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AIDS among women of reproductive age in the slums of Delhi and Hyderabad, India
Social Science & Medicine 68 (2009) 638–642
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Social Science & Medicine journal homepage: www.elsevier.com/locate/socscimed
Vulnerability to HIV/AIDS among women of reproductive age in the slums of Delhi and Hyderabad, India Jayati Ghosh a, *, Vandana Wadhwa b, Ezekiel Kalipeni c a
School of Business and Leadership, Dominican University of California, 50 Acacia Avenue, San Rafael, CA 94901, United States Boston University, Boston, MA 02215, United States c University of Illinois at Urbana Champaign, Champaign, IL 61801, United States b
a r t i c l e i n f o
a b s t r a c t
Article history: Available online 13 December 2008
This report explores how vulnerability to HIV/AIDS applies to women in the reproductive age range living in the slum areas of Delhi and Hyderabad. The paper is based on a qualitative study of AIDS awareness levels conducted during the summer of 2006. It offers insightful narratives from a sample of 32 women, providing an in depth view of their vulnerability to HIV/AIDS due to their precarious socioeconomic conditions and low AIDS awareness. The women cited lack of education, low empowerment in expressing and accessing information related to sexual matters, and poverty as key factors to vulnerability. Ó 2008 Elsevier Ltd. All rights reserved.
Keywords: India HIV Vulnerability Women of reproductive age Slums Contraceptive methods
Introduction According to the National AIDS Control Organization (NACO), India, high levels of social and economic vulnerability have led to greater feminization of the HIV/AIDS epidemic in India, with women comprising 39 percent of all HIV/AIDS cases, currently estimated as 2.5 million (NACO, 2007a). Reasons for women’s vulnerability to HIV/ AIDS are manifold, and embedded in their socioeconomic and cultural context. Taboo and cultural norms create vulnerable environments of early marriage, lower literacy, lower awareness about sexually related aspects and HIV/AIDS, and lower autonomy over economic resources and reproductive/sexual behavior than men (Abraham, 2002; IIPS & Macro International, 2007; Jejeebhoy & Sathar, 2001; NACO, 2007a; Pradhan & Sundar, 2006; Williams, 2005). Such literature on women and HIV/AIDS has established that socioeconomic factors create an environment of risk to HIV/AIDS. The current study is significant in its ability to expose the mechanisms behind these aspects of vulnerability to HIV/AIDS for women residing in the slums of Delhi and Hyderabad arising not only from their precarious socioeconomic conditions but also from their lack of AIDS awareness. Study context Hyderabad (capital city of the state of Andhra Pradesh in southeast India) and Delhi were selected for this study because * Corresponding author. Tel.: þ1 415 485 3238; fax: þ1 415 459 3206. E-mail address: [email protected] (J. Ghosh). 0277-9536/$ – see front matter Ó 2008 Elsevier Ltd. All rights reserved. doi:10.1016/j.socscimed.2008.11.023
they present relatively contrasting HIV/AIDS prevalence and awareness level scenarios. During 2005–06, Andhra Pradesh (AP) had a seropositivity rate of 1.26 percent at antenatal clinics (ANCs)dhigher than in any other state in India. General population prevalence was 0.97 percent, 0.75 percent for women, second highest in the country. Hyderabad itself has been classified as an HIV hotspot, with 2 percent seropositivity among women attending ANCsdthe corresponding figure for Delhi stands well below 1 percent (IIPS & Macro International, 2007; NACO, 2006, 2007b). However, Delhi, categorized as a low prevalence area, has been experiencing rapid increases in infections in high-risk groups such as men having sex with men (MSMs) and intravenous drug users, with more than 5 percent seropositivity in these groups. Therefore, Delhi has been categorized as a ‘highly vulnerable state’ and an emerging HIV/AIDS hotspot (Delhi State AIDS Control Society, 2005; NACO, 2007b). Both cities are major administrative and economic hubs with attendant resources to undertake AIDS awareness and prevention programs. However, AIDS awareness levels were higher in Delhi (93.5 percent in 2005–06) than in Hyderabad, where it was 80.6 percent in 2004 (Sudha, Vijay, & Lakshmi, 2005; IIPS & Macro International, 2007). The conceptual framework for this research focuses on vulnerability as described through poverty, gender and power relations, which puts women in the reproductive age range at greater risk of contracting HIV. In utilizing this framework, we draw upon the works of Sen (1990) and Watts and Bohle (1993) that introduce the concepts of entitlement and empowerment. The central argument of this framework is that unequal power relations and differential socioeconomic entitlements between men and women ultimately
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result in vulnerable situations for women throughout the developing world (also see Oppong, 1998). It is in this context that we situate our study on women and their precarious position with reference to vulnerability to HIV/AIDS in the slums of two cities in India. As the study results show, the pathways of vulnerability that work against the welfare of women are numerous: the compromised ‘entitlement bundles’ for women, we argue, have increased their vulnerability to HIV/AIDS. The results in this study support this conceptualization. Methodology This study was conducted in July–August 2006 by the second author, with permission from the Health Departments/Wings of the respective cities’ Municipal Corporations. Most health needs of slums residents are served by Health Posts or reproductive and child health clinics set up by the city’s Municipal Corporations. These entities, responsible for the welfare of the population of the survey sites, reviewed the questionnaire and granted her permission to conduct the survey. Additionally full informed consent was obtained from the participants. The study follows the Ethical Guidelines for Social Science Research in Health laid down by the National (Indian) Committee for Ethics in Social Science Research in Health (see NCESSRH, 2000). Unstructured interviews were used to gather information from 32 women of reproductive age (15–49 years) after obtaining their informed consent, and false names were assigned to protect their identities. Participants were recruited using the maximum variation technique categorized across age, marital status, and apparent socioeconomic standing. Participatory