Sexual and reproductive health and rights – Key issues for HIV-affected widows HIV-affected widows face a range of unmet sexual and reproductive health (SRH) needs. Widows are sexually active despite social norms and expectations of their role as widows. They are facing sexual violence within their families and communities and other violations of their sexual and reproductive rights including HIV testing and sterilization without their informed consent. Alliance India conducted a qualitative study among HIV-affected widows in Maharashtra, Tamil Nadu, Andhra Pradesh and Manipur. Low SRH-related knowledge levels and disempowerment prevent widows from understanding their own risks and vulnerabilities, seeking appropriate information or adopting safe behaviours. Service and information provision is currently inadequate to meet the SRH needs of HIV-affected widows – insufficient coverage and coordination between services, as well as stigma and discrimination and lack of confidentiality are acting as barriers to services.
Background The India HIV/AIDS Alliance (Alliance India) is a civil society Principal Recipient of the Global Fund's Round 6 supporting its Linking Organisations, MAMTA, PWDS and VMM, and other partners1, to implement a child-centered community-based care and support programme (CHAHA). This programme has been implemented in four states – Manipur, Maharashtra, Tamil Nadu and Andhra Pradesh in 59 sites of 41
districts. Data from this programme indicates that 37% of the families affected by HIV and AIDS benefiting from services and support are headed by single women. Anecdotal evidence suggests that these women, who have lost their husbands to HIV-related illnesses, face very specific needs and vulnerabilities. Individual stories pointed to a particular vulnerability to discrimination and abuse, including sexual violence, and to unmet sexual and reproductive health needs. These
anecdotes in conjunction with the evidence base from India on knowledge, attitudes and practices related to sexual and reproductive health among young 2 3 4 people , women , people living with HIV 5 and the population more generally , left little doubt that community needs in this area were widespread and left largely unaddressed. To get a better understanding of the sexual and reproductive health and rights-related needs and vulnerabilities,
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SASO, NMP+, PLAN, TASSOS and Alliance India Andhra Pradesh International Institute for Population Sciences (IIPS) and Population Council (2010). Youth in India: Situation and Needs 2006-2007. Mumbai: IIPS. 4 Chakrapani V et al. (2007). The sexual and reproductive health of people living with HIV in India: A mixed methods study. New Delhi: Indian Network for People living with HIV. 5 International Institute for Population Sciences (IIPS) and Macro International. (2007). National Family Health Survey (NFHS-3), 2005-06: India. Mumbai: IIPS 2-3
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Box 1: Widowhood in India The India Census from 2001 revealed that 7% of all women in India are widows with approximately 40% in the reproductive age group. While rates of widowhood have been decreasing over the last decades – mainly due to declines in adult male mortality and increases in female age at marriage – the figures from India remain high in comparison to global figures. Small scale studies from across India and the region have documented the vulnerabilities and marginalisation that widows face due to their particular social and economic situation. The marginalisation of widows in north India in particular, is consistent with the traditional perception of Hindu widows as inauspicious and guilty women who, ideally, should lead a life of austerity devoted to the memory of their husband. Equally or more crucial is the simple fact that widows are often seen as an economic burden. The position of widows in a significant section of Indian society is strongly influenced by a set of practices that govern gender relations as a whole. This includes the system of patrilocal residence, which exists in many parts of India and after marriage puts most adult women in a position of vulnerability. The consequences of patrilocal norms are particularly pronounced in the case of widows as the social support which a widow receives in her husband's village after his death is usually limited. Similarly, the system of patrilineal inheritance and the division of labour by gender place limit a woman's ability to engage in income-generating activities and her economic dependence and subsequently restrict autonomy and decision-making. Restrictions on remarriage, while appearing to affect widows specifically, also derive from a broader kinship system that applies to all women, and limit the extent of remarriage, particularly of widows with children. Contrary to common belief, studies indicate that widows are not typically reintegrated in the household of their in-laws, parents or other relatives. The consequences of this social and economic6 marginalisation also are manifested in poorer health outcomes and mortality levels among widows. For those widows affected by HIV, the epidemic has exacerbated marginalization and vulnerability of an already isolated community of women. Not only are women themselves living with HIV in India, but HIV-related stigma is adding to social exclusion of widows in their communities, and to face additional discrimination from within their families creating additional barriers to their access to property and other economic and community support. Alliance India conducted a series of focus group discussions with young women who had lost their husbands to HIV-related illnesses. In each of the four project states, a group of women aged 15-24 and another with respondents over 25 years old were convened. In total, four FGD were conducted with younger widows (47 respondents) and four with older widows (60 respondents). These discussions were supplemented by discussions with project and frontline staff.
