Home-based caregivers organize for recognition and resources

By: Shannon Hayes
October, 02, 2009

A report from the Grassroots Women's International Academy, Johannesburg, South Africa

	"We are here as women, grassroots women involved in caregiving in our communities in relation to HIV/AIDS. We are here because we care. We care that HIV pandemic has claimed the lives of many people, and we care about prolonging lives of people. HIV is not only the matter of people who are sick, it is the matter of the whole community."
	Violet Shivutse

On 24th to the 28th August 2009, over 60 home based caregivers and NGO partners from 21 organizations in 13 African countries organized in self-help groups, alliances and support groups, together with grassroots women living positively with HIV and AIDS and Non-Governmental Organizations (NGOs) leaders congregated in Johannesburg, South Africa for a Grassroots Academy with the goal of collectively sharing experiences successes, challenges, best practices, and organizing strategies for their caregiving work. The Academy took place in the context of the action research initiative 'Compensation for Contributions' which aimed at documenting evidence of caregivers' significant contribution to the health and development agenda of their communities as well as best practices in effectively organizing themselves at national and sub-national levels. The Academy is sponsored by UNDP Japan Partnership Fund, Cordaid, American Jewish World Service and the Stephen Lewis Foundation.

The research initiative and Academy comes at time when many governments are involved in health systems strengthening initiatives, are exploring task shifting as a way to alleviate overburdened health systems, and are increasingly looking to volunteer caregivers to play the roles of nurses, social workers and child care workers with minimal or no compensation. When governments institute stipends for chronically ill people, including those living with AIDS, or for orphans, it very often falls to caregivers to link the beneficiaries to those funds, ensuring they have documents and understand their entitlements. As caregivers shift into these roles, effectively implementing government programs, their workload increases while they continue to go unrecognized for their important leadership, community development expertise, and as they remain marginalized from program and budget planning and decision-making. The Huairou Commission and GROOTS International held this Academy with the particular aim to encourage and support caregivers to envision an organizing plan by which they could identify and link with other caregivers, create structures for self-representation and leadership development, and to advocate for meaningful recognition and resources.

Up through day 3, the Academy has served as a platform for sharing experiences, challenges and strategies, for building solidarity among caregivers from the 13 countries. Participants have identified, named and claimed their contributions, strengths and successes. Solidarity has been built among caregivers from the 13 countries, and a collective understanding and appreciation of the challenges and contexts of the various group has been built. The Academy has been a time to build an understanding and appreciation of the different roles of grassroots women and NGO partners in organizing. And finally, it has served as an organizing clinic, in which grassroots women have been facilitated to think through not just what they want to accomplish and the activities that will take them there, but to dig into exactly how they will go about it.

Participants
The most common reasons for why and how groups started this work were: a response to stigma, discrimination, to involve the church in AIDS work, poverty, lack of medications, increase in number of orphans. Groups organized as a result of the loss of loved ones, to reduce the rates of HIV, and to integrate land and HIV work. Some groups have been working for over 20 years, while others are less than a year old. Groups formed in their homes, hospitals, public offices, churches, with NGO partners, as small groups and support groups. Caregivers are now organized in local and national movements, through community organizations, as national and regional alliances, networks, under umbrella organizations, as volunteer and support groups, some formally registered, movements of rural women. The activities they are involved in include farming, care, awareness-raising, mobilization, caregiving alliances, livelihood programs and income generation, capacity-building, fundraising, lobbying governments, providing transport for caregivers. Groups fundraise through member contributions, collection income generation, contributions from individuals and communities, and donors. They also work to care for caregivers, to relieve burn-out, training departments of health, working with victims of violence, and clearing up myths around HIV and AIDS. Finally, they ensure food security by planting gardens, collective farming, cooking for orphans and providing meals after school for children.

Challenges caregivers face
Caregivers' challenges include lack of transportation, food security, medication, stigma from the community, finances, lack of materials and medications, evictions, disinheritance and lack of documentation such as birth and death certificates required for people to claim their rights. Compounding and overarching all of this is lack of recognition from the Government, NGOs, health institutions and other stakeholders. Several caregivers reported that hospitals were happy to refer patients to them, but did not include them in decision-making and often left them with significant responsibility with the release of a patient.

