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Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
Sexual and reproductive health and rights for young people living with HIV
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Sexual and reproductive health and rights for young people living with HIV

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A meeting brief from a consultative stakeholder meeting for HEARD's Sexual and Reproductive Health and Rights (SRHR) Scoping Study. In recognition of the intersection between sexual and reproductive …

A meeting brief from a consultative stakeholder meeting for HEARD's Sexual and Reproductive Health and Rights (SRHR) Scoping Study. In recognition of the intersection between sexual and reproductive health (SRH) issues with the areas of youth and gender, HEARD researchers conducted a scoping study in 2013 to inform a research agenda in the broad area of young people and SRHR for 2014 onwards. Follow the link to find out more on the study www.heard.org.za/research/projects/sexual-and-reproductive-health-and-rights-scoping-study#editable-region

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  • 1. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 201312 Consultative Stakeholder Meeting HEARD University of KwaZulu-Natal, Durban 24 October 2013 For further information please contact: Andrew Gibbs gibbs@ukzn.ac.za
  • 2. 12
  • 3. Table of contents Background .................................................................................... 1 HEARD consulted widely...................................................................................3 HEARD and the Gender Equality and HIV Prevention Programme.................. 3 Plenary discussions ......................................................................... 5 The psychosocial support needs of young people living with HIV.................... 5 Disclosure to partners, negotiating relationships, gender-based violence and sexual identity...................................................................................................5 The reproductive health needs and rights of young people living with HIV....... 6 Plenary discussion and points for reflection......................................................6 Group discussions .......................................................................... 8 Reproductive health choices, safer conception and options for young people living with HIV – Group one...............................................................................8 Disclosure and negotiating relationships, including GBV – Group two........... 10 Public health sector, service delivery and treatment – Group three................ 11 Interventions to support young people living with HIV - Group four................ 12 From research practice to policy – Group five................................................13 Prioritising the issues .................................................................... 15 Concluding thoughts ..................................................................... 16 Appendices .................................................................................... 18 Stakeholder meeting agenda..........................................................................18 Plenary presentations.....................................................................................19 List of stakeholder meeting participants..........................................................24 Authors: Samantha Willan, Candice Reardon, Tamaryn Crankshaw, Leandri Pretorius and Andrew Gibbs.
  • 4. Acronyms ART Antiretroviral treatment ESA Eastern and Southern Africa GBV Gender-based violence GIPA Greater involvement of people living with HIV GRIPP Getting research into policy and practice HEARD Health Economics and HIV and AIDS Research Division IPV Intimate partner violence LGBTI Lesbian, gay, bisexual, transgender and intersex people MIWA Meaningful involvement of women living with HIV PMTCT Prevention of mother to child transmission SRH Sexual and reproductive health SRHR Sexual reproductive health and rights
  • 5. 12 Background The global HIV and AIDS epidemic disproportionately affects women, par- ticularly younger women in sub-Saharan Africa where approximately 72% of young people living with HIV are female.1 A key driver of women’s vulnerability is the profound ways in which unequal gender relationships are produced and sustained at the global, national and local levels. Policies, economic systems, funding and widely held norms about appropriate roles of women and men, all contribute to contexts in which women’s sexual subordination to men is sustained through women’s economic and social dependency.2 Men are also negatively affected by gender inequalities; they access treatment at lower rates than women and many men struggle with their inability to conform to rigid gender roles and expectations.3 Increasingly, it is recognised that gender inequalities will only be effectively tackled if interventions go beyond individual behaviour change to challenge structural issues and work at multiple levels: globally, regionally and nation- ally and through policy, community and group interventions. Only through a concerted effort at multiple levels will gender inequalities be tackled leading to more effective HIV prevention. Despite this, little is known about effective, evidence-based approaches to achieving this.5 Gender inequalities drive and are further entrenched through the high rates of childbearing among adolescents. Sub-Saharan Africa has markedly higher childbearing rates among adolescent females than the rest of the world.6 In South Africa, approximately one third of teenagers fall pregnant and of these around two thirds are unplanned pregnancies.7 The region also has particu- larly high maternal mortality rates among young women, accompanied by low contraceptive usage and a disproportionate burden of HIV care borne by women. “The overall picture of young people living with HIV is predominantly African and predominantly female.” UNICEF (2011)4 “Among the 14.3 million adolescent girls that gave birth in 2008, one of every three was from sub-Saharan Africa.” Guttmacher Institute and UNFPA 2009 1 UNICEF. (2011). Opportunity in Crisis: Preventing HIV from early adolescence to young adulthood. New York: UNICEF. 2 Campbell, C. and Gibbs, A. (2010). Poverty, AIDS and Gender (pp. 327-332). In: Chant, S. (ed.) International Handbook on Poverty and Gender. Cheltenam, UK: Edward Elgar. 3 Greig, A., Peacock, D., Jewkes, R., Msimang, S. (2008). Gender and AIDS: Time to act. AIDS, 22, S35-S43. Doi: 10.1097/01.aids.0000327435.28538.18. 4 UNICEF. (2011). Opportunity in Crisis: Preventing HIV from early adolescence to young adulthood. New York: UNICEF. 5 Ibid. 6 UNFPA and PRB. (2012). Status report on adolescents and young people in sub-Saharan Africa: Opportunities and challenges. Pretoria: UNFPA 7 Jewkes, R., Morrell, R and Christofides, N. (2009). Empowering teenagers to prevent pregnancy: Lessons from South Africa. Culture, Health Sexuality, 11(7), 675-688 8 UNESCO. (2013). Young people today. Time to act now. Why adolescents and young people need comprehensive sexuality education and sexual and reproductive health services in Eastern and Southern Africa. Paris: UNESCO. “Approximately 50% of adolescents in sub-Saharan Africa have an unmet need for modern forms of contraception.” UNESCO (2013)8 Meeting Report: SRHR and Young People Living with HIV, HEARD, October 20131
