The handbook, developed through the EU funded project ‘Development of Palliative Care Services in the Republic of Serbia’ implemented through a consortium led by Oxford Policy Management, was published and distributed at the project conference ‘Palliative Care – From Philosophy to Practice’ held on Friday 10th October 2014 at the Metropol Hotel in Belgrade.
The need for palliative care in children was first highlighted following results of a situational analysis for children’s palliative care undertaken by the project team back in 2011. Serbia has a well established free health care system for children up to the age of 19, with highly skilled health care professionals. However, the analysis identified a gap in the provision of children’s palliative care, noting that although the rate of life-limiting illnesses in children was not known, at least 30% of malignancies in children were not treatable. The National Strategy for Palliative Care in Serbia (2009) sets out the need for palliative care for both adults and children, and following the situational analysis, the Ministry of Health confirmed their commitment to the development of palliative care services for children across the country.
Since then, training has been provided on children’s palliative care, for a total of 77 participants which included 28 doctors and 35 nurses. The training on the principles and philosophy of children’s palliative care covered aspects which included childhood development and play, pain and symptom management, communication and breaking bad news, spiritual care, grief and bereavement and caring for the caregivers. For the majority of participants, whilst the content and format of the training was new and challenging, they appreciated it and have since been able to make changes to, and enhance their practice. For example, one participant noted:
“After this course, I started to make some changes on the ward – to allow authority for families to spend more time with their sick child”.
The training was provided in conjunction with the International Children’s Palliative Care Network (ICPCN), and the ICPCNs elearning programme on the assessment and management of pain in children which is also available in Serbian (www.elearnicpcn.org). One of the challenges that participants noted was the lack of information and materials on children’s palliative care in their language, thus the project team set out to utilise and translate existing materials from the elearning programme, and the training materials to develop the handbook on children’s palliative care. It is hoped that the handbook, published in conjunction with ICPCN, will provide a useful resource to practitioners working with children with life-limiting illnesses and will enable them to change and improve their practice.
Prof Julia Downing is the Team Leader and Palliative Care Expert for the Development of Palliative Care Services in the Republic of Serbia. She is also the Director of Research and Education for the ICPCN.