The healthcare system in HIV/AIDS: an inextricable component in the experience of family care

Abstract

Through a phenomenological study following van Manen's approach, family care experiences of caregivers and care receivers in the context of HIV/AIDS were studied in Mumbai, India. Data gathered through conversational interviews were analysed using the holistic and highlighting approaches. Interactions with the formal healthcare system contributed to the essential meaning of participants’ experiences even though the context of care was primarily familial. These interactions included instances of violations of testing and confidentiality guidelines and refusals to provide treatment in the private and some public health centres, and the provision of instrumental and affective support by the voluntary sector. The poor quality of care at public sector hospitals serving HIV-positive individuals was also described. The paper makes recommendations for improving the interventions of the healthcare system since experiences here are linked to the overall subjective experience of caregiving and care receiving.