Delivery of index-linked HIV testing for children: learnings from a qualitative process evaluation of the B-GAP study in Zimbabwe.

BACKGROUND: Index-linked HIV testing for children, whereby HIV testing is offered to children of individuals living with HIV, has the potential to identify children living with undiagnosed HIV. The "Bridging the Gap in HIV Testing and Care for Children in Zimbabwe" (B-GAP) study implemented and evaluated the provision of index-linked HIV testing for children aged 2-18 years in Zimbabwe. We conducted a process evaluation to understand the considerations for programmatic delivery and scale-up of this strategy. METHODS: We used implementation documentation to explore experiences of the field teams and project manager who delivered the index-linked testing program, and to describe barriers and facilitators to index-linked testing from their perspectives. Qualitative data were drawn from weekly logs maintained by the field teams, monthly project meeting minutes, the project coordinator's incident reports and WhatsApp group chats between the study team and the coordinator. Data from each of the sources was analysed thematically and synthesised to inform the scale-up of this intervention. RESULTS: Five main themes were identified related to the implementation of the intervention: (1) there was reduced clinic attendance of potentially eligible indexes due to community-based differentiated HIV care delivery and collection of HIV treatment by proxy individuals; (2) some indexes reported that they did not live in the same household as their children, reflecting the high levels of community mobility; (3) there were also thought to be some instances of 'soft refusal'; (4) further, delivery of HIV testing was limited by difficulties faced by indexes in attending health facilities with their children for clinic-based testing, stigma around community-based testing, and the lack of familiarity of indexes with caregiver provided oral HIV testing; (5) and finally, test kit stockouts and inadequate staffing also constrained delivery of index-linked HIV testing. CONCLUSIONS: There was attrition along the index-linked HIV testing cascade of children. While challenges remain at all levels of implementation, programmatic adaptations of index-linked HIV testing approaches to suit patterns of clinic attendance and household structures may strengthen implementation of this strategy. Our findings highlight the need to tailor index-linked HIV testing to subpopulations and contexts to maximise its effectiveness.

When healthcare providers are supportive, 'I'd rather not test alone': Exploring uptake and acceptability of HIV self-testing for youth in Zimbabwe - A mixed method study.

INTRODUCTION: In sub-Saharan Africa, less than half of young people know their HIV status. HIV self-testing (HIVST) is a testing strategy with the potential to offer privacy and autonomy. We aimed to understand the uptake and acceptability of different HIV testing options for youth in Harare, Zimbabwe. METHODS: This study was nested within a cluster randomized trial of a youth-friendly community-based integrated HIV and sexual and reproductive health intervention for youth aged 16-24 years. Three HIV testing options were offered: (1) provider-delivered testing; (2) HIVST on site in a private booth without a provider present; and (3) provision of a test kit to test off site. Descriptive statistics and proportions were used to investigate the uptake of HIV testing in a client sample. A focus group discussion (FGD) with intervention providers alongside in-depth interviews, paired interviews and FGDs with a selected sample of youth clients explored uptake and acceptability of the different HIV testing strategies. Thematic analysis was used to analyse the qualitative data. RESULTS: Between April and June 2019, 951 eligible clients were tested for HIV: 898 (94.4%) chose option 1, 30 (3.25%) chose option 2 and 23 (2.4%) chose option 3. Option 1 clients cited their trust in the service and a desire for immediate counselling, support and guidance from trusted providers as the reasons for their choice. Young people were not confident in their expertise to conduct HIVST. Concerns about limited privacy, confidentiality and lack of support in the event of an HIV-positive result were barriers for off-site HIVST. CONCLUSIONS: In the context of supportive, trusted and youth-friendly providers, youth clients overwhelmingly preferred provider-delivered HIV testing over client-initiated HIVST or HIVST off site. This highlights the importance of listening to youth to improve engagement in testing. While young people want autonomy in choosing when, where and how to test, they do not want to necessarily test on their own. They desire quality in-person counselling, guidance and support, alongside privacy and confidentiality. To increase the appeal of HIVST for youth, greater provision of access to private spaces is required, and accessible pre- and post-test counselling and support may improve uptake.

Feasibility and Accuracy of HIV Testing of Children by Caregivers Using Oral Mucosal Transudate HIV Tests.

