HIV/AIDS

Updated 26 June 2014

Mental Health speaking books

Books of Hope uses sound chip technology to create talking books that allow users to hear the text read aloud by a popular local personality.

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“This is fun for children to use, as sometimes you don’t feel like talking to grown ups because it’s depressing, therefore I can listen to the book.” (15-year-old girl)

“This” is a 16-page book – with titles like Caring for Your Household, Suicide Shouldn’t be a Secret and Understanding Mental Health (a guide for you and your family) – being read by children orphaned by AIDS who head households across South Africa.

At least 5 million people are living with HIV/AIDS in South Africa, and The World Health Organisation estimates there are 1,4 million children orphaned by AIDS.

Books of Hope uses sound chip technology to create talking books, containing culturally appropriate graphics, text, and push buttons that allow users to hear the text read aloud by a popular local personality. In the case of Caring for your Household, the children can listen to popular storyteller Nandi Nyembe – a voice they are bound to have heard some time in their lives.

The first part of the book teaches the children who head households – some are as young as 12-years-old - how to get a grant and what documents they need to take with them, for example, in applying for birth or death certificates or the grants.

The second part of the book is to help them care for their siblings, what to do if there is no food in the house and who to turn to in the community. It also teaches them that they have a right to free schooling, and gives them ideas on how to remember their parents.

Doctor Kgosi Letlape, Chair of the South African Medical Association, says about the books: “Animation and cartoons help to break down the barriers of communication and most people feel comfortable with educational material presented in this form. If you can’t understand the words, you can get the meaning from the pictures.”

And it works, as described by the children they were intended for:

“It tells me where to go for help, what to do and encourages me, telling me about school and the food we are short of.”(17-year-old boy)

“This book makes it easy to teach things I need to know (13-year-old girl).

“This book has a message, it can teach many things and how we can cope. (14-year- old girl)

The books are the brainchild of Zane Wilson, head of the South African Depression and Anxiety Group (SADAG) who, during the course of her fieldwork in rural areas, discovered people couldn’t read the pamphlets left behind after workshops dealing with the mental health issues associated with HIV.

The first books were published in 2005 with the financial help of donors, in English and Xhosa and distributed mainly in the Eastern Cape. Zane explains: “This book is meant to stay in the house where the children are living and be a constant help and guidance to them. These children would then not feel so devastated and alone,” she says.

These books are distributed free of charge through government clinics and non-profit and faith-based organisations.

The book dealing with suicide came about as a result of the large numbers of teen suicides each year, and is handed out in schools, where are often an insufficient number of staff trained to teach life skills.

Actress Lillian Dube lends her voice to the book which offers teenagers help in recognizing the symptoms of depression, identify the feelings associated with suicide, gives them advice on where to go for help and how to help a friend in need. Children who’ve received the book have been encouraged. “This book has a message, it can teach us many things, and how to cope.” (14-year-old girl, in Free State Province)

Home-based care workers who work with these children also responded enthusiastically to the books:

“The children feel comfortable and feel happy when I opened it and I asked them to listen carefully,” said one care worker.

“Explanations are simple, not complicated. I think that everybody, even people from rural areas can understand. They like most of the voice of Nandi and they are very surprised of the book which have told them to looking after themselves,” said another.

About six to eight thousand people commit suicide in South Africa every year, according to a study on suicide done by Professor Lourens Schlebusch of the Department of Behavioural Medicine at the Nelson R. Mandela School of Medicine, University of Natal. The statistics from the study show on average 9% of deaths in young people, especially black youth, in South Africa are due to suicide.

Some of the reasons given for teenage suicide are poor academic performance or failure, stress, incest or psychological disorders like depression, showing there’s a definite place for a book tackling the topic in language that South African teenagers can understand.

The book dealing with mental health was published in English and Zulu and distributed for use in rural clinics and homes. It tackles complicated subjects such as bipolar, schizophrenia and panic disorders – topics that are often misunderstood and where talking about them is a big taboo in black communities.

Since then, others books dealing with other health topics like malaria, tuberculosis, vaccines, substance-abuse have been published in other languages and won SADAG the silver medal this year for World Health Literacy Innovation.

Researchers have found that while financial and material needs of orphans are usually presented as the most pressing, their emotional needs are often neglected. This was clearly expressed by Apiwe, aged 13, at the National Children’s Forum on HIV/AIDS held in South Africa in 2001.

“My sister is six-years-old. There are no grown-ups living with us. I need a bathroom tap and clothes and shoes. And water also, inside the house. But especially, somebody to tuck me and my sister in at night-time,” she said.

It is not orphanhood that impacts on the mental health of these children, but the way that society and government work with parentless children, says Beth Mills, deputy director in the AIDS and Society Research Unit at the University of Cape Town.

“There’s a stigma attached to HIV and this stigma is compounded when children are left parentless due to HIV. This may inhibit community responses to parentless children,” she says.

The South African government has one of the most extensive social welfare programs on the continent, and yet the demand for government assistance outweighs the state's capacity to respond accordingly. Child headed households fall through the social assistance gap because the grants for caring for other children are allocated to adults, usually foster care grants.

The burden of taking care of AIDS orphans and other vulnerable children has been taken up mostly by N.G.O.’s and faith-based organisations who are doing an admirable job. But meeting the emotional needs of these children comes a distant second with the urgent need to meet their material needs.

Mills says: “If you look at mental health, you also be looking at giving the children an opportunity to receive emotional support in addition to material support. Social workers are a critical resource here, along with lay counsellors. Children may need to be given the opportunity to debrief, and be reassured that there are adults in their world who can care for them, as they are caring for other children in their households.”

(Vida Li Sik for Health24, November 2008)

 

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HIV/Aids expert

Dr Sindisiwe van Zyl qualified at the University of Pretoria before working for an HIV/AIDS NPO in Soweto for many years. She was named one of the Mail & Guardian's Top 200 Young South Africans in 2012.

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