observation was also conducted to gather information on the general physical and cultural environment of the communities. The study protocol included questions on socioeconomic and demographic aspects, dynamics of HIV/AIDS awareness, and decisionmaking power regarding healthcare, among other questions. Participant interviews from Delhi were conducted in Hindi, taped and transcribed verbatim. Interviews in Hyderabad were conducted in Telugudfield notes were relied upon due to the distrust and reluctance on part of the participants to be taped. Interviews were often difficult to sustain when specific questions on HIV/AIDS were asked, and were completed through persistence and careful maneuvering of the conversation. Interviews were then coded and classified into themes according to which the present analysis is presented. The slum sites were chosen in consultation with faculty from each city’s project-partner university (Delhi University and Osmania University) using basic criteria of access, and differences in health information coverage by government/NGOs and in relative socioeconomic conditions. Therefore, an attempt was made to capture diversity in the two slums of each city. Despite repeated attempts to find participants who would talk about AIDS awareness, efforts yielded only five participants from the first slum cluster of Patrachar/Sanjay Basti (Timarpur area). Therefore, still adhering to the selection criteria, interviews were conducted in two more slums: Autram Lines and Birla Basti, both in Kamalanagar. Patrachar/Sanjay Basti has a population of 1410 (data provided courtesy of Dr. Gurpreet Singh, Ministry of Health and Family Welfare, and for Hyderabad by Prof. Kalpana Markandey of Osmania University) and is a typical slum/squatter areaddensely populated, with housing constructed with a mix of permanent and semi-permanent materials. A number of female sex workers (FSWs) lived here, but were segregated to a separate street. This segregation presented an ethical dilemma; we would alienate ourselves from the general community if we ventured to those areas. We decided against it for three reasons: to avoid the alienation, avoid including participants who might have to be classified
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as ‘‘high-risk’’ population, and to avoid the imposition on the FSWs who had only the day time to cater to their households. The Autram Lines/Birla Basti (population of 2400) areas were relatively cleaner, although the latter had seen better days when it served as official housing for mill workers. In Hyderabad, the slums of Wadderbasti (Fatehnagar) and Addagutta (East Marredpalli, Secunderabad) had extremely unsanitary conditions. Addagutta was relatively worse off, both in physical and socioeconomic terms. Wadderbasti (population approximately 1,926 in 2005) had a segregated section to which FSWs and known persons living with HIV/AIDS (PLWHAs) were relegated. According to some residents, about 25 percent of their slum community was affected by HIV/AIDS. Addagutta is one of the largest slums in Asia, with a population of 16,354 in 2005. Built on a hillside, it is segregated into two parts, one predominantly Muslim, with a mosque serving as its hub, the other predominantly Hindu. The housing materials are mixed, but mostly comprised ‘‘kachha’’ (degradable) and semi-permanent materials. Thematic analysis and findings HIV/AIDS as a taboo subject and the lack of female autonomy In our study, participant narratives and conversations clearly highlighted the fear of discussing issues of sexuality, AIDS as a taboo subject and the general lack of female autonomy. Apart from lack of time or absolutely no knowledge of AIDS, the taboo nature of the topic greatly affected participation in both cities, 8–10 potential participants had to be asked for an interview before one was willing to speak about the issue. Taboo presents a great impediment towards acquiring complete and accurate information, leaving many of these women at risk of exposure to a rapidly spreading disease best tackled by precautionary and preventive measures. In the context of our study, mechanisms through which taboo created vulnerability to HIV/ AIDS were: Inhibiting communication, even between parents and children ‘‘They don’t talk about such things [HIV/AIDS] here, no one. They [young girls] should ask and tell each other as well, but no one out here talks about it; if we get to know [about AIDS] then at least we will also be more careful. I’m getting married too. My mother doesn’t know anything about this. She knows, but not so much that she can talk openly about it, and we don’t even talk about this ever. We feel so shy that we don’t even talk about that [HIV/AIDS] much.’’ Asha, 19 (Delhi). Social norms regarding ‘appropriate’ behavior, causing women to turn away from such information ‘‘It [poster on AIDS] was hung outside [the hospital], but neither did I read it nor did I look at it. I just take the medicines [for another illness] and come straight home with my mother.’’ Nina, 18 (Delhi). The situation was worse in Hyderabad, where Chandrakantha, 49, summed up such attitudes: ‘‘We must not think about these things. God is there to look after everything. If we say anything, people will shout at and censure us.’’ Taboo related to sexual activities was also reflected in the segregation of FSWs and PLWHAs to separate areas in Patrachar (Delhi) and Wadderbasti (Hyderabad), undoubtedly increasing their isolation. This leaves them in a position of vulnerability since proper information does not always reach them, given that these slums experienced spotty coverage by governmental or NGO AIDSrelated activities. Lack of female autonomy impedes freedom of expression/ communication, decisionmaking and actions. During participatory
