Surviving but not thriving: Burden of care and quality of life for caregivers of patients with schizophrenia spectrum disorders and comorbid substance use in South Africa

Background Schizophrenia and schizophrenia spectrum disorders can be devastating for the patient and family. Early recognition and interventions for caregivers, who form part of an overburdened 'invisible health care system' in resource-limited settings with an extensive mental health treatment gap, are crucial for improved outcomes for patients and carers. The study investigated the burden of care and quality of life (QOL) among caregivers of patients with schizophrenia spectrum disorders and its determinants in South Africa. Methods We conducted a study of 101 matched-paired samples of family caregivers and adult patients (N = 202) seeking care from two psychiatric hospitals in South Africa. The assessment consisted of the Zarit Burden Interview for caregiver burden, WHO-Quality of life scale and WHO ASSIST for substance use. Results Most caregivers (n = 81; 80.2%) reported high or severe caregiver burden. None of the four QOL domains surpassed the 60% mark where the observed scores (out of 100) for physical health (56.2, SD = 16.2), psychological health (55.3, SD = 17,6), social relationships (47.1, SD = 19.3) and environment (53.5, SD = 16.3). Lower burden was associated with greater QOL score across all four domains among caregivers (p <= .05). Lower educational attainment was associated with poorer QOL, and higher household income with higher QOL in certain domains. Patient comorbid alcohol (p <= .05) and high-risk cannabis use (p < .02) were the only significant factors of increased caregiver burden scores. Conclusion The high caregiver burden, and its association with alcohol and cannabis use, suggests the need to address comorbid substance use and early pragmatic support for families.