Case Study Ethiopia: Standing up for the sexual and reproductive health needs of young people living with HIV
p2 Ethiopia: Standing up for the SRH needs of young people living with HIV About the International HIV/AIDS Alliance We are an innovative alliance of nationally based, independent, civil society organisations united by our vision of a world without AIDS. We are committed to joint action, working with communities through local, national and global action on HIV, health and human rights. Our actions are guided by our values: the lives of all human beings are of equal value, and everyone has the right to access the HIV information and services they need for a healthy life. About Link Up Link Up, an ambitious five-country project that ran from 2013-2016, improved the sexual and reproductive health and rights (SRHR) of over 8000,000 young people most affected by HIV in Bangladesh, Burundi, Ethiopia, Myanmar and Uganda. Launched in 2013 by a consortium of partners led by the International HIV/AIDS Alliance, Link Up strengthened the integration of HIV and SRHR programmes and service delivery. It focused specifically on young men who have sex with men, sex workers, people who use drugs, transgender people, and young women and men living with HIV. International HIV/AIDS Alliance 91-101 Davigdor Road Hove, East Sussex BN3 1RE United Kingdom Tel: +44 1273 718 900 Fax: +44 1273 718 901 Email: mail@aidsalliance.org Registered charity number 1038860 www.aidsalliance.org For more information visit www.link-up.org Acknowledgements Author: Julie Mellin (Global Youth Coalition on HIV/AIDS) Contributors: Simachew Animut (NNPWE), Georgina Caswell (International HIV/AIDS Alliance), Tinos Kebede (NNPWE), Ayele Mideksa (NNPWE), Michaela Rahimi (Global Youth Coalition on HIV/AIDS), Leoul Weldehanna (OSSHD), Liyu Wogayehu (NNPWE), and Senait Zenebe (NNPWE). Edited by Sarah Hyde. Reviewed by Ian Hodgson. We would like to thank the Government of the Netherlands for funding the Link Up project. International HIV/AIDS Alliance, 2016 Information contained in this publication may be freely reproduced, published or otherwise used for non-profit purposes without permission from the International HIV/AIDS Alliance. However, the International HIV/AIDS Alliance requests that it be cited as the source of the information. Designed by: Jane Shepherd/Garry Robson Unless otherwise stated, the appearance of individuals in this publication gives no indication of either sexuality or HIV status. The BEZA Anti-AIDS youth group use their combined talents for music and dance to get messages about HIV prevention across to the wider public, and in particular to their peers. 2016 International HIV/AIDS Alliance
Ethiopia: Standing up for the SRH needs of young people living with HIV p3 Executive summary Stigma and discrimination in the home, community and health service provision continue to affect people living with HIV in Ethiopia and to undermine young people s sexual and reproductive health and rights (SRHR). 1 The National Network of Positive Women Ethiopians (NNPWE) is working to enhance health service providers knowledge and attitudes so that they deliver youth-friendly and integrated sexual and reproductive health (SRH) and HIV services to young people living with and affected by HIV. 2 By strengthening the advocacy capacity of this group, NNPWE supports young people to build the evidence base for improved health service delivery and to advocate on their own behalf with health service providers. Better an egg this year than a chicken next year. Ethiopian proverb In Ethiopia, Link Up is led by the Organisation for Social Services, Health and Development (OSSHD) in partnership with NNPWE, Nikat Charitable Association, Talent Youth Association (TaYa), Marie Stopes International Ethiopia (MSIE), Family Guidance Association Ethiopia, and the Ministry of Health. In Ethiopia, Link Up s aim is to improve access to SRH services among young people living with and affected by HIV. This case study details NNPWE s work with young people to improve youth-friendly health service provision. 1. Context Although HIV prevalence in Ethiopia is fairly low at 1.2%, the epidemic is considered generalised because of the high number of people affected. The country s large population means that estimates of people living with HIV are between 600,000-970,000 people. 3 There is no reliable data on the number of young people living with HIV in Ethiopia, but we know from experiences all over the world that young people, and young women in particular, are disproportionately affected by HIV because of economic, social, and gender inequality factors. 4 Not only are young people more likely to be vulnerable, but young people are more likely to encounter barriers to realising their SRHR, such as stigma and discrimination, poor quality services or criminalisation. 5 The National Network of Positive Women Ethiopians (NNPWE), founded in 2007 to bring together associations of women living with HIV, now has 27 member associations of people living with HIV across the country. NNPWE broadly seeks to increase the contribution of people living with HIV to national and regional HIV prevention, treatment, care, and support efforts, and to build the capacity of HIV positive women to access SRH services and overcome the challenges of living with HIV. 1 Ethiopia Federal HIV/AIDS Prevention and Control Office (FHAPCO) (2014), Country progress report on the HIV response. 2 Link Up focuses on young people living with and affected by HIV, which includes young men who have sex with men, young people who sell sex, young transgender people and young people who use drugs. For the remainder of this case study, young people will refer to young people living with and affected by HIV as defined here. 3 UNAIDS (2014), HIV and AIDS estimates: Ethiopia. 4 UNAIDS (2012), Fact sheet: adolescents, young people and HIV. 5 Advocates for Youth (2011), Young people living with HIV around the world.
