Healthlink Worldwide

Overview

The Memory project began in 1997 to support children who were facing the prospect of losing their HIV-positive parents. At the time a lot of support work was being organised for mothers within their communities, but there was no approach specifically aimed at helping children communicate with their parents about these life-changing events.

Anett Biryetega, of Memory work's founding organisation - The National Community of Women Living with HIV/AIDS (NACWOLA) says: "Children could hear NACWOLA mothers talking on the TV and radio about living with HIV, but their own mothers had said nothing. Other children watched their mothers and relatives fall sick and die, but nobody had talked to them about what was happening – it could be very traumatising for the children.

"The NACWOLA women realised the importance of communicating with children to help them cope with their situation and this formed the basis of Memory work. Mothers were trained with the skills to communicate about HIV and eventually disclose their positive status to their children. Developing these skills gives families time to talk about all the issues that come with having HIV in the family. It gives children the opportunity to plan ahead; it helps them find ways to cope while their parents are still living."

Since 2003, Healthlink Worldwide and its partners have developed practical experience of implementing memory work, and have started to learn what it takes to adapt this innovative and creative approach to different communities, cultures and contexts. Through the International Memory Project (funded by Comic Relief), the National Community of Women living with HIV (NACWOLA) in Uganda and Healthlink Worldwide have been working with a group of partners from Ethiopia, Tanzania, Zimbabwe and Kenya to introduce and strengthen memory work approaches to communities in sub-Saharan Africa affected by the HIV epidemic. Healthlink Worldwide has also started to work with a partner organisation to pilot memory work in three states in India.

Why does memory work exist?
In sub-Saharan Africa, memory work has been used as a community led response to the HIV epidemic to support children and their families when a close family member is living with HIV. There are an increasing number of children who are orphaned through the HIV epidemic and who experience a negative impact on their emotional wellbeing and development as a result. Sometimes children who have lost their parents have experienced separation from family members, they may be denied their inheritance and face stigma from family and other community members. As a result of the stigma associated with HIV and AIDS, many parents find it difficult to talk about these issues with their children, and children often find them excluded from discussions and decision making about the family's future. When children are allowed to share family problems, they start to be able to cope with what HIV means for their own family life and future.

What is memory work?
Memory work developed as a creative response to the impact of the HIV epidemic on children, particularly children who faced being orphaned. Memory work is an example of a child-centred approach - that is, an approach that involves children in decision making processes in a way that is appropriate for their age and stage of development. Memory work was first developed by Barnardo's in the 1990s with African families affected by HIV and AIDS who were living in the UK. It has been used widely in many cultures to support children who are going through any type of loss and bereavement. It was adapted by the National Community of Women living with HIV and AIDS in Uganda to help them and their families cope with the realities of HIV in their lives. NACWOLA pioneered the use of the approach with its members in Uganda, and has gained over 10 years experience of using the method.

Memory work consists of several main elements:

• Communication skills
• Child development and parenting
• Disclosing HIV status
• Planning for the future and legal support
• Loss and bereavement

The memory book is an important part of this work, and is a simple tool that can support children, strengthening their sense of identity, and help them to understand their family background and circumstances. It is only part of the approach, and is stronger when it is not used in isolation from the other elements of memory work. When this happens, the process of writing a memory book can strengthen communication within the family and wider community. The content of a memory book is created by the individual (or family) writing it and can contain memories of childhood, important information about family and friends, parents beliefs, ideals and hopes for their children, traditions and special events in the family. It can also contain information related to the health of family members which can assist in communication around disclosing a family member's HIV status to a child. Some families have also developed memory boxes which contain objects of significance to the child and family. A memory book cannot protect children against loss and separation, but it can help them understand the past, and know their parents.

How can Memory work help?
Memory work helps meet children's emotional, social and spiritual needs, which are often neglected in efforts to make sure children are also receiving support that meets their physical needs. However, memory work can also address some of these practical needs through ensuring that the child's future (for example, through appointing a guardian and ensuring inheritance of land) is planned in the event that the parent may die. Memory work builds children's resilience to cope with the impact of HIV and AIDS on their lives. Resilience is strengthened when there is open communication between children and their parents/guardians, when they are able to express their emotions and fears, have a positive goal to live for, are aware of memories of their own past and loving relationships with their parents and those that care for them. It is also strengthened when children are given the opportunity to help others, developing a sense of resourcefulness and self-esteem, and when growing up in a supportive environment.