Naming, claiming and valuing the contributions of caregivers
"I am proud to be caregiver because I am giving love and attention to someone who might not otherwise be receiving it."

"We are proud to save lives, and provide education on how to stay healthy and prevent disease."

"We remove stigma, and give a human face to the problem."

"I am proud because I have encouraged community members to get tested, and I have seen the reduction of the spread of HIV."

Caregivers' strength lies in their commitment, passion and drive to care for their loved ones, friends and community members, and to change the stigma around HIV/AIDS. Furthermore, the strength of the groups came from their collective mobilizing and supporting each other through support groups, and working in partnership with many different types of stakeholders. Caregivers are also strong in their roles as community educators, on diseases, prevention and ARV treatment.

Caregivers' practices include utilizing door-to-door and community meetings as an important means community mobilizing, and awareness-raising in local languages. They provide ongoing counseling and support to people living with HIV, and information campaigns on the importance of being tested. Caregivers set examples of themselves as role models of “living positively” so that community members do not feel as though their status is a death sentence. They do not hide their status, and they encourage those living with HIV to engage in community life. Caregivers utilize media and pamphlets to raise awareness, and involve youth in their efforts. They also engage in livelihood and income-generating activities, such as soap making, gardening and raising livestock to resource their efforts. They work with church groups, government ministries, farming groups, social welfare, health professionals, hospitals and clinics, social workers, traditional leaders, NGOs, religious leaders, caretakers, traditional healers and birth attendants. Caregivers expressed pride in their ability to be self-reliant and self-sustainable, to be able to attend international forums to represent their groups, and to end myths and misconceptions surrounding HIV/AIDS. Some groups have been able to convince their governments to provide stipends from the government. Caregivers listed the number of dialogues they held with local leaders, and tracking HIV/AIDS resources as a success. By caring for orphans and vulnerable children, several kids have returned to school and have food in their stomachs.

Practice sharing
The Grassroots Academy is an opportunity to share innovative practices and strategies by which grassroots women are organizing for impact. The following organizations, most of which are new to the Huairou Commission, were asked to present their work on the second day of the Academy in response to interest from Academy participants. LAMOSA is a federation of community-based organizations advocating for land rights, formed by people claiming land who were dispossessed. In their land rights program, they address gender, livelihoods and HIV/AIDS. They began working on home-based care as, through their mobilizing around land, they found that communities were dealing with high levels of HIV and orphans. The caregivers that belong to the LAMOSA federation provide care, organize to pay school fees and uniforms, spiritual support and hospital visits, and they hold dialogues with local leaders and authorities.

Zambia Homeless and Poor People's Federation
Zambia Homeless and Poor People's Federation was formed 2001, when they started a savings scheme in Lusaka to alleviate poverty. With the AIDS epidemic, they saw a need to start a health savings account, and they opened a regional account. Every time they have a meeting, each Savings Scheme contributes to a regional account to support bereaved families or members in the hospital, as well as prescription support. Their general savings account goes to procure land and build housing for the poorest of the poor in their community, and to ensure or upgrade access to water and sanitation. The Federation lobbies for land through the government, they use the media, and they approach the traditional chiefs. Since beginning to work directly on HIV/AIDS, 5 federations are building foundations for care centers.

Ranchod Hospice
Ranchod Hospice, also in Zambia, was a pioneer organization on HIV/AIDS established in 1991 with a mandate of providing integrated human development to vulnerable members of society. They provide counseling and testing and care for caregivers. They have also been able to take advantage of a government policy of expanding access to Voluntary Counseling and Testing by securing government resources to train home-based caregivers to provide VCT in people’s homes using rapid finger prick testing. The process has empowered the caregivers to be counselors, it has reduced stigma as the tests are discretely performed in homes, and has expanded outreach because caregivers who live very far from established clinics or VCT centers can bring the testing and counseling directly to community members.

