ISSUE 34 NOVEMBER 2001 BACK

aids, bereavement and support

Building resilience and hope for the future

Liesl Jewitt is a social worker and co-ordinator of the Rob Smetherham Bereavement Service for Children*, which is attached to the uMngeni AIDS Centre in Durban

One dying man's art started the process of a gift that keeps on giving. With its limited resources (all fundraising has been done locally, with no grants thus far), the Rob Smetherham Bereavement Service for Children offers psycho-social support for bereaved children, especially those whose parents are dying, or have died, of AIDS.

Working alongside projects and organisations that provide material and medical support to children and their families, the project has four central aims:

  1. To provide individual and group play therapy and counselling for bereaved children, especially children affected by AIDS.

  2. To provide support and counselling to families and adults involved in the lives of bereaved children.

  3. To create awareness in the greater community regarding the needs of bereaved children and their families.

  4. To educate and train community members to meet the emotional needs of bereaved children.

Coping with death and dying has a major impact on children's resilience and ability to cope with their circumstances. The question many people ask is, why is psycho-social support important in the face of the many material needs of children who have been affected by AIDS? The answer is simple. When children are attended to emotionally, they are better able to use opportunities for education and health and material care. Giving children food and clothing is no longer enough. There are a number of aid organisations that provide for material needs, but we believe very firmly that children's resilience is only encouraged when their emotional needs are also met.

Many families coping with death and severe poverty no longer have the capacity to meet children's emotional needs on top of everything else. We understand this emotional desert and hope to bring some relief, through working with these children in their communities and teaching others to help in practical ways, through play, which is, after all, a child's natural medium of communication. Often children internalise their feelings and responses and that makes it difficult to see the need for emotional support.

Response to bereavement
When children are not given an opportunity to talk about death and dying, their imagination and fear take over in response to the emotions they see around them and they may assume responsibility, or feel powerless and angry with themselves for having caused this problem.

Not dealing with grief makes it harder for the child to cope with her circumstances. Coping difficulties could result in problem behaviour that may impede scholastic development and other areas of the child's life and could have far reaching consequences into adulthood.

The child who is bereaved by AIDS often has to cope not only with being orphaned, but also with multiple deaths in the family, the secrecy, stigma and many misconceptions still attached to the disease, as well as extreme poverty. Bereavement counselling helps children to develop coping skills to deal with the stress that AIDS brings. It supports and encourages the child” s capacity for resilience and the ability to understand what is happening.

We believe that children can only make “informed choices” when they are in a position to expect more from life than poverty, violence and death. Childhood trauma associated with death and bereavement (a phenomenon which becomes exaggerated through exposure to multiple deaths in a family) can cause children to become emotionally expressionless; some may become mute and void of response to the environment, suffering from depression and other forms of mental illness. It also detracts from empathic responses to others, puts children at risk for abuse, makes some children aggressive, and increases their own risk of HIV infection. Feeding, clothing and sending these children to school is a start, but they need greater emotional input if this society is to see any change in the future. Children are capable of so much with a little encouragement. We do not have all the answers and there are many more children out there who need someone who believes in them and is able to encourage their resilience, help them access the internal resources and answers that they have. But this project is at least a start, in its attempt to address some of the emotional needs of bereaved children, especially those affected by AIDS.

Community intervention and mobilisation
With further funding the Rob Smetherham Bereavement Service for Children would be able to implement a community mobilising programme, giving the community skills to cope with its bereaved children. A programme for the transfer of skills for meeting the needs of bereaved children is being developed, whereby the play techniques that are used for groups of bereaved children could be taught to members of the community (to individuals who do not necessarily have any tertiary qualification) who would in turn be able to teach others similar skills.

We have some material that I have developed, based on my experience of working with children and communities in need, as well as material given to us by Rose Schoeman of the Child and Family Centre at the University of Natal, Pietermaritzburg. I also use some of the material developed by Dr Kurt Madorin (developed in Tanzania, with so-called AIDS orphans, for Terres des Hommes). I quite like to use the structure of his programme for “group intervention for AIDS orphans”, with some adaptation, in the groups I run. This structure includes giving the children something to eat halfway through the group session (to express basic nurturing), as well as using music and songs to open and close a group meeting. There are two parts to the programme: “looking back” “what brought the child to the group, her story and what she has experienced; and “looking forward” “helping to build the child's resilience and hope for the future. I find that his work most closely resembles the gestalt play therapy approach which I use (developed by Fritz Perls, and adapted for children by Violet Oaklander).1

Play techniques
The play techniques I use, from a gestalt therapy approach, are drawing and painting, puppets, clay, sand-tray, stories, and more. With one child I made up a story about a little boy being scared to go to the hospital and the child I was working with made some suggestions as to what we could tell the little boy so that he would feel less scared about going to hospital. (The child in question had been referred as he refused to go to hospital because of his fears “both of his parents died of AIDS in hospital). After we wrote down these suggestions he said that the little boy would not be scared anymore, because at hospital they try to help you feel better. Later the child's aunt reported that he was now quite happy and relaxed when going to hospital.

