Compiled by Hema Somai (Children’s Rights Centre)
Best wishes to all our Friends for 2012! It has been a year of success and we look forward to increasing those achievements this year.
Children’s Rights Centre distributed 1076 My Living Positively Handbooks and the Helping Children Living with HIV booklets between October and November 2011 in English, isiZulu and isiXhosa languages. This is a significant achievement which confirms the value these books have for children living with HIV and AIDS.
A few copies were requested by the Southern African Clothing and Textile Workers' Union who distributed at a conference these at their ARV Programme for Pediatrics[j1] in Durban in the KwaZulu-Natal Province. Lesedi Educare requested 300 each of the Handbooks and Adult Guides in English in November 2011which they shared with children attending the Pelonomi Hospital’s Tswelopele HIV/AIDS Clinic in the Free State. In 2009/1010 this organisation ordered 1000 of the My Living Positively Handbooks for use in the same clinic. They reported that our books were welcomed by the doctors and children alike, therefore prompting the request for the second consignment.
We also shared 550 copies each of the books with eMpathy Trust, Southern Africa located in the province of KwaZulu-Natal, who used the books for information sharing. This province continues to have the highest HIV prevalence rate in South Africa and high levels of infant mortality. Linzi Rabinowitz from eMpathy Trust praised they My Living Positively Handbook by saying: “eMpathyTrust has mostly worked in schools, but more and more our work seems to be extending to home/health care workers in communities so your book is an invaluable resource! Many thanks”.
Three hundred and fifty copies of the books were distributed to the Desmond Tutu HIV Foundation located in Cape Town in the province of the Western Cape. This was the second time this organisation requested these books, having reported that “...the children loved them”.
Two hundred books were distributed to the Red Cross War Memorial Children's Hospital in Cape Town, Western Cape province. These books will be used for information sharing and distribution to the children living with HIV and AIDS.
Sinikithemba is the McCord Hospital’s HIV care programme, located in Durban in KwaZulu-Natal. One hundred copies of My Living Positively Handbooks and Guides were distributed for information sharing purposes and use by their pediatric clinic.
Sixty copies of the Handbook were shared with The National Association of Child Care Workers distribute for information sharing in November 2011.
Sixty copies were also shared with an orphanage located in the Limpopo Province by organisation Keep the Dream.
We hope that in the coming months to distribute our books to more organisations in all of the 9 provinces in South Africa, to ensure that children living with HIV and AIDS have their right to treatment, care and support fulfilled.
[j1]Conference?
Created by Hema Somai, Children’s Rights Centre (Global Giving Project Leader)
We are so excited to have finally reprinted 3 000 copies of our English My Living Positively Handbook! Thank you to all the individuals and organisations that gave so selflessly to this project to ensure that children living with HIV and AIDS would have a book they could call their own to help them understand what it means to be HIV-positive. We are also reprinting the English Adult Guide, Helping Children Living with HIV, which is a companion booklet for caregivers and adults living and working with children who are HIV positive, and hope to have these available before the end of October 2011.
Since reprinting the English Handbook in September, we have distributed copies to the Waterberg Welfare Society, a non-profit organization based in the province of Limpopo in South Africa. In Limpopo the HIV-prevalence rate among women attending antenatal clinics (15-49 years) in 2008 was 20.7%. The prevalence rate of children aged 2-14 years was 3.9% in 2008. Almost 1 out of every 5 children in Limpopo has lost one or both biological parents.