  • 6. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 2013 2 Eastern and Southern Africa (ESA) is home to the largest number of young peo- ple living with HIV. In 2012 an estimated 2.6 million young people (15-249 ) were living with HIV in the ESA region.10 As a result of scale up of antiretroviral treat- ment (ART) programmes in the region, an increasing proportion of young people who acquired HIV vertically (either in utero, during childbirth or breastfeeding) are transitioning to adolescence. Young people living with HIV, whether they have acquired HIV horizontally or vertically,11 have particular sexual and reproductive health rights (SRHR) and needs, and these rights and needs are often neither wholly acknowledged nor specifically addressed in policy, research or interven- tions.12 13 Furthermore, to date there is very limited research around whether young people who acquired HIV interventically or horizontally have distinct sexu- al and reproductive health (SRH) needs. In other words, we ask ourselves at the beginning of this work whether the SRHR needs and experiences of both popu- lations are similar or are there any differences? And if differences exist, what do these mean for policy and programmatic work? Within this context of a significant number of young people living with HIV across ESA, and recognising they have SRHR and needs, some of which are common across all youth, and some of which are particular to this population, HEARD and its Gender Equality and HIV Prevention Programme highlighted this area as criti- cal for further research, policy intervention and programmatic work. Our work is premised on the recognition that young people living with HIV have access to a set of universal SRHR that can provide a supportive framework to address their particular SRH needs. Furthermore, our point of departure for this work is based on the principles laid out in the Positive, Health, Dignity and Pre- vention policy framework,14 which asserts that the protection of young people’s rights to SRH is crucial to preventing new HIV acquisitions. “In 2009, twenty countries in sub- Saharan Africa accounted for an estimated 69% of all new HIV infections globally in young people. About one out of every three young people newly infected with HIV in 2009 was from South Africa or Nigeria.” UNICEF (2011)13 9 While there are no universally accepted definitions of adolescence and youth, in this report we use the United Nations definition of ‘adolescents’ to include persons aged 10-19 years and ‘youth’ as those between 15-24 years. Together, adolescents and youth are referred to as ‘young people’, encompassing the ages of 10-24 years. 10 UNESCO. (2012). Young people today. Time to act now. Why adolescents and young people need comprehensive sexuality education and sexual and reproductive health services in Eastern and Southern Africa. Paris: UNESCO. 11 We recognise there are a number of terms currently being used, including “perinatally infected”, “mother-to-child-transmission”, “infected sexually” to describe how young people came to be infected with HIV. We use “acquired HIV vertically or horizontally” as we believe this to be the least stigmatising language. 12 WHO. (2013). HIV and adolescents: Guidance for HIV testing and counselling and care for adolescents living with HIV: Recommendations for a public health approach and considerations for policy-makers and managers. Geneva: WHO. 13 UNICEF. (2011). Opportunity in Crisis: Preventing HIV from early adolescence to young adulthood. New York: UNICEF. 14 GNP+ and UNAIDS. (2011). Positive Health, Dignity and Prevention: A Policy Framework. Amsterdam: GNP+. Being young Living with HIV Young people living with HIV have a particular set of experiences and needs in relation to their SRH precisely because of these overlapping identities.
  • 7. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 20133 In advance of the consultative stakeholder meeting HEARD conducted a liter- ature scan which highlighted particular areas requiring further research and in- terventions. We considered these points to be an initial starting point for dis- cussions, and recognised their potential to evolve during discussions. The initial areas identified included: • Reproductive rights and needs for young people living with HIV including: ac- cess to contraception information and commodities, dual contraception and safer conception options, • Adherence toART and transitioning from paediatric to adultART programmes, • Ways of integrating SRHR services and HIV services, • Psychosocial support needs, and • Negotiation of relationships, partner disclosure, gender-based violence (GBV) and sexual identity among young people living with HIV. HEARD consulted widely... Building on HEARD’s recognition of the need for more work in this area and in acknowledgement of the tremendous work being done nationally and in the re- gion, HEARD convened a consultative stakeholder meeting on 24 October 2013, in Durban, South Africa. We were joined by 36 individuals from key organisations working with young people living with HIV, and/or working on SRHR. A list of the meeting participants can be found in the Appendix section. The aim was to gain a better understanding of the emerging issues, unmet research and programmatic needs and possible areas for policy reform, in relation to young people living with HIV and their SRHR. The meeting aimed to assist HEARD to identify critical are- as for research, policy reform and programmatic interventions. The meeting also created space for individuals and organisations working in the area to network and share their work, good practice and challenges. Following the meeting, this report was produced to share the discussions and priorities across the sector, and it is a useful document to anyone working on these issues. HEARD will use the meeting discussions and report to inform our future project work in this area and in the establishment of a Project Advisory Committee. The Gender Equality and HIV Prevention Programme HEARD conducts applied research to support development interventions aimed at mobilising evidence for impact in health and HIV in ESA. HEARD has been situated since 1998, at the University of KwaZulu-Natal in Durban, South Africa and collaborates with a range of institutional and individual partners spanning the globe. HEARD’s mission is to inspire health and development strategies, policies and practices that improve the welfare of people in and beyond Africa. HEARD has a wide portfolio of research relevant to this area including research into HIV behavioural and biomedical prevention for young people and compre- hensive sexuality education for school-going learners, including learners with disabilities. The latter research area included a study for the South Africa Depart- ment of Education to assess the implementation and delivery of the Life Orienta- tion programme in schools. This knowledge and experience equips us to move into additional research in this area. “HEARD’s mission is to inspire health and development strategies, policies and practices that improve the welfare of people in and beyond Africa.”