BACKGROUND: Children encounter multiple barriers in accessing facilities. HIV self-testing using oral mucosal transudate (OMT) tests has been shown to be effective in reaching hard-to-reach populations. We evaluated the feasibility and accuracy of caregivers conducting HIV testing using OMTs in children in Zimbabwe. METHODS: We offered OMTs to caregivers (>18 years) living with HIV to test children (2-18 years) living in their households. All caregivers were provided with manufacturer instructions. In Phase 1 (January-December 2018, 9 clinics), caregivers additionally received a demonstration by a provider using a test kit and video. In Phase 2 (January-May 2019, 3 clinics), caregivers did not receive a demonstration. We collected demographic data and assessed caregiver's ability to perform the test and interpret results. Caregiver performance was assessed by direct observation and scored using a predefined checklist. Factors associated with obtaining a full score were analyzed using logistic regression. RESULTS: Overall 400 caregivers (83.0% female, median age 38 years) who were observed tested 786 children (54.6% female, median age 8 years). For most tests, caregivers correctly collected oral fluid [87.1% without provider demonstrations (n = 629) and 96.8% with demonstrations (n = 157), P = 0.002]. The majority correctly used a timer (90.3% without demonstrations and 96.8% with demonstrations, P = 0.02). In multivariate logistic regression caregivers who obtained a full score for performance were more likely to have received a demonstration (odds ratio 4.14, 95% confidence interval: 2.01 to 8.50). CONCLUSIONS: Caregiver-provided testing using OMTs is a feasible and accurate HIV testing strategy for children. We recommend operational research to support implementation at scale.

Access to care for childhood cancers in India: perspectives of health care providers and the implications for universal health coverage.

BACKGROUND: There are multiple barriers impeding access to childhood cancer care in the Indian health system. Understanding what the barriers are, how various stakeholders perceive these barriers and what influences their perceptions are essential in improving access to care, thereby contributing towards achieving Universal Health Coverage (UHC). This study aims to explore the challenges for accessing childhood cancer care through health care provider perspectives in India. METHODS: This study was conducted in 7 tertiary cancer hospitals (3 public, 3 private and 1 charitable trust hospital) across Delhi and Hyderabad. We recruited 27 healthcare providers involved in childhood cancer care. Semi-structured interviews were audio recorded after obtaining informed consent. A thematic and inductive approach to content analysis was conducted and organised using NVivo 11 software. RESULTS: Participants described a constellation of interconnected barriers to accessing care such as insufficient infrastructure and supportive care, patient knowledge and awareness, sociocultural beliefs, and weak referral pathways. However, these barriers were reflected upon differently based on participant perception through three key influences: 1) the type of hospital setting: public hospitals constituted more barriers such as patient navigation issues and inadequate health workforce, whereas charitable trust and private hospitals were better equipped to provide services. 2) the participant's cadre: the nature of the participant's role meant a different degree of exposure to the challenges families faced, where for example, social workers provided more in-depth accounts of barriers from their day-to-day interactions with families, compared to oncologists. 3) individual perceptions within cadres: regardless of the hospital setting or cadre, participants expressed individual varied opinions of barriers such as acceptance of delay and recognition of stakeholder accountabilities, where governance was a major issue. These influences alluded to not only tangible and structural barriers but also intangible barriers which are part of service provision and stakeholder relationships. CONCLUSION: Although participants acknowledged that accessing childhood cancer care in India is limited by several barriers, perceptions of these barriers varied. Our findings illustrate that health care provider perceptions are shaped by their experiences, interests and standpoints, which are useful towards informing policy for childhood cancers within UHC.

A health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in India.

