Organizing and advocating for recognition and resources for Home-Based Caregivers

Advancing recognition and resources for caregivers is the central work of the AIDS Campaign. Care and Support are recognized as one of the three pillars of Universal Access- goals agreed to by UN Member states and agencies to address HIV worldwide. Yet it is regularly left out of policy dialogues or resource discussions. The AIDS Campaign works to ensure that the work of caregivers and the issues of care and support receive the attention they deserve.

Home-based care Alliance

The Home Based Care Alliance is a movement of home-based caregivers organizing for recognition and self-representation, at the local, national and international levels, for the essential services, care and resources they provide their communities. The Alliance, organized by HC Member Network GROOTS International, forms the central grassroots constituency of the AIDS Campaign and our advocacy priorities emerge from its members.

The Alliance builds capacity of women leaders by sharing experiences, strategies and techniques. They then take this invaluable information to policy-makers, providing them with relevant current data and community priorities related to HIV and AIDS.

The Alliance has also claimed leadership spaces, especially on the constituency level AIDS and other development committees that governments mandate to make decisions on their community priorities. The Alliance is advocating for transparency and accountability in HIV/AIDS programming so they can monitor and evaluate resources and services for the AIDS response in their communities.

For more information on the HBCA and their work, please see their website.

Compensations for Contributions

Between August 2008 and March 2010, the AIDS Campaign coordinated an action research initiative across Africa formally documenting the work being done by home based caregiverswith financial support from the UNDP-Japan Partnership Fund . Home-based caregivers in 13 countries across Africa were consulted through 1366 structured interviews in 6 countries, approximately 40 focus groups, a 60-person Grassroots Women's International Academy, local dialogues, national advocacy campaigns, and participation in global decision-making spaces including the International AIDS Conference and UN Commission on the Status of Women.

This action research captured the realities of tens of thousands of grassroots women who struggle every day to provide care and support to people living with HIV and AIDS, orphans, the elderly and chronically ill.

The AIDS Campaign was aware of the leadership and holistic developmental initiatives being led by home-based caregivers from our ongoing work with our members.. Very few global institutions working on HIV and AIDS at the international level were aware of, or acknowledged this work in any meaningful way.

This action research initiative was meant to bridge the gaps between what was really happening in communities and what was being addressed at the global level. The UNDP-Japan Partnership Fund supported the AIDS Campaign to conduct rigorous research on the wide range of contributions being made by home-based caregivers. This included the costs they were paying - in labor hours and out of pocket expenditures - to make those contributions. 

Download the Final Report here. 

Caregivers Action Network

The Huairou Commission joined with Cordaid, HelpAge International and VSO International to form the Caregivers Action Network. CAN organizes globally, regionally and nationally towards an AIDS response that fully recognizes, integrates and supports community-based care and support including home-based care as a key and fully resourced part of the health system and the national response to HIV.

For more information on the Caregivers Action Network, please see our AIDS Partnership page or the Caregivers Action Network website www.caregiversactionnetwork.org.

Showcasing grassroots women in global and regional events on AIDS
For the past 10 years, the AIDS Campaign has been organizing delegations of grassroots women and working with partners to open space for them to participate in major decision-making spaces. This includes the International Conference on AIDS and STIs in Africa (ICASA) and the International AIDS Conference.

We also regularly organize Grassroots Academies , often in conjunction with other conferences, to provide a space for grassroots practitioners to share practices and forge collective advocacy and organizing plans.