Since 1992, the National Community of Women Living with HIV/AIDS in Uganda (NACWOLA) has been working to improve the quality of life of Ugandan women living with HIV/AIDS. HIV-positive mothers who were finding it difficult to tell their children about their HIV status started the so-called Memory Project, which tries to help HIV-positive parents give their children the support they need to survive with as little trauma as possible after the deaths of their parents.

The Memory Project consists of training sessions for HIV-positive parents to develop their communication skills with their children by writing a Memory Book. The Memory Book is a joint project between parent and child: they sit down together to tell the story of the child's life from his/her birth to the time of writing the book. Similarly, the parents tell their life stories from the time of  their childhood to the time of writing.

The process of gradually describing the parents' life will make it easier for them to disclose their health status to their children in a natural way. It also provides the child with an opportunity to ask questions and get clarification from the parent. This process strengthens mutual communication and children's involvement in parental coping with HIV infection. For very young children, the book will provide information and answers when a parent is no longer there to answer questions. The book can be accompanied with photographs.

Learning how to communicate

A major concern of HIV-positive parents is: "How do we discuss our serostatus with our children and prepare them for the future?" In a five-day participatory training session, the Memory Project teaches parents the skills they need to improve communication within the family on various issues. The training sessions address six topic areas  through sharing of experiences, educational films, role-plays, group discussions and brainstorming:

• Child development discussions help parents appreciate the motives behind their children's behaviour;
• Developing skills for effective parenting help parents become aware of their responsibilities as parents;
• In learning how to communicate effectively, parents learn how to identify communication problems in their families;
• Disclosure of the parents' health status to their children is a major theme, as it enables children to learn what they need to know when the parents are still alive. It facilitates sharing of family problems and planning the future together. Issues discussed include the advantages of disclosing when one is still strong, the state of mind one should be in before disclosing HIV status, questions children will probably ask and possible reactions to the news;
• Discussing permanent separation and death enables participants to face these realities and make preparations for the children's future. This includes making a will, which enables parents to articulate their wishes for the child(ren) in a legal and binding way;
• Page-by-page guidelines for making a Memory Book help parents to decide what to include in the book. The importance of keeping the family history and childhood memories will help tress the roots of the child.

Evaluating the Memory Project

During an evaluation of the Memory Project all mothers visited testified to the usefulness of the training in improving their communication skills. They said they felt more confident as parents. One woman said: "I can now answer any difficult question. Like when my children asked me how I got the virus, I answered with confidence." Another parent said: "I can now talk openly about my status with my neighbours, because I have nothing to hide from my children. They know of my status too. Before the training I was protecting myself by not talking to neighbours."

The training has also helped parents listen to their children -- as one woman said: "I had taken my child to her father. Whenever I visited her she had something to tell me, but I always ignored her. After the training I realised there is a need to listen to her and I am now staying with her."

Parents said that the training had increased the care and support for their children. Some mothers admitted that after the training they felt more kind and forgiving to those around them. They also reported less stress, guilt and burdens of secrecy. Worries and anxieties about their children's future and their own death are easier to deal with. Parents and children are better able to cope as together they prepare for the future.

Problems encountered

Parents have encountered some problems and challenges in compiling the Memory Book. When children start crying after learning about their mother's ill health and future hopes for them, this evokes strong emotions. Similarly, some mothers have put off revealing their serostatus to their children because they feared the impact it would have on the children. Sometimes children have demanded to be tested after learning their parent's ill health for fear of being infected too. Some mothers reported shock and surprise when they realised their children already knew their HIV status.

Some of the widows in the project had difficulty collecting information about their late husbands. Sometimes they had to travel several miles to get the necessary information from relatives. Another problem is the lack of adequate copies of the memory books. Each trainee is given only one copy after the training, yet every child needs a book. Children are reported to have quarrelled over the few photographs put in the books.

Peer counselling and sharing of experiences, through home visits by the Memory Project co-ordinators or by professional counsellors at AIDS clinics or at NACWOLA, have been of great help in dealing with these problems.

Involving fathers and communities

So far, there has been little experience in working with men, partly because NACWOLA is a women's organisation. However, in the current Memory Project training programme in TASO centres (The Aids Service Organisation) we are involving about 80 men -- one-third of the trainees. Another programme in Luweero District has involved the children's guardians, the community and its leaders to ensure continuity of programme achievements like school arrangements, estate security and collective community responsibility for children's guidance.

On the whole, the Memory Project has been a new experience and a breakthrough in an area full of challenges. The Memory books are revealing and memorable to the children, as they make them learn about their family origin, values and beliefs.