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Strengthening palliative care for children in Jakarta

Author: Joan Marston, Sue Boucher
11 December 2012

Joan Marston, Chief Executive of ICPCN spent the last seven days in Jakarta, Indonesia at the invitation of Lynna Chandra, founder of Rachel House, to assist in raising awareness of the need for palliative care for children in this country.

Indonesia has a population of 242.3 million and Jakarta, capital of Indonesia, is South-East Asia’s largest city with a population approaching 12 million. In 2011 as many as 5,555 women and babies were identified to be living with HIV and AIDS in the city. Stigma and lack of knowledge means that at present only 5 to 10 % of people living with HIV (PLWH) are being diagnosed. To encourage people to be tested and treated, the Jakarta Health Authority has launched a free service for all medical care related to HIV and AIDS for residents of Jakarta in community health centres and hospitals.

At present there is only one home care programme providing palliative care for children with cancer and advanced HIV. Rachel House children’s hospice has been providing care at home to children nearing the end of life, with both cancer and HIV, for three years. Five nurses, travelling on extremely busy roads by motorcycle, cover the four regions of Jakarta caring for very sick children and supporting their families, with compassion and expertise.

Joan Marston, chief executive of the ICPCN, was invited to Jakarta by Lynna Chandra, founder of Rachel House, to assist in raising awareness of the need for palliative care for children, and especially for children with HIV. Joan visited two families living in very poor circumstances, each with a very ill little boy suffering from severe malnutrition, opportunistic infections and pain, and observing the emotional pain of the families. "It felt like I had gone back in time to the terrible early days of the HIV epidemic in South Africa," she said afterwards.

Joan spoke at the inaugural meeting of a network of organizations caring for children with HIV, arranged very successfully by Rachel House and reports that presentations on the need for palliative care for children with HIV elicited very positive responses from those attending. Further presentations at the RSUD Tarakan Public Hospital in West Jakarta, the RSPI Sulianti Saroso National Infectious Diseases Hospital, and the Clinical Research Meeting of the Indonesian Association of Physicians in AIDS Care provided an opportunity to stimulate interest in palliative care for children, as well as in the community care model of Rachel House. 

The model of home care developed by Rachel House could become a model for Indonesia where the rising HIV numbers will call for a strengthening of the community response. Dr Edi Tenuteru, a member of the ICPCN and a paediatric oncologist who is a supporter of Rachel House and a strong advocate for palliative care for children in Indonesia, met with Joan and described a successful project he has initiated to train people in his church in palliative care.

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