Sexual and reproductive health and rights – Key issues for adolescents affected by and living with HIV Adolescents living with HIV face a range of unmet sexual and reproductive health (SRH) needs. While adolescents are sexually active, they have limited access to information. Adolescents show low levels of comprehensive knowledge regarding puberty, menstruation, contraception, safer sex and STIs including HIV. Alliance India conducted a qualitative study among adolescents living with and affected by HIV in Maharashtra, Tamil Nadu, Andhra Pradesh and Manipur. Adolescents consistently reported about sexual violence as an experience of their own lives or those of their peers, highlighting an immediate need for strong child protection measures. Adolescents living with HIV face additional challenges relating to their own physical development during puberty, attitudes about sexuality of PLHIV, isolation and weakened support structures, and stigma and discrimination. Current provision of services and information for adolescents is currently inadequate to meet their SRH needs. Access to information is limited without sexuality education and information in schools and from other sources. Social norms towards adolescent sexuality, HIV-related stigma and discrimination and insufficient coverage and coordination act as barriers to services.
Background With increasing access to treatment, people living with HIV and the associated longer longevity, people living with HIV are increasingly able to focus on quality of life and wellbeing. Similarly, improvements in survival rates among children living with HIV mean that a growing population of children and adolescents are living with HIV. In India, 7 million children are currently affected by HIV and estimates of children living
with HIV (CLHIV) indicate an increase in 1 these numbers over years to come. 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 partners2, 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 the context of CHAHA Alliance India has started exploring the issue of sexual and reproductive health and rights (SRHR) of the children it serves. Adolescent sexual and reproductive health and rights in India With a recent study3 from six states in India indicating that 11% of young people are having pre-marital sexual experiences (15-24 year olds) and more than half of young women married
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Country Progress Report, India. UNGASS, 31 March 2010. SASO, NMP+, PLAN, TASSOS and Alliance India Andhra Pradesh 3 International Institute for Population Sciences (IIPS) and Population Council (2010). Youth in India: Situation and Needs 2006-2007. Mumbai: IIPS.
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before the legal age of 184, the evidence clearly points to the fact that a significant proportion of adolescents in India are sexually active. Among those who are engaged in sexual relations (outside the context of marriage) only 3% of young women and 13% of young men reported consistent condom use. 35% of young women report that their first sex was not mutually consensual and 17% report experiencing symptoms of genital infections in the previous three months. One in six adolescent girls has begun childbearing and young women between 15 and 19 have the highest rates of unmet contraceptive need at 27%5. Although existing policies and programmes to some extent recognise the right of adolescents and youth to sexual and reproductive health counseling and services, service delivery is often not responsive to their unique needs, and there is considerable inconsistency in the extent of service delivery, with some groups, such as unmarried adolescents, remaining underserved6. Adolescents affected by and living with HIV present a community with specific needs - and appear to be facing particular gaps. While data from India on the specific SRHR needs of adolescents living and affected by HIV is limited, literature has clearly highlighted the specific SRHR needs and vulnerabilities of people living with HIV generally7. Children affected by HIV and AIDS are generally considered more vulnerable to exploitation, abuse and violence8. With their specific sets of challenges, HIV status and young age come together to deny adolescents living with and affected by HIV full realisation of their sexual and reproductive rights.
Studying the SRHR needs of adolescents living with and affected by HIV To contribute to the understanding of SRHR needs among adolescents living with and affected by HIV, Alliance India conducted a mini-study in selected districts across Maharashtra, Manipur, Tamil Nadu and Andhra Pradesh. Focus group discussions conducted separately among boys and girls affected by and living with HIV between the ages of 10 and 18 (with a total of 160 respondents), were used to gain insight into the levels of knowledge and practices among adolescents linked to their sexual behaviour and to analyse the particular sources of vulnerability.
Key Findings Low levels of knowledge and the right to information The study findings clearly indicated that adolescents affected by and living with HIV are facing many of the same challenges as their non4-5 International Institute for Population Sciences (IIPS) and Population Council (2010). Youth in India: Situation and Needs 2006-2007. Mumbai: IIPS. 6 Santhya KG and Jejeebhoy SJ (2007). Young people's sexual and reproductive health in India: Policies, programmes and realities. Regional Working Papers, No 19, South and East Asia. New Delhi: Population Council. 7 For example Chakrapani V et al. (2007). The sexual and reproductive health of people living with HIV in India: A mixed methods study. Indian Network for People living with HIV. 8
UNICEF (2006). Child Protection Information Sheet. 'Protecting Children affected by HIV/AIDS. New York: UNICEF.
