Organizational formation varies based on local context, but generally groups are structured from the ground up, starting with the home-based care group/caregiver cluster (usually of about 20 people). Each of these groups nominate 1-3 representatives for a district or divisional Alliance, and moving up to the national level. In Uganda, a strong grassroots board of caregivers representing the various regions serves as the decision making and planning body for the Alliance.  In Malawi, current structure consists of a taskforce, which oversees three districts committees.  They in turn manage and coordinate the Alliance.  Benin, on the other hand, has at least 25 leaders of various types.  These include, local authorities, health center managers, and NGOs, which organize women providing home-based care.  Thus, in order for Lambassa ICA (the support NGO in Benin) to facilitate their work, a network of people living with HIV/AIDS has been created, which allows all members to participate in organized activities and engage in peer exchanges.

Solid networking and linkages are the strongholds and foundations for the Alliances, which allows for access to national and international information about health initiatives that is vital for Alliances to make an impact on advocacy.  GROOTS Kenya has made significant gains in advancing the position of home-based caregivers and has proven to be an effective model for other countries.  The International Women’s Communication Center (IWCC) in Nigeria serves as a connection between the international network of women’s rights and development organizations to the Nigerian women at the grassroots level.  They have established homecare, and organize annual women institute training centers in twelve local authorities in the country.  In Rwanda, the Rwandan Women’s Network (RWN) facilitates activities and provides capacity building workshops for people who are already working as caregivers.  Moreover, RWN’s partnership with the Department of International Development in the UK includes working with caregivers who provide care and support for genocide survivors who contracted HIV/AIDS as a result of sexual violence.  RWN’s caregivers also partner and collaborate with local NGOs and with local government, which helps caregivers to be regarded as advocates and allies within their respective communities.

HCBA’s all across are engaging in vital and ongoing activities that respond to the needs of the communities.  In Ethiopia, for example, a consultative workshop was held by SHAFON in February 2011 in Hawassa.  Additionally, communities on both a regional and international level participate in peer exchanges, which strengthens the Alliances and fosters advocacy by allowing for sharing of achievements and challenges.  Rwanda’s group has been active in working with local clinics and doctors to provide referrals and clinical trainings for caregivers.  Moreover, their partnership with USAID runs the Community HIV and AIDS Mobilization Project (CHAMP).  This project also collaborates with the Rwandan Ministry of Health to train community health workers.  Other groups, such as the Grassroots Sisterhood Foundation in Ghana, besides being committed in HIV/AIDS awareness advocacy and the Home-Based Care Alliance, activities also revolve around issues of domestic violence, early marriages, land, and property and inheritance rights.

The latest addition of the Home-Based Care Alliance Newsletter is hot off the presses and ready first things this year.  In this edition, check out the progress Alliances has made in influencing their governments to including caregivers in decision-making forums and in growing across 12 countries in Africa. Read the HBCA Newsletter Vol 1 Issue 4 here and start off the New Year right!

As the final issue for 2011, the newsletter consolidated information about the Alliance advocacy and organizing while also highlighting the story of one caregiver  taking leadership in her community giving both a global and personal perspective the to the work of the HBCA.  Also, from the update on the Huairou Commission ground-breaking research readers can see the importance of grassroots-driven research and the benefits of organizing caregivers into Alliances.

The Advance is an official program of The United Methodist Church through which United Methodist districts, local churches, organizations, individuals and families may choose to support particular, approved mission programs with their financial
gifts. Donors to the Advance are contributing to the advancement of the Home-Based Care Alliance by providing funds that go directly to grassroots home-based caregivers who collectively prioritize the money for home-based care kits, gloves, medicines, food for the sick, clothing, and books for orphans. This support allows the women to provide much needed health services working in the poorest and most marginalized communities without sacrificing their sparse income in service to their communities.

Milliag Mhlanga

My name is Milliah Mhlanga I am 62 years old. I live in Desai compound in Lusaka, Zambia.  I belong to the Zambia Homeless and Poor Peoples Federation (ZHPPF) HBC and I have been a Home based caregiver for eight years now. Although I was trained as a caregiver just eight years ago, I have been working as a caregiver since I was 30 years old. I used to offer my help voluntarily to people in my area, I used to assist those that had been discharged from hospital but were not yet strong enough to do household chores. My service did not go unnoticed by the community, thus when an opportunity came for palliative care training, I was selected to do the training. People saw how committed I was.Through my continued commitment, I was chosen as a leader. My community wanted others to learn from my example of commitment.  We are doing a lot in our community, but it is not recognized by the government. For this reason, when time came to form the Home Based Care Alliance I took the lead. I wanted our efforts to gain recognition. If I compare the situation 30 years ago when I started giving my services to the community, I can see now that the burden is becoming more. As home based care givers we have more to do now. Previously (30 years ago) I used to see an average of two people per month but now I have over 20 people on average to take care of every month. There are more people that the hospitals are discharging who still need care.  The nurses and doctors at the hospital never make follow ups on the patients they discharge; it is up to people like me to take care of them until they are strong enough.

