The International Children’s Palliative Care Network (ICPCN) believes that the provision of paediatric palliative care is the right of all HIV infected and affected children around the word. The ICPCN notes the following with concern:

• Around the world approximately 2.5 million children are living with HIV
• There have been over 530 000 new infections in the past year, mostly through mother-to-child transmission, and 380 000 deaths.
• Without treatment 45% of these children will die before their first birthday, most in the first six months, and over 50% will die before they are 2 years of age.
• A large percentage of these children live in sub-Saharan Africa.
• Whilst the availability of anti-retroviral therapy is increasing in the developing world, and adherence to treatment can make HIV infection a chronic condition, at present only an estimated 28 % of children requiring ARVs actually receive these, and in many poor and middle-income countries this is as low as 10%.
• 15 million bereaved children have lost either one or both parents to AIDS, and need support in dealing with grief associated with this important loss in their lives.

Children with HIV infection and AIDS, even when on anti-retroviral therapy, often suffer from pain and other distressing symptoms; which is compounded by emotional and spiritual distress. Paediatric palliative care encompasses both the child and the child’s family and provides holistic care of the body, mind and spirit of a child with any life-threatening, life-limiting or chronic condition.

It should begin at the time of diagnosis and continue alongside any curative treatments. It supports the child and the child’s family through the child’s death and continues into the bereavement period, for as long as it is needed. Its aim is to relieve suffering and to promote the best possible quality of life possible for the child.

This is achieved through an excellent and comprehensive assessment of the needs of the child and the child’s family; the effective management of pain, timely symptom control and emotional, spiritual, intellectual and developmental support by professionals who are trained in children’s palliative care. HIV positive children supported by palliative care programmes are more likely to be identified early, are given access treatment and are supervised when taking ARVs, TB treatment, Co-trimoxazole prohylaxis and other necessary medications and treatments. They and their families are helped to obtain social grants, where these are available, and supported in bereavement where necessary. Where family protection is missing or inadequate, palliative care programmes will ensure safe and supervised placement of the child, support to the guardians or family members, and also promote normal childhood development through access to age and developmentally appropriate education. The ICPCN believes that every child infected or affected by HIV and AIDS has the right to palliative care provided by a multi-disciplinary team of appropriately trained professionals and caregivers.

The ICPCN is committed to promoting palliative care for all children infected and affected by HIV and AIDS through:

• Advocating for palliative care for children worldwide, the development and acquisition of appropriate resources, adequate pain relief and access to suitable pain medication
• Promoting the right of children to receive good health care which includes palliative care
• Promoting education and training in the discipline of children’s palliative care
• Supporting shared-learning experiences

Providing a quality information service To locate a Children’s Hospice or Palliative Care Programme in your region of the world, consult our online register to be found at www.ipcn.org,uk

Contact Information:
Name: Sue Boucher(International Information Officer)
Company: International Children's Palliative Care
Network (ICPCN)
Web: www.icpcn.org.uk
Tel: 087 897 4420
Fax: 031 7657295
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