p4 Ethiopia: Standing up for the SRH needs of young people living with HIV As part of the process of developing a Link Up advocacy strategy in Ethiopia, 19 youth dialogues were held in 2014 in 11 sites across the country to establish the SRHR and HIV priorities and needs of young people. There were 189 participants: 141 female and 48 male. The key issues identified were: Limited awareness of integrated HIV and SRH services (less than half of participants were aware of the HIV and SRH services available to them). Lack of information on available services and inconsistent service provision between centres. Unsuitable family planning methods for people who sell sex, and nurses refusing to provide services. Discrimination if the client sells sex or is living with HIV, including cases of mandatory HIV testing. Shortage of supplies, doctors, and skilled and ethical professionals (including lack of female staff in some centres). Lack of youth-friendly services. High levels of stigma, lack of confidentiality, and unethical or unqualified staff were reported in the dialogues - a finding that echoed the results of a consultation by Link Up global policy partners Global Youth Coalition on HIV/ AIDS (GYCA) and the ATHENA Network. Community dialogues among young people in Ethiopia revealed general distrust of services and concerns over confidentiality, the quality of services and professionalism of staff at government hospitals: Everyone can see you when you enter to the centre, I don t want people saw me at VCT centre, plus, I didn t have quality conversation with the counsellors who were busy, and looked very tired,... I don t think I would go such place again. They are abusive, even the guard, the receptionist treated you badly, because you did pay nothing for the service you get. 6 2. Strategies Following the youth dialogues, NNPWE and Link Up Ethiopia partners OSSHD, Talent Youth Association, and Nikat Charitable Organisation led a stakeholder workshop with local government health workers and service providers to present the findings. Stakeholders included representatives from the ministry of health, the Federal HIV/AIDS Prevention and Control Office (FHAPCO), local youth centres and government clinics and hospitals. Representatives from the ministry of health were surprised and impressed to see young people voicing their needs directly in the workshop. They said, This [direct testimony] is the evidence we need, rather than only papers and research. Youth participants were equally impressed to hear health service providers acknowledge current 6 Link Up project (GYCA and ATHENA Network) (2013). Visions, voices and priorities: key issues of young people living with and affected by HIV in Ethiopia. Available at http://www.aidsalliance.org/resources/481-voices-visions-and-priorities.
Ethiopia: Standing up for the SRH needs of young people living with HIV p5 gaps around HIV and SRH interventions for young people, such as the lack of educational materials and youth-friendly services. In order to address the lack of youth-friendly services and inconsistent or discriminatory service provision for young people (particularly young people living with HIV), NNPWE sought to engage with health service providers. The goal was to strengthen standards in health facilities to prioritise the needs of young people. As a short-term outcome, NNPWE aimed to enhance health providers knowledge and capacity to deliver services that meet the needs of this group. In its role as a partner in developing an advocacy strategy, NNPWE organised a two-day training course in leadership, policy and advocacy skills, underpinned by the integration of SRHR and HIV. Twenty-seven young advocates attended the training course, which covered leadership, management and coaching; change theory; SRHR, including HIV; and integrating SRH and HIV services. As a first step in engaging with health service providers, these young people took part in a communications and messaging workshop, led by a communications consultant. Participants learned how to craft key messages and clearly and effectively communicate their needs to service providers and other decision-makers. They also learnt basic information about HIV and SRH, services and integration, giving them a solid knowledge base for advocacy with service providers. In small working groups of three people, participants developed the key messages they wanted to share, based on their experiences and the outcome of the youth dialogues. NNPWE consolidated the messaging into one strong statement which was printed on the back of a calendar commemorating World AIDS Day. The statement, translated from Amharic, is below: It is possible to provide updated, accessible, integrated, and comprehensive HIV and SRH services for all young people by building the capacity of health service facilities and youth centres. Voice of youth Six of the young people who had participated in the training and developed messaging visited each service provider to share the calendar and convey the message. This was a total of 42 service providers, including private clinics, government clinics, hospitals, and local health centres, all in Addis Ababa. In addition, NNPWE developed a press kit based on the youth dialogues, stakeholder workshop, and messaging training to strengthen the evidence base for improved SRH and youth-friendly services in Ethiopia. The press kit was distributed and discussed with more than 60 participants from various government departments and NGOs, including the ministry of health, the Federal HIV/AIDS Prevention and Control Office (FHAPCO), UNAIDS, and many young people and community representatives. Held in December 2015, the
