An estimated 4000 children and young people are living in Norway with health conditions that are life-shortening or life-threatening — and the number is rising. The Norwegian Association for Children’s Palliative Care (Foreningen for Barnepalliasjon – FFB ) is the leading non-profit organisation in the Nordic region, working for children’s palliative care and that speaks out for all children and young people who are expected to have short lives. Together with everyone who provides care and support to these children and families, we are here to help them have as fulfilling lives as possible and the very best care at the end of life. We can’t change the diagnosis, but we can help children and families make the most of their time together. The organisation is also supporting all the professionals across Norway. By working together with professionals, we provide a strong and unified voice, and help by contributing knowledge and relevant information and by providing courses and lectures in children’s palliative care. Children with life-limiting and life-threatening diseases and their families have many and complex needs and need services from a wide range of professionals. Children’s Palliative Care is a new field in Norway, which is reflected in the fact that there are few courses in the field and very limited literature available in Norwegian.
The Norwegian Association for Children’s Palliative Care received funding from The Norwegian Directorate of Health in 2015 for the translation of the “Oxford Textbook of Palliative Care for Children”. By translating this book, we have provided a foundation and easy access to the most relevant information on children’s palliative care for all Norwegians who want to learn more.
In the Norwegian language, the book is entitled: “The foundation of Children’s Palliative care”. It has 512 pages and 40 chapters that provide a broad introduction to key topics and issues in the field. The book provides knowledge and discusses the medical, psychological, practical and spiritual issues that arise in the care of children with life-threatening and life-limiting illnesses and their families. The book deals with the physical treatment of symptoms, communication techniques and mental issues such as feelings of guilt and isolation. The authors of the book are among the world’s foremost in their field.
The Norwegian Association for Children’s Palliative Care entered into a partnership with the municipal publishing agency for the translation and publication of the book. After an intense year of work, the book was published in October 2016. In December 2016, Natasha Pedersen from FFB and editor Ingunn Berling Fridheim and chief editor Bjørn Simonsen from the publishing agency met with the Ministry of Health and Care Services. Natasha Pedersen emphasised that seriously ill children challenge us in the most fundamental way as humans, both emotionally and cognitively.
“For many of these children and young people, time is what they have the least of. Therefore, they rely on being met with the best knowledge and practice we have to offer,” says Pedersen. She describes the book as providing the minimum knowledge needed for those who work with this group of patients.
Bjørn Simonsen described the demanding work process needed to translate the book, but also said that this has largely been a Con Amore (with love) project for all those within the editorial and association.
The minister, Kjos and Pedersen agreed that competence is what matters most in order to provide the best quality of life for these children. In conclusion, the Minister gave thanks for the important task they have completed and expressed his hope that all those who work with children with life-threatening and life-threatening conditions who would benefit from palliative care, would read the book from the first page to the last.
The book is also now included in several educational courses as a required book and can be bought through the organisation and found in all bookshops in Norway.