The theme for this year’s World Hospice and Palliative Care Day is Hidden Lives, Hidden Patients. Millions of children in India would benefit from palliative care but fewer than 1% of this very vulnerable population receive it.
Referring to the hidden lives of so many children, particularly those who live in the developing world where access to services is limited, ICPCN’s Chief Executive Joan Marston says, “Access to palliative care for children is poor in many parts of the world. Whilst acknowledging that in some developed countries, children’s palliative care is well developed, in the majority of countries this is not the case. Therefore it is essential that we continue to advocate for the development of children’s palliative care globally.”
Children’s Palliative Care Project
The ‘Children’s Palliative Care (CPC) Project’ of the Indian Association of Palliative Care (IAPC) began its journey in Maharashtra, India, in October 2010, with a view to address the needs of children with life limiting conditions such as HIV/AIDS, cancer, cerebral palsy, thalassemia and other conditions.
The main aim was to create a child friendly environment where children are not threatened with the illness that they face; especially where poverty, illiteracy, superstitious beliefs, gender differences and social stigmatisation may be an integral part of their every-day life. It aimed to set up three model sites providing Children’s Palliative Care in Maharashtra, and during the development of the site at Jawhar, we identified around 100 children with cerebral palsy (CP). In some families there was more than one child suffering with the same condition.
Palliative care provision for the children with CP has included physiotherapy, the use of communication devices, bracing, speech therapy, medication to relieve painful muscles, and counselling. Some of the lessons learnt in the provision of palliative care for children with CP include the need for a multidisciplinary team, with a physiotherapist, occupational therapist and speech therapists being core members of the team. The need for support groups to empower carers and networking with the government to provide essential services.
The need for palliative care for the large number of children in India with CP is great and steps are being made to extend such service provision to other parts of the country.
This article was first published as a case study in the report: Hidden Lives, Hidden Patients, commissioned for World Hospice and Palliative Care Day 2015. The report can be found on the Worldwide Hospice Palliative Care Alliance website and will be officially launched on 10 October 2015 as part of the World Hospice and Palliative Care Day celebrations. To find out more or to register an event for the Day, please visit the World Hospice and Palliative Care Day webpage.