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observation, we found that male members of the family or neighborhood hampered our conversations and also free access to information for the participants. In a couple of instances in Delhi, such members dropped by unexpectedly and loudly demanded that interviews be terminated, insinuating that the college ‘‘girls’’ conducting the interviews would ‘‘fill the heads’’ of the women with ‘‘modern’’ [decadent] ideas that would ‘‘lead their women astray.’’ This proprietary manner with which women are often treated points to their lack of autonomy. Intermittent harassment by a group of young men, who followed the interviewers around, calling out terms such as ‘‘condom ladies’’ in order to embarrass them into leaving, was also cited by the neighborhood women as disrespectful behavior that severely limited them from participating in events on sexual and reproductive health informational activities organized by the government/NGOs. Therefore, men often encroached upon the physical and expressive space of the women, curtailing their autonomy and access to information and exchanges of ideas. Taboo and lack of autonomy was also reflected in the fact that participants in both cities felt uncomfortable talking about this topic when elder women such as their mother-in-laws were present. In our sample, early marriage was also often seen to curtail participants’ level of economic and social autonomy, and placed women at greater risk for reproductive health issues due to enforced rules on healthcare, and early and frequent childbearing, the latter often related to son-preference (see Jejeebhoy & Sathar, 2001; NACO, 2007a). In India, over 15 percent of annual births are to women between 15–19 years (NACO, 2007c), suggesting that reproductive roles and associated risk begin early in life for women. Early marriage also poses a greater risk to HIV/AIDS exposure, since for many monogamous women marriage is the greatest risk factor for exposure to HIV/AIDS (Verma & Roy, 2002). This risk was particularly evident in Hyderabad, as explained in paragraphs below. In our study, two-thirds of the participants had been married in their mid-to-late adolescent years; childbearing began early and most married participants had their first child within a year of marriage. In Delhi, half the participants had four or more children, and conversations indicated that son-preference had dictated the size of the family in many of the cases, as typified by the following reply by Ritu, 35 (Delhi), when asked what the birth intervals of her five children were: ‘‘The girls were born after two and two years [after the first girl], the boy was born 4 years after a girl .after that, the youngest [girl] was born approximately 3 years later. Interviewer: ‘‘Ok. Was it in the hope of a boy you had 3 girls?’’ Ritu: ‘‘Yes. [Here] this is what happens 99 percent of the times.’’ Therefore, in Delhi, reproductive roles and having male-children were often considered essential, at the expense of education (suspended after marriage), and perhaps maternal well-being (repeated pregnancies in hope of a boy). In Hyderabad, family sizes were smaller, either due to the relatively lower average age of the women and/or because fertility rates are generally lower in southern India (Jejeebhoy & Sathar, 2001; IIPS & Macro International, 2007). However, women in Hyderabad faced a different aspect of the dangers of lack of autonomy. Here, lack of female autonomy in sexual decisionmaking can possibly be inferred by the fact that more than two-thirds of the participants knew of at least one person affected by AIDS, and over half of them knew multiple cases. Most of the cases, who were of their cohort (early 20s and married early), included at least one woman having contracted the infection from her husband, revealing HIV/AIDS exposure risks women face even within marriage. It is clear that these women
could not dictate the use of a condom or abstain from sexual contact either due to lack of knowledge and/or their low bargaining power in sexual matters. Even in the context of autonomy in their own health decisions, almost half the total participants indicated that they were hemmed in by gendered social mores that dictated that women not only seek permission to see a health provider, but also be chaperoned when going out.
Socioeconomic aspects of vulnerability Formal education is directly correlated with better awareness of AIDS and its preventive measures (Abraham, 2002; Pradhan & Sundar, 2006). This was also borne out in our study, but in a more complex pattern. About a third of the participants reflected a mismatch between formal education levels and AIDS awareness. Some less educated women had passable information about AIDS and seemed to have benefited from AIDS awareness campaigns, yet some of the better-educated women were less informed. The mechanisms through which lack of formal education created vulnerability to HIV/AIDS in the context of our study were lack of detailed and accurate information and prioritization of marriage over education. With respect to access to information, in Delhi, among the better-educated women with at least secondary level education, the younger group (below age 20) had benefited much more from their formal education due to the recent introduction of AIDS awareness curricula in schools, starting grade IX. According to Komal, 16 (Delhi): ‘‘The women over here are not. educated; I am educated, I have passed my IXth [grade], so I read in the newspapers, my madam [teacher]. um, I get to know in school. But, the women who aren’t educated can’t read the papers and they would have never learnt about it in school, so those people have no knowledge about this [HIV/AIDS]’’. Older participants who had at least passable information about AIDS had benefited from media campaigns (mainly TV) and governmental AIDS awareness camps. Also, regardless of age, a majority of the secondary level educated women had more positive attitudes towards PLWHAs, and had greater understanding of specifics about HIV/AIDS. In Hyderabad, misinformation and taboo adversely affected knowledge about HIV/AIDS even among the younger, more educated participants, where education made an impact only at or above XIth grade, when AIDS awareness was introduced into the curriculum. Arthi, 18 (Hyderabad), who had not yet started XIth grade, reflects this lack of information: ‘‘It is a contagious disease [through casual contact]. if we go outside the house [unfaithful], errr. that’s it [that’s all I know] Interviewer: Can it be prevented? Arthi: We can take tablets.’’ In contrast, 19-year-olds Sudeepa and Lina of Hyderabad, both having completed their secondary education, could rattle off all modes of AIDS transmission. An example of prioritization of marriage over education was the case of Nina, 18, engaged to be married to a man of higher status, had been withdrawn from school after grade VI due to financial constraints. But, at the same time, she was being sent to a community center to learn art and crafts so she could be an ‘accomplished wife;’ the expense (Rs. 500 or just under US$11.00 per month based on the conversion rate prevailing in July–August 2006) was equivalent to or more than it would have cost to send her to school. Additionally, a quarter of total participants had no or only primary level education, and had been married in their teen years.
