For women living with HIV infection in India, stigma is a pervasive reality and the greatest barrier to accessing treatment, quality of life and survival. Defining stigma according to Goffman as a socially conceived abnormality, this paper then draws on Engel’s biopsychosocial model for chronic disease to show the pervasive nature of stigma as a continuum affecting all dimensions of life for married, monogamous Indian women with positive HIV sero-status. Two distinct perspectives were identified in the literature: 1) Public: social and relational stigma, or 2) Private: internalised psychological stigma. Only four of the twenty published works reviewed noted interrelationships between these public and private spheres. Only one of those employed an ethnographic methodology to understand stigma from the perspective of the women themselves. While concepts associated with stigma among women living with HIV are diversely employed in research, by considering them as a whole through an intersectional biopsychosocial lens, this paper attempts to provide a basis for implementing integrated and tailored responses. Once the manifestations and interconnected causes of particular groups of HIV-positive women’s marginalisation are identified from their perspective, corresponding HIV-care programs and research activities can be designed. Such programs can be tailored with dual objectives: 1) to respond in a coordinated manner to the particular women’s own identified and prioritised daily needs across biomedical treatment and social and psychological support, and 2) to work to promote change in social constructions of stigma that form barriers to care.
Wendy E Short and Bilkis Vissandjée