Key findings The qualitative research identified the widows' main SRHR unmet needs and barriers faced when accessing related services in the four states of the CHAHA programme – Maharashtra, Tamil Nadu, Manipur and Andhra Pradesh. Largely the findings confirm those presented by larger scale quantitative surveys, 6
including the National Family Health Survey, on the sexual and reproductive health status and realization of related rights among women (see Table 1).
within the family, including restrictions on their movements, exclusion from family events and not being allowed to dress nicely or use any cosmetics.
(i) Multiple vulnerabilities
Violations of sexual rights – generally community norms prescribed that widows were expected not to engage in any sexual relationships and to control their sexual needs. While younger widows generally accepted these expectations and had little awareness of their rights to a safe and pleasurable sex life, older widows openly questioned the attitudes of the community.
Lack of family support and isolation – across all four states widows spoke about their feelings of loneliness, hopelessness and anxiety about being able to support their children. However, older widows appeared to have established some coping and support structures over time, while younger widows' anxiety over economic insecurity and family situations was consistent. Living arrangements differed across the groups, with most older widows having been thrown out of their in-laws' house and having returned to their maternal home. Those who remained with their inlaws, in particularly younger, recentlywidowed women, commonly described discrimination, exclusion and isolation
In contrast to these expectations stands the women's vulnerability to sexual violence in the community and family. Their economic and other dependence on relatives featured consistently as a factor increasing their vulnerability and experiences of sexual violence. In Tamil Nadu, Maharashtra and Andhra Pradesh, older widows shared experiences of
Swain P et al (2004). Morbidity Status of widows in India. Health and Population-Perspectives and Issues: 27 (3) 173-184, 2004.
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sexual abuse by their fathers- and brothers-in law. While young widows in Manipur only very reluctantly spoke about their family environment, some comments could suggest that a few among them had experienced similar abuse in the family. They shared their feelings of shame and embarrassment and fear of confirming the community's image of widows, if they were to speak out about abuse in the family. Widespread community-level stigma and discrimination – women in Tamil Nadu identified workplaces such as garment factories as places where sexual violence and harassment were common by male co-workers and supervisors under threats of job losses. Some identified this as the reason for
Table 1: Key SRHR indicators among married women in India Ever-married women who have ever experienced spousal violence Currently married women who usually participate in household decisions Ever-married women reporting at least one gynaecological related symptom Women reporting symptoms of STIs at least once in the past 12 months9 Ever-married women reporting one or more symptoms related to reproductive morbidities and STIs between Women not seeking treatment for gynaecological problems Women aged 20-14 married by age 18 Median age at birth for women age 25-49 Total unmet contraceptive need Percentage of births that are institutional deliveries Mothers who had at least 3 ANC visits for their last birth Women who have ever heard of AIDS Women who knew that correct and consistent condom use can reduce the chances of getting HIV Number of married couples affected by HIV Sero-discordant couples using condoms (The most common reason for poor condom use being issues of mistrust and lack of confidence)
20
37.2%7 36.7%8 40% 11% 55 and 100%10 54-82%11 12 47.4% 13 19.8 12.8%14 40.8%15 16 50.7% 17 57% 34.7%18 1.18 million19 6%
Rates of induced abortions after HIV diagnosis among women living with HIV: • Heterosexual women • Female IDUs • FSW
16% 24% 21 11%
Women living with HIV reporting STI-related symptoms in the previous 3 months: • Heterosexual women • Female IDU • FSW
56% 72% 97%22
7-9
International Institute for Population Sciences (IIPS) and Macro International. (2007). National Family Health Survey (NFHS-3), 2005-06: India. Mumbai: IIPS. Population Council and UNAIDS (2009). HIV transmission and intimate partner relationships in India. New Delhi: UNAIDS. 12-18 International Institute for Population Sciences (IIPS) and Macro International. (2007). National Family Health Survey (NFHS-3), 2005-06: India. Mumbai: IIPS. 19 Population Council and UNAIDS (2009). HIV transmission and intimate partner relationships in India. New Delhi: UNAIDS. 20 Population Council and UNAIDS (2009). HIV transmission and intimate partner relationships in India. New Delhi: UNAIDS. 21-22 Chakrapani V et al. (2007). The sexual and reproductive health of people living with HIV in India: A mixed methods study. New Delhi: Indian Network for People living with HIV. 10-11
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leaving the factory work and engaging in sex work as the only other option for income generation in a context of lacking family and community support. Across all four states, widows described incidents of abuse and harassment in the community once their status of widowhood was known, questioning their reasons for dressing up, leaving the house and them and their children being asked for sex.