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However, it is of note that, in accordance with accepted genderappropriate attitudes, participants who had more education than their husbands sought to play it down and insisted that their husbands took most of the family’s decisions. This self-effacing attitude and resulting limitations on autonomy despite education points to the importance of promoting women’s empowerment in the larger context and community. Mechanisms of vulnerability due to economic factors were limitations on autonomy, and poverty itself, making earning a living a priority above all else. Women’s dependence on husbands for economic support results in disempowerment in terms of having a say in sexual matters, which is reinforced by societal norms (Ghosh & Olson, 2007; Verma & Roy, 2002; Williams, 2005). Only six participants (all in Hyderabad) were engaged in paid work of a custodial/janitorial, construction or ‘‘dhobi’’ (laundry) type. All others were economically dependent on their husbands or fathers and most were limited in health related decisionmaking. The average monthly household income in both cities was approximately Rs. 4000 ($87.00), which placed them in an economically vulnerable position. Since most participants were part of extended families, this put at least a third of them (11 households) below the urban poverty threshold as defined by the Government of India, set at Rs. 542.89 ($11.80) per capita per month for Andhra Pradesh and Rs. 612.91 ($13.32) for Delhi (GOI, 2007), and most others simply eking out a living. The stark truth is that poverty itself created vulnerability to AIDS; the constant grind left little time for taking the effort to attend health camps, or pay attention to the various AIDS-related messages displayed across the cities and played on the media. According to women from Sanjay Basti/Patrachar (Delhi) who refused to be interviewed for lack of time, ‘‘We don’t know where our next two meals are going to come fromdwhy should we be concerned with AIDS?’’ Lack of AIDS awareness Awareness is the best prevention against HIV/AIDS, yet participants had inadequate levels of information about it. The major mechanism causing lack of AIDS awareness was inaccurate, incomplete or inadequate information from health personnel and even service messages. Participants in Delhi knew more specifics than their counterparts in Hyderabad, where five participants had absolutely no knowledge of details and thought it might spread through casual contact. For example, when Annapurna, 18, was asked if she had heard of AIDS, her reply was: ‘‘Yes. it is a contagious diseasedin Erragadda Hospital, doctors told me not to speak with AIDS patients and not to touch them!’’ In terms of modes of AIDS transmission, all participants who had some knowledge of AIDS were at least able to cite multiple sexual relationships as a high-risk activity, but they did not relate any of the risk to themselves or generally to monogamous women within marriages despite the fact that over half of them in Hyderabad knew of a friend or neighbor who had contracted the disease from her husband. Almost three-quarters of those who had some knowledge of HIV/AIDS were also able to cite non-sterile syringes as a cause of transmission and over half also knew about the role of blood productsdmore participants in Delhi knew about risks of syringes, and those in Hyderabad were more likely to know about risks of blood products. A third of respondents, predominantly from Delhi, knew about mother-to-child-transmission. Misconceptions regarding transmission were fairly widespread, even among more educated women, particularly regarding casual contact and the role of mosquitoes. Women in Hyderabad slums tended to have more misconceptions than their Delhi counterparts. AIDS prevention awareness among participants was mostly limited to exhortations of fidelity and abstinence they saw on TV, which
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gelled well with their cultural norms. The concept that multiple sexual relationships and visiting commercial sex workers presented high risk to HIV/AIDS exposure was well ingrained, but the concept of protected/safe sex was not so clear. While all but two participants in Delhi could cite condoms as a preventive measure, this knowledge was extremely limited or withheld in Hyderabad, where only two participants mentioned condoms. Overall, in both cities, most participants did not fully understand the role of condoms as a barrier against AIDS transmission. A number of them confused AIDS prevention with family planning, thinking that contraceptives were a safety measure against AIDS. ‘‘Condom and pills are also available [for HIV/AIDS prevention] and it depends on how much you can protect yourself from [using] that’’ (Megha, 19, Delhi). Ritu, 35 (Delhi) on AIDS prevention: ‘‘The only way is to keep yourself healthy. we used to use condoms earlier but we don’t use them any more because we are going to get an operation [sterilization]. It is possible [to prevent AIDS like this].’’ In Hyderabad, over half the participants thought that there was absolutely no preventive measure for HIV/AIDSdthe rest of the participants in both cities were at least able to cite precautionary behaviors. Participants in both cities knew little about HIV treatment measures. A majority knew that there was no cure for AIDS but two felt medicines were available as a permanent cure and another thought condoms might have a curative effect. Five participants were positive that there was no treatment available, and the rest had no idea about treatments or that there were drugs available to delay the onset of AIDS. Access to information Awareness campaigns through electronic media were heavy in both cities, but according to our study, had more impact in Delhi. Other sources of information were newspapers and posters. However, each of these methods presented some problems. Newspapers were read mostly by the women who had studied up to and beyond IXth grade. While all those who had some at least primary education could read the posters, many of them did not understand the clinical language used or want to be seen reading them, as in the case of Nina (see quote above). This presents policy implications and is addressed in the following section of this paper. There was conflicting information regarding governmentsponsored health camps that provided AIDS information. Almost a third of the women in the Delhi slums noted that such camps were held, and had benefited from them, yet others were completely unaware of them, indicating that the reach of these camps was limited. The same was the case for street dramas and community meetings held by NGOs in the Hyderabad slums. According to the participants here, there were no governmentsponsored programs regarding HIV/AIDS. Information on a personal basis from health posts and hospitals was spotty, and those who went to private hospitals/doctors did not receive any information on AIDS at all. Physical access to government hospitals that did provide information was often a problem due to distance in the case of Delhi, and lack of access to transport in the case of Hyderabad. Concluding remarks The analysis and findings from the study indicate that various socioeconomic and cultural aspects create an environment of vulnerability to HIV/AIDS for the participants. There was generally
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a lack of empowerment among Indian women in the slums of our study, since male or senior members of the household often impinged upon their freedom of communication and decisionmaking. Investment in formal education had often been eschewed in favor of early marriage and childbearing and rearing responsibilities. Economic autonomy was highly limited regardless of participation in paid work. Taboo, lack of communication networks and education, and poverty left them without access to information vital to their reproductive health and to knowledge and prevention of diseases such as HIV/AIDS. The study also offers important policy implications to AIDS awareness programs, some of which include: Awareness tools such as posters and newspapers were effective only when participants had greater than primary and at least secondary level education respectively. The language used needs simplification. AIDS education in a formal curriculum starting early greatly increases possibility of having more comprehensive and accurate knowledge about HIV/AIDS, as well as addresses important issues of stigma and negative attitudes. Access to reproductive and HIV/AIDS information by incorporating HIV/AIDS information in primary health infrastructure. It is also important to clearly differentiate between the role of contraceptives in general and condoms in preventing HIV/AIDS infections. Apart from the above, the central role of men in these women’s lives points to the importance of longer-term policies promoting women’s empowerment by engaging both men and women in the process.
Acknowledgement This study was made possible by a 2006 research grant by the Association of American Geographers (AAG) and a travel grant by the Regional Development and Planning Specialty Group of the AAG awarded to the second author. We sincerely thank both bodies. Thanks also to Dr. Baleshwar Thakur, Dr. Kalpana Markandey, Dr. S. Simadhri, Mr. Sree Vikram Bhikkaji; Dr. P.P. Singh, Dr. Gurpreet Singh, Dr. Sathyavathi (Greater Hyderabad Municipal Corporation); Research students Jaya and Sarika (Delhi University), Pratigna and Premlata (Osmania University), and health personnel from the health posts. We are immensely grateful to the women who took part in this study for their cooperation and participation. Finally, thanks to the reviewers for their comments that greatly helped in crystallizing this work.
