In October 2010 The UK Department of International Development (DFID) approved a proposal submitted by Help the Hospices to work with ICPCN to improve access to palliative care for children with HIV/AIDS in Malawi and the Maharashtra District of India, over a five year period. The ICPCN is acting as the co-ordinating body to enhance support in the development of children’s palliative care programmes in these two countries.
The Midterm Review of the Two Country Project is now available to download:
Why did ICPCN become involved in this project?
HIV/AIDS continues to have a staggering impact on children. UNAIDS estimates that there are over 2.1 million children under the age of 15 living with HIV/AIDS, the majority of whom were infected by vertical transmission of the virus from parent to child. All told, over 280,000 children die of AIDS each year, and in some countries the epidemic accounts for as many as half of all deaths among children under five.
The palliative care approach responds to the holistic needs of these children living with a life-threatening illness such as HIV and AIDS, to relieve suffering and ensure quality of life and to address their physical, psychological, social, and spiritual needs.
What is the need?
The worldwide response to the paediatric AIDS epidemic lags far behind international commitments. Mothers and children impacted by the epidemic continue to face widespread scarcity of prevention and treatment services, particularly in countries with the highest burdens of maternal and paediatric HIV infection. This is unacceptable when there is treatment available that can prevent HIV transmission from mother to child. In 2007, approximately one million HIV positive pregnant women gave birth without access to these services worldwide and nearly 400,000 infants were born HIV-positive. There were nearly two million children under the age of 15 living with HIV at the end of 2007, the vast majority of whom were infected through vertical transmission from their mothers.
Treatment options for children have expanded, and the number of children on antiretroviral therapy (ART) has increased rapidly, from 75,000 children in 2005 to 198,000 children in 2007. However, the majority of children on treatment are over the age of four, and 50% of HIV-infected infants die before their second birthday. (Global AIDS Alliance: Empowering Health Workers with new Technologies to End Paediatric HIV/AIDS. April 2009).
Most children living with HIV and AIDS live in resource-poor countries and in poverty. Diagnosis, treatment and care support is often difficult to access as services are far from the child’s home and the family may not have the financial resources for transport. Effective care for children maintains them in their homes and communities, is family-centred and provides ongoing support. Two-thirds of all people infected with HIV live in sub-Saharan Africa.
Palliative care can be provided alongside anti-retroviral therapy to improve compliance to the drugs and ensure that the child is cared for holistically. Whilst the need for palliative care for every child with a life-limiting or life-threatening condition such as HIV/AIDS, cancer, neuro-degenerative conditions and severe disabilities is great, services providing palliative care to these children are largely situated in developed countries.
The Maharashtra District of India
Why were Malawi and India chosen?
Malawi and the Maharashtra District of India were chosen for this project because while both have a high HIV prevalence rate and infant mortality rate, they also have existing paediatric palliative care programmes which can be strengthened and expanded and national palliative care associations willing to support the process. The sites chosen for the project are the Umodzi project at Queen Elizabeth Central Hospital in Blantyre, Malawi, and the Tata Memorial Hospital in the Maharashtra District of India.
930 000 people living with HIV /AIDS
11,9 % incidence of HIV
91 000 children living with HIV/AIDS
7th lowest GDP per head
14th lowest on the human development index 43.7
High Infant mortality of 89.4
India – Maharashtra district
2.4 million living with HIV/AIDS
55 506 children with HIV/AIDS
The 4th highest incidence of HIV/AIDS in India
Long Term Goals
Through the introduction of this project in Malawi and India, the ICPCN is looking to achieve the following long term goals:
- To strengthen existing palliative care services for children.
- To develop palliative care services for children through integration into at least three existing projects and organisations in each country.
- To integrate palliative care policies for children into national palliative care associations.
- To improve access to HAART, palliative care drugs and pain medication for children.
- To advocate for the expansion of palliative care for children and its integration into government policies and national, regional and local health care systems.
- To educate health care practitioners in paediatric palliative care using a curriculum appropriate for developing countries.
- To develop materials on children’s palliative care in local languages.
- To foster and protect the rights of children to life, education and sound health
Description of what the project will do and achieve:
- Advocacy to expand palliative care for children and integrate it into health systems.
- Strengthening of existing palliative care for children in both countries.
- Education of health care practitioners using a new curriculum for developing countries.
- Support to development through ICPCN.
- Virtual Children’s Palliative Care resource for all developing programmes.
- Development of in-country materials in local languages.
- M&E and write up of development for use in other countries.
- In-country coordinators.
- Protection of the rights of children to life, education and health.
- Support for women and girls caring for children.
- Involvement of men and boys in Children’s Palliative Care.
- Advocacy at global level through ICPCN with WHO, UNICEF, and other major stake-holders.
- Strengthen partnerships and the international and regional networks through ICPCN.
- Involve civil society organizations in each country in development and advocacy, and supporting government policy.
- Indication of the impact the project will have on the beneficiaries (i.e. children).
- Improve access to ART, palliative care and palliative care drugs.
- Improve life-expectancy and quality of life.
- Treatment by professionals trained in Children’s Palliative Care.
- Relieve pain and suffering
- Protect children’s rights
Historic meeting of leads from both Malawi and India held in Cardiff in July 2012
On Thursday 12 July 2012 an historic meeting was held in Cardiff when the leads from both the DFID 2 country project met together with Kate North from Help the Hospices and Joan Marston from ICPCN.
This was the first time the leads from each country had been given the opportunity to meet and compare both the progress and the challenges faced in their respective countries. During the Cardiff 2012 PPC Conference representatives from both countries were given the opportunity to share news on children’s palliative care from their regions with delegates. Dr Pradnya Talawadeker was a plenary speaker and gave delegates a fascinating insight into the unique challenges and opportunities facing CPC practitioners in India.
Seated from left to right are: Mrs Jean Tauzie (Malawi); Dr Maryann Muckaden (TATA Memorial Hospital in India and ICPCN Board Trustee); Kate North (Help the Hospices); Lameck Thambo (Director of PACAM); Dr Pradnya Talawadeker (India) and Joan Marston (ICPCN Chief Executive)