(ii) Knowledge and practices – Sexual activity and relationships – across all four states, widows themselves or project staff confirmed that it was not uncommon for widows to be sexually active. Generally younger widows were more reluctant to speak about being sexually active, while older widows in Manipur and about a third of the respondents in this group in Andhra Pradesh described sexual relationships with neighbours and other community members. They also described how many widows would like to remarry but that this is often not supported by the community – due to social norms regarding remarriage of widows and to HIVrelated stigma and discrimination. Older widows, and to a lesser extent younger widows too, described the need to engage in sex work to support themselves and their families. In Tamil Nadu, about half of the respondents in the group of older widows stated they were engaged in some form of sex work. In Manipur, older widows described engaging in sexual relations with shopkeepers and other community members in order to support some of their day to day economic needs. Low levels of contraceptive knowledge and use – Generally widows across all four states had limited knowledge of contraceptive methods. Older widows in Manipur discussed having had very limited knowledge about how to prevent pregnancies when they were married. They described only having sought advice on abortions after an unwanted pregnancy had already occurred. Project staff in Manipur and Andhra Pradesh confirmed that abortions were not uncommon among widows, though they were often forced to seek services from health facilities far from their homes or to use local remedies. Where respondents were aware of several methods (mainly pills and surgical options), they had little knowledge of the actual use and appropriateness. Misconceptions regarding the use of appropriate methods for dual protection also emerged with cases of women living with HIV using copper T to prevent HIV transmission. While experience of use of contraceptive methods seemed low in all groups, sterilization was common. All older widows in the respondent group in Tamil Nadu mentioned having undergone sterilization. The majority of them reported having undergone the procedure without their 4
consent. Among these some described having delivered their last child by caesarian section, as part of the PPTCT intervention, and waking up to find they had also been sterilized during the same procedure. Similar experiences were recounted by respondents in Maharashtra.
were approaching them for SRHRrelated information and referrals to services. Societal and internalised attitudes towards sexuality and the need for secrecy undoubtedly present additional barriers limiting the women's ability to openly request and access information as well as related services.
Low levels of STI and HIV prevention knowledge and practices – knowledge of condoms was higher than knowledge of other contraceptive methods. However, responses indicated low levels of use. No information could be collected on whether use was correct and consistent. Those widows in Tamil Nadu reporting sexual relationships described male partners not supporting condom use, even when either or both had disclosed their HIV positive status. This appeared to be common across most of the groups of widows interviewed.
Insufficient services – barriers to service access for widows exist at various levels including lack of availability and coverage of services, quality concerns and stigma and discrimination. Particularly in Manipur and in Tamil Nadu, SRHR services appeared not be available at sufficient scale, resulting in time and high costs for travel, waiting times because of insufficient or inappropriate personnel (e.g. only male doctors).
Despite low risk perception, young widows in Manipur and Tamil Nadu, when prompted with a list of specific symptoms, reported having experienced STI symptoms and having accessed treatment for them. However, recognition of these symptoms was not necessarily linked to an awareness of sexual transmission. While older widows in Manipur, Andhra Pradesh and Maharashtra had comparatively higher levels of knowledge of common STI symptoms and sexual transmission, knowledge of correct prevention methods was not consistent. In Andhra Pradesh, support group meetings for women have been providing information on STIs, which was reflected in good knowledge levels.