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Social Science & Medicine journal homepage: www.elsevier.com/locate/socscimed
Vulnerability to HIV/AIDS among women of reproductive age in the slums of Delhi and Hyderabad, India Jayati Ghosh a, *, Vandana Wadhwa b, Ezekiel Kalipeni c a
School of Business and Leadership, Dominican University of California, 50 Acacia Avenue, San Rafael, CA 94901, United States Boston University, Boston, MA 02215, United States c University of Illinois at Urbana Champaign, Champaign, IL 61801, United States b
a r t i c l e i n f o
a b s t r a c t
Article history: Available online 13 December 2008
This report explores how vulnerability to HIV/AIDS applies to women in the reproductive age range living in the slum areas of Delhi and Hyderabad. The paper is based on a qualitative study of AIDS awareness levels conducted during the summer of 2006. It offers insightful narratives from a sample of 32 women, providing an in depth view of their vulnerability to HIV/AIDS due to their precarious socioeconomic conditions and low AIDS awareness. The women cited lack of education, low empowerment in expressing and accessing information related to sexual matters, and poverty as key factors to vulnerability. Ó 2008 Elsevier Ltd. All rights reserved.
Keywords: India HIV Vulnerability Women of reproductive age Slums Contraceptive methods
Introduction According to the National AIDS Control Organization (NACO), India, high levels of social and economic vulnerability have led to greater feminization of the HIV/AIDS epidemic in India, with women comprising 39 percent of all HIV/AIDS cases, currently estimated as 2.5 million (NACO, 2007a). Reasons for women’s vulnerability to HIV/ AIDS are manifold, and embedded in their socioeconomic and cultural context. Taboo and cultural norms create vulnerable environments of early marriage, lower literacy, lower awareness about sexually related aspects and HIV/AIDS, and lower autonomy over economic resources and reproductive/sexual behavior than men (Abraham, 2002; IIPS & Macro International, 2007; Jejeebhoy & Sathar, 2001; NACO, 2007a; Pradhan & Sundar, 2006; Williams, 2005). Such literature on women and HIV/AIDS has established that socioeconomic factors create an environment of risk to HIV/AIDS. The current study is significant in its ability to expose the mechanisms behind these aspects of vulnerability to HIV/AIDS for women residing in the slums of Delhi and Hyderabad arising not only from their precarious socioeconomic conditions but also from their lack of AIDS awareness. Study context Hyderabad (capital city of the state of Andhra Pradesh in southeast India) and Delhi were selected for this study because * Corresponding author. Tel.: þ1 415 485 3238; fax: þ1 415 459 3206. E-mail address: [email protected] (J. Ghosh). 0277-9536/$ – see front matter Ó 2008 Elsevier Ltd. All rights reserved. doi:10.1016/j.socscimed.2008.11.023
they present relatively contrasting HIV/AIDS prevalence and awareness level scenarios. During 2005–06, Andhra Pradesh (AP) had a seropositivity rate of 1.26 percent at antenatal clinics (ANCs)dhigher than in any other state in India. General population prevalence was 0.97 percent, 0.75 percent for women, second highest in the country. Hyderabad itself has been classified as an HIV hotspot, with 2 percent seropositivity among women attending ANCsdthe corresponding figure for Delhi stands well below 1 percent (IIPS & Macro International, 2007; NACO, 2006, 2007b). However, Delhi, categorized as a low prevalence area, has been experiencing rapid increases in infections in high-risk groups such as men having sex with men (MSMs) and intravenous drug users, with more than 5 percent seropositivity in these groups. Therefore, Delhi has been categorized as a ‘highly vulnerable state’ and an emerging HIV/AIDS hotspot (Delhi State AIDS Control Society, 2005; NACO, 2007b). Both cities are major administrative and economic hubs with attendant resources to undertake AIDS awareness and prevention programs. However, AIDS awareness levels were higher in Delhi (93.5 percent in 2005–06) than in Hyderabad, where it was 80.6 percent in 2004 (Sudha, Vijay, & Lakshmi, 2005; IIPS & Macro International, 2007). The conceptual framework for this research focuses on vulnerability as described through poverty, gender and power relations, which puts women in the reproductive age range at greater risk of contracting HIV. In utilizing this framework, we draw upon the works of Sen (1990) and Watts and Bohle (1993) that introduce the concepts of entitlement and empowerment. The central argument of this framework is that unequal power relations and differential socioeconomic entitlements between men and women ultimately
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result in vulnerable situations for women throughout the developing world (also see Oppong, 1998). It is in this context that we situate our study on women and their precarious position with reference to vulnerability to HIV/AIDS in the slums of two cities in India. As the study results show, the pathways of vulnerability that work against the welfare of women are numerous: the compromised ‘entitlement bundles’ for women, we argue, have increased their vulnerability to HIV/AIDS. The results in this study support this conceptualization. Methodology This study was conducted in July–August 2006 by the second author, with permission from the Health Departments/Wings of the respective cities’ Municipal Corporations. Most health needs of slums residents are served by Health Posts or reproductive and child health clinics set up by the city’s Municipal Corporations. These entities, responsible for the welfare of the population of the survey sites, reviewed the questionnaire and granted her permission to conduct the survey. Additionally full informed consent was obtained from the participants. The study follows the Ethical Guidelines for Social Science Research in Health laid down by the National (Indian) Committee for Ethics in Social Science Research in Health (see NCESSRH, 2000). Unstructured interviews were used to gather information from 32 women of reproductive age (15–49 years) after obtaining their informed consent, and false names were assigned to protect their identities. Participants were recruited using the maximum variation technique categorized across age, marital status, and apparent socioeconomic standing. Participatory observation was also conducted to gather information on the general physical and cultural environment of the communities. The