Mary Joy Aid for Development of Ethiopia
Mary Joy Aid for Development of Ethiopia was established in 1994 by a nurse in order to address the health issues of a few target areas. The organizational vision is to try to see a healthy, poverty-free and empowered society. They provide comprehensive AIDS prevention, care and support, livelihoods support, private community coordination and capacity building programs for community and organizational staff. They strongly work to fight stigma and discrimination including by providing homes for the homeless, for those who are kicked out because they are HIV+. Mary Joy was established its home-based care program using existing community based organizations that provide funeral services for community members. The leaders of these CBOs were sensitized about the importance of home-based care to increase outreach and education on AIDS, which the CBOs were aware of as they saw increasing numbers of deaths. They now have 508 trained home-based care providers who are volunteers. These caregivers are assisted by 134 peer mother groups, who have been organized to provide care and support to those in need and to ease the burden on the caregivers.

Coalition of Women Living with AIDS
The Coalition of Women Living with AIDS in Malawi began with 46 members from a variety of mixed-sex networks of people living with HIV. They took advantage of the wide mobilization of women into support groups in their respective districts to meet and recruit new members and to build a major organizing and constituency base to ensure that women’s needs, from the bottom up, were having an impact on policies and programs that affect people living with HIV. To date, the Coalition has 100,000 members. One of the organizing successes the Coalition has achieved is to ensure that fertilizer subsidies benefit women living with HIV across Malawi, so that they are able to grow food to stay healthy and so that they are able to adhere to their anti-retroviral treatment regimen.

Organizing for Recognition and Resources: The Home-Based Care Alliance
"Grassroots women know more about what needs to be done and how to do it in their community than the government does."

It was clear from the beginning of this Academy that home-based caregivers across Africa, in a variety of settings and situations are dealing with similar challenges, beginning with their day to day work and struggles, and compounded by the fact that they do this work with little or no recognition or resources. An innovative solution to these major challenges has the bottom-up organization of the Home-Based Care Alliance. This organizing initiative has been piloted by GROOTS International, and in particular by GROOTS Kenya, and replicated to various levels by UCOBAC, the Rwanda Women’s Network, Ntankah Village Women Common Initiative Group and the International Women’s Communication Center. On day 3 of the Academy, GROOTS Kenya and UCOBAC shared with eager participants the stories of how and why they have organized this Alliance, and then laid out a step-by-step guide for replicating the organizing process.

The third day of the Academy concluded with a deeper explanation and discussion of the Home-Based Care Alliance, and how the initiative could be replicated and adapted according to the local country contexts. The groups debated the ways in which an Alliance could benefit their communities and their work, and what challenges they might face according to their country context. Participants agreed that it was not a one-size-fits all model, but that it was time to identify areas in mobilizing was needed, how to sustain the mobilization and gain recognition for their work. While all the groups developed very different plans on how to establish a Home-based care alliance in their community, they agreed the idea was not to promote a single model, but to promote the recognition of grassroots women as caregivers and the belief that grassroots women can organize to promote their own priorities, values and vision

Throughout the next 2 days of the Academy, participants will be facilitated to make concrete action plans for organizing the Alliance, to determine the roles of caregivers and NGO partners and to lay out how being a part of a regional network could add value to this organizing process. Participants from the 6 countries participating in the Compensations for Contributions initiative will also share their results, experiences, challenges and lessons learned, and the group will use this research platform to launch into a discussion on how to move forward local, national, regional and global advocacy agenda to gain resources and recognition for home-based caregivers.

Caring for Caregivers
To set a precedent of self-care, we invited a facilitator from AIDS Response, a Cape Town-based NGO, to share techniques that caregivers can use to relieve stress and avoid burnout. The facilitator counseled participants on the importance of adopting healing and releasing the emotional burdens that can accompany caregiving. Some of these techniques included breathing exercise, hand reflexology, healing touch, stretching and movements based on yoga and tai chi.

Download More Updates:
Update for Day 4
Update for Day 5