(iii) Information and services – inadequate and inaccessible Limited sources of information – responses consistently indicated that these women are in need of information with very limited options to seek it. They reported accessing some SRHR-related information from doctors, anganwadi workers and from CHAHA staff. Project staff consistently reported that widows
Poor quality and uncoordinated services – another major deterrent from public health services mentioned in all four states was the lack of privacy and confidentiality in hospitals and health care centres. These services were mostly not equipped for private consultations and doctors responded with judgmental attitudes. In Manipur concerns were raised that comprehensive SRHR services were not available and that specific services, such as PPTCT, STI treatment and family planning were all provided independently without coordination or linkages. Furthermore, no integration between SRHR and HIV has also resulted in services providers lacking the specific skills needed to address the SRHR needs of PLHIV for instance. Women recounted their stories of undergoing an HIV test in ANC settings, largely in a mandatory fashion without pre- or posttest counseling. Insufficient follow up under PPTCT programmes has resulted in transmission taking place during breastfeeding, due to inadequate information and follow-up for mothers. Stigma and discrimination – across all four states, all widows described negative experiences in the local health
services. They shared experiences of discrimination based on their widowhood, secondarily based on their HIV status and finally based on the societal norms and expectations not to be sexually active. In Tamil Nadu, Andhra Pradesh and Manipur, this was particularly common in public health service settings. Widows particularly highlighted the issue of doctors and nurses asking personal and intrusive questions as a deterrent in accessing public health services, and being kept waiting to be treated last. Other specific incidents were related to mistreatment when widows required abortions, which resulted in women resorting to traditional methods at home instead. While the majority of respondents relayed negative experiences in public health care settings, select cases shared showed that public health services did have the potential to deliver appropriate and accessible services.
Conclusions In addition to the sources of vulnerability for women in India, widows affected by HIV face additional challenges that increase their vulnerability to sexual and reproductive ill-health and violations of their rights. Sources of vulnerability are acting at a range of levels (see Table 2). This study clearly confirms that widows are sexually active – particularly those who have been widowed for a few years and in some cases through engagement in sex work. The findings also highlight that their knowledge levels are too low to assume that they are equipped with the information that would enable them to understand their own risks and vulnerabilities, seek appropriate information or adopt safe behaviours. In addition, the broader context of stigma and discrimination in the community, health system and within the family, as well as violations of sexual and reproductive rights, disempower these women further. In the context of existing programming, these findings support the conclusion that existing efforts are not meeting the needs of these women. 5
Table 2: Factors influencing the realisation of SRHR of HIV-affected widows Individual level
Family and community
Health systems and services
v Low levels of knowledge of most SRHR issues v
Inability to negotiate condom use
v
Engagement in sex work
v
Economic dependence
v
Lack of awareness of sexual and reproductive rights
v
Violations of sexual and reproductive rights in health settings and through abuse in the community and family
v Stigma, discrimination and expectations – due to HIV status and widowhood v
Breakdown or weakening of family and community support structures due to loss of husband and associated support
v
General attitudes towards sexuality of single women
v
Community attitudes and lack of prevention and support structures/services relating to sexual abuse and harassment
v
Lack of community systems' capacity and skills to deal with issues of sexuality, SRHR and violence and to address underlying factors of widows' vulnerability
v Inadequate coverage, quality, accessibility and appropriateness of SRH services,
specifically:
Policies and laws
6
–
Lack of comprehensive SRH services
–
Waiting times and lack of privacy
–
Lack of female doctors
–
Lack of specialized doctors
–
Lack of specialist knowledge of SRH needs of PLHIV
–
Stigma, discrimination and judgmental attitudes
–
Lack of preventive and protection services for sexual violence
–
Violations of rights – informed consent and bodily integrity
–
Lack of consistent supply of condoms
v Lack of coordinated, linked policies to guide integrated health service delivery v
Lack of implementation of protection and redress mechanisms for widows in cases of violations of sexual and reproductive rights, abuse and exploitation
v
Lack of systematic regulation of private health care provider practices
v
Lack of comprehensive approach to impact mitigation that address economic and social vulnerability factors
v
Weak procurement and supply chain management to ensure availability of condoms
v
Poor realization of sexual and reproductive and other human rights in the community and in health system