study protocol included questions on socioeconomic and demographic aspects, dynamics of HIV/AIDS awareness, and decisionmaking power regarding healthcare, among other questions. Participant interviews from Delhi were conducted in Hindi, taped and transcribed verbatim. Interviews in Hyderabad were conducted in Telugudfield notes were relied upon due to the distrust and reluctance on part of the participants to be taped. Interviews were often difficult to sustain when specific questions on HIV/AIDS were asked, and were completed through persistence and careful maneuvering of the conversation. Interviews were then coded and classified into themes according to which the present analysis is presented. The slum sites were chosen in consultation with faculty from each city’s project-partner university (Delhi University and Osmania University) using basic criteria of access, and differences in health information coverage by government/NGOs and in relative socioeconomic conditions. Therefore, an attempt was made to capture diversity in the two slums of each city. Despite repeated attempts to find participants who would talk about AIDS awareness, efforts yielded only five participants from the first slum cluster of Patrachar/Sanjay Basti (Timarpur area). Therefore, still adhering to the selection criteria, interviews were conducted in two more slums: Autram Lines and Birla Basti, both in Kamalanagar. Patrachar/Sanjay Basti has a population of 1410 (data provided courtesy of Dr. Gurpreet Singh, Ministry of Health and Family Welfare, and for Hyderabad by Prof. Kalpana Markandey of Osmania University) and is a typical slum/squatter areaddensely populated, with housing constructed with a mix of permanent and semi-permanent materials. A number of female sex workers (FSWs) lived here, but were segregated to a separate street. This segregation presented an ethical dilemma; we would alienate ourselves from the general community if we ventured to those areas. We decided against it for three reasons: to avoid the alienation, avoid including participants who might have to be classified
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as ‘‘high-risk’’ population, and to avoid the imposition on the FSWs who had only the day time to cater to their households. The Autram Lines/Birla Basti (population of 2400) areas were relatively cleaner, although the latter had seen better days when it served as official housing for mill workers. In Hyderabad, the slums of Wadderbasti (Fatehnagar) and Addagutta (East Marredpalli, Secunderabad) had extremely unsanitary conditions. Addagutta was relatively worse off, both in physical and socioeconomic terms. Wadderbasti (population approximately 1,926 in 2005) had a segregated section to which FSWs and known persons living with HIV/AIDS (PLWHAs) were relegated. According to some residents, about 25 percent of their slum community was affected by HIV/AIDS. Addagutta is one of the largest slums in Asia, with a population of 16,354 in 2005. Built on a hillside, it is segregated into two parts, one predominantly Muslim, with a mosque serving as its hub, the other predominantly Hindu. The housing materials are mixed, but mostly comprised ‘‘kachha’’ (degradable) and semi-permanent materials. Thematic analysis and findings HIV/AIDS as a taboo subject and the lack of female autonomy In our study, participant narratives and conversations clearly highlighted the fear of discussing issues of sexuality, AIDS as a taboo subject and the general lack of female autonomy. Apart from lack of time or absolutely no knowledge of AIDS, the taboo nature of the topic greatly affected participation in both cities, 8–10 potential participants had to be asked for an interview before one was willing to speak about the issue. Taboo presents a great impediment towards acquiring complete and accurate information, leaving many of these women at risk of exposure to a rapidly spreading disease best tackled by precautionary and preventive measures. In the context of our study, mechanisms through which taboo created vulnerability to HIV/ AIDS were: Inhibiting communication, even between parents and children ‘‘They don’t talk about such things [HIV/AIDS] here, no one. They [young girls] should ask and tell each other as well, but no one out here talks about it; if we get to know [about AIDS] then at least we will also be more careful. I’m getting married too. My mother doesn’t know anything about this. She knows, but not so much that she can talk openly about it, and we don’t even talk about this ever. We feel so shy that we don’t even talk about that [HIV/AIDS] much.’’ Asha, 19 (Delhi). Social norms regarding ‘appropriate’ behavior, causing women to turn away from such information ‘‘It [poster on AIDS] was hung outside [the hospital], but neither did I read it nor did I look at it. I just take the medicines [for another illness] and come straight home with my mother.’’ Nina, 18 (Delhi). The situation was worse in Hyderabad, where Chandrakantha, 49, summed up such attitudes: ‘‘We must not think about these things. God is there to look after everything. If we say anything, people will shout at and censure us.’’ Taboo related to sexual activities was also reflected in the segregation of FSWs and PLWHAs to separate areas in Patrachar (Delhi) and Wadderbasti (Hyderabad), undoubtedly increasing their isolation. This leaves them in a position of vulnerability since proper information does not always reach them, given that these slums experienced spotty coverage by governmental or NGO AIDSrelated activities. Lack of female autonomy impedes freedom of expression/ communication, decisionmaking and actions. During participatory
