The experiences amongst caregivers of mental health care users with schizophrenia in the southern-western parts of Johannesburg

Abstract

Due to the global push for deinstitutionalisation, the care of psychiatric patients has been transferred to their family members. Evidence worldwide however suggests that the rate of deinstitutionalisation has not been matched with the sufficient increase of community resources to support both the caregiver and the patient in the community where they reside (Lippi, 2016:1). The conducted study undertook to explore and describe the experiences of caregivers of Mental Health Care Users (MHCUs) with a diagnosis of Schizophrenia in the southern- western parts of Johannesburg. The goal of the present study was to explore the experiences of the caregivers of MHCUs with schizophrenia in the southern- western parts of Johannesburg. A qualitative research approach was utilised to conduct the study. The researcher made use of purposive sampling and semi-structured, face to face interviews were utilised to collect data. Ten interviews were conducted with caregivers of MHCUs in Lenasia South. The researcher however reports on 9 of the 10 interviews due to the fact that the recording device was stolen in the home of the researcher before the recording could be backed up. The findings of the study indicate that the caregivers of MHCUs often do not know the name of the diagnosis and do not understand the diagnosis. Many of the caregivers held the belief that the MHCU was bewitched. The social lives, health and finances of caregivers were negatively affected by the task of caregiving. The study found that caregivers are reluctant to leave the MHCU alone or in the care of other people, because they are constantly worried about their well-being. The study found that caregivers were stigmatised together with the MHCU in their communities. Community resources to support the caregiver and provide psychoeducation are non-existent in the experience of these caregivers. The study found that caregivers had minimal to no experience at all of receiving support from a social worker. The study concludes that the experiences of caregivers are difficult because of the lack of understanding of the illness, a lack of support and psycho-education and a lack of community resources that can aid the caregiver. Recommendations in the study include making a referral to be seen by a social worker mandatory for each case, social workers facilitating the start-up of peer support groups for the caregivers and being intentional about psycho-educating caregivers.