Memory boxes to help say goodbye

It can be a plump basket in an Ugandan village or a discarded box from a shop in a South African township, painted in gaudy colours with food colorant. It can be a biscuit tin decorated with shells or a square metal box with a handle and a lock. Their purpose is to hold what HIV+ parents wish to leave to their children: advice, key information, sweet memories and the warm feeling of love. Memory boxes or books go by the generic title of memory work. They are designed to help the millions of families affected by HIV/AIDS in Africa to cope with disease, death and grief, and to plan the children's future. A number of organisations doing memory work in East and Southern Africa and the United Kingdom met in Cape Town, South Africa, last week to share their experiences and map how to extend it through the region. The Regional Psychosocial Support Initiative (REPSSI) and the Memory Box Project of the AIDS and Society Research Unit (ASRU) at the University of Cape Town organised the meeting. According to REPSSI, AIDS has left an estimated 13 million orphans in sub-Saharan Africa. Southern Africa accounts for 42 percent of the cumulative total of Africa's orphans. Up to one quarter of all children in the region may be orphans by 2010. With such numbers, in a context of poverty, individual counselling is too expensive and impractical to deliver. Group-based user-friendly models of counselling and psychosocial support are needed. Memory work is one such approach. "Conventional psychology is completely failing to contain stress and pain in our communities, where death is an ongoing process, not a once-off thing," said Johanna Kistner, of Ekupholeni Mental Health Centre in Katlehong township, in South Africa's Gauteng province. After parents and adult relatives die, many orphans go and live with foster parents, in institutions or on their own. Cut off from family, children's memories - their personal history - fade quickly. Orphans risk growing up without a clear sense of identity and roots, without the traditions and beliefs of their heritage. Memory books or boxes help children build an identity and strengthen emotional capacity, to understand the past and be less afraid of the future. As the family collects photos and souvenirs, draws a family tree and writes about their life, they grow closer. The process opens a window for parents to disclose their HIV-positive status and to talk frankly about the child's future. Memory books became popular in the early 1990s among a group of HIV-positive African parents living in Britain. Together with the children's organisation, Barnardo's, they developed a framework to write down their family history, so children could keep their memories alive. Ugandan NGOs took the idea further. The text was translated into Luganda and Kiswahili in 1996 and adapted to African needs in 1999. The Memory Project's five-day workshop in Cape Town comprised a crash course in parenting skills, childhood development, open communication within the family, and legal issues such as naming guardians, writing a will and safeguarding family property. "For us, the focus of the Memory Project is children," said Beatrice Were, at the helm of the Community of Women Living with HIV/AIDS in Uganda (NACWOLA), who pioneered the technique there. "It's about disclosing our status, discussing what will happen, and documenting our life together." It is very important that children are involved in looking at options and plans. "A mother may want her daughter to live with an uncle, but be unaware that he tried to rape her. The memory book creates a space for this dialogue," explained Carol Lindsay Smith, who worked with both the Barnardo's and NACWOLA memory projects. "The process helps avoid these nightmare situations where children are left alone at their mother's grave or are dispersed among relatives after the burial without warning," she added. The idea is spreading through the continent. In 2001, the Zimbabwean Red Cross began training 10 care facilitators for its HIV/AIDS programme, with the idea that they would transfer the skills to 100 members of support groups. In 2002, NACWOLA trained members of Women Fighting AIDS in Kenya. More training in Zimbabwe, Ethiopia and Tanzania is planned with funding from the British charity, Comic Relief. "The Memory Project has made a big difference in communication between parents and children, between spouses, the family and the extended family," said Catherine Ogolla, a programme officer with the Kenya AIDS NGOs Consortium. In South Africa, among others, the South Coast Hospice in KwaZulu Natal and the Sinomlando Project, an oral history centre at the School of Theology at the University of Natal, use memory work. "The purpose is to build resilience in children and facilitate the bereavement process," said Philippe Denis, director of Sinomlando. ASRU's Memory Box Project has been working since 2001 in Cape Town's Khayelitsha and Masiphumelele townships. An outreach programme within the University of Cape Town, it draws on narrative therapy to assist HIV-positive people to tell their life stories in a transformative way through memory boxes, books and body maps. Three teams of local HIV-positive people were trained in memory work and other income-generating skills, such as running workshops and training trainers in memory work, and doing participatory research in the Xhosa language. "This was the first time in my life I did something beautiful I could be proud of," said Babalwa Cekiso, showing the full-size body tracing with intricate decorations that depicts her inner and outer self, her pains and strengths. "Doing a memory book taught me to deal with AIDS within myself, in my heart," she added. The focus in South Africa is more therapeutic and adult-centred than the practical, family-centred Ugandan approach, which emphasises disclosure, parenting skills and planning the children's future. "This looks more like therapy as it is done in the West, and I feel that the focus on the parenting and planning components is more relevant to Uganda and Kenya," said Lindsay Smith. One key topic discussed was how the availability of antiretroviral treatment may change the purpose of memory work. If death is no longer the most pressing concern, if people live longer and healthier lives, memory work may shift away from disclosure and grief counselling. The meeting showcased a variety of memory work in Africa with common threads and healthy differences in focus, target groups, containers and contents, types of interventions and organisations involved. There can be no fixed format since the HIV/AIDS context differs so widely. "What works in Uganda may not work in Namibia, where people are less open about HIV," said Jo Stein of ASRU. Participants discussed the need for indicators and evaluation, skills transfer and ways to make the memory work sustainable, replicable and scalable. "This was an eye-opener, showing the incredible richness of what memory facilitators know, feel and do," said Denis.