Perspectives from Fieldwork and Observation: Development of a first-generation comprehensive patient-centered mHealth system for patients newly diagnosed with HIV
Nadya Kronis
The formative research component of the study took place in the local municipality of the City of Matlosana in Northwest Province, South Africa. The team that I was part of conducted formal interviews with providers (16 nurses and 12 physicians), one from each clinic where possible, and 9 patients. The goal of these interviews was to gauge providers’ and patients’ thoughts and feelings regarding a patient-centered mHealth platform, intended to improve the HIV continuum of care by reducing the number of patients lost-to-follow-up, or who test positive for HIV and don’t return to the clinic for their CD4 counts or treatment initiation. We interviewed patients and healthcare workers at public clinics about their thoughts on the state of HIV care at their clinic and about what could make a mHealth intervention successful.
As the anthropology student on the team, I shadowed nurses & research staff from the Perinatal HIV Research Unit (PHRU, based in Baragwanath Hospital, Soweto) at Jouberton Clinic and assisted with conducting formal provider and patient interviews.
Brief Summary of Study
Social Determinants of HIV in
Post-Apartheid South Africa
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The populations most affected by the South African HIV epidemic are the same ones that were segregated, resettled, and disenfranchised under the apartheid regime. South Africa’s history of colonial exploitation and racial segregation has left the nation with deeply entrenched social inequalities--black South African populations experience much more social violence and economic instability, leaving them more vulnerable to HIV infection.
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South Africa Unemployment Rate 2013: 25%; Black Unemployment Rate 2014: ~40%; White Unemployment Rate 2014: ~8%; Youth Unemployment Rate 2015: ~63%
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~60% of SA’s unemployed live in townships and IS (World Bank Report 2014)
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Non-linear relationship between income and HIV prevalence--HIV rates are higher in urban and peri-urban townships and informal settlements (IS) than in poor rural areas--suggesting that distinct forms of social and political violence characterize life in these areas. High levels of poverty, unemployment, mobility, dependence on mines, and gender violence leave residents of townships at high risk of HIV infection (Fassin 2003).
Observations from Fieldwork (Jouberton Clinic)
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Limited resources and understaffing are common
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One of the primary complaints of the nurses. When the ARV-initiation nurse took a sick day, there was a backlog of patients--some of whom had been waiting since the day before.
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Many staff perform several different jobs--not uncommon for one nurse to collect data for a study and counsel patients, in addition to nurse duties.
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Some days, there were no gloves at the clinic and staff had to draw blood without them.
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Lack of confidentiality
- On a day that the clinic was short on staff, two people were initiated on ARVs in the same room, close enough that they figured out that they shared a birthday and joked about it.
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One patient in our focus group noted that she commutes to Jouberton Clinic because at the clinic in her township, the staff gossips about patients.
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Paper record-keeping system
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Patients responsible for bringing their own medical records, written in a notebook, to the clinic with them. When a patient moves or changes clinics, they must bring this notebook, since it is difficult to locate and send the patient file kept at the clinic.
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Young people increasingly dependent on surviving grandparents’ pensions & on networks of lovers for economic & social security. Fassin describes this gendered strategy as “the practice of survival sex,” or young women in the townships using “their bodies as an ordinary economic resource outside the context of prostitution but within the culture of male violence” (Fassin 2003). Multiple partners may also help “provide consumption goods,” such as groceries, in the context of informal settlements (Hunter 2010; 141).
Informal Settlement outside Johannesburg,
along N12 highway.
Life at Tshepong Hospital
Tshepong Hospital gate; Posing with Shingo, a PHRU researcher. Photo credit: Sarah Cox
The staff of Tshepong was very helpful and generous with their time, helping us with everything from directions and transport to giving us feedback on our work. Through the hospital’s connections to the local clinics, we met many nurses and researchers who volunteered their free time to do everything from talking to us about their work to showing us around local mines.
In many ways, South Africa, (a BRICS nation) is difficult to classify as “a developing country,” or place in the same category with many of its Sub-Saharan neighbors, but the degree of socioeconomic inequality is severe enough that different parts of the country seem like different worlds.
Even across very short distances, such as the boundary between the black township of Jouberton and the primarily Afrikaans town of Klerksdorp, the differences in quality of life, public institutions (police, education, etc) were drastic.
Living in Jouberton meant having limited mobility, since the nearest supermarkets and shops were outside the township, and walking around as an obvious foreigner with zero fluency in African languages was inadvisable. However, I’m glad that we ended up living in the student dormitories of the township’s public hospital instead of in a guesthouse in town. It gave me a much better sense for the rhythm of life at the hospital and living in the town would have compounded my sense of being completely removed from the life of the township in which we worked.
At Jouberton Clinic, I was very impressed with the tenacity and energy of staff as well as that of the patients (all of whom waited for hours, and some of whom were children bringing their even younger siblings into the clinic). The clinic and the community amazingly manages to restore some normalcy to life in a crisis situation.
The Fight for Policy Change
A number of NGOs, TAC (Treatment Action Campaign) among them, are calling for the introduction of a Chronic Disease Grant, which would alleviate some of the costs of living with HIV for the poor and the unemployed. Unlike the disability grant, which creates perverse incentives to default & re-initiate treatment, it would not terminate with an improving CD4 count, since HIV requires lifelong treatment. Public health professionals looking to improve loss to follow-up and default rates should support these social and political efforts.
Structural Barriers to Care: Lost to Follow-Up & Default
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According to a nurse I spoke to, most of her patients who were lost to follow-up or defaulted on ARVs and needed to reinitiate were single mothers informally employed as domestic workers who could not get days off to come to the clinic due to fear of losing their jobs.
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Disability Grant Policy: ARV adherence is powerfully influenced by welfare/social grant policy. HIV patients are eligible for a disability grant which can be terminated when the recipient's CD4 count exceeds 200 (the legality of this practice is unclear). It becomes rational for unemployed patients to default on their treatment when they are forced to choose between their food & housing security and their HIV treatment. Prior to 2013, the CD4 count necessary to initiate ARVs was 200--the same as to receive the grant. Since then, the CD4 necessary to initiate ARVs has been raised to 500, which makes this trade-off less extreme, but does not do away with it.
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Strong likelihood that it still affects patients’ decisions to default: The story of one unemployed patient we interviewed, who was re-initiating ARVs following multiple defaults and previous re-initiations, nearly perfectly matched the timeline and target CD4 counts for receiving the disability grant.
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Hunger
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Preventing hunger & treating HIV are inextricable issues. ARVs cannot be taken on an empty stomach and 25% of South Africans “suffer hunger on a regular basis” (Oxfam International 2014).
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In formal interviews, patients mentioned that taking ARVs meant incurring additional food expenses.
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In conversation, a nurse told us that for Mandela Day, his clinic was planting a garden for an orphan with HIV so that she would have enough to eat, and proceeded to recount his own experience with hunger as a young adult.
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Street mural in Maboneng, Johannesburg