The phenomenology of bodily care: caregivers' experiences with AIDS patients before antiretroviral therapies in Lesotho

Abstract

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 epoche, 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.