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observation, we found that male members of the family or neighborhood hampered our conversations and also free access to information for the participants. In a couple of instances in Delhi, such members dropped by unexpectedly and loudly demanded that interviews be terminated, insinuating that the college ‘‘girls’’ conducting the interviews would ‘‘fill the heads’’ of the women with ‘‘modern’’ [decadent] ideas that would ‘‘lead their women astray.’’ This proprietary manner with which women are often treated points to their lack of autonomy. Intermittent harassment by a group of young men, who followed the interviewers around, calling out terms such as ‘‘condom ladies’’ in order to embarrass them into leaving, was also cited by the neighborhood women as disrespectful behavior that severely limited them from participating in events on sexual and reproductive health informational activities organized by the government/NGOs. Therefore, men often encroached upon the physical and expressive space of the women, curtailing their autonomy and access to information and exchanges of ideas. Taboo and lack of autonomy was also reflected in the fact that participants in both cities felt uncomfortable talking about this topic when elder women such as their mother-in-laws were present. In our sample, early marriage was also often seen to curtail participants’ level of economic and social autonomy, and placed women at greater risk for reproductive health issues due to enforced rules on healthcare, and early and frequent childbearing, the latter often related to son-preference (see Jejeebhoy & Sathar, 2001; NACO, 2007a). In India, over 15 percent of annual births are to women between 15–19 years (NACO, 2007c), suggesting that reproductive roles and associated risk begin early in life for women. Early marriage also poses a greater risk to HIV/AIDS exposure, since for many monogamous women marriage is the greatest risk factor for exposure to HIV/AIDS (Verma & Roy, 2002). This risk was particularly evident in Hyderabad, as explained in paragraphs below. In our study, two-thirds of the participants had been married in their mid-to-late adolescent years; childbearing began early and most married participants had their first child within a year of marriage. In Delhi, half the participants had four or more children, and conversations indicated that son-preference had dictated the size of the family in many of the cases, as typified by the following reply by Ritu, 35 (Delhi), when asked what the birth intervals of her five children were: ‘‘The girls were born after two and two years [after the first girl], the boy was born 4 years after a girl .after that, the youngest [girl] was born approximately 3 years later. Interviewer: ‘‘Ok. Was it in the hope of a boy you had 3 girls?’’ Ritu: ‘‘Yes. [Here] this is what happens 99 percent of the times.’’ Therefore, in Delhi, reproductive roles and having male-children were often considered essential, at the expense of education (suspended after marriage), and perhaps maternal well-being (repeated pregnancies in hope of a boy). In Hyderabad, family sizes were smaller, either due to the relatively lower average age of the women and/or because fertility rates are generally lower in southern India (Jejeebhoy & Sathar, 2001; IIPS & Macro International, 2007). However, women in Hyderabad faced a different aspect of the dangers of lack of autonomy. Here, lack of female autonomy in sexual decisionmaking can possibly be inferred by the fact that more than two-thirds of the participants knew of at least one person affected by AIDS, and over half of them knew multiple cases. Most of the cases, who were of their cohort (early 20s and married early), included at least one woman having contracted the infection from her husband, revealing HIV/AIDS exposure risks women face even within marriage. It is clear that these women
could not dictate the use of a condom or abstain from sexual contact either due to lack of knowledge and/or their low bargaining power in sexual matters. Even in the context of autonomy in their own health decisions, almost half the total participants indicated that they were hemmed in by gendered social mores that dictated that women not only seek permission to see a health provider, but also be chaperoned when going out.
Socioeconomic aspects of vulnerability Formal education is directly correlated with better awareness of AIDS and its preventive measures (Abraham, 2002; Pradhan & Sundar, 2006). This was also borne out in our study, but in a more complex pattern. About a third of the participants reflected a mismatch between formal education levels and AIDS awareness. Some less educated women had passable information about AIDS and seemed to have benefited from AIDS awareness campaigns, yet some of the better-educated women were less informed. The mechanisms through which lack of formal education created vulnerability to HIV/AIDS in the context of our study were lack of detailed and accurate information and prioritization of marriage over education. With respect to access to information, in Delhi, among the better-educated women with at least secondary level education, the younger group (below age 20) had benefited much more from their formal education due to the recent introduction of AIDS awareness curricula in schools, starting grade IX. According to Komal, 16 (Delhi): ‘‘The women over here are not. educated; I am educated, I have passed my IXth [grade], so I read in the newspapers, my madam [teacher]. um, I get to know in school. But, the women who aren’t educated can’t read the papers and they would have never learnt about it in school, so those people have no knowledge about this [HIV/AIDS]’’. Older participants who had at least passable information about AIDS had benefited from media campaigns (mainly TV) and governmental AIDS awareness camps. Also, regardless of age, a majority of the secondary level educated women had more positive attitudes towards PLWHAs, and had greater understanding of specifics about HIV/AIDS. In Hyderabad, misinformation and taboo adversely affected knowledge about HIV/AIDS even among the younger, more educated participants, where education made an impact only at or above XIth grade, when AIDS awareness was introduced into the curriculum. Arthi, 18 (Hyderabad), who had not yet started XIth grade, reflects this lack of information: ‘‘It is a contagious disease [through casual contact]. if we go outside the house [unfaithful], errr. that’s it [that’s all I know] Interviewer: Can it be prevented? Arthi: We can take tablets.’’ In contrast, 19-year-olds Sudeepa and Lina of Hyderabad, both having completed their secondary education, could rattle off all modes of AIDS transmission. An example of prioritization of marriage over education was the case of Nina, 18, engaged to be married to a man of higher status, had been withdrawn from school after grade VI due to financial constraints. But, at the same time, she was being sent to a community center to learn art and crafts so she could be an ‘accomplished wife;’ the expense (Rs. 500 or just under US$11.00 per month based on the conversion rate prevailing in July–August 2006) was equivalent to or more than it would have cost to send her to school. Additionally, a quarter of total participants had no or only primary level education, and had been married in their teen years.
