RESEARCH

Examining HIV Positive Indian Women's Perceptions of Support

Women represent some of the first recognized cases of AIDS and constitute over fifty percent of those infected globally, but analytical research finds women’s journeys with HIV largely underrepresented in scientific literature (Peterson, 2004). In India, about 2.40 million people are living with HIV, and 39% of these people are women (Kermode, Holmes, Langkham, Thomas, & Gifford, 2005). Additionally, approximately 49,000 women living with HIV become pregnant and deliver each year (Madhivanan et al., 2014). And as the work of global health research showcases, HIV positive people face appalling discrimination; even medical personnel refuse contact with HIV patients (Kermode et al., 2005). Such rejection negatively affects the physical, sociological, and psychological well-being of the person. The focus of my research is to better understand these women’s experiences and perceptions about the social networks they utilize to deal with repercussions of this disease. In other words, in response to the burdens and stigmas surrounding their HIV positive status, on which support systems do these women rely? Who constitutes these networks? Do all women have equal access to reliable support? Why or why not? Ultimately, how do these networks provide support?

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First, society perpetuates social stigma. Positive women realize the prejudiced stigmas surrounding HIV, decide to delay medical care, limit their social interaction, consequently report low levels of social support, and the psychological cycle continues (Peterson, 2004). Yet, Peterson suggests that social networks are crucial for the overall health of HIV positive persons. Women are more likely than men to seek emotional support, but depression, anxiety, lower levels of well-being, and lower qualities of life are repeatedly higher in HIV positive women than in their HIV positive male counterparts. Furthermore, HIV positive mothers are the population at greatest risk of developing mental illnesses, which stresses the increased need for women to have reliable support systems. This research does not exist to disparage or discredit the troubles of HIV positive men; it only highlights the disparities in men and women’s experiences. In her research, Peterson categorizes five facets of social support: emotional, informational, network, tangible, and esteem. Ultimately, social support is the greatest resource for disadvantaged women. Epidemiological research confirms such notions: social relationships produce notable effects on the human immune, endocrine, and cardiovascular systems. Social support decreases the biological need for medication, works to reduce stress, promotes adherence to health regimens, alleviates side effects of illnesses, and increases patients’ motivations to self-advocacy. Moreover, sociological community studies yielded results suggesting that women who receive support are also more likely to give it, which could provide increased support within the HIV community. HIV diagnoses alter every aspect of a woman’s life, and so social support is an instrumental asset in maintaining her optimistic mindset.

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In subsequent research on which features of social networks are important for HIV positive women’s mental health, McDowell (2009) found interesting results. The number of relationships in a support network does not necessarily have a significant bearing on a woman’s mental health. Instead, high-density—close-knit—relationships play a larger role. Her research also noted that women with strong support from their spouses report consistent care in cases of chronic illness. The greatest factor of social networks for HIV positive women, however ironic, was the number of females present in the social network. Despite mixed research, a higher proportion of women in a given network is associated with lower levels of depression, in part because women provide the majority of support in the HIV and AIDS communities. Women found beneficial properties in women-women support relationships despite race, lack of familial ties, or proximity (McDowell, 2009). Cederbaum, Rice, Craddock, Pimentel, and Beaver (2017) confirmed such findings. The value and type of relationship with network members is linked to more support than the number of members in the network is, stressing the importance of close-knit relationships. Interestingly, network composition is reliably related to mental health: women with high proportions of medical personnel in their support networks report high levels of depressive symptoms, while women with a large proportion of other HIV-positive members report fewer symptoms (Cederbaum et al., 2017). These findings implicate the detrimental consequences of isolation among HIV positive women. Women living with HIV find distinctive support in other HIV positive women.

Evidently, social support is necessary for women with HIV, and women represent a population in need of increased encouragement because of their disease (Ciambrone, 2002). HIV continues to be surrounded by discriminatory stigma, but other factors equally challenge the lives of HIV positive women. First, women face increased biological complications because of the retrovirus. Other health complications often coexist with the HIV infection. Second, such a diagnosis often drives the women to find meaning in their own lives, restore their self-esteem, and gain control over their health. Ciambrone (2002) found that initial support over the course of the chronic illness may decrease, and so women seek informal networks outside of established organizations. Generally, women find the most emotional support in their parents—particularly their mothers, in their children, and in their significant others. This is not the case, though, for communities of intravenous drug users who need structured and rigid support networks. Informal networks may hinder the positive growth of the woman. In all, as the aforementioned data suggest, an HIV diagnoses involves unequaled changes in a woman’s life. No other disease is comparable in status to HIV and AIDS. The unrivaled facets of this disease—heavy social stigma coupled with psychological implications, sociological variations, and biological complications—make HIV positive women particularly vulnerable. 

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In India in the last twenty years, women were the population with the fastest growing rates of HIV infection (Majumdar, 2004). Despite the rampant rates of HIV infection in the Indian population, the literature on HIV positive women is limited. The country—like many others—is widely rural and developing, posing limitations in women’s healthcare accessibility. Moreover, Indian women face challenges not faced by any other populaces because Indian culture is inextricably intertwined with the Hindu religion and the caste system. Culturally, Indian women lack the power to make autonomous decisions, face limited access to education, experience gender inequality in many realms, practice little authority over their sexual relationships, and live with double standards surrounding their sexuality (Majumdar, 2004). Each of these influences may divert women from disclosing or seeking information about their HIV diagnosis. But, precise correlations between these extraneous factors and women’s HIV statuses are nebulous and unknown.

In hopes of adding to the limited body of knowledge on Indian HIV culture, Majumdar (2004) conducted an intimate analysis of the lives of ten HIV positive women in India. Her study yields several harrowing conclusions. First, poverty and sexual violence were two key contributors to the women’s HIV statuses, where sexual violence was either categorized as rape or as forced prostitution. Considering India is a developing country with rigid gender roles, these findings are unsurprising—but nonetheless revolting. Second, emotional anguish was endemic: the women all reported feelings of sadness, depression, loneliness, isolation, anger, or resentment to the researchers. One woman uttered, “Life is miserable and dark for me.” Third, particularly in response to the theme of isolation, few women expressed support from social networks, their families, or community members. The majority of women faced perpetual loneliness. The previous research highlights the need for consistent support for HIV positive women, but the present study suggests that Indian women—who are often disadvantaged—seem to lack such networks. For an HIV positive woman, receiving support in India is uncertain. But, the following is clear: support is an indispensable factor of women’s health. Again, my study seeks to further understand the complex, dynamic roles of social support in the lives of HIV positive women.