Caregivers Action Network Research: Community Caregivers: the backbone of

accessible care and support

Rachel Albone HelpAge International and

the Caregivers Action Network

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

care2. changing context of caregiving in the ART era• Research commissioned by CAN, funded by Cordaid and UNAIDS

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

Countries:• Country selection criteria:1. Presence of generalised HIV epidemic2. Presence of established care and support programmes at community

level3. Government commitment to revitalisation of PHC

• Four country comparative study in:1. Ethiopia2. Malawi3. South Africa4. Zambia

CAN research: Community Caregivers: the backbone of accessible care and support

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

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

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

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

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

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

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