Abstract
The lives of caregivers are rarely documented in the literature on mental illnesses
focused on urban centers as Johannesburg, South Africa. As such, not much is known
about the daily struggles of caregivers. This study fills this gap by examining the lives
and experiences of caregivers of persons diagnosed with a mental illness. I focus
specifically on issues relating to caregiver neglect, gender, and the political economy
of care. I further examine issues relating to deinstitutionalization and anthropological
perspectives on caregiving. I identify the support mechanisms available to caregivers
of persons diagnosed with a mental illness and look critically at informal caregivers’
perceptions of the services provided to them in South Africa. The data for this
qualitative, exploratory, and descriptive study was gathered by means of narrative
research, unstructured interviews, in-depth, face to face semi structured interviews,
life histories and participant observation with caregivers of people living with mental
illnesses in Johannesburg (Gauteng), eGcuwa and eDutywa in the Eastern Cape. The
findings for the study suggest that caregivers are prone to burnout and stress that
makes their jobs difficult and unenjoyable. The results of this study show that
caregivers have found diverse ways to cope with caregiver burnout and stress. Despite
the challenges, I observe that some of the participants enjoy their jobs more than what
the existing literature states. Caregivers and the institutions that were visited in this
study highlight that they have major challenges with lack of assistance from the South
African government. Deinstitutionalization shows up as a major current problem in
South Africa and there is an absence of systems to support caregivers.
Deinstitutionalization has proven to not work as seen with the Life Esidimeni crisis, but
caregivers have taken the duty to care for mental health patients upon themselves
without the support of the government. This study of the experiences of caregivers of
people living with mental health presented emergent themes of caregiver neglect and
the political economy of care further advancing a good starting point for the
government of South Africa to address issues relating to deinstitutionalization of
medical and social issues.