Lionheart Pediatric Palliative Care Foundation, Sofia
Mapping Pediatric Palliative Care Needs and Resources in Bulgaria
Currently, Bulgaria has no institutionalized pediatric palliative care program and the provision of PC for children in everyday clinical practice is extremely inconsistent to non-existent – even in classic PC settings such as oncology and hematology, neurology, genetics and progressive metabolic disorders and various other end-stage diseases.
Children and families receive hardly any psychological and social support, as well as basic medical help such as pain management, physical and occupational therapy and comfort care and the end of life. Practicing clinicists in the country understand the need for a more structured and institutionalized approach to palliative and hospice care, but are mainly invested in treating treatable illness.
At this point, there is no specialist post-graduate education for palliative care physicians, nor any nationally approved medical standards for long-term care and care at the end of life.
Our project is devised to map pediatric palliative care needs in the country through qualitative and quantitative study, i.e. questionnaires for parents and healthcare professionals, focus groups and in-depth interviews. We intend to involve stakeholders at an early stage as part of an advisory board. Those would be the Bulgarian Long-term and Palliative Care Society, the Bulgarian Pediatrics Association, the Ministries of Health and Social Services.
After analyzing and publishing results, we intend to organize a Round Table on the issues of pediatric palliative care and agree on a systematic approach on how to improve palliative care services for children and families throughout the country.