On October 24-27 Maruzza Foundation hosted 4th International Congress on Pediatric Palliative Care in Rome, Italy. The congress gathered nearly 400 delegates from over 40 countries. Nino Kiknadze, representative from Open Society Georgia Foundation was awarded for her contribution to development of pediatric palliative care and best short documentary featuring 14 years old Anano, beneficiary of Firefly World, OSGF supported first children’s hospice in Georgia.
The Story of Firefly World and Palliative Care Development in Georgia
On January 17, 2017 the first children’s hospice “Firefly World” was launched in Georgia. The children’s hospice is a family-type facility, which will provide palliative care for children with chronic and incurable illnesses.
The hospice works in three basic directions: 24-hour service for simultaneously 10 children and their parents; daytime center, where children and their parents will stay from morning to evening to receive necessary services; home care service.
Construction of the children’s hospice was launched in October 2015 upon the initiative of Open Society Georgia Foundation, with the initial funding of Evex Medical Corporation as well as with the support of the President’s fund. Since then, hundreds of donors, among them ordinary citizens and business companies, expressed readiness to support the hospice. Over GEL 1 million was raised during a year to build the hospice. The project of children’s hospice is the best example of cooperation between business companies, non-governmental sector, the President, journalists and citizens.
The Tbilisi Children’s Hospice meets the standards of the world’s best hospices. Besides professional and attentive personnel, the environment, interior, name of the hospice and all those details, which largely determine children’s life in the hospice, are extremely important.
The idea of establishing Children’s Hospice has emerged after the survey conducted in 2013, which assessed palliative care needs of children. According to the survey results, annual statistics for children with palliative care need is 839 children from 0 to 18 years old.
Palliative care for children is a care provided to children with incurable and chronic diseases. Palliative care involves the relief of symptoms caused by the disease, as well as provision of psychological and emotional support to children and their families. The need for palliative care arises when dealing with a disease that is resistant to treatment. In children, such diseases may be the last stages of cancer, diabetes, various neurological diseases, severe forms of cerebral palsy and other. Unlike adults, children with need of palliative care require a bit different approach.
The main goal of the hospice is to create a family-type environment. Therefore, in many European countries, hospices are arranged in small, maximum three-story buildings. There are many successful examples of children’s hospices in the world. In this regard, countries with great experiences are the Netherlands, Germany, England, America and Romania. There are hospices, which resemble the house of one of the literary characters or an imaginary universe.
In Georgia, palliative care has been developed and promoted by the Open Society Georgia Foundation since 1999.
Education Officer for ICPCN, Alex Daniels, attended the recent 4th Global Gathering Maruzza Congress on Paediatric Palliative Care held in Rome. She shared the following report back on the congress with ehospice. Read further…