Women Living with HIV in India: Looking up from a Place of Stigma, Identifying Nexus Sites for Change

Abstract

Current knowledge • For people living with HIV infection in India, stigma is a pervasive reality and the greatest barrier to accessing treatment, quality of life and survival. • However, women and men experience stigma differently. Despite typically contracting the disease through marital sexual relations, married monogamous women are also subject to stigma resulting from moral blame. • Stigma affects women both in public spheres of social relationships and in private through psychological stresses. These spheres are typically considered in isolation not as interrelating. Novel information • In order to go beyond consideration of discrete public and private arenas of stigma, this paper applies Engel's biopsychosocial model on chronic disease experience as promoting an understanding of the effects of illness on women across their biomedical, social and psychological life arenas. Use of Engel's approach resists binary separation of private and public experiences of HIV related stigma and encourages care responses to address a whole-of-life continuum. • By gaining information from particular groups of HIV-positive women about the whole-of-life situations where they experience stigma related constraint, inter-relationships between stigma sites can be mapped and specific root causes of marginalisation identified. • In the complex context of establishing programs of care for women living with HIV, arranging qualitative information on lived experiences in such a way as to identify interacting barriers to care, can assist in tailoring multifaceted HIV-care programs that address the particular needs of specific groups of women. Such customised programs would embody dual objectives: 1) to respond to the women's own identified and prioritised needs across biomedical, social and psychological arenas in a coordinated manner, and 2) to work to reduce stigma as a barrier to care. ABSTRACT 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.