoiding disclosure and HIV-related stigma in the community. Some health providers downplayed UTT's preventive benefits to avoid discouraging condom use. Respondents suggested that initiating ART immediately after testing could improve linkage-to-care, but recognized that overly hasty initiation might affect adherence. Viral load testing was seen as a potentially useful tool to monitor clients' response to ART. Conclusions: Health providers appropriated stigma to encourage early ART. This suggests an attentiveness to the social burden of HIV/AIDS, but potentially exacerbates discrimination and conflicts with efforts to reduce HIV-related stigma.

Understanding reasons for discontinued antiretroviral treatment among clients in test and treat: a qualitative study in Swaziland.

INTRODUCTION: Retention on antiretroviral therapy (ART) is critical for the successful adoption of the test and treat policy by sub-Saharan African countries, and for realizing the United Nations programme on HIV and AIDS target of 90-90-90. This qualitative study explores HIV positive clients' reasons for discontinuing ART under the MaxART test and treat implementation study in Swaziland. METHODS: Clients identified as lost to follow-up (LTFU) in the programme database, who had initiated ART under the intervention arm of the MaxART study, were purposively selected from two facilities. LTFU was defined as stopping ART refill for three months or longer from the date of last appointment, and not being classified as transferred out or deceased. Semi-structured face-to-face interviews were conducted with nine clients and one treatment supporter between July and August 2017. All interviews were conducted in the local language, audio-recorded, summarized or transcribed and translated to English for thematic analysis. RESULTS: Respondents described mobility as the first step in a chain of events that affected retention in care. It was entwined with precarious employment, care delivery, interactions with health workers, lack of social support, anticipated stigma and ART-related side-effects, including the exacerbation of hunger. The chains of events involved several intersecting reasons that occurred one after the other as a series of contiguous and linked events that led to clients' eventual discontinuation of ART. The individual accounts of step-by-step decision-making revealed the influence of multi-layered contexts and the importance of critical life-events. CONCLUSIONS: Clients' reasons for abandoning ART are a complex, inextricably interwoven chain of events rather than a single occurrence. Mobility is often the first step in the process and commonly results from precarious economic and social circumstances. Currently the health system poorly caters to the reality of people's mobile lives. Interventions should seek to increase healthcare workers' understanding of the chain of events leading up to discontinuation on ART and the social dilemmas that clients face.

False starts in 'test and start': a qualitative study of reasons for delayed antiretroviral therapy in Swaziland.

Background: Test and start, antiretroviral therapy (ART) for all HIV-positive individuals, is a WHO-recommended treatment guideline. In Swaziland, test and start has been evaluated through the MaxART implementation study. This article examines why, in MaxART, some newly diagnosed HIV-positive clients delayed initiating ART. Methods: Thirteen HIV-positive clients who delayed ART for ≥90 d after testing were identified from the MaxART study database and interviewed. Interviews were audio recorded, transcribed and translated into English for qualitative content analysis. Results: Respondents had often tested positive several times before initiating ART, with the initial diagnosis sometimes completely unexpected. Repeat testing-and delayed ART-was linked to a desire to come to terms with their diagnosis and prepare for a lifelong treatment course. Clients previously enrolled in pre-ART, particularly with high CD4 counts, had internalized past messages about ART as being non-essential and taking care of oneself through other means. Concerns about ART-related adverse events were weighed against these messages. Worries about inadvertent disclosure and its impact on social and economic relationships also discouraged initiation. Conclusion: Although potentially reducing logistical barriers, expedited ART initiation does not necessarily accommodate some clients' need for time to come to terms with the diagnosis and the prospect of lifelong treatment.

Access for all: contextualising HIV treatment as prevention in Swaziland.

This article explores how notions of the individual and population are evoked in two ongoing HIV treatment as prevention (TasP) implementation studies in Swaziland. By contrasting policy discourses with lived kinship experiences of people living with HIV, we seek to understand how TasP unfolds in the Swazi context. Data collection consisted of eight focus group discussions with people living with HIV who were members of support groups to examine their perspectives about TasP. In addition, 18 key informant interviews were conducted with study team members, national-level policy-makers and NGO representatives involved in the design of health communication messages about TasP in Swaziland. Thematic analysis was used to identify recurrent themes in transcripts and field notes. Policy-makers and people living with HIV actively resisted framing HIV treatment as a prevention technology but promoted it as (earlier) access to treatment for all. TasP was not conceptualised in terms of individual or societal benefits, which are characteristic of international public health debates; rather its locally situated meanings were embedded in kinship experiences, concerns about taking responsibility for one's own health and others, local biomedical knowledge about drug resistance, and secrecy. The findings from this study suggest that more attention is needed to understand how the global discourse of TasP becomes shaped in practice in different cultural contexts.