  • 8. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 2013 4 The Gender Equality and HIV Prevention Programme was established within HEARD in 2009 to provide a focal point for strengthening the response to gender inequalities in HEARD’s work and more broadly. It was mandated to build on HEARD’s areas of focus and address the major gaps within gender equality and HIV. During 2009-2010 time was spent setting up the Programme, including hosting a critical think tank on gender and HIV priorities, establishing a Programme Adviso- ry Committee, consolidating HEARD’s work in this area and undertaking reviews. This ensured the Gender Programme addressed the most pertinent questions in the field of gender and HIV. The purpose of the Programme is to: Support regional excellence in gender and HIV. To enable African leadership to strengthen policies and interventions that tack- le gender inequalities as a route to achieving HIV prevention in ESA, with a specific focus on community and structural level interventions. In practice this means the Gender Programme undertakes research and interventions on gender and HIV. It uses this new evidence to inform and lobby for policy change to strengthen how HIV programmes and policies integrate gender inequalities to prevent HIV. SRHR has always been a core focus of our work and cuts across all policy, research and programmatic interventions within the programme. In addition, the Gender Pro- gramme has always worked closely with organisations of people living with HIV, especially women living with HIV. This has been critical in shaping our work and ensuring that through active input from people living with HIV our work is mindful of their particular rights and needs and is relevant to the sector. Furthermore, we are committed to participatory, community-based research, and the principles of ‘nothing about us without us’ as embedded in the Greater In- volvement of People Living with HIV (GIPA) and the Meaningful Involvement of Women Living with HIV (MIWA) principles. These principles will be realised both in how the research will be conducted and through the establishment of a Project Advisory Committee as mentioned above.
  • 9. The morning’s plenary session included three presentations by key individuals currently working in the area of SRHR and/or with young people living with HIV. The choice of focus areas was informed by HEARD’s in-house literature scan that highlighted important areas in need of discussion and future research. Presentations: • Prof. Jane Rarieya and Ms. Santhana Gengiah from the Human Sciences Research Council on the psychosocial support needs of young people living with HIV, • Ms. Nokhwezi Hoboyi from the Forum for the Empowerment of Women sum- marised the pressing issues facing young people living with HIV in relation to the negotiation of relationships, disclosure to partners, GBV and sexual identity, and • Prof. Jenni Smit from MatCH (Maternal, Adolescent and Child Health) who provided insight into some of the reproductive health needs and rights of young people living with HIV. The psychosocial support needs of young people living with HIV Prof. Jane Rarieya provided a brief description of the most salient psychosocial needs and challenges young people living with HIV might experience, including the loss of important caregivers, stigma and discrimination and support and coun- selling to enable disclosure and adherence to chronic medication. Reinforcing the heterogeneity of young people, she emphasised that the responses of young people living with HIV to their emotional distress will vary and can include high risk behaviours, poor social problem solving, low self-esteem and treatment ad- herence difficulties. She believes that more effort and attention needs to focus on altering young people’s self-efficacy, behavioural intentions and ultimately their behaviour – an outcome that few interventions have shown substantial ability to change. Notable gaps in the area, she believes, include effective interventions to strengthen the parent-child relationship and to deliver services to youth at risk. She also urged researchers to search for and adopt improved methodologies for capturing data on sensitive topics. Disclosure to partners, negotiating relationships, GBV and sexual identity Nokhwezi Hoboyi’s presentation was informed by the challenges and issues emerging from her conversations with young people living with HIV. She empha- sised that the concerns and anxiety in disclosing their HIV status to partners was one of the primary difficulties young people living with HIV faced. This is com- pounded by stigma and discrimination and a lack of youth friendly services for young people living with HIV, particularly mental health and psychosocial support Plenary discussions Meeting Report: SRHR and Young People Living with HIV, HEARD, October 20135
  • 10. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 2013 6 “…young people’s reproductive needs must be viewed with a wider lens than solely ‘contraception’.” services. Whilst recognising the efforts being made in these areas, she argued that greater attention needs to be paid to addressing sexuality, same-sex rela- tionships and GBV in schools and health facilities, with the particular experiences of young people living with HIV taken into account within these responses. Furthermore, Hoboyi reminded us that funding cuts are substantially hampering the efforts of civil society to provide education and awareness about these issues. The point of departure for future work in the area, she proposed, must begin with the documentation of our successes and a commitment to the empowerment of young people to participate in our research projects. The question of how best to integrate SRHR with HIV services in health systems should also become a priority on research agendas. The reproductive health needs and rights of young people living with HIV Prof. Jenni Smit reiterate that young people living with HIV remain young peo- ple with sexual and reproductive desires and needs that evolve as they develop and transition through relationships. She urged that young people’s reproductive needs be viewed with a wider lens than solely ‘contraception’, with appropriate attention placed both on what is to be delivered as well as how this should be de- livered, i.e. through youth friendly services. In her view, both health workers and schools should take responsibility for helping young people living with HIV to plan for and achieve safe pregnancies. She reminded us that many health workers, in particular, do not know how to provide counselling and education to people living with HIV about their fertility desires. She also noted that on the rare occasion these discussions do take place, men are usually not involved. Her presentation also drew attention to the process of achieving safer conception among couples living with HIV and their contraceptive needs as well as the expanding mix of contraceptive options that are available and endorsed within the Revised South African Contraception and Fertility Planning Policy and Service Delivery Guidelines and Clinical Guidelines. She noted the rising popularity of long acting reversible contraceptive options such as intrauterine devices and progesterone implants that are well designed for young people. Plenary discussion and points for reflection The inputs were followed by discussion and reflection among workshop partic- ipants. Several participants noted particular marginalised and/or underserved groups such as migrant youth, lesbian youth and young people with disabilities, some of whom may be more vulnerable to acquiring HIV and are often overlooked in health care services and education and communication materials. While young people in the clinic command substantial attention and care from health workers (albeit with limitations), participants were reminded that the majority of young people living with HIV do not access HIV counselling and testing (and therefore are not aware of their HIV status). Moreover, even those who do test, and find themselves living with HIV, do not necessarily present at clinics or access treat- ment, and may have limited social and psychological support. Therefore, young