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affected peers. Low knowledge levels of most SRH issues showed that adolescents are generally not receiving adequate information to empower them for informed decision-making and safe behaviours. While most respondents had basic knowledge of sex and sexuality, few among them had comprehensive understanding including of the changes they were undergoing during puberty including the onset of menstruation, and had experienced fear, unease and concern when they occurred. Knowledge of contraceptive methods was often limited to awareness of certain methods, but did not extend to more profound knowledge about use and appropriateness. Knowledge of condom use was also limited with only some individual respondents among boys in Manipur able to describe condom use and effectiveness in preventing HIV and other STIs. Most of the respondents however, particularly younger boys, had never seen a condom and were not aware of its uses. Levels of knowledge related to reproductive tract and sexually transmitted infections varied across the groups, with very limited awareness of STIs particularly among young adolescents (10-14) who, across the four states showed no or very low levels of knowledge of causes, signs and symptoms. Across all four states adolescents reported TV shows, movies including porn, and, in some cases, the internet as the main source of information on sex and sexuality. Mobile phones also appeared to play a significant role in taking and sharing pictures and movies among peers. While this may encourage discussion of sex and sexuality among adolescents, as the only source of information this raises concerns regarding its quality and appropriateness. Access to sexuality education in schools varied across states though overall can be summarized as inadequate. Where information was provided, it was limited to the biological basics, and did not cover any elements of life skills or comprehensive sexuality education. Despite efforts in Tamil Nadu to provide sexuality education in some selected English-medium schools and through NGOsupported efforts, respondents reported
inconsistent implementation. None of the respondents from this state – with one exception – reported receiving SRH information in school.
Adolescent sexuality – relationships and sexual activity Discussions among the respondents showed that social norms and expectations were guiding their behaviours and friendships from an early age. Parents were restricting contact between girls and boys and girls did not openly speak about being involved in any relationships with boys their age. Boys generally were more specific in describing existing relationships and sexual activity. In Manipur and Maharashtra, older boys directly spoke about being sexually active, and across all four states project staff confirmed that sexual relationships between adolescents were not uncommon. In Maharashtra, those older boys living with HIV who were engaged in sexual relationships reported not using condoms, which is consistent with the low levels of related knowledge observed in this group. It was challenging to engage adolescents in discussions about their own experience with STI symptoms, unwanted pregnancy and similar issues. However, incidents that were recounted by project staff and the respondents indicated that unprotected sex was indeed impacting adolescents' sexual and reproductive health. In Tamil Nadu, project staff recounted incidents of referring adolescent girls for STI diagnosis and treatment. Younger boys in Manipur were aware of friends' 3
experiencing STI symptoms after they had been in contact with sex workers. Girls in Manipur recounted incidents of unwanted pregnancy among peers and siblings.
Sexual and reproductive rights – the impact of lacking protection measures Adolescent girls spoke about feeling unsafe in particularly isolated places, because of the fear of being teased and harassed by boys and older men. Girls also identified particularly crowded places and public transport as unsafe and described being touched inappropriately by men in these locations. They described walking with their arms crossed over their chest to protect themselves. In Tamil Nadu and Manipur, adolescents also described incidents of abuse by community leaders, including the police, and during community events. 4
The fact that adolescents were consistently speaking about sexual violence as an experience of their own lives or those of their peers highlighted a glaring need for better child protection interventions. Almost all FGDs involved adolescents, both boys and girls, themselves highlighting their own experiences of abuse (in some cases more than one respondent per group) or of stories of abuse among their siblings or peers - mainly by family members or close neighbours. Young boys in Maharashtra shared stories of sexual abuse by uncles and neighbours, and about being forced to manually please older boys in the community. Project staff confirmed that sexual abuse was a factor in cases of HIV transmission and unwanted pregnancy and highlighted the need for better protection mechanisms for children in particular for those adolescents who are single or double-
orphaned and whose support structures have been weakened. In Tamil Nadu particular concerns were raised relating to early marriages which were occurring at younger ages and especially involving children in widowheaded households. Mothers are concerned about not being able to support them and agreeing to marriages at young ages.
Services and supplies – inadequate access None of the respondents in the adolescent groups reported direct experience of accessing SRH services. Project staff from Manipur however shared concerns that adolescents would not feel comfortable accessing any services for SRH-related concerns. The concept of youth-friendly health services was largely unknown and they felt that none of the services they were
aware of would meet the criteria. Furthermore, issues of lack of privacy and confidentiality in government health service settings, judgmental attitudes among service providers regarding adolescent sexuality and lack of capacity to address particular issues of people living with HIV were identified as barriers for young people's access. In Manipur consistent access to condoms was identified as a key concern in general for communities. Free condoms were not provided in sufficient number and were not actually distributed, while the price of condoms in pharmacies was described as prohibitively high for most communities under the CHAHA programme.
