Lived experiences of caregivers with a family member living with a severe mental health condition in South Africa

Abstract

BACKGROUND: In low- and middle-income countries (LMIC) such as South Africa, people with severe mental health conditions (SMHC) typically reside with family members, who serve as their primary caregivers. This study aimed to explore the lived experiences, needs and coping strategies of caregivers with a family member with SMHC in a low-resource setting in South Africa, and their perspectives on the provision of a support group programme. METHODS: An exploratory qualitative study was conducted, which included 22 in-depth individual interviews, 15 of them being females and 7 males ranging from 26 to 72 years of age. These caregivers were recruited through the service user presenting at the health facility. The interview guide covered caregiving experiences, coping strategies, perceptions on recovery, and acceptability of peer-led mutual support groups. Written informed consent was obtained before conducting interviews. Interviews were audio recorded, translated from isiXhosa to English and transcribed. Thematic analysis using NVivo 12 was used to analyze findings. RESULTS: Caregivers reported being socially excluded from family and community gatherings, as well as experiencing financial and emotional hardship because of their responsibilities. This influenced their overall well-being and ability to cope. Inadequate time for their own social activities and fulfilment were frequently described, and this was linked to their level of responsibility for the needs of others in their homes, as caregiving obligations were rarely shared among family members. Although some caregivers had developed ways to cope, such as hobbies and spiritual endeavours, some nevertheless reported less healthy coping strategies, including alcohol use. Whilst most caregivers indicated they would be interested in a peer-led mutual support programme, some said they would not be able to participate because of work or other responsibilities. CONCLUSION: Caregivers of people with SMHC in South Africa face considerable challenges, and supportive interventions are needed. Peer-led mutual support groups may hold the potential for providing this support.