Home is where the health is – but healthcare systems are blind to households on the edge

For the past 17 years, the Durban-based shack dwellers’ movement, Abahlali baseMjondolo, has gathered on 27 April to mourn UnFreedom Day. Each time, they reaffirm that South Africa’s poor households are unfree because (among other things):

“The Commons (including the gifts of nature and culture, which should be accessible to all) have been segregated, privatised and exploited; tens of millions of the country’s residents live without a secure place to call home and raise a family; millions still live without sanitation, water and electricity; and 47% of the country are struggling to find work or have stopped looking.”

Abahlali’s call registers an all-important reality: it is in the everyday life and conditions of South African homes, that our potential to realise the “freedoms” of this youthful democracy is either supported or dimmed.

Among the critical foundations for this freedom is our health. Sickness, along with its social, psychological, and financial consequences, is all too often a poverty trap, deepening inequality, and thwarting intergenerational mobility.

We know, for example, that many of the foundations of children’s future health are set in the first few years of life, through nurturing and nourishment provided at home. Yet, a staggering 65% of South Africa’s children are starting school with developmental disadvantages. A quarter are nutritionally stunted, with increased risk of developing a non-communicable chronic disease (NCD) later in life.

NCDs now constitute nearly 40% of the country’s disease burden, costing families, workplaces, and the health system. In NCDs and Households, one of a series of transdisciplinary briefs about NCDs in South Africa, Percept has illustrated the effect of NCDs on households, drawing from both quantitative and qualitative evidence.

In 2018, 35% of South African households reported that at least one of their members was living with an NCD. When serious and long-term illness arrives in a home, its consequences can span generations – pulling children out of school, keeping adults from work, and straining household resources.

https://www.dailymaverick.co.za/article/2022-04-25-omicron-subvariants-rise-in-prevalence-as-south-africas-positivity-rate-jumps-overnight/

In South Africa, NCDs are accelerating amid ongoing HIV/Aids, TB – and more recently Covid-19 – epidemics. Since the start of the Covid-19 pandemic, we’ve come to know them as “underlying conditions”, deepening our vulnerability to severe illness and death.

Our sickness is both a cause and a consequence of our years of unfreedom. In a 2015 study, the concept of “syndemic suffering” was used to describe how diabetes, depression, grief and violence had collided, and conspired, in a cohort of Sowetan homes. The research participants – older women living with diabetes– described how rebuilding their homes and raising grandchildren in the wake of Aids deaths was not only socially burdensome but also affected how they managed and accepted their diabetes.

This illustrates the permeability of biological and social dis-ease. These women understood diabetes as the outcome of a range of household “stresses” interpersonal abuse, concerns about children and grandchildren, familial death, and financial strain – all of which also made it more difficult to stay healthy.

In a similar vein, and as the Percept briefs illustrate, thinking about NCDs through the language of “underlying conditions” may not only be pertinent in the biological sense, but also in the social sense since their development is rooted in the conditions of everyday life – how we eat, move, play and work. Percept’s NCDs and Households brief explores how NCDs collect in homes, driven by shared genetics, traumas, and environmental exposures; as well as long-established practices of consumption, celebration, and survival.

South African survey data suggests that the larger the household, the greater the proportion of members living with an NCD. This might be because larger households must spread their resources more thinly, making it difficult to stay well. It may also be that larger homes have more children, producing a significant caregiving burden for older adults, who are also most at risk of NCDs.

What seems clear is this: because of the social, psychological, genetic and material ties between household members, one individual’s health is often related to the health of those they live with – and their capacity to care, and be cared for, by them.

Anthropological research among Batswana households, for example, has revealed complex interrelationships between adult hypertension and paediatric HIV. Children’s HIV illness could put extra strain on their hypertensive caregivers, while caregivers’ hypertension compromised their ability to support children’s medication adherence. Despite this, hypertensive caregivers and HIV-positive adolescents were treated as distinct entities in public health facilities whose cases were only incidentally related to one another.

Our health systems are often blind to households – they only see individual patients. Yet, one thing is plain: the future of healthcare (particularly for NCDs) will succeed or fail at the level of the home. Household caregivers – predominantly women– have shouldered South Africa’s HIV/Aids, NCD and now Covid-19 care burden, but remain undervalued, even exploited. It is also in the home where the bulk of chronic illness management – including medication taking, nourishment and vital-sign monitoring – takes place.

The home can be a source of sustenance, safety and connection that fortifies our future health. Yet many of South Africa’s households are living precariously on the edge, struggling to maintain already-fragile forms of household viability. We dare not overestimate or romanticise their resilience – these households need our attention and support.

Through its brief on NCDs and Households, Percept is calling on healthcare providers, researchers, policymakers and practitioners to look beyond narrow individualism and instead pay attention to the webs of care and interrelatedness in which our health – and our freedom – is nested. DM

Dr Beth Vale is an applied anthropologist, public health specialist and social development consultant. As a consultant at Percept, she conducts and translates health research, driving advocacy, policy and programming that are attuned to social and political complexities, and oriented to social justice.

Emma Finestone is an actuarial science graduate currently completing her Master’s in Public Health at the University of Cape Town. Her extensive research and modelling experience includes working on resource allocation models for the National Treasury and Western Cape Government Health, as well as modelling the burden of non-communicable disease and the cost of cancer. She works as a consultant at Percept.