Experiencing and managing work-related challenges by home-based caregivers caring for people living with HIV and AIDS: guidelines for support from a social work perspective

Abstract

With the Acquired Immune Deficiency Syndrome (AIDS), first recognised in 1981 as a new disease that subsequently took on pandemic proportions, home-based caregivers became instrumental to ensure that, notwithstanding the encumbered health care systems, people living with HIV and AIDS (PLWHA) receive care, support and treatment within their households to live prolonged dignified lives. Despite their pivotal role in the field of HIV and AIDS care, there seems to be a dearth of literature, and research locally and internationally, from the ambit of Social Work on the topic of how HBCGs manage and cope with the work-related challenges they experience when caring for PLWHA and their need for Social Work support. Through this exploratory, descriptive, contextual and phenomenological qualitative study, I scrutinised the HBCGs’ experiences and associated challenges and the coping strategies they employ to address these challenges as well as their views on how social workers could support them in overcoming these challenges in the specific case on home-based care to PLWHA. Twenty-five HBCGs were identified and recruited through purposive and snowball sampling techniques from twelve home-based care organisations in South African provinces, namely, North West, Limpopo and Gauteng. Data was collected through individual face-to-face semi-structured interviews using an interview-guide. Data analysis was conducted through Tesch’s eight steps (in Creswell 2014:189) while Guba’s model (in Shenton, 2004) was adopted for data verification. Cast against Loretta Williams’ (2014) middle range theory of caregiving dynamics (Williams 2014), the coping theory of Lazarus and Folkman (1984) and the strength-based perspective (Saleebey, 2013) adopted as theoretical frameworks for this study, the following findings were revealed. The HBCGs were motivated by, among other factors, their mere desire to care for PLWHA; their personal experiences of caring for an ill relative; and future career aspirations to become involved in this care work. HBCGs were found to face various work-related challenges in connection with reactions from community members, the patients and their relatives; their unsafe working conditions; as well as from their colleagues, other role players and their own organisations. It was found that for most of the HBCGs their care work saddened, pained and discouraged them. In the midst of feeling sorry for their patients, they feared getting infected themselves, in addition to their work-related challenges that caused them to experience feelings of failure. The strategies adopted to cope with their work-related challenges included getting support from employers, receiving counselling and becoming involved in support groups. Finally, several suggestions were directed to the management structures of HBC organisations, the HBCGs themselves and social workers on how they could address the work-related challenges. Based on the research findings, some recommendations are forwarded concerning guidelines for Social Work support directed at work practice, policies and programmes; associated education and training endeavours; and continuous professional development initiatives, as well as avenues for further research.