HIV and AIDS - International Memory Project (IMP)
IMP Partners
The six partner organisations in IMP have succeeded in initiating, establishing and integrating memory work at a community level.
So far nearly 11,000 people have been involved in sensitisation activities across the participating countries and over 2000 children, parents, guardians, carers and community volunteers have been trained in memory work approaches. Over 500 memory books have been written in the last year and a half.
The partners have been working in different ways and here we give a brief description of the partners and what they have been working on
National Community of Women Living with HIV/AIDS
(NACWOLA), Uganda
Founded
in 1992, the National Community of Women Living with HIV/AIDS (NACWOLA)
promotes positive living for women with HIV and AIDS in Uganda. Using trainers
to provide psychological support, economic empowerment and advocacy for
essential services, the organisation has 26 branches and 40,000 members
across the country.
NACWOLA’s philosophy is to work closely with their communities and ensure members feel a sense of ownership of the programme. Trainers and their follow-up teams, often HIV-positive themselves, run workshops and training sessions where parents and children learn to communicate about HIV issues in a supportive environment. The process is based on sharing experiences; by sharing their own stories the trainers encourage participants to discuss their fears and help prepare families for a more secure future. This approach results in a programme that reaches out to individuals, families and whole communities.
One trainee in a disclosure training session said: “I have learnt the importance of disclosing my status to my children, and I can show them the riches of the family. My 11 year son has been taking anti retro viral drugs without knowing his HIV status. After the session I went and disclosed to him, now I feel relieved."
Over the years, NACWOLA has evolved and new programme components have been developed. A recent example is the inclusion of fathers; previously work focused solely on women and children. As Jacinta Magero, member of NACWOLA explains: “We identified a need to bring fathers on board; they have an influence in family decisions. We had cases where, after the death of the mother, fathers were bringing up their children alone.”
The Memory Book, designed to help mother and child discuss changes in family circumstances, now includes a section on the father’s history as well as the mothers. NACWOLA also works with The AIDS Support Organisation, Uganda, (TASO), on their programme to support men’s HIV issues. This contributes to NACWOLA providing a holistic service to their communities.
Family AIDS Caring Trust (FACT), Zimbabwe
FACT
is a Christian-based organisation working with various communities to provide
HIV prevention programmes, training and care for the whole person. FACT
aims to become a renowned organisation working towards the elimination
and mitigation of the impact of HIV and AIDS. To achieve this vision, FACT
facilitates the formation and builds the capacity of community based organisations
in Zimbabwe and in the Southern African region.
As part of the International Memory Project, community sensitisation activities have taken place with support groups for people living with HIV and AIDS and FACT staff. Memory work has been incorporated into existing programmes and an IMP coordinator has been appointed. Memory work training has involved 38 parents and guardians and 21 project staff. Families are improving communication between the parents, guardians and the children and have started to write memory books.
A mother who attended a workshop said: “The topic on disclosure was the most useful to me because now it is going to be easy for me to disclose my status to my children. It will be helpful if I manage to help my family and others to come up with their own memory books”.
Hiwot HIV/AIDS Prevention, Care and Support
Organization (HAPSCO)
The Hiwot AIDS Prevention, Care and Support Organization (HAPSCO) was established
in December 1999 by Tibebe Maco, a nurse who had seen the impact HIV and
AIDS was having in Ethiopia. The organisation works mainly in the slum
areas on the outskirts of Addis Abeba. HAPCSO implements a range of programmes
including home based care, income generation and orphan support targeting
families, young people and health professionals. HAPCSO have integrated
their memory work activities with their home based care programme.HAPSCO
also work with community leaders (Idirs) - providing them with the skills
needed to educate themselves and their peers about HIV prevention. The
community programme works with Idirs as part of their home based care programme.
It was developed to enable the Idirs to contribute money to care for orphans
in the community. The Idirs act as an entry point into the community, raising
the issue of orphans and initiating the idea of Memory work.
