Interrogating concepts of care in the HIV care continuum: ethnographic insights from the implementation of a “Universal Test and Treat” approach in South Africa

ABSTRACT

South Africa currently sustains the largest antiretroviral treatment (ART) programme in the world. The number of people on ART is set to grow even more in the coming years as incidence remains stable, people on ART stay healthy, and guidelines for initiation become increasingly inclusive. The South African public health sector has increasingly relied on community- and home-based lay and professional “carers” to carry out the everyday tasks of rolling out the ART programme. Drawing on ethnographic research in one locality in the Western Cape, the paper explores the care practices of two such groups of carers implementing a ‘Universal Test and Treat’ (UTT) approach. The UTT approach being evlauated in this place is based on one model of the HIV treatment cascade, or care continuum, which focuses on the steps necessary to identify and link HIV-positive individuals to care and retain them in lifelong HIV treatment. In this context, community-based care workers are responsible for carrying out several discrete steps in the HIV care continuum, including testing people for HIV, linking HIV-positive individuals to care, and supporting adherence. In order to retain clients within the continuum, however, carers also perform other forms of labour that stretch their care work beyond more bounded notions of a stepwise progression of care. These broader forms of care, which can be material, emotional, social or physical in nature, appear alongside the more structured technical and biomedical tasks formally expected of carers. We argue that understanding the dynamics of these more distributed and relational forms of care is essential for the effective implementation of the care continuum, and of the UTT approach, in diverse contexts.

KEYWORDS:

• HIV
• treatment cascade
• care continuum
• community-based caregivers
• Universal Test and Treat
• emotional labour

Introduction

In just over a decade, the South African government’s response to the HIV epidemic has moved from denialism to rolling out and sustaining the largest antiretroviral treatment (ART) programme in the world (Simelela & Venter, 2014). The number of people to be incorporated into the national HIV programme is set to grow even more in the coming years as HIV incidence remains stable, ART prolongs the lives of people living with HIV, and ART initiation guidelines become more inclusive (WHO, 2015).

In its latest HIV treatment guidelines, the South African National Department of Health (DoH) has formalised its commitment to implementing what they refer to as an HIV care continuum:

an integrated system of care that guides and tracks clients over time, through a comprehensive array of health services spanning from screening for HIV, to diagnosis and management of HIV, to initiation onto ART, retention in care and psychosocial support. (Department of Health, 2015, p.7)

While the South African DoH is confident that this approach will help realise its vision of “a long and healthy life for all citizens” (Department of Health, 2015, 1), it recognises that the care continuum is far from linear in practice. Major challenges continue to impede HIV testing uptake, linkage to and retention in care and long-term adherence (Micek et al., 2009).

To help answer some of these questions, an ongoing cluster-randomised trial in South Africa and Zambia, called “Population Effects of Antiretroviral Therapy to Reduce HIV transmission” (PopART), aims to evaluate a new strategy to reduce HIV incidence referred to as “Universal Test and Treat” (UTT). Underpinning the UTT approach is the hypothesis that the combination of population-based voluntary HIV counselling and testing (HCT), education and immediate linkage to care and antiretroviral therapy initiation will reduce HIV incidence rates at the population level (Hayes & Fidler, 2012). The trial’s intervention package relies on a cadre of professional door-to-door carers called Community HIV-care Providers (CHiPs) responsible for delivering prevention services, home-based HCT, facilitating linkage to care, and adherence support (Hayes & Fidler, 2012). In South Africa, this intervention is delivered alongside an existing cadre of semi-professional community care workers (CCWs) who, working for NGOs sub-contracted by the DoH, are responsible for ART adherence monitoring and facilitating retention in care.

This paper is based on research that took place in one site where the PopART intervention is being implemented in the Western Cape of South Africa, and explores how a particular conception of the HIV care continuum is being implemented there. Specifically, we describe how the continuum plays out in caregivers’ everyday engagements with clients, and how they attempt to resolve challenges at different stages of the continuum.

