Eastern Cape Families Struggle with Schizophrenia Caregiving Burden

Family members frequently bear the primary responsibility for supporting individuals diagnosed with severe mental illnesses. Researcher Bongwekazi Rapiya highlights that the impact extends far beyond financial strain.

Family members are often the ones who care for those living with severe mental conditions such as schizophrenia, which causes delusions and hallucinations. Studies often focus on those who have conditions like schizophrenia, which is estimated to affect about one out of every 300 South Africans. But a study of those who care for people with severe mental conditions in the Eastern Cape found that many are struggling financially and emotionally.

A Question of Survival

“When do I live?” A 32-year-old man in the Eastern Cape asked us this question while crying as he described taking care of his younger brother, who has schizophrenia. The man was talking about the sacrifices he makes for his brother and the other relatives he supports. Winter was coming, he said, and he needed to buy things for them. Sometimes, he has to buy necessities like food and clothing on credit.

“I sacrifice stuff for my siblings,” he told us. The question of when he might live for himself became a refrain that echoed through interviews with 22 primary caregivers in Nelson Mandela Bay, a region in the Eastern Cape. The interviews, published in BMC Psychiatry, revealed a pattern of deferred dreams and constant strain.

Schizophrenia, a chronic and highly stigmatized mental health condition that changes how people perceive reality, is managed through medication and family support. But the policy shift in South Africa toward community-based care has placed immense pressure on families. When a relative’s condition worsened—when they didn’t take their medication and wanted to hurt themselves or others—some caregivers described needing an ambulance or the police to get the person to hospital.

The Burden of Care

The people interviewed often mentioned that caregiving was not shared equally among family members. Some said they were largely responsible, with little or no assistance from relatives, while also managing other responsibilities like food, transport, and medical supplies. This isolation was compounded by stigma.

Defining Recovery Beyond Symptoms

Interviews revealed caregivers envisioned recovery as stability and independence for their loved ones. One woman described wanting her relative to secure employment and build a family, reflecting a desire for normalcy. “I want him to work, because I also want him to have a wife and children and all of that, the normal life I know,” she said.

Caregivers’ Personal Struggles and Coping Mechanisms

Interviews revealed that caregivers often felt their personal lives shrinking under the weight of their responsibilities. Many reported having less time for socializing, resting, or engaging in activities that brought them joy. This isolation was compounded by reduced contact with potential support networks, as mental illness stigma limited their community participation. South Africa’s mental health system remains under-resourced, particularly at the community level, leaving families to fill critical gaps in care and support.

Support Systems and Policy Needs

The study emphasized the need for mental health policies to address systemic gaps. Collaboration between government and community organizations could improve access to resources. Financial support and income-generating opportunities for caregivers were identified as essential needs.