Community Engagement Working Group Angelina Namiba , Positively UK 31 October 2012

1. The Importance of Community Engagement in the Global Plan Towards the Elimination of New Infections and Keeping their Mothers Alive Community Engagement Working Group Angelina Namiba, Positively UK 31 October 2012

2. Overview • Who is the “Community”? • What is Community Engagement? • Why is Community Engagement Important? • Examples of Successful Community Engagement Initiatives around Prevention of Vertical Transmission • How can communities be supported? • Questions

3. Who is the “Community”? 1 Communities are groups of people linked by common ties (e.g. cultural identity, geographic place). Within the HIV response these communities include: • networks of people living with HIV, • community leaders, service users, • faith-based organizations, • advocacy groups • men, women, boys and girls • actual communities – towns, villages, groups of people living together

4. What is “Community Engagement”? 2 Community engagement is a process by which the community is engagedto: • work collaboratively with national and local health authorities, facility and community based medical service providers, legislators, advocacy groups, donors and others engaged in efforts to develop, implement and evaluate Global Plan related care; • empower women and their communities to access health care and hold those who provide it accountable.

5. Why is Community Engagement IMPORTANT? 3 Community Engagement is important because it: • Increases demand for services • Improves client retention • Improves uptake of and adherence to interventions that will achieve Global Plan goals and objectives. • Addresses HRH/HSS issues by engaging a massive potential workforce by enlisting communities in the provision of care; • Builds strong linkages between health facilities and communities • Brings men and families into comprehensive PVT care and ensure that they also get the services they need.

6. How Can our Communities Engage in this Work to Achieve Rapid Scale-up? 4 Communities can: • Improve the supply and quality of services • Increase the uptake of services, including ARV adherence and facility delivery and follow-up • Create an enabling environment

7. Improve supply & quality of services Communities can improve the supply and quality of services by: • Serving as extension workers and expanding and supporting front-line health care workers e.g. community based distribution of family planning, • Creating links between community- and faith-based organizations and facility-based services, • Monitoring and holding governments accountable to provide services that suit the needs of women, men and children. • Having peer educators and mentor mothers in health facilities provide education and support where there are too few doctors and nurses (HSS/HRH/Task shifting and sharing) • Having community workers reach into communities • Holding health facilities as well as governments accountable.

8. Mothers2Mothers Engaging women living with HIV as mentor mothers • 714 sites in nine countries • Mothers living with HIV are recruited, salaried, trained, supervised, and engage in career development • From Pregnancy to Baby and Beyond Project , London • Results: • Increased ARV uptake: In Kenya, rates of ARV uptake among women who interacted with mentor mothers at least 4 times was 97% compared with 62% among women with no interaction • Increased postpartum CD4 testing • Increased treatment initiation • Increased HIV disclosure • Increased infant testing From Pregnancy to Baby and Beyond Project , London

9. Community Engagement in Monitoring Services In Uganda, 50 communities were informed of their rights and issued with “report cards” • Communities encouraged to identify solutions, develop remedial action plans, and implement and monitor them • Meetings were held with community members and health facility staff to create a jointly-owned action plan • Approximately 55,000 households were reached • Results (in 1 year): • Increase in antenatal visits, facility deliveries and family planning visits • Increase in infant weight for age • 33% reduction in deaths among children under 5

10. Increase uptake of services Communities can increase the uptake of services (including ARV adherence and facility delivery and follow-up) by: • Participating in campaigns for behavior change and reduction of discrimination, • Providing peer support, • Maximizing the use of community assets, resources, and • Creating demand through treatment literacy and awareness of availability of services • Supporting community led health promotion campaigns to create demand and increase uptake

11. Involving Men in Zambia The Catholic Medical Mission Board developed a communication strategy to promote male involvement in reducing pediatric HIV • Engaged traditional leaders as allies and champions of prevention of vertical transmission (PVT) • Identified male attitudes/practices that negatively impact women’s access to services and developed a community education strategy • Results • Within 5 months, 65% of 2,261 men in the program tested for HIV (11% baseline) • 4x increase in same day counseling and testing of pregnant couples • Antenatal clinic clients’ acceptance of HIV counseling and testing rose of 95% (60% baseline) • Acceptance rates for ARV prophylaxis or treatment among women who tested positive rose to 70% (40% baseline)

12. Peer Extension Workers in Uganda In the Nyimbwa Multipurpose Self-Help Group, people living with HIV are selected as Network Support Agents (NSA) • Trained in ARV adherence, nutrition, pregnancy and HIV, disclosure, and counseling • Spend 2 days/week in a health clinic and 3 days in the community to mobilize people to use clinic-based services and support services • Results • Decreasing stigma and discrimination in the community and in hospitals • In one of the 40 districts where NSA operated, the number of people accessing PVT services increased from 1,294 to 15,892

13. Create an Enabling Environment Communities can create an enabling environment by: • Advocating for scale-up and the right to sexual and reproductive health, • Promoting community engagement in policies and strategies. • Addressing HIV related stigma and discrimination and gender inequalities • Participating in technical working groups

14. Community Mobilization in South Africa Treatment Action Campaign (TAC) pressured the Government to roll out ARVs for PVT • Advocacy included human rights education, treatment literacy, public demonstrations and litigation • In-service trainings of health clinic staff and clients • Trace contracts and measure adherence • Media and door-to-door campaigns

15. How can communities be supported? A sustained process that enables community members to participate in program design, implementation and monitoring This in turn requires: • Financial and technical support and investment to build skills and to coordinate and implement programs • Meaningful involvement of networks of people living with HIV, the people who are most committed to having healthy, HIV-free babies • Training and on-going supervision

16. Questions? We are ready and able to help. Email: Georgina Caswell (gcaswell@gnpplus.net) Amy Medley (igm8@cdc.gov)