Implementing the HIV care continuum

The concept of a care continuum has been used in clinical research on maternal, newborn and child health, and on care for the elderly and those with chronic conditions to highlight the importance of understanding patient care as a stepwise progression through a set of stages, in which each prior level of engagement serves to buttress and promote future engagement in health-care services (Kerber et al., 2007; Lamb, 1997; Ogden, Esim, & Grown, 2006). In the context of HIV, the notion of an HIV care continuum, sometimes also referred to as the treatment or care cascade, has emerged more recently (De Cock, 2014; Gardner, McLees, Steiner, Del Rio, & Burman, 2011; Mugavero, Amico, Horn, & Thompson, 2013; Skarbinski et al., 2015) as part of a broader shift towards thinking about the management of HIV as a chronic condition (Eaton, Saag, & Mugavero, 2014) and treatment-based prevention approach (Brennan, Browne, & Horgan, 2014; Zulliger, Barrington, Donastorg, Perez, & Kerrigan, 2015).

Successful progression through the continuum has become important not only for individual patient care, but also for broader population-level concern about preventing transmission. However, many socioeconomic, structural and health systems challenges impede individuals’ smooth progression through the structured stages of the care continuum (Eholie, Vella, & Anglaret, 2014; Knight, Van Rooyen, Humphries, Barnabas, & Celum, 2015; Underwood, Hendrickson, Van Lith, Lengwe Kunda, & Mallalieu, 2014). Monitoring patients as they move through different health-care services is essential because the continuum is rarely experienced as a linear process, as many people living with HIV drop in and out of care (Knight et al., 2015; Kranzer et al., 2011; Kranzer, Govindasamy, Ford, Johnston, & Lawn, 2012). It is particularly difficult to monitor and avoid losses to follow up in human- and material-resource limited settings (Lawn, Harries, & Wood, 2010; Medland et al., 2015), a concern that emerged clearly over the course of our research.

In order to cope with the growing pressures on the health system required to roll out ART and to implement the HIV care continuum, the South African public health sector has increasingly relied on community- and home-based carers (Schneider & Lehmann, 2010). According to the South African Department of Health, CCWs are to provide their patients with “holistic, person-centred and comprehensive” care to ensure that they are retained within care (Department of Health, 2001, p. 4). While providing each client with “individual and family needs”, including “psychosocial support” as well as referring sick clients for follow-up care or treatment, they should also empower clients to “promote behaviour change through a life skills programme” (Department of Health, 2009, p. 26). Despite their essential roles in sustaining the success of the HIV care continuum, little research has been done on the actual practices and experiences of community- and home-based caregivers in resource-poor settings (Zulliger, Moshabela, & Schneider, 2014).

Conceptions of care

Care is a difficult concept to define, and has been variously conceived and used within policy and practice over time (Moss, Boddy, & Cameron, 2006). It has been deployed in feminist writing to draw attention to women’s unpaid work among family members, but has also been used in much more diffuse forms as it spans global–local, public–private, paid–unpaid and emotional–physical labour divides (Daly & Lewis, 2000; Raghuram, 2012). In this broader conception of care, the division between emotional and physical labour is also challenged as carers and the cared for have come to be considered in an interdependent relationship with one another (Daly & Lewis, 2000; Raghuram, 2012).

The HIV care continuum, by contrast, is a much more bounded conception of care, as it focuses on a particular set of care practices. By exploring the everyday experiences of caregivers, the article explores the tensions between this particular understanding of care and caregivers’ experiences of more distributed forms of care.

Methods

This article is based on ethnographic research undertaken in one locality in the Western Cape of South Africa. The research was conducted in the local area surrounding a health facility (clinic), also serving as the catchment area in which the PopART intervention was being delivered. Between July 2014 and March 2015, participant observation was conducted with CCWs and CHiPs working in this place. The first author spent between 12 and 16 hours a week for 20 weeks with carers, following them as they went about their daily activities of visiting households, testing people for HIV, linking HIV-positive individuals to care, monitoring their ART adherence and ensuring retention in care.

