Families in South Africa bear the cost of caring

Families in South Africa shoulder the majority of the care for relatives with severe mental illness, a responsibility that extends far beyond medical appointments. Bongwekazi Rapiya, a researcher at the South African Medical Research Council, examined the lived experience of these caregivers in the Eastern Cape and found that the burden is both financial and emotional. The study, published in BMC Psychiatry, involved 22 in-depth interviews with primary caregivers in low-income communities.

A life defined by sacrifice

One 32-year-old man in the Eastern Cape described the situation in stark terms. He asked, “When do I live?” while crying, detailing the sacrifices required to support his younger brother with schizophrenia. The man explained that he often buys necessities like food and clothing on credit to keep his household running.

He said, “I sacrifice stuff for my siblings.” The question lingers as a reminder that while medical statistics focus on the prevalence of the condition—estimates suggest about one in 300 South Africans live with schizophrenia—the reality for caregivers involves constant, often invisible, compromise.

People living with schizophrenia experience psychosis, including delusions and hallucinations. Managing this involves more than taking medication; caregivers cook, clean, assist with hygiene, and monitor for early warning signs of deterioration. When a relative becomes unwell, some caregivers must call for police or an ambulance to prevent harm.

For many, the definition of recovery centers on their loved one achieving independence. They hope the relative will find employment, contribute to the household, and form relationships. This would, in turn, allow the caregiver to regain time and freedom, escaping the cycle of constant stress and responsibility.

However, the load is rarely shared equally. Some caregivers are unemployed and rely on social grants or pensions, while others support extended family members. Older individuals often care for unemployed adult children while managing the needs of a relative with a severe mental condition. One caregiver noted that support rarely materializes, saying, “No one will want to come help you, it becomes your own burden.”

This isolation is compounded by stigma. Some caregivers avoid family gatherings or community events because they fear judgment from neighbors who associate them with their relative’s condition. One participant described avoiding paying respects to grieving neighbors because people would point and say she came from a “mad people house,” assuming she shared the illness.

The strain of this isolation can lead to harmful coping mechanisms. When stress becomes overwhelming, some caregivers described feeling like their veins were throbbing and turning to painkillers or alcohol to sleep. Others turn to exercise or faith, but the gap in available support services leaves many feeling they are coping alone.

Support groups offer a potential path forward. Most caregivers interviewed expressed interest in peer-led support groups where they could share advice and resources.

Designing care around real needs

Caregivers possess vital knowledge about their relatives’ conditions. They recognize early warning signs before crises occur. They understand what helps the person and what makes symptoms worse. They also know where the gaps in services exist. This local insight should inform the design of community mental health services.

The study focused on townships in Nelson Mandela Bay. It cannot claim to represent every caregiver in the country. The interviews provide a perspective. They offer the voices of those living the reality of care daily. This includes a woman with little time for herself.