Cover Image
close this bookInvesting in Our Future: Psychological support for children affected by HIV/AIDS. A case study in Zimbabwe and The United Republic of Tanzania (UNAIDS, 2001, 77 p.)
close this folderHelping parents talk to their children about death and dying
View the document(introduction...)
View the documentFighting the conspiracy of silence
View the documentSaying good-bye
View the documentMaking a Memory Book

(introduction...)

Once children realize that a parent may die, the future becomes a major concern. “Where will I go?” and “Who will pay my school fees?” are common questions. When children are not given the opportunity to express their emotions about the situation, these feelings are left to fester and could have long term effects such as depression or nightmares.

“I dream a lot about my deceased father. He comes to me, this is the third time. Sometimes I see him as if he is walking in his sleep. It frightens me.”

Daliusi, at a HUMULIZA counselling session for orphans in Itongo, United
Republic of Tanzania

Fighting the conspiracy of silence

Traditionally, children are not encouraged to talk about themselves and how they feel; therefore when they are finally given the opportunity they often have trouble expressing emotions. However, just because they do not verbalize their emotions, does not mean they are not affected.

It is a common belief that because children are resilient, they are not in need of counselling about death. This can be demonstrated by the idea of comforting the widow at the funeral and sending the children out to play. Children are encouraged to keep their emotions inside and may hear such warnings as, “If you cry, you will end up like your mother!”

On Saturday the 19th of February 2000, my father died. We had to go home and when they told me I cried and lost my appetite and I did not want to talk to anyone. When the people from our church came to make inkonzo, I wasn’t concentrating. I always thought of my father and every time I think of him, I cry. On the burial day, my mother said I could not go, and I cried until they said they would let me go. Then they said, if I cry during the body viewing, then I would not be able to go, so I did not cry.”

Young girl’s testimony, Masiye
Camp, Zimbabwe

In the Shona culture in Zimbabwe, children do not actively participate in rituals surrounding death, and they are usually kept away from the funeral and the grave, although changes have been noted in this custom. Traditionally, families who have moved away from the rural areas return to the village to bury a family member. Usually when this happens, the remaining children are left behind in town.

Adults also avoid talking about death to children because it is too painful for the adults. The child’s grief can evoke memories and strong feelings in the adults that they are not ready to deal with. Adults argue that by avoiding discussing death they are actually protecting the child. Many parents hope to minimize the impact of the loss by avoiding talking about it, a “conspiracy of silence”.

“Children are fantastic observers, they miss nothing, however, they are poor interpreters of what they see and hear. They will often internalize the situation and feel a sense of personal responsibility for what they see around them.”

Sue Parry, FOST

This “conspiracy of silence” does help parents control their emotions, but even though nothing is verbalized, the parent is still communicating with the child about sickness or death, only it is something negative.

According to Chipo Mbanje, head of Positive Women’s Network in Harare, Zimbabwe, children are like a sponge; they absorb everything (emotions, tensions and actions) but adults do not realize there is so much water inside. Children’s roles and lifestyles change dramatically when AIDS enters the household. The children often become the carers for a sick parent or they have to take on additional duties in the household, such as working to replace the income of the sick breadwinner or to supplement the money needed for treatment.

Children can see these stressors and sense that there is something seriously wrong, but they may not understand what it is or its implications. This can make them feel anxious, guilty, depressed and misunderstood. Often they do not express these feelings because they do not want to upset the situation further or they may be afraid of being overwhelmed by their feelings and try to keep them under control by keeping them inside.

Sometimes they get the feeling that whatever the secret is, it is too horrible to be talked about. By discussing the situation, children’s fears are alleviated and they will be able to cope better with the stress.

Saying good-bye

Talking to children about death in advance gives them time to get used to the idea and gradually loosen the bond of attachment. Children who had the opportunity to say good-bye and were given last words of advice greatly appreciated it when the parent is gone. Having the chance to say actual thought-out good-byes to people, places or a familiar family structure is very healing for a child. Wishes and blessings can be exchanged, preventing the children from blaming themselves and leaves less unfinished to complicate the grief process.

In 1998, research was conducted by HUMULIZA on talking to children about death in the Kagera region of the United Republic of Tanzania. The research consisted of talking to more than 200 families about how they had approached death and dying within the family.

The children whose parents had talked to them about dying appreciated being able to use the time to share information and advice. For instance, the children had the opportunity to learn how to do household tasks and could ask the parent, “When you die, how should I do this?”

Making a Memory Book

Another tool for communication is the Memory Book, which was recently introduced in Zimbabwe. Originating in Uganda, the memory book is a journal of facts and memories for children who are facing loss or separation from a parent, including divorce, any terminal illness or adoption, and it is appropriate for any culture or background.

If children are separated from their parents, memories and identity tend to fade. The Memory Book is an attempt to keep the memories alive and strengthens the child’s sense of belonging. The parent or caregiver fills in information and personal stories under different headings, including “My favourite memories of you,” “Your health,” “Information about your father,” “Family traditions and special events,” and “The family tree.”

As the introduction of the book states, it helps “children to understand the past and move on to a more secure future.” It is a photocopiable resource, which makes it affordable and easy to distribute to parents and carers.

There are various ways of completing the memory book. The parent can complete it and then go through it with the child or the child can help in its completion. An important aspect of the book is that the child has the opportunity to ask questions about its history and future. If the parent wishes, the book can include input from other family members, photographs and other memories to remind the children of life before the separation from their family.

The Memory Book is a tool to help the parent and the child to deal with the past, present and future of the child. As it is common for orphaned children to be moved into a different area, the book serves as a reminder of their roots so they do not lose their sense of belonging. Disclosing the parents’ HIV status is not the main goal of the book, but it does allow the opportunity to talk about HIV and facilitates disclosure to other family members. The book is also beneficial with regard to HIV prevention, because the children witness and understand the ordeal the parent is going through and do not want to repeat it.

Mothers in Zimbabwe who have learned about the Memory Book from the Positive Women’s Network say it made them aware of their children’s fears about the future. By discussing the book, they were able to talk about who the child can turn to with questions and problems, and their children could be part of the decision on where they will live after the bereavement, both of which empower the children by giving them choices. Talking about death ahead of time affords the children the opportunity to test the decision of where to live over the holidays to see if it would actually work.

“By talking to your children about the future and teaching them how to take care of themselves, you create empowered orphans who can live on their own even if they’re 8. It is important to teach children that life isn’t always rosy, but that they are able to deal with the most difficult situations.”

Chipo Mbanje, Positive Women’s
Network, Zimbabwe

Talking to children about death and dying is difficult for all parties involved. It brings out sensitive issues that the parent may not be ready to deal with. For example, one mother was filling out the Memory Book when she came to the page on the history of the father and said, “How do I tell my child about his father if I don’t even know who he is?” This and other similar problems indicate a need for additional counselling for parents while working on the book or of adapting the book format.