The Waterberg Welfare Society is running a HIV clinic in the area of Vaalwater, and wants to start a support group for paediatric HIV patients - which would likely be the first paediatric HIV support group in the Limpopo region. The Managing Director of the Organisation contacted us because she and the clinic counsellors believe that the ‘My Living Positively Handbook’ would be a great platform to start a support group for their Stepping Forward Program. This program is their community outreach program promoting education and testing for HIV. They also have an adult support group, but are eager to start one for children and adolescents. We are very enthusiastic to support and guide Waterberg Welfare Society as they embark on this new project and hope to report on their progress in the coming months. To read more about this organisation and the work they do visit http://www.waterbergwelfaresociety.org.za
Towards the end of September our organisation, Children’s Rights Centre in partnership with the National Department of Health, Child and Youth Directorate and the many other stakeholders who, because of their determination to address the challenges of HIV status disclosure to children, took the first steps to begin formulating National HIV and AIDS Disclosure Guidelines for Children. During 2010 we investigated the issue of HIV and AIDS disclosure, and one of the recommendations from this exercise was the pressing need for the development and implementation of a national framework on disclosure that could serve as a basic guideline for disclosure practice across a variety of contexts. Most commonly, paediatric disclosure issues are addressed as part of healthcare guidelines that deal broadly with treatment, care and support of children living with HIV. However, there is no definitive stand-alone resource dealing exclusively with the challenges of HIV-status disclosure to children of all ages, including adolescents, and which deals with different contexts and specialised considerations for example, disability, abuse, and so on.
We are glad to say that the meeting was a success, and the National Government Departments together with civil society organisations have paved a way forward in terms of the development of these guidelines. A task team has been set up comprising of National Department of Health, Children’s Rights Centre and Witswaterand Paediatric HIV Clinics.
Another exciting development has been the launch of the Clearinghouse for HIV and AIDS disclosure for children. This is a unique worldwide resource centre on HIV and AIDS disclosure materials, resources and information for parents, caregivers and health care professionals working with children around HIV and AIDS disclosure. The clearinghouse also contains examples of tools that illustrate useful practices, links to websites, and other resources that provide further information on issues related to HIV and AIDS disclosure. In addition to this wonderful new website, we have also launched the Disclosure mailing list, which allows us to communicate with people who are interested in learning more about what materials and resources are out there to support the disclosure process. To learn more about the Clearinghouse please visit http://www.hivaidsdisclosure.co.za.
Links:
By Hema Somai, Edited by Sunitha Eshwarlall
Towards the later part of 2011, we were approached by an organisation in Zambia, CIRDZ (The Centre for Infectious Disease and Research), which supports the Zambian Ministry of Health in their ARV scale up programme in four provinces of Zambia. They wanted to reprint My Living Positively Handbooks, to increase the involvement and awareness of HIV positive children in Zambia to HIV support groups and kids clinic rooms.
Zambia is reported to have one of the most devastating HIV and AIDS epidemics in the world (AVERT, 2010). It is reported that more than one in every seven adults in the country are living with HIV and AIDS. The epidemic has been particularly harsh on children in Zambia. In 2010 it was reported there were 120,000 children living with HIV and AIDS (AVERT, 2010). Furthermore, in 2009 it was estimated that of the 690,000 children that were orphaned, HIV and AIDS was responsible for contributing to more than half of that number. The rate of child sexual abuse increased rapidly over the recent years. In 2003 child rape was being fueled by the ‘virgin cure myth’ (which wrongfully claims that sex with a virgin can cure HIV and AIDS). The prevention of mother to child transmission programme began in 1999 and by the end of 2009 69% of expectant pregnant women living with HIV and AIDS were receiving treatment.
Understanding the situation of HIV and AIDS in Zambia and it’s particularly devastating effects on children and families made us very excited when the request came through. We were extremely eager at this prospect as well as knowing that the Handbook was seen as a valuable resource for children beyond South African borders. At the beginning of May 2011, we were informed by our colleagues in Zambia that they indeed printed 25 000 copies of the handbook! What an astounding accomplishment. The distribution of the handbooks began immediately following the printing to children attending HIV support groups. CIRDZ has also trained pediatric support workers on how to use the book themselves and how to show caregivers how to use the book as well. Having developed this relationship with CIRDZ has enabled us to understand that the HIV and AIDS epidemic is quite different in the various African countries across the continent however the similarities are stark in the way it has affected the lives of children and families.
References:
AVERT 2010. HIV and AIDS in Zambia. (http://www.avert.org/aids-zambia.htm)