  • 11. people living with HIV who are outside of the health care system may engage in riskier practices and have poorer health than those within the health care system. The unique needs and experiences of young people were well acknowledged in the discussion. The evolution of patterns of sexual activity, contraceptive and family planning needs across the life course of young people were readily accept- ed. There was consensus that the way we conduct research with young people should be informed by our understanding of their heterogeneity. Furthermore, this understanding of their heterogeneity should influence how we communicate what we know to young people and deliver services to them. The plenary discussed the importance of a broad perspective on disclosure, safer conception and reproductive health choices. Several individuals emphasised that the right to safer conception and how this is facilitated in the health facilities is something that was rarely engaged with across the region, apart from in small localised projects and studies. Similarly, the need for supporting a broad SRHR agenda for young people living with HIV was also discussed. The necessity of health worker training in this area in order for health workers to willingly provide choices to young people was highlighted as a crucial area for intervention. Government responsibility and accountability in the area of SRHR for all young people, including those living with HIV, was also highlighted. Participants who raised this were most concerned about ensuring government was held account- able for policy implementation, for example delivering an appropriate mix of con- traceptive options, and how this could be achieved. The need to deliver research that would force government to act was believed to be critical in this regard. The ability to influence government actions and policies circles back to a key is- sue that was raised in the discussion time, that of consolidating and showcasing successes. Individuals believed there were successes in programmatic work that should be shared and replicated, but little had been done to document these. This call for improved documentation, publications and sharing within the sector was overwhelmingly supported. Further to the documentation of what works, partici- pants also believed that comparisons between different models and packages of interventions were necessary, with cost effectiveness being an important criteria for decisions about effective interventions. The issue of appropriate research methodologies for young people living with HIV garnered much discussion from participants. Participants discussed the need to explore alternative methodologies for youth research and questions were raised about what methods exist for this. Suggestions on alternate research method- ologies were provided, some of which included the integration of software and mobile technology, participatory approaches that involve youth in research and questionnaire design and innovative and creative uses of questions about sexual engagement. The need to champion the ‘slow research movement’ that involves local capacity building of research participants was also emphasised. Related to the way we do our research, a participant also urged the group to reflect on the contexts in which we engage with youth; whether these are schools, health facilities and communities. This reflection will allow consideration of whether any groups are being prioritised above others and to identify which areas (and there- fore which youth) are being neglected. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 20137
  • 12. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 2013 8 Following the plenary inputs and discussion the facilitator reflected on some emerging core themes that appeared to warrant further in-depth discussion. She reflected these back to the group and following some discussion, the following five areas were agreed upon for group work: • Reproductive health choices, safer conception and options for young people living with HIV (Group one); • Disclosure and negotiating relationships, including GBV (Group two); • Public health sector, service delivery and treatment (Group three); • Interventions to support young people living with HIV (Group four); and • From research practice to policy (Group five). Individuals then self-selected into different groups and had an hour’s discussion. They were asked to discuss the topic area and then identify three priority areas for research. These group discussions are summarised below. Reproductive health choices, safer conception and options for young people living with HIV – Group one Reproductive health includes the prevention of unintended pregnancies through safe and accessible contraception, access to comprehensive termination of preg- nancy services and supporting planned and safer pregnancies through safer con- ception strategies. Every woman has the right to choose: whether she wishes to have children, the number and spacing of any children, when to conceive, whether to use contraception and what contraception to use. The protection and realisation of women’s rights to reproductive health is considered crucial to the attainment of Millennium Development Goals 3, 5 and 6.15 South African policies guarantee a broad range of contraceptive options, and these need to be made available to youth, in particular attention needs to be given to the female condom. Regionally, the picture differs, with some countries having more progressive policies then others. Young women who are pregnant, whether living with HIV or not, require particular support including: prevention of mother to child transmission (PMTCT) information and services, psychoso- cial support, information about their right to terminate the pregnancy, ante- and post-natal support. The group also noted with concern the increasing evidence of coerced sterilization of young women living with HIV.16 Both young people living with and without HIV have reproductive health needs and rights. However, greater attention needs to be paid to the differing and par- Group discussions 15 Gerntholtz, L., Gibbs, A., Willan, S. (2011). The African Women’s Protocol: Bringing attention to reproductive rights and the MDGs. Plos Medicine, 8(4), doi:10.1371/journal. pmed.1000429 16 Strode, A., Mthembu, S., Essack, Z. (2012). “She made up a choice for me”: 22 HIV-positive women’s experiences of involuntary sterilization in two South African provinces. Reproductive Health Matters, 20(39S), 61–69. doi: 10.1016/S0968-8080(12)39643-2.