BACKGROUND: Cure rates for children with cancer in India lag behind that of high-income countries. Various disease, treatment and socio-economic related factors contribute to this gap including barriers in timely access of diagnostic and therapeutic care. This study investigated barriers to accessing care from symptom onset to beginning of treatment, from perspectives of caregivers of children with cancer in India. METHODS: Semi-structured in-depth interviews were conducted with caregivers of children (< 18 years) diagnosed with cancer in seven tertiary care hospitals across New Delhi and Hyderabad. Purposive sampling to saturation was used to ensure adequate representation of the child's gender, age, cancer type, geographical location and socioeconomic status. Interviews were audio recorded after obtaining informed consent. Thematic content analysis was conducted and organised using NVivo 11. RESULTS: Thirty-nine caregivers were interviewed, where three key themes emerged from the narratives: time intervals to definitive diagnosis and treatment, the importance of social supportive care and the overall accumulative impacts of the journey. There were two phases encapsulating the experiences of the family: referral pathways taken to reach the hospital and after reaching the hospital. Most caregivers, especially those from distant geographical areas had variable and inconsistent referral pathways partly due to poor availability of specialist doctors and diagnostic facilities outside major cities, influence from family or friends, and long travel times. Upon reaching the hospital, families mostly from public hospitals faced challenges navigating the hospital facilities, finding accommodation, and comprehending the diagnosis and treatment pathway. Throughout both phases, financial constraint was a recurring issue amongst low-income families. The caregiver's knowledge and awareness of the disease and health system, religious and social factors were also common barriers. CONCLUSION: This qualitative study highlights and explores some of the barriers to childhood cancer care in India. Our findings show that referral pathways are intrinsically linked to the treatment experience and there should be better recognition of the financial and emotional challenges faced by the family that occur prior to definitive diagnosis and treatment. This information would help inform various stakeholders and contribute to improved interventions addressing these barriers.

"I don't want them to know": how stigma creates dilemmas for engagement with Treat-all HIV care for people living with HIV in Eswatini.

"Treat-all" programmes aim to improve clinical outcomes and to reduce HIV transmission through regular HIV testing and immediate offer of antiretroviral therapy (ART) for those diagnosed HIV-positive, irrespective of immunological status and symptoms of disease. Global narratives on the benefits of Treat-all anticipate reduced HIV-related stigma and increased "normalisation" of HIV with Treat-all implementation, whereby HIV is remoulded as a manageable, chronic condition where stigmatising symptoms can be concealed. Drawing on Goffman's stigma work, we aimed to investigate how stigma may influence the engagement of clinically asymptomatic people living with HIV (PLHIV) with Treat-all HIV care in Shiselweni, Eswatini (formerly Swaziland). This longitudinal research comprised 106 interviews conducted from August 2016 to September 2017, including repeated interviews with 30 PLHIV, and one-off interviews with 20 healthcare workers. Data were analysed thematically using NVivo 11, drawing upon principles of grounded theory to generate findings inductively from participants' accounts. Stigma was pervasive within the narratives of PLHIV, framing their engagement with treatment and care. Many asymptomatic PLHIV were motivated to initiate ART in order to maintain a "discreditable" status, by preventing the development of visible and exposing symptoms. However, engagement with treatment and care services could itself be exposing. PLHIV described the ways in which these "invisibilising" benefits and exposing risks of ART were continually assessed and navigated over time. Where the risk of exposure was deemed too great, this could lead to intermittent treatment-taking, and disengagement from care. Addressing HIV related stigma is crucial to the success of Treat-all, and should thus be a core component of HIV responses.

"Treatment is not yet necessary": delays in seeking access to HIV treatment in Uganda and Zimbabwe.

We examined the logic that individuals use to account for delaying HIV testing and/or initiating HIV treatment. Our qualitative study, situated within the REALITY trial (Reduction of EArly mortaLITY in HIV infected adults and children starting antiretroviral therapy), was conducted in Uganda and Zimbabwe in 2015. Forty-eight participants (different age groups, sex and viral load/WHO disease stage) were included. Each participant had 2 interviews (1 after 4 weeks of participation in the trial the other after 12 weeks). If a person could manage presenting symptoms, they felt they had "more time" before starting antiretroviral therapy (ART). Their reluctance to have an HIV test (despite deteriorating health) arose from a belief that they were not "sick", that treatment was "not yet necessary". People in our study did not consider themselves as presenting "late", and treatment was not considered urgent as long as they considered their health to be "good enough".

"Well, not me, but other women do not register because..."- Barriers to seeking antenatal care in the context of prevention of mother-to-child transmission of HIV among Zimbabwean women: a mixed-methods study.