p6 Ethiopia: Standing up for the SRH needs of young people living with HIV one-day meeting brought together ministries that rarely collaborate in advancing the SRHR of young people. In sharing Link Up Ethiopia s work and the results of the youth dialogues, the meeting aimed to: Advocate to Addis Ababa city administration for the inclusion of comprehensive sexuality education in their school curriculum, including information on the needs of young people. Advocate to health service providers, FHAPCO, and the ministry of health to promote zero discrimination and support young people in accessing youthfriendly and integrated SRH and HIV services. Priorities addressed in the meeting included integrated SRHR and HIV education for in-school youth; how to use the media to defend the rights of young people from marginalised groups; and promoting zero discrimination for young people living with HIV in accessing quality SRH and HIV services. 3. Results Key advocacy achievements include: Development and distribution of the press kit outlining the SRH needs of young people: NNPWE considers the development, translation to Amharic, and distribution of more than 200 copies of the press kit as its greatest achievement. Following the meeting with government and other stakeholders, many attendees expressed commitment to youth-friendly health services. As a result of this meeting, NNPWE and OSSHD were both invited by the ministry of health to participate in consultations on the second growth and transformation plan: a national development plan that is being finalised for the period up to 2020/21. Partnership with the ministry of health: The health sector transformation plan (HSTP), launched in October 2015, recognises that young people and adolescents face varied vulnerabilities to reproductive health issues. A national strategy has been formulated, with a minimum service package to scale up reproductive health services for adolescents and youth. Although this strategy does not specifically refer to sexual health or the needs of young people, ministry of health representatives who took part in Link Up meetings have verbally pledged to prioritise youth-friendly sexual and reproductive health services for this group. In addition, the ministry is forming a technical working group on adolescent health to support implementation of the HSTP and would like to invite young people from Link Up Ethiopia to participate. Partnership with the ministry of youth, sports and culture and ministry of women, children and youth affairs: Following the stakeholder consultation, the ministries of youth, sports and culture and women, children and youth affairs both expressed a commitment to support health facilities in establishing youth-friendly standards that address stigma and discrimination. They also requested assistance from Link Up
Ethiopia: Standing up for the SRH needs of young people living with HIV p7 youth advocates in designing activities. They are currently in discussion around how best youth advocates can support this process. Acknowledgement of service delivery gaps by key health service providers: As a result of NNPWE s evidence-based advocacy around the need for integrated, high-quality, youth-friendly services, all 42 local health facilities have verbally agreed to deliver improved youth-friendly services. Ethiopia leadership training participant. 2016 International HIV/AIDS Alliance 4. Unanticipated outcomes Unanticipated results include: Strengthened partnership between Link Up Ethiopia partners: NNPWE, Nikat and TaYa have worked very closely as implementing partners in the project, pooling knowledge of how to work effectively with different groups of young people and implement effective, low-cost programmes. Since all three partners work with diverse groups (young people who sell sex, young people in school, and young people out of school), together, they are able to reach a wider group of young people and consolidate meetings, as well as cement partnerships for future projects. Young people s increased confidence to advocate on their own behalf: After participating in training courses on SRHR and advocacy, organised by Link Up Ethiopia, and being supported to develop and deliver key messaging directly to government representatives and service providers, many young people gained confidence in discussing their issues with health service providers. Within the workshops, meetings, and safe
p8 Ethiopia: Standing up for the SRH needs of young people living with HIV space of the youth dialogues, participants felt they were more able to bring up difficult issues with friends and family. For example, several young people said that they felt more confident disclosing their HIV status to their families or talking about other difficult issues. One young participant shared that: Formerly I have been given due attention by my family members before I disclosed my status. After I disclosed myself to them, they ignored and stigmatised me, except my grandmother. Thanks to my grandmother, I was able to see my friends, also able to share my feelings and ideas. It is quite easy now. The youth dialogues often provided the first opportunity for participants to speak openly about their HIV status and the difficulties they had in accessing