Do support groups members disclose less to their partners? The dynamics of HIV disclosure in four African countries.

BACKGROUND: Recent efforts to curtail the HIV epidemic in Africa have emphasised preventing sexual transmission to partners through antiretroviral therapy. A component of current strategies is disclosure to partners, thus understanding its motivations will help maximise results. This study examines the rates, dynamics and consequences of partner disclosure in Burkina Faso, Kenya, Malawi and Uganda, with special attention to the role of support groups and stigma in disclosure. METHODS: The study employs mixed methods, including a cross-sectional client survey of counselling and testing services, focus groups, and in-depth interviews with HIV-positive individuals in stable partnerships in Burkina Faso, Kenya, Malawi and Uganda, recruited at healthcare facilities offering HIV testing. RESULTS: Rates of disclosure to partners varied between countries (32.7% - 92.7%). The lowest rate was reported in Malawi. Reasons for disclosure included preventing the transmission of HIV, the need for care, and upholding the integrity of the relationship. Fear of stigma was an important reason for non-disclosure. Women reported experiencing more negative reactions when disclosing to partners. Disclosure was positively associated with living in urban areas, higher education levels, and being male, while being negatively associated with membership to support groups. CONCLUSIONS: Understanding of reasons for disclosure and recognition of the role of support groups in the process can help improve current prevention efforts, that increasingly focus on treatment as prevention as a way to halt new infections. Support groups can help spread secondary prevention messages, by explaining to their members that antiretroviral treatment has benefits for HIV positive individuals and their partners. Home-based testing can further facilitate partner disclosure, as couples can test together and be counselled jointly.

'What mother wouldn't want to save her baby?' HIV testing and counselling practices in a rural Ugandan antenatal clinic.

Drawing on an exploratory qualitative case study investigating everyday practices within an antenatal clinic in rural Uganda, this paper investigates the dynamics of consent and counselling within a prevention of mother-to-child HIV transmission (PMTCT) programme, from the perspectives of various health professionals involved at different stages of the PMTCT trajectory. The paper contributes to the existing literature by focusing not on clients' views but, rather, by elucidating how different cadres of health workers view and practice the human rights principles of informed consent and opting out, that are reflected in Uganda's HIV testing policies. By investigating the roles and responsibilities of community counsellors, post-test counsellors, and midwives, we illustrate how the practice of counselling in PMTCT is influenced by two hegemonic discourses: the health of a child should be protected, and the health worker knows best. As a result, a directive form of counselling in PMTCT settings, with its focus on the health of the baby, silences women's right to opt out of HIV tests.

Women's views on consent, counseling and confidentiality in PMTCT: a mixed-methods study in four African countries.

BACKGROUND: Ambitious UN goals to reduce the mother-to-child transmission of HIV have not been met in much of Sub-Saharan Africa. This paper focuses on the quality of information provision and counseling and disclosure patterns in Burkina Faso, Kenya, Malawi and Uganda to identify how services can be improved to enable better PMTCT outcomes. METHODS: Our mixed-methods study draws on data obtained through: (1) the MATCH (Multi-country African Testing and Counseling for HIV) study's main survey, conducted in 2008-09 among clients (N = 408) and providers at health facilities offering HIV Testing and Counseling (HTC) services; 2) semi-structured interviews with a sub-set of 63 HIV-positive women on their experiences of stigma, disclosure, post-test counseling and access to follow-up psycho-social support; (3) in-depth interviews with key informants and PMTCT healthcare workers; and (4) document study of national PMTCT policies and guidelines. We quantitatively examined differences in the quality of counseling by country and by HIV status using Fisher's exact tests. RESULTS: The majority of pregnant women attending antenatal care (80-90%) report that they were explained the meaning of the tests, explained how HIV can be transmitted, given advice on prevention, encouraged to refer their partners for testing, and given time to ask questions. Our qualitative findings reveal that some women found testing regimes to be coercive, while disclosure remains highly problematic. 79% of HIV-positive pregnant women reported that they generally keep their status secret; only 37% had disclosed to their husband. CONCLUSION: To achieve better PMTCT outcomes, the strategy of testing women in antenatal care (perceived as an exclusively female domain) when they are already pregnant needs to be rethought. When scaling up HIV testing programs, it is particularly important that issues of partner disclosure are taken seriously.