One moment that inspired me was when we had a patient in our community who needed 24 hours care. I could not manage to do this alone. I informed other caregivers and we took turns to take care of her until she died. This made me realize that we needed to work together even though we were trained and reported to different organizations. Also as we worked we shared our experiences, from which I noticed that we were basically facing the same challenges. These challenges could only be addressed if we united and spoke with one big voice. As a caregiver I provide compressive care for the patient. A nurse will give medicine but will not take care of other needs such as washing the patients (especially those bedridden who cannot manage to walk to the restroom). Also as a caregiver I develop a relationship with the patient which nurses rarely do because they have shifts and may be assigned to a different ward. But as a caregiver the patient will see me every day and we have more time for discussion which helps build trust. They look to me not as a caregiver but as their grandmother, mother, sister or aunt. Such care is not provided for by government workers. As we try to form the HBC alliance we have to do a lot of movements to meet caregivers in other parts of the district, and this cost money.  We have to limit our movement depending on money available. I would have like it if the whole country was covered in the formation of an alliance but that is a challenge. If government and Non governmental organizations were to assist us, we could appreciate it and make an alliance that covers the whole country.

My vision for my community is that we should be able to have caregivers who are recognized by the government within our community. Non governmental organizations come and go but we shall always be with our government. If the government recognized us as workers, then we could have a continuation of HBC services in our community. My vision is also to see that we have viable income generating activities in our community that would provide funds to assist the clients in our community.  There are times when as a caregiver, I use my own funds to assist where there is a pressing need.

I have hope for the future because the few meetings we have had so far in planning to form the Alliance have shown me that we can do it. We have the confidence and we are united even though we are coming from different organizations.

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This story can be found in The Home-Based Care Alliance Newsletter Vol 1, Issue 2 August 2011.  This is issue also includes Global Advocacy Updates, Benin Caregivers Taking Lead, Overcoming Obstacles & Transforming Community, and more!

GROOTS International and the Huairou Commission are pleased to present Volume 1, Issue 2 of the quarterly Home-Based Care Alliance Newsletter. In this issue, caregivers from Home-Based Care Alliances in Benin, Zambia, Nigeria and Uganda share what drove them to begin caring for those in their communities and to organize Alliances to advocate for the priorities of those they care for and gain recognition from their governments.

Recognition by the government for their tireless work and contribution to their communities stood out as key to caregivers across their.  Caregivers from Benin working with ICA Lambassa share how they began providing home-based care when no one else was and organizing the caregivers in their communities to gain recognition.  A caregiver working with the Zambia  Homeless and Poor Peoples Federation and leader in the Zambia Home-Based Care Alliance who has provided home-based care for over half of her lifetime shares how her commitment has inspired others in her community to act and join her in calling for the government to recognize their work.   Two caregivers from the International Women’s Communication Center in Nigeria share how their experience receiving care while they were sick and bedridden inspired them to provide care for others also infected by HIV.   In Uganda, a caregiver from the Slum Women in Development shares her inspiration to take action in order for women in her community to have a strong voice to stand up against discrimination and to seek support from the government.  The newsletter also includes updates on global advocacy and news including caregivers from Uganda and Guatemala bringing the experiences of caregivers to the United Nations High Level Meeting on AIDS in New York City and the appointment of Violet Shivutse, a caregiver from Kenya, to the Global Coalition on Women and AIDS steering committee.

We welcome and encourage anyone who receives this to print and distribute widely to caregivers you are working with and to share electronically with your networks.

Read the Home-Based Care Alliance Newsletter here.

Congratulations to Violet Shivutse of GROOTS Kenya and the Kenya Home-Based Care Alliance for her nomination by the Global Coalition on Women and AIDS (GCWA) to represent the Huairou Commission on GCWA’s Steering Committee!  The Global Coalition on Women and AIDS is a worldwide alliance of civil society groups, networks of women living with HIV, women’s organizations, AIDS service organizations, and the United Nations system committed to strengthening AIDS programming for women and girls.

The nomination of Violet, the first and only grassroots home based caregiver to sit on the GCWA Steering Committee, is a significant accomplishment. It also marks a great opportunity for grassroots women to directly influence the women’s movement and increases access to global policy spaces. We congratulate GCWA for taking this important step in recognizing the importance of grassroots caregivers in the global AIDS response.