services and facing stigma and discrimination. They have since shown willingness and interest in starting a national association of young people living with HIV, supported by NNPWE and Mekdem (a national network of people living with HIV). Fostering partnership between the ministries of health and education: Meetings co-organised by NNPWE, TaYa, OSSHD, and Nikat brought together ministries that do not often collaborate, and created a space for discussion, solutions and cooperation between them. For example, in the workshop that shared NNPWE s press kit, young people living with HIV identified the issue of losing access to treatment - which is primarily only available in Addis - when they were at universities outside the city. This was the first time the health and education ministries had an opportunity to learn about this issue and collaborate. Mobile testing clinics are organised by OSSHD, Ethiopia s largest NGO working on HIV, and attract up to a thousand people over the course of five days. 2016 International HIV/AIDS Alliance
Ethiopia: Standing up for the SRH needs of young people living with HIV p9 5. Challenges and issues experienced A number of challenges arose during the project, including: Expert and consultant fees: NNPWE found that in providing communications training, consultants or communications experts asked for a fee that exceeded their budget. Other highly trained professionals (such as psychologists with expertise in psychosocial counselling) also charge a high fee for facilitating training or giving presentations. Delayed start-up and recognition of the time needed to do meaningful advocacy work: The advocacy strategy was finalised in February 2015, leaving less than a year to draft and implement the budget and work plans. Recognising that advocacy work takes time and six to eight months is a short timeline, Link Up Ethiopia requested, and was granted, a no-cost extension until June 2016. This will enable the team to hold a follow-up youth dialogue in order to assess their needs and build their capacity for sustainable advocacy work beyond the life of the project. 6. Lessons learnt Key learning to inform future activities encompasses: Partnering with government stakeholders: Through each step of the process of developing an advocacy strategy, NNPWE and other Link Up partners kept government partners informed of their progress and shared draft messaging for feedback before it was published. In addition, Link Up partners found that a strong relationship with government staff is necessary in order to ensure that they attend and engage in training and consultative meetings. Commitment is fostered over time and through strong relationships. Reaching the most marginalised young people: NNPWE staff acknowledge that their network is primarily composed of Addis-based groups of people living with HIV, and extra effort needs to be made to reach young people who are affected by HIV (such as young people who sell sex) and young people based outside Addis, in more remote and rural areas. Accounting for differences in capacity among training participants: In facilitating training, NNPWE staff found that participants age, level of literacy, and confidence in speaking in groups had a substantial impact on group dynamics and whether training was successful in the long-term. In future, basic training around SRHR and advocacy could be expanded to include assertiveness skills. A mentoring programme similar to that piloted by Link Up in Myanmar and Uganda might also be helpful in boosting confidence around this work.
p10 Ethiopia: Standing up for the SRH needs of young people living with HIV 7. Plans for the future and sustainability beyond Link Up Local USAID and UNAIDS offices, as well as several other stakeholders, have expressed interest in the project and in learning more about the innovative aspect of working directly with young people on SRHR and HIV integration. However, NNPWE will need to secure funding in order to continue Link Up work. A mentoring training programme that supports young people to mentor and train new advocates has been piloted through Link Up in Myanmar and Uganda - this might be a useful initiative for Ethiopian youth participants as well. With more funding, NNPWE would like to support the young people living with HIV who have been involved in the project in establishing their own national network of young people living with HIV. A second youth dialogue - to develop an advocacy evidence base for this work - will take place in the final months of the project, before June 2016. Health service providers will also be trained in the delivery of youth-friendly services to young people - who will co-facilitate the training course. 8. Contact details For more information, please contact: National Network of Positive Women Ethiopians (NNPWE), Yeka Subcity,Woreda 8, P.O. Box 1270, Code 1250, Addis Ababa, Ethiopia. Telephone: +251 116 672 641/2642 Fax +251 116 672 640 Email: napwomeneth@ethionet.et The Organisation for Social Services, Health and Development (OSSHD), Bole Subcity, House No. 271, Kebele 04/06/07, PO Box 2385, Addis Ababa, Ethiopia. Telephone: +251 116622710 Email: osshd@ethionet.et
Ethiopia: Standing up for the SRH needs of young people living with HIV p11 The BEZA Anti-AIDS youth group get messages about HIV prevention across to the wider public, and in particular to their peers. 2016 International HIV/AIDS Alliance
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