  • 13. ticular needs of youth living with HIV, and to the different age groups of youth within this population. Age-appropriate reproductive health support and advice was identified as a key consideration for future work. The group identified three main research priority areas for the sector: 1. Effective, comprehensive sexuality education (Including reproduc- tive health and rights) Young people living with HIV have fertility desires and with ART can live long and healthy lives. They need to be informed about their conception rights and choices and about safer conception strategies, should they de- sire to have children. The role of ART has changed the landscape of sexu- ality education and the message that should be delivered to young people. As with all young people, young people living with HIV should be exposed to good quality comprehensive sexuality education, which should focus on: building young women’s autonomy, self-awareness and self-esteem so that they are able to make the optimal choices for themselves; sexuality knowledge; gender transformative education; life skills and life planning. Work should be done with young women living with HIV to support choices around fertility so they are emotionally and psychological prepared to have a child. Men and teenage fathers need to also be involved in comprehen- sive sexuality education including gender transformation and reproductive health education. There are numerous regional policies and guidelines around the SRHR services that should be made available to young peo- ple, and these need to emphasise the rights of young people living with HIV to SRH services, and (where they exist) we need to advocate for the implementation of relevant policies and guidelines. 2. Information, access to and availability of contraceptives There is a pressing need for increased knowledge about contraceptive options and their correct use. However, knowledge is not enough; access to, and availability of, contraceptives is fundamental. This is dependent upon effective commodity supply chain management and distribution. It is critical to address the inconsistent pattern of supply of contraceptives across the region. More work is needed to ensure that all young people across Southern Africa have access to a range of contraceptives, as well as accurate information. The role of the health care workers in building young people living with HIV’s knowledge and access to contraception is also a key feature. Furthermore, additional research and knowledge shar- ing is needed around the potential risks for people living with HIV who take the hormonal contraceptive, Depro Provera. Finally, it was noted that dual contraception, although rarely discussed or encouraged by health workers with their young clients, needs greater promotion from health staff. 3. Translating increased information and knowledge of reproductive health and rights into behaviour change Extensive discussion was held on how to translate knowledge of SRHR into behaviour change. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 20139
  • 14. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 2013 10 There are many interventions working on this and the group reflected on how to address this question; for example, do we require further research, or do we need to scale up existing interventions more effectively, or do we need in- creased dialogue between the researchers and programmers. Disclosure and negotiating relationships, including GBV – Group two For young people living with HIV there are two aspects around disclosure of their HIV status they may experience. The first, primarily for young people who acquired HIV vertically, is the disclosure of their HIV status from their caregiver to themselves. The other aspect is the young person’s own disclosure to others, be they friends, family or sexual partners. Globally, there is significant evidence that women disclosing their HIV positive status to their sexual partners can lead to increased levels of violence.17 As such, disclosure of one’s HIV positive status cannot be removed from complex relationship dynamics of age, gender inequali- ties, economics and power more broadly. There are also a range of legal and pol- icy frameworks that support and hinder young people’s autonomy in disclosure, including the actual, or considered criminalisation of HIV transmission in some countries.18 The group identified three main research priority areas: 1. What needs to be in place for successful disclosure to young people living with HIV? There is an increasing body of evidence that suggests disclosure of a child’s HIV status to them by their caregiver should occur at a young age. This enables young people to make sense of their lives and understand the additional healthcare they are accessing as well as the medication they are taking. In terms of policy there was a marked tension between the rights of the adult caregiver to determine what they see as the correct age at which the child would be disclosed to and the rights of the child to know about their own health. Often, the rights of the caregiver are prioritised. There are a number of interventions already underway that focus on supporting the process of disclosure by the caregiver to the child living with HIV. Many organisations have well developed manuals and activities and a number of these are currently being evaluated. 2. What needs to be in place for successful disclosure by young peo- ple living with HIV? The decision to disclose one’s HIV positive status by a young person has to be from a position in which the young person has the autonomy to decide if, when and how this disclosure takes place. However, young people are embedded in complex relationships structured by a range of dynamics in- cluding gender inequalities, gender-based violence and economic inequal- ities. Furthermore, young people may not be in the position to adequately assess the consequences of disclosure (whether positive or negative), in 17 Hale, F. M. Vazquez (2011). Violence Against Women Living with HIV/AIDS: A Background Paper. Geneva: ICW Global 18 Jurgens, R. J, Cohen, E., Cameron, S., Burris, M., Clayton, R., Elliott, R., Pearshouse, A., Gathumbi Cupido, D. (2009). Ten reasons to oppose the criminalization of HIV expo- sure or transmission. Reproductive Health Matters 17(34), 163-172.