Violet’s aim on the GCWA Steering Committee is to ensure the voices and priorities of grassroots women responding to HIV in poor urban and rural communities across Africa are represented on the Steering Committee. She will also be able to influence the agenda, priorities and programs of the GCWA to reflect grassroots women’s realities. Through her, the voices of many grassroots women, providing home-based care to people living with HIV/AIDS will directly reach the global level.

Violet is a global leader whose leadership is deeply rooted in her own community. She is the founder and director of Shibuye Community Health Workers and a focal point leader in GROOTS Kenya. She is also a founder and leader in the Kenya Home-Based Care Alliance and one of the innovators of the Watch Dog Group, a partnership and accountability tool which is stopping and redressing land grabbing from widows and orphans across Kenya. In the Huairou Commission, she skillfully bridges her grassroots experience to global level policies and processes throughout many activities and events. We are excited for the opportunity she has been given to provide her expertise to the GCWA!

HIV infection and prevalence rates are higher in urban than rural populations, estimated at 23% and 11% respectively. Women are more vulnerable than men, with prevalence rates of 18% and 13% respectively, which calls for gender sensitive interventions (National Health Strategic Plan 2006 – 2010). In addition, long distances between peri-urban and urban unplanned settlements and health facilities exacerbated by poverty have resulted in reduced access to counseling, testing, treatment, adherence including keeping of clinic appointments and other vital health services.

However, the grassroots caregivers from the federation, the majority of whom are women, have taken the lead in mobilizing their communities for voluntary counseling and testing including supporting treatment and adherence interventions in partnership local health facilities.

Promotion of counseling and testing, sensitization as well as the important role of caregivers in the community is helping in ameliorating the adverse impact of HIV/AIDS by forging strong ties with district health offices local health facilities and other partners focusing on counseling and testing, treatment and fighting against HIV related stigma and discrimination.

Bearing in mind the impact the pandemic has had on Federation members, the Zambia Homeless and Poor People’s Federation in partnership with PPHPZ, among other interventions, rolled out a mobile health outreach campaign in unplanned settlements in August 2009. The mobile clinics offer access to free and confidential counseling, testing among other services, and linkages to the nearest treatment services. Caregivers are at the centre and key in sustaining consistency with clinic appointments, treatment adherence,  and food security. This has contributed greatly to the improved health status of beneficiaries with many clients becoming ambulatory and productive again.

Since the launch of the mobile of mobile health clinics and voluntary counseling 2,645 people have accessed health services with 1,001 unplanned settlements residents from 9 districts across the country counseled and tested for HIV in order to know their status.

The progress in combating stigma and discrimination was demonstrated recently in the Copperbelt Province when a Federation leader living with HIV talked openly about her status while addressing people that tested positive during the mobile health clinic about positive living and the need for treatment. After the talk, eight people not only came out about their HIV+ status but also had their CD4 tests done and are now on ART treatment.

The PPHPZ/ZHHPPF partnership has forged good working relationships with Zambia’s Ministry of Health District health offices, New Start Centre Counseling services, and by collaborating on various health interventions. Counselors and caregivers from ZHPPF work together with health personnel to ensure follow-up and contact is maintained between HIV+ clients and nearest health facilities in the communities. Treatment of opportunistic infections were also addressed during the mobile health services.

-Report submitted by Esau Shaw of People’s Process on Housing and Poverty in Zambia

To initiate the Alliance process, GROOTS Zimbabwe held community based consultative meetings in four districts of Manicaland and Mashonaland to introduce caregivers to the Alliance and to gather their input to shape the priorities of the Alliance. GROOTS Zimbabwe then hosted a workshop with four home based care groups (Dioceses of Mutare Community Care Programme, Africare, the Ministry of Health and Child Welfare, and Development of People to People Programme)in order to develop a Coordinating Committee that would be tasked with mapping caregivers in the four districts to feed into a national database of caregivers. These efforts will ultimately support the quantifying and qualifying of home based care givers contributions to the AIDS response. As of late March, 857 home based care givers, all female, were mapped and an anticipated 2,000 names will be included in the database before the end of the year. This begins to paint a clearer picture of the under documented volume of caregivers that are sustaining their immediate families and extended communities.

The Alliance will enable a space for leadership development, organizing, and resource and skills mobilization. During the next six months, as the Alliance continues to establish clear channels of communication and leadership structures, GROOTS Zimbabwe will also work with caregivers to develop income generating projects (IGPs). The majority of time these IGPs are supported by donors with the express aim to uplift clients. This is problematic as it the projects do not extend to home based caregivers who many times give their own money to support their volunteer work.

Please continue to check back in for updates on the progress of the Zimbabwe HBC Alliance.

Update submitted by Jael Amati of GROOTS Kenya 

For further information, please contact the Consortium’s Communications Manager Richard Walker at Richard@aidsconsortium.org.uk who we thank for this update.