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However, it is of note that, in accordance with accepted genderappropriate attitudes, participants who had more education than their husbands sought to play it down and insisted that their husbands took most of the family’s decisions. This self-effacing attitude and resulting limitations on autonomy despite education points to the importance of promoting women’s empowerment in the larger context and community. Mechanisms of vulnerability due to economic factors were limitations on autonomy, and poverty itself, making earning a living a priority above all else. Women’s dependence on husbands for economic support results in disempowerment in terms of having a say in sexual matters, which is reinforced by societal norms (Ghosh & Olson, 2007; Verma & Roy, 2002; Williams, 2005). Only six participants (all in Hyderabad) were engaged in paid work of a custodial/janitorial, construction or ‘‘dhobi’’ (laundry) type. All others were economically dependent on their husbands or fathers and most were limited in health related decisionmaking. The average monthly household income in both cities was approximately Rs. 4000 ($87.00), which placed them in an economically vulnerable position. Since most participants were part of extended families, this put at least a third of them (11 households) below the urban poverty threshold as defined by the Government of India, set at Rs. 542.89 ($11.80) per capita per month for Andhra Pradesh and Rs. 612.91 ($13.32) for Delhi (GOI, 2007), and most others simply eking out a living. The stark truth is that poverty itself created vulnerability to AIDS; the constant grind left little time for taking the effort to attend health camps, or pay attention to the various AIDS-related messages displayed across the cities and played on the media. According to women from Sanjay Basti/Patrachar (Delhi) who refused to be interviewed for lack of time, ‘‘We don’t know where our next two meals are going to come fromdwhy should we be concerned with AIDS?’’ Lack of AIDS awareness Awareness is the best prevention against HIV/AIDS, yet participants had inadequate levels of information about it. The major mechanism causing lack of AIDS awareness was inaccurate, incomplete or inadequate information from health personnel and even service messages. Participants in Delhi knew more specifics than their counterparts in Hyderabad, where five participants had absolutely no knowledge of details and thought it might spread through casual contact. For example, when Annapurna, 18, was asked if she had heard of AIDS, her reply was: ‘‘Yes. it is a contagious diseasedin Erragadda Hospital, doctors told me not to speak with AIDS patients and not to touch them!’’ In terms of modes of AIDS transmission, all participants who had some knowledge of AIDS were at least able to cite multiple sexual relationships as a high-risk activity, but they did not relate any of the risk to themselves or generally to monogamous women within marriages despite the fact that over half of them in Hyderabad knew of a friend or neighbor who had contracted the disease from her husband. Almost three-quarters of those who had some knowledge of HIV/AIDS were also able to cite non-sterile syringes as a cause of transmission and over half also knew about the role of blood productsdmore participants in Delhi knew about risks of syringes, and those in Hyderabad were more likely to know about risks of blood products. A third of respondents, predominantly from Delhi, knew about mother-to-child-transmission. Misconceptions regarding transmission were fairly widespread, even among more educated women, particularly regarding casual contact and the role of mosquitoes. Women in Hyderabad slums tended to have more misconceptions than their Delhi counterparts. AIDS prevention awareness among participants was mostly limited to exhortations of fidelity and abstinence they saw on TV, which
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gelled well with their cultural norms. The concept that multiple sexual relationships and visiting commercial sex workers presented high risk to HIV/AIDS exposure was well ingrained, but the concept of protected/safe sex was not so clear. While all but two participants in Delhi could cite condoms as a preventive measure, this knowledge was extremely limited or withheld in Hyderabad, where only two participants mentioned condoms. Overall, in both cities, most participants did not fully understand the role of condoms as a barrier against AIDS transmission. A number of them confused AIDS prevention with family planning, thinking that contraceptives were a safety measure against AIDS. ‘‘Condom and pills are also available [for HIV/AIDS prevention] and it depends on how much you can protect yourself from [using] that’’ (Megha, 19, Delhi). Ritu, 35 (Delhi) on AIDS prevention: ‘‘The only way is to keep yourself healthy. we used to use condoms earlier but we don’t use them any more because we are going to get an operation [sterilization]. It is possible [to prevent AIDS like this].’’ In Hyderabad, over half the participants thought that there was absolutely no preventive measure for HIV/AIDSdthe rest of the participants in both cities were at least able to cite precautionary behaviors. Participants in both cities knew little about HIV treatment measures. A majority knew that there was no cure for AIDS but two felt medicines were available as a permanent cure and another thought condoms might have a curative effect. Five participants were positive that there was no treatment available, and the rest had no idea about treatments or that there were drugs available to delay the onset of AIDS. Access to information Awareness campaigns through electronic media were heavy in both cities, but according to our study, had more impact in Delhi. Other sources of information were newspapers and posters. However, each of these methods presented some problems. Newspapers were read mostly by the women who had studied up to and beyond IXth grade. While all those who had some at least primary education could read the posters, many of them did not understand the clinical language used or want to be seen reading them, as in the case of Nina (see quote above). This presents policy implications and is addressed in the following section of this paper. There was conflicting information regarding governmentsponsored health camps that provided AIDS information. Almost a third of the women in the Delhi slums noted that such camps were held, and had benefited from them, yet others were completely unaware of them, indicating that the reach of these camps was limited. The same was the case for street dramas and community meetings held by NGOs in the Hyderabad slums. According to the participants here, there were no governmentsponsored programs regarding HIV/AIDS. Information on a personal basis from health posts and hospitals was spotty, and those who went to private hospitals/doctors did not receive any information on AIDS at all. Physical access to government hospitals that did provide information was often a problem due to distance in the case of Delhi, and lack of access to transport in the case of Hyderabad. Concluding remarks The analysis and findings from the study indicate that various socioeconomic and cultural aspects create an environment of vulnerability to HIV/AIDS for the participants. There was generally
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a lack of empowerment among Indian women in the slums of our study, since male or senior members of the household often impinged upon their freedom of communication and decisionmaking. Investment in formal education had often been eschewed in favor of early marriage and childbearing and rearing responsibilities. Economic autonomy was highly limited regardless of participation in paid work. Taboo, lack of communication networks and education, and poverty left them without access to information vital to their reproductive health and to knowledge and prevention of diseases such as HIV/AIDS. The study also offers important policy implications to AIDS awareness programs, some of which include: Awareness tools such as posters and newspapers were effective only when participants had greater than primary and at least secondary level education respectively. The language used needs simplification. AIDS education in a formal curriculum starting early greatly increases possibility of having more comprehensive and accurate knowledge about HIV/AIDS, as well as addresses important issues of stigma and negative attitudes. Access to reproductive and HIV/AIDS information by incorporating HIV/AIDS information in primary health infrastructure. It is also important to clearly differentiate between the role of contraceptives in general and condoms in preventing HIV/AIDS infections. Apart from the above, the central role of men in these women’s lives points to the importance of longer-term policies promoting women’s empowerment by engaging both men and women in the process.
Acknowledgement This study was made possible by a 2006 research grant by the Association of American Geographers (AAG) and a travel grant by the Regional Development and Planning Specialty Group of the AAG awarded to the second author. We sincerely thank both bodies. Thanks also to Dr. Baleshwar Thakur, Dr. Kalpana Markandey, Dr. S. Simadhri, Mr. Sree Vikram Bhikkaji; Dr. P.P. Singh, Dr. Gurpreet Singh, Dr. Sathyavathi (Greater Hyderabad Municipal Corporation); Research students Jaya and Sarika (Delhi University), Pratigna and Premlata (Osmania University), and health personnel from the health posts. We are immensely grateful to the women who took part in this study for their cooperation and participation. Finally, thanks to the reviewers for their comments that greatly helped in crystallizing this work.
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