Another child used clay to mould a form which represented his mother and was then able to tell her the things he had not been able to say before she died “this was obviously a great release as he was far better able to express his feelings after that.

In the group I am presently facilitating, with children aged nine to 11 years, the children all express immense joy at being with other children and having made new friends. When their parents die, their children feel isolated and different from other children; in the group they meet children who share similar experiences. Also being a part of such a group allows the child to be just a child and to play. Various games, such as “cat-and-mouse”, are used to facilitate play as well as to give the children an opportunity to consider friendship as a coping mechanism. The “cat” may not catch the “mouse” who is holding hands or linking arms with another “mouse”. In the few groups I have run for the project, the children always wish the group could take place every day “partly because they have so much fun, but also because they feel like “normal” children again. So many children have had to take on many added responsibilities when a parent is sick or dying, that playing becomes a real luxury.

Support for communities
The more staff members there are to make a person-to-person input, the more widespread and effective the assistance to communities would be. Then only the children who need in-depth professional help would be referred for such help to organisations and agencies that offer counselling and psychological services.

This project believes that a limited period “three years “of skills transfer and mentoring would make the intervention sustainable in the long-term, with clear measurable outcomes, such as the number of lay people running these support groups for children in the community and the number of children who are reached. We believe that schools, for example, could run a programme like this. Once skills transfer has taken place, the school would make minimal use of the expertise of the project staff, until they felt ready to continue independently. The only basic requirement of the person running such groups is care for, and a genuine interest in children as well as the belief that children are able to cope and have their own unique answers to problems and situations. We believe that, in a school, the outcome would be two-fold: the group programme would reach and empower children who are bereaved, but would also make the peer group sensitive to bereavement. A further indirect outcome would be that the staff at the school would feel better able to cope with the children as they have some sort of programme of assistance for these bereaved children.

There are not enough professionals, nor will there ever be, to sustain the kind of change and development our communities and country needs desperately to rewrite the future for our children. We need to look critically at ways in which we can support communities to help themselves.

What can be done
There are a number of good stories available to help you start the conversation about death and dying with a child “titles such as Gentle Willow, by Joyce C. Mills, Badger’s Parting Gifts, by Susan Varley, and The Lion King, by Disney.2 These stories provide you with an opening line to ask children what they think about death and dying. When people believe that they are able to make a difference in their own lives, they reach out to others, who in turn can reach out to more people, and so the circle of influence grows. Love yourself, then someone else and they will likely love someone else in turn. This is the message of hope in the face of this crisis “you and I can make a difference in the life of a bereaved child. Start today by believing in a child's ability to unlock his inner strength with a little love and a lot of support.

Give your support to a project that reaches out to the impoverished communities, and make an indirect difference in the lives of those whom you might not know, but who can certainly use your help. You would be amazed at how little money is really needed to make a difference in the life of a child or family directly affected by AIDS. We are all affected by AIDS in one way or another “the more prepared we are, the better we are able to cope and the more resilient we make our children.

Footnotes
1. See Madorrin, K. 1999. Manual for group intervention with orphaned children. Switzerland: Terres des Hommes.
2. Other useful references:
Oaklander, V. (1998) Windows for our children, The Gestalt Journal Press, New York.
De Vos, AS. (Ed) (1998) Research at grassroots. A primer for the caring professionals. J.L. vanSchaik, Pretoria.

*Rob Smertherham was afflicted with a brain tumour, at the age of 33, which caused him to lose his speech ability and the use of the right side of his body. As a form of therapy he was encouraged to take up painting with his left hand. An exhibition of his art last year raised sufficient funds to launch this project. He died in January 2001 but the sale of cards and prints of his work continues to provide funding.

ChildrenFIRST A journal on issues affecting children and their carers. Vol.4 No.39 October/November 2001

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