The coffee ceremony, an important element of Ethiopian culture, has also been used by HAPSCO in their community level work. It allows a space where households can share information about Memory work and discuss HIV and AIDS issues.
TILLA Association of Women Living with
HIV and AIDS (TILLA AWLHA), Ethiopia
Tilla is a community based association which aims to reduce and mitigate
the impact of HIV and AIDS on women, strengthening their coping mechanisms
to HIV and AIDS. Tilla’s programmes include prevention and
community awareness, home based care and income generation.
TILLA believes that community awareness programmes are key to successful memory work. This includes involving men and fathers, guardians, child-headed households and extended families in the memory work activities. Tilla have integrated their memory work activities with their testimony programme.
Cooperating with other interested NGOs and government organisations has also strengthened TILLA’s approach to memory work.
“Letting the society and my children know that I'm living with the virus helped me. Especially the care and support that my elder son gives me boosts my confidence", said a TILLA member after the memory work training.
Women against AIDS in Kilmanjaro, (Kiwakkuki),
Tanzania
In 1990, Women against AIDS in Kilimanjaro (Kiwakkuki) was set up by a
group of women in the town of Moshi. Since then the organisation has attracted
over 700 volunteers who work with communities in the Kilimanjaro region.
Kiwakkuki uses a number of activities and approaches to achieve its aims
of sensitising and educating communities about HIV and AIDS. These include:
- The Moshi HIV and AIDS Information Centre
- The Orphan Support Programme
- A Volunteer-Counselling and Testing programme
- A home-based care programme
- The centre of HOPE for people living with HIV and AIDS
Many of the volunteers at Kiwakkuki are HIV positive and most have completed their own Memory Books to share with their families and use as examples for other families in the community. In recent times the work of Kiwakkuki has expanded from focusing on the mother and child relationship to involve other carers. Often a child’s first point of care is a grand-parent, who may be unaware of issues involved with HIV and AIDS, Kiwakkuki is finding ways to include grand-parents in their educational work.
Kiwakkuki’s approach involves working with the large number of orphans in the Kilmanjaro region. Early on in the implementation of Memory work the organisation set up children’s clubs. These clubs have proved invaluable for children, allowing them to share their experiences with one another. They provide children with the chance to communicate in a supportive environment. This helps to dispel the stigma and discrimination associated with HIV and AIDS.
One Memory work trainer tells the story of a child who participated in a training programme: "One day when she was sitting alone thinking where there was a good place she could hide and hang herself, a mother from Kiwakkuki went there and talked to her about the Memory book and that she could participate in a training...during the workshop she disclosed her pain to me."
The children in the club are an inspiration for others in the community and are creating demand for Memory work by sensitising the community around them about the project. For some children this has been the only outlet they have had to share their sometimes painful and personal experiences. One outcome of the clubs has come from children requesting assistance to set up their own income-generating activities and interest in vocational training.
Kenya AIDS NGOs Consortium (KANCO), Kenya
KANCO is a national consortium of civil society organisations in Kenya
that exists to provide and promote leadership, solidarity and collaboration
among its members for collective action towards effective responses to
HIV and AIDS.
Ten member organisations have implemented memory work through KANCO's involvement with the International Memory Project (IMP), reaching over 1000 families.
KANCO has set up an IMP team and trained 24 people from 22 member organisations in memory work. At community level, members of 19 organisations have been trained to implement memory work. A community sensitisation workshop was attended by 170 key stakeholders.
A workshop participant from Kenya Long Distance Truck Drivers Welfare Association commented: “Memory work is an eye opener to me as it is practical and participatory activity: A project that can be done by everybody to help our children understand our background, our wishes for them and our plan for the future. It will definitely create a difference among the long distance truck drivers and sex workers along the highway and also among the communities."
KANCO has concentrated on implementing memory work using existing structures. For example, Port Authority employees were trained in their workplace and now carry out memory work sessions as part of their weekly peer education meetings.