  • 15. particular the potential violence against women that has been documented globally around disclosure. Working with young people to build their ability to critically assess who they may want to disclose to and how they would do this remains a significant challenge, especially given the issues of vio- lence and stigmatisation that have been well documented. From a legal framework a number of countries in ESA have explicitly crim- inalised HIV transmission, placing the burden on young people to disclose their HIV status to their sexual partner, even if they are highly adherent to ART with low viral loads and using female or male condoms. This legal framework is particularly detrimental to women.19 3. Health workers’ perceptions and counselling skills to support deci- sion making around disclosure to and by young people living with HIV Health care workers are at the frontline in providing support to young peo- ple living with HIV, and yet they are often overburdened and have limited training in the specific issues young people living with HIV face. As resourc- es for health decline, health care workers will increasingly be faced with supporting caregiver decisions about disclosing to young people living with HIV. They will also need to provide support and assistance with regards to their decisions about disclosure and how best to negotiate relationships. There are currently few structures in place to support health care workers to achieve this. Public health sector, service delivery and treatment – Group three The discussion around the public health sector moved through a range of issues including: HIV disclosure, integration of services for SRHR with other services, ART adherence, creative approaches to encourage uptake of services and po- tential ways of encouraging difficult to reach populations to access health ser- vices. Two groups of individuals received particular focus during the discussion: health workers, reflecting on their roles and levels of competence in managing the disclosure process; and young people who acquired HIV vertically either in utero, during child-birth or breastfeeding, reflecting on their experiences of disclo- sure and the developmental impact of HIV and ART. The group identified three main research priority areas: 1. “How to make SRHR services sexy for young people?” Creative and innovative approaches to enhance uptake and retention of young people living with HIV in SRH services Among young people in general there is a low demand for SRH services, pointing to the need to better understand how to build demand for servic- es and how to ensure services and facilities are relevant, appealing and what youth want. Different approaches to encourage youth to access SRH services were discussed, e.g. literacy programmes and the role of sport to Meeting Report: SRHR and Young People Living with HIV, HEARD, October 201311 19 Jurgens, R. J, Cohen, E., Cameron, S., Burris, M., Clayton, R., Elliott, R., Pearshouse, A., Gathumbi Cupido, D. (2009). Ten reasons to oppose the criminalization of HIV expo- sure or transmission. Reproductive Health Matters 17(34), 163-172.
  • 16. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 2013 12 encourage clinic attendance. Creative and innovative approaches are also needed at the clinic and service delivery level. And while these points apply to all youth, the group emphasised the importance of considering the spe- cific changes necessary to draw in young people living with HIV to ensure their uptake of SRH services. 2. How to include ‘difficult to reach populations’ of young people living with HIV within SRHR services? HIV acquisition is shaped by social inequalities. Therefore, SRH services for young people living with HIV need to recognise and reflect the vary- ing realities, experiences and needs within those groups, including those youth who are disabled, out of school, lesbian, gay, bisexual, transgender, intersex or migrants. Questions the group grappled with that require further research include questions about: how access to and uptake of SRH ser- vices can be increased among hard to reach populations of young people living with HIV, and ways in which services need to be adapted to accom- modate the unique SRH needs and experiences of different sub groups of young people living with HIV. 3. Developing a better understanding of ART adherence challenges among young people who acquired HIV vertically. Disclosure of HIV status to young people by caregivers and health staff may inadvertently precede and/or create adherence challenges among young people living with HIV. Adherence needs be considered in relation to other issues, including the disclosure process, psychosocial adjustment and acceptance of personal HIV status as well as the wider economic, social and political context young people live in. This is a relatively new challenge in the sector as we work to support the first cohort of adoles- cents who acquired HIV vertically and who are now reaching their teenage years. Additional work is needed to understand whether they have particu- lar needs and if so how they are best met. Interventions to support young people living with HIV - Group four The group discussion focused on what can be done to increase participation of young people living with HIV in research and programme design and delivery. This was seen as critical to ensure effectiveness and sustainability of responses for this population. Concern was expressed that in most countries across the region current legislation related to minors is restrictive and conflicting. For ex- ample, in South Africa, the legal age of consent at sexual debut, marriage and access to contraception and termination of pregnancies differs. In addition, shifts in funding priorities may well reverse gains made and threaten the sustainability of successful programmes. Parallel to these funding shifts and cuts, the majority of interventions are being driven by community service organisations and devel- opment partners, despite a strong recognition that this work is the responsibility of governments and the public sector.
  • 17. The group identified three main research priority areas: 1. Meaningful involvement of young people living with HIV in the design and delivery of programmes and research to reduce their vulnerability, and increase access and uptake of SRH services. Young people living with HIV are not meaningfully involved in research, programmes and policy initiatives – across the sector we have failed in our commitment to ‘nothing about us without us’ which was captured in the GIPA commitment in the 1994 Paris AIDS Summit and this is particu- larly true around work with young people. Understanding effective ways to meaningfully involve young people living with HIV in research and the design and implementation of programmes is critical for effective uptake of services and research. 2. Research around HIV disclosure to identify methods of disclosure (how, when and to whom) The discussions here echoed those captured above by group two, who discussed disclosure. Again they reflected on the issue from two angles: disclosure to the young person living with HIV and disclosure by this young person. They noted the evidence encouraging early disclosure to the young person. They also expressed concern about the many risks that can be associated with disclosure by young people living with HIV, and the need to provide support to ensure people are ready to disclose when they do and are fully aware of all potential ramifications. They rec- ognised the tension between the benefits of disclosure and the potential risks. They also noted that disclosure needs to occur in multiple fora: family, friends, partners and community settings – and all are important and carry their own complexities. 3. Priority groups requiring attention As highlighted above, young people living with HIV have a variety of other identities, reflecting the intersection of marginalised identities. Ef- fective interventions need to work with youth in all their diversity. Specific groups identified were young people living with HIV who have disabilities, who are lesbian, gay, bisexual, transgender or intersex, who live in prison and who are sex workers. Each of these groups had multiple overlapping challenges alongside issues related to living with HIV. From research practice to policy – Group five A persistent concern in research is how to ensure that research gets into policy and practice (GRIPP). Good research can simply sit on shelves and in journals if there is no effective engagement with programmatic groups and policy makers. Given the complex issues surrounding being young and living with HIV, including many that policy makers may view as politically or morally contentious, ensuring research is used to build the SRHR of young people living with HIV is critical. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 201313