Key findings– the impact of HIV
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he study revealed that in addition to those vulnerabilities faced by adolescents in general – which include the impact of social norms relating to adolescent sexuality on individual behaviours, adequate information and service provision and access, and adoption and implementation of supportive laws - adolescents living with and affected by HIV face specific issues. These provide important insights for future programming approaches as the number of adolescents living with HIV will increase over the coming years. Development - Adolescents living with HIV raised concerns related to their delayed onset of puberty and physical development and their ability to raise a family when they are older. In Maharashtra, both older and younger boys living with HIV specifically spoke about their HIV status in relation to relationships, describing that they were teased by their peers for their stunted growth and sexual inactivity. Right to a healthy sex life - Boys living with HIV in Maharashtra described not wanting to engage in any relationships because they were afraid of 'spoiling other people's lives with HIV'. In Tamil Nadu, girls living with HIV raised concerns about whether they would ever be able to get married and have children. They felt they had to control their desires because they are living with HIV. Access to information - Issues relating to family support were particularly pertinent among adolescents who had lost one or both parents to HIV, where the widowed parent or other family members struggled providing the same level of ongoing support and supervision. The lack of family structures could limit the children's access to even basic information related to health and hygiene and especially younger adolescents at risk given the amount of time they spent alone. Access to services - in addition to the general lack of appropriate and accessible SRH services for adolescents, stigma and discrimination against PLHIV in health settings would further compound the difficulties in accessing services and requesting information, since discussion of their specific needs could require disclosing their status. Isolation - Furthermore, HIV status of adolescents seemed to influence their level of engagement with peers and the community. Young adolescent girls living with HIV in Andhra Pradesh seemed to be isolating themselves from their peer group due to self-stigma and feared discrimination. Among the older girls living with HIV in Andhra Pradesh, only a few reported attending school regularly, due to frequent sickness and the need to contribute to the family income.
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Informing specific responses for adolescents affected by and living with HIV The study findings clearly indicated that adolescents affected by and living with HIV are facing many of the same challenges as their non-affected peers, as documented in other sources. As is generally the case for communities particularly vulnerable to sexual and reproductive ill-health and to violations of sexual and reproductive rights, the factors that influence this vulnerability act at different levels – at the levels of the individual, the family and community, of health services and of policies and laws. Alliance India's mini-study confirmed this – adolescents' access to reliable information was being impeded by social attitudes towards their sexuality. Similarly, the findings clearly point to the fact that adolescents, particularly older groups (1518 year olds) are sexually active and are exploring relationships and intimacy with their peers. Even those who are not active need and have a right to
information and skills that will equip them to adopt safe behaviour once they are engaged in sexual relationships. Furthermore, a complete lack of appropriate and accessible services, especially catering to those who are unmarried, means that adolescents are not able to receive services they need, even if they were empowered to seek them. Strikingly, the levels of sexual violence against children and adolescents add a further factor exacerbating their vulnerability and identify a desperate, immediate need to ensure child protection and violence prevention interventions.
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RECOMMENDATIONS Improve linkages between SRHR and HIV and ensure access to prevention interventions for adolescents living HIV – while the number of adolescents living with HIV currently remains relatively small, limited recognition of their needs to date has resulted in an inadequate response. 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 people living with HIV in general, and specifically of adolescents. 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 including child protection – impact mitigation efforts have been largely focused on HIV-related care and support, and have to a lesser extent been able to address child protection issues. Given the particular experiences of isolation and disruption of family and community support structures, responses for adolescents living with and affected by HIV require dedicated interventions to ensure they are protected from violence within the family and community. Community-centered approaches to prevention, response and redress, such as Child Welfare Committees provide an opportunity to scale up responses that are specific to local needs, and require capacity to deal with HIV-related concerns. Scale up access to comprehensive, youth-friendly SRH services – coverage of SRH services that are youth-friendly is inadequate and further compounded by judgmental attitudes towards sexuality of PLHIV, adolescents and those who are unmarried. There is a need for a comprehensive approach to SRHR, which address the needs of all young people, irrespective of status, gender or age, including the full spectrum of services beyond reproductive health, following a rights-based approach. Realise sexual and reproductive rights for adolescents – the impact of social norms of adolescent sexuality adversely impacts the realization of sexual and reproductive rights of this age group. A comprehensive approach to realizing the rights of adolescents in general, and in particular of those living with and affected by HIV, needs to be taken, which will require action at various levels, including through implementation of a legal framework , 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 adolescents themselves to claim their rights.
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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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