1. Caregivers Action Network Research: Community Caregivers: the backbone of accessible care and support Rachel Albone HelpAge International and the Caregivers Action Network

2. CAN research: Community Caregivers: the backbone of accessible care and support Background: Need for evidence on care and support and role of caregivers Discussions at IAC 2010 – evidence gaps and advocacy needs Research group formed to frame and guide research Research priorities identified by research group: 1.linkages with the public health system and community health care 2.changing context of caregiving in the ART era Research commissioned by CAN, funded by Cordaid and UNAIDS

3. Research objectives: 1.Explore the adaptations and changes in caregiving at the community level since the rapid-scale up of ART, with a particular focus on the tasks of caregivers and the needs of their clients 2.Assess how and to what extent caregiving by informal caregivers at community level has been integrated in the health system and is being recognised as part of the primary health care structures and policies 3.Investigate the contributions of, potential role of and benefits for caregivers in the expansion of HIV prevention, treatment and primary health care programmes 4.Assess the potential means for formal and informal community health worker programmes to complement each other in the context of decentralisation of HIV treatment programmes, taking into account current initiatives and arrangements CAN research: Community Caregivers: the backbone of accessible care and support

4. Countries: Country selection criteria: 1.Presence of generalised HIV epidemic 2.Presence of established care and support programmes at community level 3.Government commitment to revitalisation of PHC Four country comparative study in: 1.Ethiopia 2.Malawi 3.South Africa 4.Zambia CAN research: Community Caregivers: the backbone of accessible care and support

5. Structures: CAN, Cordaid and UNAIDS – commissioned, funded and managed research Research group – civil society, UN Lead researchers: ETC Crystal and Athena Institute – Amsterdam University Local researchers – in each country Research advisory boards – in each country – CHBC organisations, Governments, caregivers CAN research: Community Caregivers: the backbone of accessible care and support

6. Methodology: Literature review on CHBC in 4 countries KIIs – community care and ART policy – national level KIIs – care and support organisations – national level Case studies – with 3 large community care and support programmes in each country Analysis and country comparison Draft report and internal review of preliminary findings Validation – questionnaires and KIIs Country and synthesis reports CAN research: Community Caregivers: the backbone of accessible care and support

7. Findings: 1)Diversification of roles of caregivers due to increased access to ART Change from nursing care for bedridden to a broader range of care and support services PLHIV highlighted needs: adequate nutritious food, income generating opportunities, psychosocial support Care and support needs re ART: accessing ART, treatment for OIs, side effects and disabilities, adherence support Psychosocial support needs: counselling, incl. pre-ART to build confidence, understand regimes etc., addressing stigma Holistic health needs: caregivers role in addressing multiple health conditions – e.g. NCDs Caregivers role in prevention, treatment, health seeking behaviour and testing alongside care and support CAN research: Community Caregivers: the backbone of accessible care and support

8. Findings: 2) Move towards making health care more available at the community level, including through CHWs Efforts to revitalise PHC and social services to support people at the community level Trend towards creation of professional CHWs to work between caregivers and the health system Care and support services provided by NGOs and Government structures Differing stages of decentralisation Emerging policy changes with increased ART CAN research: Community Caregivers: the backbone of accessible care and support

9. Findings: 3) Little evidence of expansion of PHC through existing CHBC programmes Complex existing structures of providers at community level – multiple terms for caregivers and the care provided Establishment of cadres of professional CHWs Some inclusion of existing CHBCs Potential for tension between CHBCs and CHWs Extent of integration of CHBC in health systems? Declining funding for CHBC CAN research: Community Caregivers: the backbone of accessible care and support

10. Findings: 4) Community caregivers and CHWs vital to the uptake of services and retention of clients on ART Roles of caregivers and CHWs in referrals to ART, counselling, treatment literacy, tracking client numbers and progress etc. Transition to PHC and increased services at community level requires investment in CHBC and recognition of role of CHBC 5) Decentralisation of ART to community level not happening in a systematic way Differences between countries Challenges with regulations: needing professional health staff CAN research: Community Caregivers: the backbone of accessible care and support

11. Next steps: Synthesis report and four country reports available on CAN website Policy brief being developed Dissemination of reports – online focus UNAIDS online launch of research in October Seeking opportunities to share/present research at conferences and events CAN research: Community Caregivers: the backbone of accessible care and support