  • 18. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 2013 14 Three main questions related to research practices and priorities were raised for discussion: 1. How do researchers partner meaningfully? Honest consultation and feedback to the community was identified as crucial in research. Researchers need to engage with all stakeholders meaningfully in order to promote the transparency in their work. Mean- ingful consultation also enables improved understanding of both the con- text and the ‘problem under research’; indeed research questions and objectives are enhanced through such participation. Researchers need to ‘package the message’ so that it is tailored to different audiences. Fur- thermore, the group acknowledged the importance of reflecting on who sets the research agenda (funders versus researchers versus beneficiar- ies). 2. How do we go from research to policy? Two main issues drove the agenda when discussing this question: a) Difficulties related to scaling up effective interventions and ap- proaches were discussed. The need to undertake research which investigated how to scale up programmes as well as their effectiveness was emphasised. b) Engagement in research to establish ‘good practices’ in a given area is needed. The importance of documenting and investigat- ing programme and intervention failures as well as successes in order to determine what constitutes ‘good practice’ was identi- fied. 3. How do we go from legislation and policy to implementation and action? It was expressed that a researcher’s task does not necessarily end with the successful uptake of their findings or recommendations at a policy level. There is an ongoing role for researchers to play in ensuring that policies are effectively implemented. This may require researchers to oc- cupy more of an activist role or position. Furthermore, there is an ongo- ing need to engage in monitoring and evaluation; however this was not seen as purely the domain of researchers. It was recommended that re- searchers partner with civil society organisations which can monitor the roll out of interventions. This discussion fed into a broader debate about accountability and to whom researchers were accountable e.g. funders, academic peers, policy makers, and/or ‘society’. This debate revealed tensions between conducting ‘blue sky’ research and research that was socially responsive.
  • 19. Prioritising the issues Following in-depth discussions, groups wrote up their top three priorities, and in a ‘market-place style’ they reported back on the identified research priorities for the sector. Participants were each given four stickers to vote for their top four priorities. The table below captures these voting trends, with the number of votes cast for each topic area represented by the red dots. * Following the voting participants noted that “What needs to be in place for successful disclosure by young people living with HIV” and “Research around HIV disclosure to identify methods of disclosure (how, when and to whom)” were very similar points. Votes for both these areas should be added together to represent the extent to which this topic was prioritised by stakeholder participants. + Similarly following voting participants noted that “How to include difficult to reach populations of young people with SRHR services” and “Priority groups requiring attention” were very similar points. Votes for both these areas should be added together to represent the extent to which this topic was prioritised by stakeholder participants. 1 Reproductive health choices, safer conception and contraceptive options Effective, comprehensive sexuality education Information, access and availability of contraceptives Translating increased information and knowledge into behaviour change 2 Disclosure and negotiating relationships, including GBV What needs to be in place for successful disclosure to young people living with HIV? What needs to be in place for successful disclosure by young people living with HIV? Health workers perceptions and counselling skills to support decision making around disclosure to, and by, young people living with HIV 3 Public health sector, service delivery and treatment “How to make SRHR services sexy for young people?” How to include difficult to reach populations of young people with SRHR services? Developing a better understanding of treatment fatigue or ART adherence challenges among YLHIV 4 Interventions to support young people living with HIV Meaningful involvement of YPLHIV in design, delivery of programmes and research Research around HIV disclosure to identify methods of disclosure (how, when and to whom) Priority groups requiring attention 5 From research practice to policy How do we partner properly? How do we go from research to policy? How do we go from legislation and policy to implementation and action? 16 6 4 12 4* 7 10 7+ 8 10+ 0* 4 4 2 11 Meeting Report: SRHR and Young People Living with HIV, HEARD, October 201315
  • 20. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 2013 16 concluding thoughts The meeting concluded with an open discussion around any issues that may not have been raised or any key points that participants felt needed to be particularly emphasised. In general participants expressed appreciation for the space provid- ed to discuss these critical issues; and they reaffirmed the five areas, as reported upon above, as critical areas for further work. In addition, a number of critical issues that emerged throughout the day were reinforced during this final session; these were noted as pertinent issues which needed to be considered no matter what work one undertook on this topic. These were: • Varying age and context: Recognising that young people’s experiences vary greatly depending on their particular age and context. • GBV and intimate partner violence (IPV): Fear of, or actual experience of, GBV and IPV severely limit young women’s ability to negotiate their own sexuality and realise their SRHR. In addition, evidence shows that testing HIV positive places women and girls at further risk of violence. The meeting stressed the importance of considering this reality in further work. • HIV acquisition: How one acquired HIV (vertical or horizontally), is often raised as an issue for consideration, however, little research has been under- taken on whether there are specific issues linked to how one acquired HIV and whether this leads to particular SRHR and needs. • Young people outside ‘the systems’: The meeting recognised that much research and programme work uses schools and clinics as points of entry. However, young people living with HIV who are in these spaces are not nec- essarily the most marginalised or infectious. Young people living with HIV out of school and/or who are not accessing clinics are particularly vulnerable to poor health outcomes, and we should bear this in mind when developing research projects and interventions. • Parent-child relationships: An increasing body of research and programme work is stressing the importance of improving parent-child relationships as a way to improve young people’s negotiation skills in all relationships, self-con- fidence etc and to provide support for young people living with HIV. • Young people living with HIV also have sexual desires, rights and choices: Any work around young people living with HIV and SRHR needs to recognise and respect their sexual desires, rights and choices, and need to find ways to enable and support them. • Marginalised populations: It was noted throughout the meeting that young people living with HIV are a marginalised population. However, participants also stressed that within this group there were additional marginalised pop- ulations such as: lesbian, bisexual, gay, transsexual and intersex people; migrants and disabled youth.
