Community Engagement Working Group Lucy Ghati, NEPHAK/GSG Representative 3 September 2012

1. Regional Workshop for Costing eMTCT National Strategies: Understanding Community Engagement in eMTCT Community Engagement Working Group Lucy Ghati, NEPHAK/GSG Representative 3 September 2012

2. Overview • Who We Are • Who is the “Community”? • What is Community Engagement • Why is Community Engagement Important • How to Engage Communities • How to Include Community Engagement in National eMTCT Plans • Who Can Provide Technical Support? • Questions

3. Who We Are: Community Engagement Working Group (CEWG) 1 • Recently formed IATT Working Group • Co-Chaired by GNP+ and CDC To provide Global Plan countries with (1) practical tools and (2) technical assistancefor developing, implementing, managing, and monitoring community engagement programs addressing the Global Plan goals and objectives. Workgroup Objective

4. Who is the “Community”? 2 Communities are groups of people linked by common ties. 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

5. What is “Community Engagement”? 3 Community engagement is a process by which the community is engaged to: • 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.

6. Why is Community Engagement IMPORTANT? 4 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 eMTCT care and ensures that they also get the services they need, • Improves equitable outcomes and reaches underserved populations.

7. How Can our Communities Engage in this Work to Achieve Rapid Scale-up? 5 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

8. Improve supply & quality of services Communities can improve the supply and quality of services by: • Supporting front-line health care workers e.g. community based distribution of family planning • Serving as extension workers • 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) • Creating links between community- and faith-based organizations and facility-based services • Community workers reach into communities to link individuals into services and trace those lost to follow-up • Monitoring governments and health facilities to hold them accountable for providing services that suit the needs of women, men and children

9. 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 and resources • Creating demand through treatment literacy and awareness of availability of services • Supporting community led health promotion campaigns to create demand and increase uptake

10. 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 • Reducing stigma and discrimination

11. How To Include Community Engagement in National eMTCT Plans? 6 Include & budget for the following: • Establish and strengthen community-based support services (including FBOs and PLHIV ) • Train community workers (e.g. people living with HIV, mentor mothers, community health workers, peer educators, etc.) to deliver comprehensive prevention of vertical transmission services • Community-based support for linkages to and retention in facility-based services • Support and provide community education and awareness • Strengthen and encourage community-led program accountability

12. Positive aspects of Community Engagement in Plans • Gender-sensitive approaches for engaging both men and women e.g. health development army and women’s coalitions in Ethiopia • Strategies for reaching underserved populations e.g. Ghana and Zambia financial reimbursements for poor women accessing PMTCT services • Peer support groups e.g. Kenya and Mozambique • Community distributors of family planning services e.g. Malawi and Mozambique • Health management committees with community participation e.g. Kenya • Building capacity of community support groups including PLHIV to support treatment adherence including through home based care e.g. Nigeria

13. Areas for strengthening community engagement • Budgets for CE do not reflect narrative e.g. lack of budget for capacity building of CBOs to provide outreach to households affected by HIV • Limited focus on local accountability mechanisms to support planning, implementation and monitoring of EMTCT response • Limited consideration of community based structures outside of the health sector (faith based organisations, social welfare structures etc) • Lack of clarity on role of PLHIV in planning and monitoring responses • Limited focus on activities to reduce HIV related stigma and discrimination

14. 7 Who can provide Technical Support? • IATT Community Engagement Work Group • Brochures • “Supporting and Strengthening community engagement towards achieving zero new HIV infections among children and keeping their mothers alive” – Introduction to Community Engagement • “Communities taking action for women, mothers and children” – Suggestion of Promising Practices • Checklist of Minimum Community Engagement Activities • GSG Civil Society Representatives • UNAIDS Community Mobilization Team • Community groups working locally, in particular networks of women living with HIV and service providers working directly with mothers living with HIV

15. Most Importantly… • We need to allocate a budget that will meet the full costs of community engagement. • NACC/NACA should work with development partners to roll out a national plan that will implement revised WHO guidelines and reduce stigma in health care facilities • NACC/NACA, in collaboration with community groups, should develop strategies to keep women engaged in follow-up treatment and care services • We need to wholeheartedly involve women groups in mother and child health care • Women’s groups must be represented in the national eMTCT platforms and relevant advocacy discussions

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