The 3rd – 7th June 2024 saw the EPEC-Pediatric team (Education in Palliative and End-of-Life Care Pediatrics) teaching children’s palliative care in Prague. The week was organised into a 3-day end-users conference followed by two days of Train the Trainer. The training was organised and funded by Nadace rodiny Vlckovych and the first three days was attended by 101 participants from across the Czech Republic, Slovakia, and Ukraine, with 31 participants attending the Train the Trainer component.
A mutli-disciplinary and cultural team of EPEC-Pediatric trainers was led by Dr. Stefan Friedrichsdorf from the Benioff Children’s Hospitals, University of California in San Francisco (UCSF) and included: Dr Adam Rapoport (Canada), Dr Joe El-Khoury (France/ Lebanon), Dr Alexis Morvant (USA), Dr Diana McIntosh (UK) Dr Jonathan Downie (UK), Kristen Campbell (USA), Dr Tom McNalley (USA) Stacey Remke (USA), Dr Kateřina Trková (Czech Republic), Dr Lucie Hrdličková (Czech Republic) and Prof Julia Downing (ICPCN).
Ivana Plechatá
The conference was opened by the Director of the Foundation Ivana Plechatá, Václav Pláteník Deputy minister of Health and Dr Stefan Friedrichsdorf. Quality education and the exchange of experience has tremendous power and contributes to improving care for families with seriously ill children. The training covered a wide range of topics including what is paediatric palliative care and why do we need it, addressing hope at times of clinical uncertainty, assessment and management of pain and other symptoms, grief and bereavement, children’s development, integrative medicine, communication and planning in children with serious illness.
The Train the Trainers session had a different focus, looking at different ways that we can teach palliative care including utilising the EPEC-Pediatric framework of attitude, knowledge and skills, interactive lectures, small group discussion, case study and role play. These were demonstrated through sessions around psychosocial issues, family centred care, team collaboration, caring for the imminently dying child and their family, communication and planning.
Throughout the training the participants were full of energy, having fun with each other and with the international experts. It was great to see how participants from different professions shared their experiences – doctors, nurses, social workers, psychologists, therapists, chaplains and many other professionals. Everyone there was committed to developing children’s palliative care in the Czech Republic, Slovakia and Ukraine. The course took place at Vienna House by Wyndham Andel’s Prague, who took excellent care of everyone. The team of facilitators found a way of making the training stimulating, exciting, interesting, interactive and focused on implementation – what we can do, what difference we can make. At time the participants were divided into six breakout rooms, thus giving the opportunity for small group work, case studies, role play etc, whilst also having the plenary sessions altogether.
The Foundation commented: “We are very happy about the recent EPEC-Pediatrics course and we will write even more about it. For example, we will bring a story about young paediatric nurses and their motivation to do this job, the story of women who came to the course from Ukraine and were totally excited about it, and other observations and experiences we had this week at the Vienna House by Wyndham Andel’s Prague, where the course was taking place and where they took excellent care of us. We thank everyone who experienced this amazing event with us, and we look forward to further cooperation!”
The Nadace rodiny Vlckovych was founded by Katarína and Ondřej Vlček to develop children’s palliative care in the Czech Republic and build a network of services that reflect the needs of families caring for a child with a serious illness. They estimate that approximately 15,000 families in the Czech Republic need palliative care and are committed to enabling all children and families in the republic to have access to the palliative care that they need. They are also in the process of building a children’s hospice in Prague at Cibulka. The Cibulka homestead dates back to the 14th Century and the foundation are transforming the ruin into a children’s hospice due to open in 2026.
During the training, the Foundation took the opportunity of interviewing each of the facilitators. These are still be written up and the films developed and released but some of them can be found here, and more will follow:
- Interview with Dr Stefan Friedrichsdorf
- Interview with Dr Adam Rapoport
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