A ‘double burden’?: Multiple challenges of caregiving and disability in the context of generalised HIV and AIDS in southern Africa
As southern Africa traverses its third decade of life with a generalised HIV epidemic, the social impacts of the disease are becoming increasingly evident. Yet the trajectory of the epidemic and its broader effects are also changing. The introduction of ART in the mid-2000s has increased life expectancy of people living with HIV who are able to access treatment, thus decreasing AIDS-related mortality. For many, HIV has been transformed from a ‘death sentence’ into a chronic disease. However, the limited available data from resource poor settings and experiences from resource rich settings indicate that living longer with HIV is accompanied by the experience of increased morbidity and HIV-related disability. This is the result of both the disease itself and the side effects of treatment, and represents one the most significant ‘secondary’ health-related impacts of the epidemic in the post-ART era. At the same time, the large number of children in need for care as a result of parental mortality, disability and illness, represents what is arguably the greatest social impact of this ‘long wave’ event. It is estimated that almost 90% of the approximately 17 million AIDS orphans world-wide live in sub Saharan Africa, and this figure does not include other orphans as well as the growing number of children who are not orphaned but are still in need of care. The extended family has to date taken in the majority of orphaned children. Though this is generally regarded as a better option for children than institutional care, and may also have some emotional benefits for caregivers, it also means that the costs and stresses of caring are borne by individuals and families. Moreover, this ‘burden of care’ has clear gender and age dimensions, since caregiving activities are predominantly carried out by women, and increasingly by older adults.The experience of both living with a disability and providing care for biological and nonbiological children in the context of HIV could be considered a ‘double burden’, leading to multiple challenges and costs from the perspective of both individuals and social systems. However, little attention has been paid to the particular experiences and needs of caregivers living with a disability in the context of HIV in southern Africa. This commentary will discuss the implications of co-existing experiences of caregiving and disability in the presence of a generalised HIV and AIDS epidemic, and possible responses to these. The discussion and understanding of disability will be guided by the World Health Organisation’s International Classification of Functioning, Disability and Health (ICF) framework, which encompasses both the biomedical and social dimensions of human functioning affected by a health condition.