In addition to the participant observation activities, open-ended in-depth interviews were conducted with a convenience sample of CCWs (n = 2), CHiPs (n = 3) and their clients (n = 6). Carer interviews focused on the experiences of being a carer and providing care, while interviews with carers’ clients focused on the experiences of accessing care. Field notes and interview transcripts were analysed throughout fieldwork using a thematic content analysis methodology (Braun & Clarke, 2006), and preliminary findings were fed back iteratively into ongoing data collection. Ethical clearance for the study was included in the Stellenbosch Universities Health Research Ethics Committee approval for social science linked to HPTN 071 (PopART).

Results

At a routine meeting with CHiPs in February 2015, one of the PopART intervention managers attempted to explain the importance of collecting accurate information from their clients:

Get the truth from the client. Don’t choose to make your life easy by accepting “I don’t know”; people know if they are on ART! Even if you have to figure out the closest date to when the client first went to the clinic, that is better than saying, “I don’t know”. You must get to a place with these people who you tested HIV-positive that you can have these kinds of conversations! [ … ]. Don’t tell me “the people aren’t there”; go find them! Only if they have dogs or a gun do you not have to go inside. (Fieldnotes, February, 2015)

In this encounter, the manager insisted that the CHiPs’ care practices should go beyond mechanical actions to establish a relationship with their clients where they are able to talk about difficult questions surrounding HIV testing and treatment. In defining the terms of the relationships created between CHiPs and their clients, the manager thus effectively blurred the lines between care provision as a bounded set of tasks and care provision as empathetic work. In the context of the study, additional pressures are placed on care workers to produce forms of evidence that both enable them to monitor clients as they move along the HIV care continuum and serve as proof of the trial’s operational success.

In addition to the demands placed on caregivers by their supervisors and employers, carers are also often asked by their clients to provide emotional and material forms of care. In the midst of these competing demands, carers must negotiate the tensions between the outcomes-based imperatives of health research, intervention and implementation and the personal, intimate kinds of care provision that are often necessary to achieve the steps in the care continuum. In this context, care manifests in multiple and shifting ways, and moves more fluidly across and between the steps of the continuum.

Identifying HIV-positive individuals and linking them to treatment

In implementing the first step in the continuum, CHiPs visit households to conduct door-to-door HCT. At each household, all members are enumerated, then every individual over the age of 12 years is offered HCT. The home-based HCT delivered by CHiPs is the same as the routine HCT performed by counsellors at government health facilities. In addition, CHiPs collect information about the client’s household structure, employment status and sexual practices. This home-based HCT approach is one unique element of the care continuum strategy being evaluated by PopART.

As part of the PopART intervention implementation plan, CHiPs were deliberately recruited as residents of the clinic catchment area – premised on the idea of capitalising on their local knowledge and social capital. In some cases, the CHiPs’ physical and social proximity to their clients posed a problem for community members, who were concerned about the confidentiality of their HIV status. In these instances, the carers tried to distance themselves from their clients by attempting to establish professional relationships with clients. By drawing a distinction between their personal and professional identities and distancing themselves from clients, carers try to instil confidence in their professionalism, their trustworthiness and their discretion:

We [ … ] try to explain to them that we [are] not going to talk about them when we come to a house. I am doing two streets in my zone [ … ]; can you imagine how many people we are dealing with every day? [ … ] So I can’t remember that person. (CHiP, Female, 2015)

Additionally, the emphasis on professionalism allows carers to emotionally distance themselves from clients, protecting their own emotions.

Sometimes, by contrast, CHiPs feel that they need to build long-term, trusting relationships with their clients before they could convince them to test and to initiate treatment.

