African Journal of AIDS Research 2009, 8(1): 17–27 Printed in South Africa — All rights reserved Copyright © NISC Pty Ltd AJAR ISSN 1608–5906 EISSN 1727–9445 doi: 10.2989/AJAR.2009.8.1.3.716 Introduction In the era of HIV and AIDS the human body has assumed a multifaceted status in social discourse. Viewed on one hand as an object of medical gaze which requires closer observation to obtain information about the activity of the virus (through indicators such as CD4 cell count and viral load) and information about the epidemic through surveil- lances, and viewed on the other hand as an object that can evoke fear of the risk of HIV infection through contact with bodily fluids, and as something to be avoided, especially if the patient is an individual that matches certain predomi- nant stereotypes about population groups and communities perceived to be at high risk of HIV infection. The imagery of the body permeates all aspects of life in contemporary societies; the overarching values are the ‘attractiveness,’ ‘fitness’ and ‘healthiness’ of the body. An unprecedented focus on the body renders the management of HIV-related illnesses a matter of concern, which both lay people and professionals in various disciplines (especially nutrition and dermatology and physicians) attempt to address with rigour. In Lesotho, a resource-poor country with HIV/AIDS prevalence that is among the highest in the world, the unavailability of ARVs in public hospitals prior to 2004 reduced the capacity of hospitals to admit patients with chronic HIV-related illnesses. Kimaryo, Okpaku, Githuku- Shongwe & Feeney (2003, p. 69) note that due to “the lack of basic medicine and qualified personnel, health facili- ties are struggling to cope with the provision of appropriate treatment and care.” As in other countries in sub-Saharan Africa that situation led to a shift to home-based care (Bindura-Mutangadura, 2000; Akintola, 2006) with home-based care being identified in official documents as an important strategy for responding to HIV and AIDS (Lesotho Ministry of Health and Social Welfare & World Health Organization [WHO], 2002). Undoubtedly, these constraints and changes regarding the locus of care for chronically ill AIDS patients has increased the prominence of the body in caregiving situations, but the ways in which family caregivers experience patients’ bodies has received little attention in Lesotho. The long-term socio-economic consequences of AIDS illness on family wellbeing, the resourcefulness of informal networks in the provision of care, and the burden of care have all been studied. Studies in sub-Saharan Africa indicate that family members experience stress and financial burden as a result of caring for relatives with HIV-related illnesses (Ankrah, 1993; Bindura-Mutangadura, 2000; Baylies, 2002). Seeley, Kajura, Bachengana, Okongo, Wagner & Mulder (1993) argued that as a result of protracted AIDS illness, household resources are eroded and families are burdened as their capacity to provide care is gradually diminished. In most instances family caregivers lack the essential skills, knowledge and emotional support, thus rendering caregiving extremely challenging (Uys, 2003). This occurs because, by The phenomenology of bodily care: caregivers’ experiences with AIDS patients before antiretroviral therapies in Lesotho Mokhantšo G Makoae Human Sciences Research Council, Plein Park Building, 12th Floor, 69-83 Plein Street, Cape Town 8000, South Africa Author’s e-mail: mmakoae@hsrc.ac.za This study provides an account of caregivers’ experiences with the bodily care of AIDS patients before antiretroviral therapies were available in the public health sector in Lesotho. It describes the mechanisms through which the body may become a stressor in caregiving. The phenomenological method, guided by the notion of epoché, was used to understand caregiving experiences from the perspective of family caregivers. Data on caregivers’ physical activities and what they saw and thought were collected through in-depth interviews with 21 caregivers (mostly females); the caregivers were identified with the help of HIV/AIDS counsellors at two hospitals where AIDS patients received medical treatment. The thematic analysis shows that a patient’s body was central in caregiving experiences. Social interaction in caregiving was mediated through seeing and touching the bodies of the patients. The different aspects of caregiving and the close interaction with the body of an ill family member — especially seeing major changes in the patient’s physical appearance, their declined capacity to perform the activities of daily living, and discovering the symptoms of their illness — contributed to the caregivers’ experiences of sympathy and pain. The social meanings and boundaries that tended to persist regarding touching and accessing others’ bodies and bodily matter also contributed to the caregivers’ stress. Keywords: caregiving, chronic illness, HIV/AIDS, home-based care, phenomenological epoché, psychological aspects, social discourse, southern Africa, stress