BACKGROUND: While barriers to uptake of antenatal care (ANC) among pregnant women have been explored, much less is known about how integrating prevention of mother-to-child transmission (PMTCT) programmes within ANC services affects uptake. We explored barriers to uptake of integrated ANC services in a poor Zimbabwean community. METHODS: A cross-sectional survey was conducted among post-natal women at Mbare Clinic, Harare, between September 2010 and February 2011. Collected data included participant characteristics and ANC uptake. Logistic regression was conducted to determine factors associated with ANC registration. In-depth interviews were held with the first 21 survey participants who either did not register or registered after twenty-four weeks gestation to explore barriers. Interviews were analysed thematically. RESULTS: Two hundred and ninety-nine participants (mean age 26.1 years) were surveyed. They came from ultra-poor households, with mean household income of US$181. Only 229 (76.6%) had registered for ANC, at a mean gestation of 29.5 weeks. In multivariable analysis, household income was positively associated with ANC registration, odds ratio (OR) for a $10-increase in household income 1.02 (95% confidence interval, CI, 1.0-1.04), as was education which interacted with having planned the pregnancy (OR for planned pregnancy with completed ordinary level education 3.27 (95%CI 1.55-6.70). Divorced women were less likely to register than married women, OR 0.20 (95%CI 0.07-0.58). In the qualitative study, barriers to either ANC or PMTCT services limited uptake of integrated services. Women understood the importance of integrated services for PMTCT purposes and theirs and the babies' health and appeared unable to admit to barriers which they deemed "stupid/irresponsible", namely fear of HIV testing and disrespectful treatment by nurses. They represented these commonly recurring barriers as challenges that "other women" faced. The major proffered personal barrier was unaffordability of user fees, which was sometimes compounded by unsupportive husbands who were the breadwinners. CONCLUSION: Women who delayed/did not register were aware of the importance of ANC and PMTCT but were either unable to afford or afraid to register. Addressing the identified challenges will not only be important for integrated PMTCT/ANC services but will also provide a model for dealing with challenges as countries scale up 'treat all' approaches.

Hygiene and uncertainty in qualitative accounts of hepatitis C transmission among drug injectors in Serbia.

Hepatitis C virus (HCV) infection is a significant cause of mortality and morbidity related to injecting drug use. In Serbia, recent estimates suggest that approximately a third of drug injectors are hepatitis C positive. We undertook the first qualitative study of drug injecting in Serbia with a focus on exploring drug injectors' accounts of hepatitis C risk. Drawing upon 67 qualitative interviews with drug injectors in Belgrade, we explore accounts of hepatitis C risk and its transmission. We find that accounts portray a social context of pervasive risk in relation to hepatitis C. Hepatitis C is characterised as ubiquitous among drug injectors, and as a hardy virus with immense transmission potential. Narratives of hygiene emerge as core to accounts of transmission, in which the virus is linked to dirt, including dirty environments, dirty drugs and dirty injecting equipment. These hygiene narratives not only have symbolic function but also appear to stem from ambiguities in accounts wherein hepatitis C is conflated with the signs, symptoms and transmission routes of hepatitis A. In addition, accounts portrayed hepatitis C risk management as a responsibility of individuals in the absence of secure trust or certainty in knowledge about risk, including in relation to others' disclosed antibody status. Hygiene narratives are a core and symbolic feature of injectors' accounts of hepatitis C transmission. There is an urgent need for health promotion fostering hepatitis C risk awareness and risk avoidance among drug injectors in Serbia.

Hope: a new way to look at the HIV epidemic.

There is currently a shift towards embracing 'structural intervention' approaches in HIV prevention and HIV treatment. We offer the concept of hope as an important new framework for researching HIV prevention and HIV treatment. We argue first, that hope is linked to capacity for behaviour change and helps us understand how social environments enable as well as constrain risk reduction. Second, we argue that hope helps us understand HIV treatment engagement and impact, especially uneasy relations between treatment access expectation and the lived experience of treatment delivery in environments characterized by fragile treatment systems. We conclude that HIV prevention should seek to create the structural conditions conducive to sustaining hope in the future, while drawing attention to the often unforeseen local effects of global discourses of HIV treatment promise which may offer an illusion of hope in certain contexts. We draw specific attention to the urgent need for interventions to tackle the adverse psychological and social consequences of fragile treatment delivery. Hope is an under researched concept in the social science of HIV prevention and HIV treatment. It offers unrealized potential, particularly for thinking about structural interventions in relation to managing HIV as a chronic illness and for maximizing HIV risk reduction in resource-poor settings.