RECOMMENDATIONS Improve linkages between SRHR and HIV and ensure access to prevention interventions for PLHIV – while care and support programmes have aimed to meet HIV-related health needs they have not adequately addressed the prevention and sexual and reproductive health needs of these women affected by HIV. Lack of linkages between the SRHR and HIV programmes, policies and capacity among service providers has contributed to this. HIV care and support programmes should therefore be working along the full prevention-treatment-care-and-support continuum and address the SRHR needs of PLHIV and those affected by HIV. Adopt a comprehensive approach to impact mitigation addressing social and economic vulnerabilities – impact mitigation efforts have been largely focused on HIV-related care and support, and have to a lesser extent addressed underlying economic and social vulnerability. In the case of widows these include financial dependence, lack of opportunities and support for income generation, lack of accessible violence prevention and redress mechanisms and social attitudes towards widowed women and HIV. Impact mitigation programmes should therefore adopt a comprehensive approach to address the underlying sources of vulnerability and not limit themselves to HIV-related support needs. Scale up access to comprehensive, appropriate, accessible, affordable and good quality SRH services – the experiences of inadequate coverage of SRH services and the judgmental attitudes faced by widows in these areas highlighted the need for a comprehensive approach to SRHR, which address the need of single women and the full spectrum of services beyond reproductive health, without judgment and following a rights-based approach. Realise sexual and reproductive rights – a comprehensive approach to realizing the rights of women affected by HIV needs to be taken, which will require action at various levels, including through law reform to ensure property and inheritance rights do not discriminate against women, community awareness and sensitization, capacity building of health care providers, the establishment of protection mechanisms including redress and legal support, as well as mobilization of women themselves to claim their rights. 7
About India HIV/AIDS Alliance India HIV/AIDS Alliance (Alliance India) formally began its operations in India in 1999 with a view to intensify its mission of supporting community action to prevent HIV infection, meet the challenges of AIDS, and to build healthier communities. Alliance India is a diverse partnership that brings together committed organisations and communities to support sustained responses to HIV in India. Complementing the national response to HIV and AIDS, Alliance India works through capacity building,knowledge sharing, technical support and advocacy. Through a network of intermediary implementing organisations called Linking Organisations (LOs) and partners, Alliance India supports the delivery of effective, innovative, community-based HIV programmes to key populations affected by the epidemic. Alliance India aims to maximise the role and contribution of community action in halting and reversing the spread of the HIV epidemic (Millennium Development Goal 6). This approach recognises that civil society organisations have a key role to play as 'watchdogs', monitoring policy decisions and ensuring effective implementation of HIV programmes and services and promoting greater accountability. To support India's National AIDS Control Programme and the achievement of these international commitments, Alliance India has outlined four strategic directions that build on priorities articulated in the national and regional HIV environment. As part of the International HIV/AIDS Alliance's global strategic framework, they leverage the strengths of Linking Organisations and other implementing partners to support a more engaged and effective response to the epidemic in India and around the world. The four strategic directions outlined by Alliance India are: • Deliver scaled up quality community-based programmes and increase access to health and social services. • Increase civil society capacity to implement effective community responses. • Strengthen communities' influence in national programming and in national and international policy. • Strengthen the Alliance as a partnership of strong Linking Organisations. Alliance India's response to HIV is guided by certain core commitments. It strives to enable communities to play a central role in the response to HIV. It ensures that the vulnerable and marginalised people and communities are meaningfully involved in all aspects of the response. In so doing, it hears and respects the voices of those most vulnerable to and living with HIV. It is obligated to stay accountable to the people it supports and to those who support its work. Alliance India actively strives to challenge stigma and discrimination at individual, community and institutional levels. It makes all endeavours to implement programmes that are gender-sensitive. Alliance India is also committed to programming and policy efforts that are backed by evidence of what works and to maintain consistently high quality in its programme implementation and technical support. The technical expertise of Alliance India has evolved in response to what communities need to effectively address issues of HIV. As its programming has expanded in breadth and depth so has its capacity and ambition to address the complexities of HIV & AIDS in India. Alliance India's Linking Organisations and other implementing partners contribute vital experience and expertise to enrich these efforts. The technical themes at the core of Alliance India's work are HIV prevention, care & support, sexual and reproductive health (SRH) & HIV integration, drug use & HIV, and TB & HIV integration. Through the Technical Support Hub for South Asia, Alliance India brings its experience to provide technical support to civil society organisations in South Asia to improve implementation and impact of programmes and advocacy. Photo Credit: Donna M. Guenther/India HIV/AIDS Alliance/2010
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