Our experience has shown that when parents, guardians, family members and children work together through memory work, there are huge gains in terms of the following:

• Improving parent-child communication and supporting parents to disclose their HIV status to their children
• Involvement of children in important family decisions, giving them a sense of ownership and responsibility in those decisions
• Strengthening children's resilience to cope with bereavement
• Building children's links to their family background and heritage, which becomes crucial if their parents pass away while the children are still young
• Preparing children for the future: parents have the opportunity to provide advice for their children verbally and in their memory book, about managing their future lives and maintaining links to friends and community support
• Reducing stigma and discrimination within families and communities.

The original concept of memory work was based on the idea that childhood memories are important in helping to determine our identity and values as we grow older. Within communities affected by HIV, this is especially important as a significant number of adults are living with HIV. Memory work has become an tool for ensuring that important knowledge is communicated between generations, and as a tool for testimony about HIV and AIDS.

What has Healthlink Worldwide been doing?
Since 2003, we have been working with NACWOLA in Uganda and partner organisations in Zimbabwe, Ethiopia, Tanzania, and Kenya to expand memory work to the communities they are working in. Over the last two years, the group of partners has:

• Been trained and supported in how to implement memory work programmes
• Trained staff and volunteers to work with groups of parents and children to do memory work
• Integrated memory work into the existing HIV/AIDS programmes of the partner organisations
• Strengthened links with other organisations, including local government and lawyers who can help support memory work
• Mapped information resources on memory work, child-centred approaches and psychosocial support in the context of HIV and AIDS
• Developed activities to sensitise communities on memory work and built relationships with key community members
• Started memory work with community groups, parent groups and groups of children and young people
• Developed a manual to support trainers delivering memory work
• carried out activities with children such as children's clubs
• Designed tools and approaches for monitoring and evaluating memory work activities at community level
• Reflected on what we have learnt as organisations in implementing memory work and started to document our experience.

These activities have generated important learning about what is required for effective memory work. Healthlink Worldwide has found that a thorough preparation and community sensitisation is vital, and that memory work is stronger when integrated into existing care and support programmes and organisations that support people living with HIV.

In partnership with other organisations, Healthlink Worldwide started two new initiatives in 2006. Working with a partner organisation in India, the Child in Need Institute, the memory work approach is being piloted in India (read more). Alongside HAPCSO and Tilla, we are also working with Save the Children to expand memory work across Ethiopia.

How will Memory work develop?
The memory work approach is designed to evolve, responding to the changing needs and circumstances of communities affected by the HIV epidemic. Communities and families are different with different needs, and memory work already responds to this in the way a programme is designed and the training is delivered.

Memory work was initially developed in projects working mostly with women. The partners in the International Memory Project are working with a wide range of groups, including men, children who have already been orphaned, and grandparents. Memory work can also work hand in hand with treatment initiatives. Although greater access to treatment, including antiretroviral therapy, means that people living with HIV will live longer, there is still a need for parents and guardians to communicate with their children about what is happening in their lives, and how this affects the family.

We would we like to hear other people's experiences of doing memory work. If you have been doing memory work, and would like to share your experience with us, please get in touch with us at info@healthlink.org.uk

 

 

Read the experiences of three mother's and their involvement with the International Memory Project

 

 

Further reading:

Sustained Practice - Memory Work: Learning from the Ugandan Experience, Autumn 2006 (PDF on the Royal Tropical Institute (KIT) website)

NACWOLA's knowledge - interview with Annet Biryetega, 2004 (PDF 2 pages, 179 KB)

Memory work: Learning from the Ugandan experience, 2005 (PDF 4 pages, 190 KB)

Scaling up Memory work: The challenges, 2005 (PDF, 6 pages, 126 KB)