The friendship that I have with my clients is [ … ] making a difference, because some of the houses you find a person is positive. I mean I tested the person positive [ … ]. At first they didn’t want to take ARVs but when I am going there several times, I am making a difference because now they can go to the clinic. (CHiP, Female, 2015)

Through her informal, personal relationship with her client, the carer was able to encourage her client to seek out healthcare and initiate HIV treatment.

While carers felt that these relationships ensured that more people are included in the HIV care continuum, they also came with additional responsibilities that lay outside the carers’ technical, outcomes-based care practices. These relationships could often transverse formal/informal or professional/personal boundaries, and thus put additional emotional and material burdens on carers.

In summary, while some clients responded better to professional, even disconnected, relationships with carers, others preferred a more personal touch. Carers’ sensitivity to the diverse ways that clients responded to these different modes of engagement enabled them to deliver these first steps – testing and linking to care – in the HIV care continuum more effectively.

Retaining HIV-positive individuals in the HIV care continuum

Once initiated on ART at the local clinic, clients continue to be visited by CHiPs who continue to deliver prevention package to their household. In addition, a CCW linked to the health facility is assigned to each client to support their long-term adherence to ART and help manage their illness. For many carers, this often meant more than merely building trust with their clients, but also entailed caring about the care they provided and being responsive to the particular needs of each of their clients. Sometimes, carers would don the façade of being a client’s close friend or relative in order to avoid inadvertent disclosure of their client’s HIV status. Other times, their relationships with clients took on the characteristics of kinship. Importantly, these engagements often entailed care workers becoming emotionally invested in the health and well-being of their clients:

What we are doing, we also give them support. We are also acting as their family members [ … ]. When you see that patient, you mustn’t treat that patient as someone you don’t know, you must tell you, in your mind, “if this patient is my sister, what would I be doing now?”. (CCW, Female, 2015)

While important for clients’ health-care outcomes, these relationships could also become a heavy burden for carers. In addition to the emotional responsibility carers often took on for the clients’ health outcomes, their engagements could also place physical and economic strains on the carers as they attempted to address their clients' other personal and social issues:

And also sometimes you see that a mother is being abused by the father, you try and help them out. Even in your spare time on a Sunday, when I don’t work, I go to that person, I tell that person about social workers. (CHiPs, Female, 2015)

This CHiP felt that as a fellow community member, it was her responsibility to help people where she was able to, particularly where she saw a need. Carers often must respond to both the pressures they feel from their supervisors to retain clients in care and from their clients themselves, with whom they sometimes develop increasingly close relationships. These more distributed forms of care provision fall outside of the normative framework of the HIV care continuum, and yet are essential to ensuring patients stay the course of treatment.

Long-term ART adherence and retention in care

In addition to the challenges of managing their interpersonal relationships with clients, carers’ everyday labour is moulded by powerful structural and socioeconomic issues that shape access to and provision of care in this locality. These structural and social dynamics include: unemployment and poverty, alcohol and drug abuse, violence and intersecting stigmas. Further detail and contextualisation through a historically informed description of the particularities of the place where the research was carried out are available in Wademan (2016).

In order to effectively implement the HIV care continuum, carers must negotiate these structural realities, sometimes in partnership with clients, with whom they develop strategies to ensure their continued adherence. For instance, in order to be sensitive to ongoing issues with HIV-related stigma, CCWs do not wear uniforms when visiting their clients. They also sometimes arrange to meet their clients in neutral settings, like the local clinic, or even offer up their own houses as meeting places outside of work hours. Although these strategies could come with risks and add burdens on carers’ time and personal lives, these actions allowed them to be responsive to the sensitivities and needs of clients.

Carers were also often called on to resolve gaps in service provision in the area by providing other forms of care outside of the explicit boundaries of their jobs. Often these more distributed forms of care were extended to people other than their clients. For example, carers were sometimes asked by clients or clients’ family members to visit bed-ridden people who were too weak to visit the local clinic. While the CCWs would usually oblige, they were rarely able to materially assist these community members. Instead, they would leave the premises, promising to mention the sick person to the social worker responsible for that area. This allowed them to avoid taking on too many responsibilities or overburdening themselves emotionally.

