Managing HIV and Diabetes Together: South African Patients Tell Their Stories

South Africa faces a quadruple burden of disease: HIV, tuberculosis (TB), non-communicable diseases such as Type 2 diabetes and injuries. South Africa has more people living with HIV than anywhere else in the world. Around 13.5% of the country’s total population has HIV.

Many of these patients are co-infected with TB and are also at risk of developing non-communicable diseases. This can be attributed to a massive rise in non-communicable diseases, including diabetes.

Research shows that in South Africa, a growing number of people with HIV are developing noncommunicable diseases – especially among poor populations in low urban socio-economic settings and rural areas.

The increase in the number of people with multiple chronic diseases demands better, integrated and patient-centred care. But the country’s public health system – which caters for most of the population – is overstretched and uncoordinated. Patients accessing care from public hospitals experience longer waiting times, fewer screenings and drug stock-outs.

To get a better understanding of how patients are impacted by the lack of integration in the public health system, I recently conducted an ethnographic study among people living with HIV and diabetes in Johannesburg, South Africa. I wanted to document their experiences of accessing care for multiple chronic diseases. I observed patients as they visited different clinics and went to their homes to observe how they managed their diseases there.

My findings confirm previous research showing that care for patients with more than one disease is fragmented.

The patients I followed often had to make multiple visits to health facilities for each illness they had. This was challenging given that these patients needed routine medical care and treatment for each disease. It cost them time, effort and lost wages.

The situation was exacerbated by socio-economic factors such as poverty, unemployment and food insecurity. These factors made it difficult for patients to manage their illnesses at home.

Chronic care and self-management

My research looked at patients at a public tertiary hospital in Soweto, South Africa. The hospital houses a number of speciality clinics. Patients reported many challenges accessing health services for their multiple illnesses.

The first challenge related to fragmented care at the tertiary hospital. This was partly due to the structure of the tertiary hospital which offers specialised care. Although diabetes and hypertension were managed together in one clinic, patients had to visit other clinics for any other illness that they had:

I attend different clinics … HIV clinic, diabetes clinic and podiatry clinic.

Service providers at the specific clinics rarely collaborated in managing patients. This was attributed to poor communication between the clinics and the lack of a centralised patient information system. As a result, some patients reported receiving conflicting information from different clinics:

The problem is that one doctor will tell you to do this and another asks you to do a different thing.

Some primary health care clinics in Soweto provided comprehensive HIV services. But comprehensive diabetes care was only provided at the tertiary hospital. This was due to drug stock outs and nurses lacking skills in managing diabetes at primary clinics. As a result, many patients with diabetes were referred to the tertiary hospital, though they could easily be managed at primary clinics.

The distance to the tertiary hospital and transport costs were other challenges hindering patients’ access to care. Many patients missed their clinic appointments.

Conducting observations in patients’ homes provided more insights on the difficulty of accessing care and self-management at home.

Poverty, unemployment and food insecurity emerged as key problems. For example, many patients couldn’t afford the recommended diet. Others couldn’t afford a simple meal as described below:

Nobody is guaranteed of eating in our house. We depend on a feeding programme in a nearby public primary school. Sometimes, we miss the food. This is why I have to skip taking my insulin because if I take it [without eating], my body gets weak, I shake and feel like going mad.

In many households, there were at least two people with chronic conditions. At the same time, more than half of the participants were unemployed, while some relied on social welfare grants provided to the elderly by the South African government. The grant was said to be insufficient given that many households were not only poorer but also larger in size. As a result, managing chronic conditions was difficult because of limited shared resources.

Some participants were the main breadwinners or caregivers in their households. They prioritised taking care of other household members, while neglecting their own health.

These findings highlight how social, economic, and medical complexities come together to shape health and illness in Soweto. In other words, chronic diseases such as HIV and diabetes interact with one another in a context of poverty, inequality and inequitable access to healthcare or what has been called “syndemics”. Medical anthropologists have clearly demonstrated that chronic conditions are rarely an isolated problem, but part of a complex mix of biological, social and economic factors.

Adding the COVID-19 pandemic into this mix has made the whole situation even more complex. Unemployment has risen and the Hospital Association of South Africa has warned that many people have been arriving late with very serious health conditions due to concerns around COVID-19 infection during clinic visits.

Strengthening primary healthcare

Stronger chronic care is needed at primary healthcare clinics in South Africa. This can be done by ensuring consistent and adequate drug supplies, sufficient equipment and trained staff. This will ensure that patients get care closer to their homes. In addition, patients need to be educated about self-management at home.

Specialists at tertiary hospitals must engage and communicate among themselves when managing patients with multiple chronic diseases, and engage with providers at primary care clinics. This is important given that some patients may still need to visit both primary clinics and tertiary hospitals for specialised care.

Strengthening communication within the health system broadly, and clinics specifically, is paramount. This is important to ensure that clinicians know when patients visit other clinics and what medicines they are taking. This will minimise conflicting recommendations provided to the patients.

Clinicians could use phone calls or social media platforms to communicate with patients at home. This might reduce unnecessary physical contact during COVID-19 pandemic.

Healthcare providers must understand patients in their socio-economic and cultural contexts. This calls for training clinicians on structural competence and cultural humility.

Lastly, policy makers must address unemployment and food insecurity in South Africa. Moreover, people working on health promotion and disease prevention can collaborate with community networks which have been developed during the COVID-19 pandemic for screening and contact tracing. These networks can help connect individuals facing tough economic situations to existing support groups; or linking the sick to hospitals.

Dr. Edna N Bosire, Researcher, Developmental Pathways for Health Research Unit (DPHRU) & DSI NRF Centre of Excellence in Human Development., University of the Witwatersrand

This article is republished from The Conversation under a Creative Commons license. Read the original article.