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Who cares for the caregivers? Addressing the needs of HIV/AIDS caregivers in South Africa

The CWEL+ project

Caregiving of children and adolescents living with HIV

According to UNICEF, South Africa is home to 17 per cent of the global population of children and adolescents living with HIV (CALHIV). Their caregivers, including mothers and other family members, play a critical role in ensuring that their basic needs, such as shelter and adequate nutrition, are met. Caregivers also provide emotional support during key stages of life and treatment.

The ability of caregivers to provide quality care to CALHIV, however, is often hampered by caregivers’ own health challenges, which are shaped by many factors including poverty, stigma, and limited access to social-support services. Adding complexity to the situation, many caregivers themselves live with HIV, and their ability to provide quality care has been significantly impacted by the COVID-19 pandemic.

CWeL+The CWEL+ project

To better understand what supports and interventions would improve health and wellbeing for caregivers and their charges, three investigators are carrying out a pilot trial – Caregiver Wellbeing PLuS (CWEL+) – to evaluate the impact of a gender-transformative economic empowerment programme on participants post COVID-19.

The trial is funded by the International Development Research Centre (IDRC), Canada, and is co-led by Drs. Darshini Govindasamy (Health Systems Research Unit) and Nwabisa Shai (Gender and Health Research Unit) at the South African Medical Research Council, and Professor Angela Kaida at the Faculty of Health Sciences at Simon Fraser University. Collaborating partners include members from University of Exeter, Stellenbosch University, and Project Empower.

A snapshot of the HIV care needs of caregivers of CALHIV

To date, 236 caregivers from the eThekwini municipality in KwaZulu-Natal Province have been enrolled into the CWEL+ trial. Preliminary baseline data have highlighted the high prevalence of HIV and mental health concerns among this group – of the 86 per cent of caregivers who are living with HIV in the study, only 78 per cent are on life-saving antiretroviral therapy (ART) compared to 91 per cent reported in the recent South African HIV national survey. More than half of caregivers (56 per cent) report having depressive symptoms and 60 per cent are living in food-insecure households. The prevalence of intimate partner violence in the past 12 months is considerable with participants reporting experiences of psychological (53 per cent) or economic abuse (39 per cent).

“Whilst South Africa has made great strides in the scale-up of ART, our findings highlight that vulnerable groups such as caregivers living with HIV have been overlooked,” says Govindasamy. “The CWEL+ project will help us understand caregiver barriers to accessing ART and mental health services. This information will be instrumental in supporting the design of caregiver-centred chronic-disease programmes.”

The work of the CWEL+ trial aligns with the 2023 theme for World AIDS Day, which is calling on governments, researchers, and service providers to ‘Let Communities Lead.’

Says Kaida: “The CWEL+ team is proud to work in collaboration with community partners to provide scientific evidence about the potential for gender transformative programming to advance the health and well-being of caregivers.”

The CWEL+ project will continue into 2024 for several more months. Investigators are hopeful that the study will help inform policy and recommend actions that can be taken to address health and economic inequities for caregivers and the youth in their care.

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