In these encounters, carers were also confronted by the social and moral obligations of caring in a context of severe constraints, where community members often lack the necessary resources to survive. CCWs sometimes complained that these actions not only cost them time and money, but also potentially put them at physical risk. One CCW explained,

Sometimes I go to the house, [ … ] to visit a patient and this patient is very sick, he cannot walk, [ … ] And uh, sometimes I cannot use [a] mask, this person is coughing, you can hear from when you enter the door, he or she is coughing too much. So I am supposed to go inside, deep inside and see this patient because that’s my work. (CCW, Female, 2015)

As we have explored, carers are often called to provide forms of care beyond the biomedical in order to try ameliorate social, psychological and physical traumas linked to disease and illness. However, these forms of care often come at personal physical, emotional, and financial cost.

Discussion and conclusion

This article has aimed to describe the everyday experiences of caregivers in one locality as they endeavour to support clients along the HIV care continuum. The UTT approach being implemented in this context is premised on notions of biomedical and technical competence and efficiency, linked to the bounded set of steps on the HIV care continuum. However, carers displayed a remarkable ability to adapt these structured protocols in order to deliver a more distributed model of care that allowed them to more effectively retain clients along the HIV care continuum. This is particularly the case where carers felt that they have a moral and relational obligation towards their clients. In these spaces, care is transformed from a technical imaginary, with clearly quantifiable outcomes, to an emotional, social and physical response.

As we have described, retaining clients within the HIV care continuum sometimes required carers to create clear boundaries of professionalism with clients, while in other cases carers responded to the personal needs of their clients by engendering informal, friendly, intimate relationship with their clients. While these carefully negotiated relationships helped retain clients within the care continuum, they could also have consequences for the carers themselves. As other research has shown, the majority of CCWs live in the same communities as those to whom they provide care and often confront similar challenges to the individuals they are meant to be caring for (Fakier, 2014; Mashau, Netshandama, & Mudau, 2014). Further, recent work by Madiega, Jones, Prince, and Geissler (2013) suggests that relationships between carers and clients which transverse formal–informal and professional–personal boundaries come with additional personal responsibilities and sometimes use of personal resources. Similarly, carers in our work often expressed concerns that the personal cost of their care could come at too high a price. In a recent article, Sips et al. (2014) raise the concern that if carers provide care through consumption of their own resources they put themselves, their families and the community at risk and forego any developmental outcomes that might come of their health-care practices.

Further, we argue that these more distributed relational care practices not only affect the caregivers’ own experiences and interactions with their clients, but are essential in order identify and retain HIV-positive individuals across the care continuum. It is crucial that HIV treatment and prevention programmes acknowledge the complex and various forms care takes in places where global health technologies like “universal test and test” meet the context-specific health-care practices of local care providers. Care provision emerges out of complex layers of interactions between the global and the local, the public and the private, and the formal and the informal. Further scale-up of HIV treatment and prevention programmes must consider the increasingly important role that community-based carers provide. In particular, training should be expanded and continuous (responsive to the continuously evolving care context), remuneration should be equitable and performance monitoring be sensitive to the multiple pathways for achieving successful public health outcomes.

Acknowledgments

We would like to thank the community HIV-care providers and community care workers who participated in the research. This research would not have been possible without the support of the social science research team at the Desmond Tutu TB Centre, particularly Graeme Hoddinott. Additionally, this paper has greatly benefited from the insights and comments of both Graeme Hoddinott and Professor Janet Seeley. The first author would also like to thank his colleagues, mentors and supervisors at Stellenbosch University, particularly Dr. Lindsey Reynolds and Mr. Jacob Du Plessis, who supervised this research. The project was generously supported by the Harry Crossley Foundation.

Disclosure statement

No potential conflict of interest was reported by the authors.

ORCID

Dillon T. Wademan http://orcid.org/0000-0003-2222-7401