“To support means that you give 100% love to that person. It is showing love to someone in need, if you have nothing to give, you are there for that person, you council and support people that feel rejected and are lonely.”
-People’s Process on Housing and Poverty, Zambia

On the 9th and 10th of November, the UK Consortium on AIDS and International Development is hosting an international conference in London, UK, focusing on “HIV Care and Support: A Roadmap to Universal Access by 2015.” The goal of the conference is to shine highlight the critical role that caregivers play in achieving Universal Access of services and treatment for people living with HIV and AIDS, and to come away with a roadmap that principal stakeholders can use to lead synergistic and comprehensive actions in their care and support work while recognizing the vital work communities have undertaken to meet this goal. Conference participants will include caregivers, NGOs, representatives of networks of PLWHA, national governments and representatives from agencies including the UK Department for International Development (DFID) the United States Agency for International Development (USAID), World Health Organization, the Joint United Nations Programme on HIV/AIDS (UNAIDS), the Global Fund to Fight AIDS, TB and Malaria, and the US President’s Emergency Plan for AIDS Relief (PEPFAR) to name a few.
In preparation for the conference the Huairou Commission asked organizations working directly with grassroots home-based caregivers in Cameroon, Ethiopia, Uganda, Kenya, Malawi, Zimbabwe, Zambia and South Africa to lead focus groups in order to guarantee that home-based caregivers voices, perspectives and priorities are at the forefront of creating effective and truly participatory policies. The conference will be a test of the ability of communities, multi-laterals, bilateral donors, national governments and NGOs to ally and react in order to address local issues, in particular, appraising and embracing the contributions made by grassroots women and girls.

Home-based care providers from West, East and Southern Africa participated in focus group discussions that were conducted between the 11th – 22nd of October, a testament to their organizing skills and ability to rapidly organize and document their findings. The results of the focus groups will be presented at the conference by a delegation of Huairou Commission members: Shorai Chitongo (grassroots caregiver/Ray of Hope/GROOTS Zimbabwe), Osenaut Jimoh (Grassroots caregiver/IWCC Nigeria), Angela Make (Regional Coordinator/Hospice and Palliative Care Association of South Africa), Frances Odong (Program Coordinator/UCOBAC); Violet Shivutse (grassroots caregiver/GROOTS Kenya/lead contributor on the Conference’s Technical Advisory group). Regrettably, and despite their standing as accomplished grassroots leaders of organizations who have travelled world -wide, our representatives from M, SA, and Z were denied visas without explanation by UK embassies in their country, disenfranchising them from representing their groups’ experiences and priorities — and significantly marginalizing the grassroots perspective–in this important consultation.

The focus group outcomes speak to caregivers central role in ensuring that communities severely paralyzed by the HIV/AIDS pandemic continue to be assisted with basic needs, psychosocial support and access to crucial health and healing information and services. 314 people participated in these discussions and while it was evident that care and support continues to be viewed as “women’s work”, men are slowly joining the movement. Caregivers were described as providing physical assistance to their clients by washing, fetching water, and preparing food and spiritual comfort through fellowship. Caregivers provide skills building combined with financial assistance through merry-go round savings and loans to encourage independence. Caregivers were viewed as positive influences and resources in the community as they supply a rich knowledge bank of tools to promote nutritious living-such as kitchen gardens, where to locate life saving ARVs, how to access organizations providing specific services, and significantly caregivers work to de-stigmatize HIV/AIDS and advocate for early testing to safeguard a sustained, healthy life. While the international arena is finally listening to these caregivers voices, there remain significant challenges ahead. The delegation of caregivers attending this conference have outlined nuanced recommendations for more cooperative partnerships moving forward: active involvement of caregivers and targeted beneficiaries in program planning and implementation, ensuring WHO and PEPFAR are carrying out M&E in coordination with caregivers, putting in place mechanisms for sustainability, ensuring that any and all programs being considered should compliment and strengthen not compete with on-going interventions, programming must be multifaceted taking into account food security, gender based violence, women’s access and ownership to land and property, and the recognition that caregivers are the very heart of care and support delivery and should therefore be acknowledge as part of the formal workforce and compensated accordingly.

In addition to this grassroots consultation, the Caregivers Action Network (which is facilitated by Huairou Commission, VSO International, HelpAge and Cordaid) convened a pre-meeting of caregivers and NGOs working on care and support in communities on November 8th. The purpose of the pre-meeting was to create a unified agenda to bring into the high level conference.

For more information, contact shannon.hayes@huairou.org