Young-NORDIC-Pal network researches and develops palliative care for Nordic children and young adults

It is important to research and advance palliative care for children and young adults, as it can last for years. Despite the high standards of welfare in Nordic countries, palliative care for younger populations has not received as much attention as it has for adults. The Young-NORDIC-Pal network is dedicated to advancing palliative care for children, adolescents, and young adults in the Nordic countries.  

This network aims to bridge this gap by promoting research and raising awareness about the holistic and quality of life palliative care needs of these young patients and their families. Turku University of Applied Sciences’ Advancing Supportive Cancer and Palliative Care (CARE) research group collaborates with the network, focusing on both national and international research and development in cancer treatment and palliative care.

The purpose of palliative care for children is to prevent or alleviate suffering and to nurture their quality of life. All family members, including parents, siblings and grandparents, are considered individually in the care, respecting their culture. As a part of palliative care, end-of-life care is provided when death is expected within days, weeks, or months. Its purpose is to support and care for the dying child and their loved ones in the best possible way and to prepare them for the approaching death. (Mielenterveystalo.fi n.a.)

Although the Nordic countries are among the welfare countries, the palliative care of children and young adults has received less attention than adults.

A wide range of childhood health problems can create a need for palliative care, such as advanced non-communicable diseases (cancer) or severe congenital traumas and injuries.  Globally, access to palliative care and symptom relief is very rare in many countries and millions of vulnerable children worldwide suffer unnecessarily every year. (WHO 2018).

The Nordic countries are home to a total of around six million children and young adults between the ages of 0 and 19, of whom over 40,000 are estimated to be a life-limiting or life-threatening disease or condition (Winger et al. 2024). Although the Nordic countries are among the welfare countries, the palliative care of children and young adults has received less attention than adults. There was a need for co-operation.

The story of Young-NORDIC-Pal network

In the autumn of 2023, researchers from the palliative care of children in Norway, Sweden and Denmark met for the first time. They set up a group that initially aimed to map the state of palliative care for children in Scandinavia. At its first meetings, the group stated that, in addition to children, the state of palliative care should also be considered for young people and young adults and from the perspective of all Nordic countries.

In the spring of 2024, researchers from Iceland and Finland joined the group. As a result of the collaboration, the research group published an article in the spring of 2024 that explored the state of palliative care for children, adolescents and young adults in the Nordic countries. As a result, three key areas were identified for Nordic research (Winger et al. 2024):

• Palliative care needs of children, adolescents and young adults and their families
• Palliative Care Education and Teaching at Different Levels
• Palliative care models, transitions and different care environments

In September 2024, a group of researchers met at a meeting organized by the University of Oslo Metropolitan in Norway. As a result of the meeting, an eleven-member Young-NORDIC-Pal network was established. The purpose of the network is to promote research into palliative care for children, adolescents and young adults aged 0 to 25 years in the Nordic countries, and the aim is to raise awareness of their and their families’ holistic and quality of life palliative care.

Co-operation with the CARE research group

Turku University of Applied Sciences’ Advancing Supportive Cancer and Palliative Care (CARE) research group is collaborating with the Young-NORDIC-Pal network. The CARE research group has special interest in national and international research and development cooperation in the whole continuum not only of cancer treatment but also palliative care, combining clinical research and the development of special expertise. (Turku AMK 2024.)

Photo: Young-NORDIC-Pal network from left Heidi Hollmen (Oslo Metropolitan University, Norway), Charlotte Castor (Lund University, Sweden), Oddný Kristinsdóttir (Landspitali University Hospital of Iceland, Iceland), Johanna Kero (CARE research group Turku UAS, Finland), Ásta Bjarney Pétursdóttir (University of Iceland, Iceland), Anette Winger (Oslo Metropolitan University, Norway), Camilla Charlotte Lykke (Copenhagen University Hospital, Denmark), Mette Asbjørn Neergaard (Aarhus University, Denmark).

The network also includes Marika Grönroos (Turku University Hospital, Finland), Malin Lövgren (Marie Cederschiöld University, Sweden) and Dröfn Birgisdóttir (Lund University, Sweden)

 

Author

Johanna Kero, Senior Lecturer, MNSc, PhD candidate
Turku UAS