  • 21. • Psychosocial experiences of young people living with HIV: The meeting stressed the importance of addressing these needs, especially mental health issues. • Masculinities: Hegemonic notions of masculinities place both women and men at heightened risk of HIV acquisition and GBV (whether as perpetrators or survivors). An enhanced understanding of masculinities is needed in order to adequately address the role of gendered norms in this work. • Implementation challenges with failing public health systems and re- ducing funding: The meeting was cognisant of these realities – funds are reducing at the same time as the public health systems regionally are in cri- sis. These realities need to be considered in all research and interventions. • Building political commitment: The importance of building this commit- ment was stressed. Good polices fail in implementation without political com- mitment. Leadership across Africa needs to be encouraged to support the SRHR of young people living with HIV. Finally, as HEARD, we would like to thank everyone who joined us at the meeting, those who made critical opening presentations to inform the day’s discussions, and everyone who assisted in the planning which ensured the right people were at the meeting and that the discussions were relevant and addressed crucial gaps. We look forward to ongoing work in this area and invite everyone inter- ested to contact us, and each other, to ensure we maintain an active community of interested researchers and practitioners. We found the process, experience and inputs invaluable, and are indebted to all our colleagues who so generously shared their knowledge and time. We hope that we will continue to work together on this work! Moving forward, HEARD will establish a Project Advisory Committee to ensure ongoing input and direction from all sectors into our work in the area of young people living with HIV and their SRHR. Following the consultative meeting, an internal meeting took place to reflect on the issues and priority areas arising that will inform the development of a three year project in this area. For further information please contact: Andrew Gibbs on gibbs@ukzn.ac.za Meeting Report: SRHR and Young People Living with HIV, HEARD, October 201317
  • 22. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 2013 18 APPENDICES
  • 23. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 201319 Plenary presentations Psychosocial support needs of young people living with HIV: Prof Jane Rarieya and Ms. Santhana Gengiah
  • 24. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 2013 20 Negotiation of relationships, partner disclosure, GBV and sexual identity among young people living with HIV: Ms. Nokhwezi Hoboyi
  • 25. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 201321 Reproductive health needs of young people with HIV: Prof Jenni Smit
  • 26. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 2013 22
  • 27. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 201323
  • 28. Meeting Report: SRHR and Young People Living with HIV, HEARD, October 2013 24 NAME SURNAME ORGANISATION DESIGNATION CONTACT EMAIL Toyin Aderemi HEARD Post Doc Researcher aderemi@ukzn.ac.za Tshego Bessenaar IBIS Senior Manager Projects tbessenaar@ibisreproductivehealth.org Gerard Boyce HEARD Researcher gdboyce@yahoo.com Tappie Cairns Don McKenzie ART Medical Officer tappie@3i.co.za Petronella Chirawu HEARD Researcher chirawu@ukzn.ac.za Tamaryn Crankshaw HEARD Researcher crankshaw@ukzn.ac.za Sarah Dlamini Caprisa Clinician dlaminis10@ukzn.ac.za Rouzeh Eghtessadi SAFAIDS Deputy Director rouzeh@gmail.com Santhana Gengiah HSRC Project Manager sgengiah@hsrc.ac.za Andy Gibbs HEARD Researcher gibbs@ukzn.ac.za Azola Goqwana Positive Women’s’ Network Project Manager goqwana@gmail.com Kay Govender HEARD Research Director govenderk2@ukzn.ac.za Jill Hanass-Hancock HEARD Snr Researcher hanasshj@ukzn.ac.za Nokhwezi Hoboyi FEW Project Manager nokhwezi@few.org.za Rebecca Hodes UCT Inst for Humanities Researcher rebecca.hodes@googlemail.com Juliet Houghton CHIVA South Africa Country Director juliet.houghton@chiva-africa.org Ernest Khalema HSRC Snr Research Specialist ekhalema@hsrc.ac.za Paska Kinuthia UNAIDS Regional Youth Mobilisation Advisor kinuthiap@unaids.org Lisa Langhaug REPSSI Head Research lisa.langhaug@repssi.org Nomxolisi Malope Lovelife Senior Manager Strategic Projects nomxolisi.malope@lovelife.org.za Marcus McGilvray The Africaid Trust CEO marcus@africaid.org.uk Asha Mohamud UNFPA Youth HIV Advisor mohamud@unfpa.org Sophia Mukasa Monico UNAIDS RST UNAIDS RST Gender Adviser mukasamonicos@unaids.org Laura Pascoe Sonke Gender Justice SRHR Prog Specialist laura@genderjustice.co.za Leandri Pretorius HEARD Intern pretoriusl@ukzn.ac.za Jane Rarieya HSRC Researcher jrarieya@hsrc.co.za Candice Reardon HEARD Researcher reardonc@ukzn.ac.za Malebo Sesane SAT Regional Officer Womens’ Health setsane@satregional.org Agnes Shabalala Soul City Research Manager agnes@soulcity.org.za Dikeledi Sibanda FEW Katlehong Project project1@few.org.za Phindile Sithole-Spong RBHIV Founder CEO sithole-spong@rbhiv.co.za Jenni Smit MatCH Division Head Research jsmit@match.org.za Samantha Willan HEARD Programme Manager samantha.willan@gmail.com Eka Williams Ford Foundation Programme Officer e.williams@fordfoundation.org Nicola Willis Africaid Director nicola@africaid.co.uk Christon Zimbizi GYCA Regional Focal Point christon@gyca.org List of stakeholder meeting participants

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