‘When do I live?’ What caring for a relative with schizophrenia costs families

When faced with the question, "When do I live?" a 32-year-old man in the Eastern Cape shared his struggles caring for his brother with schizophrenia. The man, who lives in Nelson Mandela Bay, often had to buy necessities on credit to support his brother and other relatives. Schizophrenia, a chronic and stigmatizing mental health condition, affects about one in every 300 South Africans.

While studies often focus on those with the condition, which can be managed with medication and family support, little is known about the challenges faced by their caregivers.

In a study published in BMC Psychiatry, 22 primary caregivers from low-income communities in Nelson Mandela Bay were interviewed about their experiences. The caregivers described their roles as going beyond simply taking their relatives to clinics. They cooked, cleaned, assisted with personal hygiene, and reminded their family members to take medication. They also learned to recognize the early signs of their loved ones becoming unwell.

The researchers found that caregiving for someone with schizophrenia involves much more than medical interventions. Families often have to make financial sacrifices, such as buying necessities on credit, to support their loved ones. The stigma surrounding mental illness can also take a toll on caregivers, who may feel isolated and overwhelmed.

However, the study highlighted the potential benefits of peer-led support groups, where caregivers can share their experiences and learn coping strategies from others in similar situations.