INTERACTION AROUND FAMILIES WHO HAVE SERIOUSLY ILL CHILDREN - HOW DO WE DO IT?

Today, Nina Bakkefjord, leader of Løvemammaene's child palliation committee, gave a lecture at the regional professional day for child palliation teams in Central Norway. The participants at the professional day were doctors, nurses, social workers and psychologists from Levanger Hospital, Ålesund Hospital, Kristiansund Hospital and St. Olavs Hospital.

The theme was interaction.

The Children's Palliative Care Committee is grateful to be asked to share user experiences and knowledge in such an important forum. The Løvemammaene have worked hard to highlight the need for all families who have children with an expected shortened lifespan to have the opportunity to be associated with a multidisciplinary competence team for child palliation.

Nina shared experiences around this with interaction. Nina's work in Løvemammaene's child palliation project Carry together means that she talks to many families who have seriously ill children and is therefore familiar with user experiences of both a positive and negative nature.

One of the things that Nina wanted to give an insight into is precisely life with seriously ill children. Among other things, she talked about how when doctors and nurses see the families during hospitalization, they only see a tiny part of the families' everyday life. Therefore, it was important for her to start the lecture by giving an insight into a life with medical equipment, an everyday life where having control makes a difference to how the rest of the week, or the month or indeed life turns out for the child, but also for the rest of the family. The responsibility you have to follow up everything around the child, making sure that nothing is missed, doses of medicine are given at the right time, priorities you stand on, how siblings are doing, the bad conscience and unfortunately also all the struggles many families are in. You fight battles because you want so much to be able to have an everyday life that makes it possible to remember good days and laugh when the day comes when the family is left with only memories.

Nina also talked about the part of the interaction that is about the right to get enough relief during hospitalization. The cooperation agreements between hospitals and the municipality/districts are often too unclear. These state that it is up to the hospital to assess the need for accompanying staff/ relief.

When these assessments are to be made, hospital personnel should realize that these assessments entail a great deal of responsibility. The responsibility consists of not taking the assessments based only on the days you see the family in the hospital. These days come on top of everything else.

For the parents, it is completely indifferent who covers the expenses. They must let go of these conflicts. This should be decided by the hospital and municipality at the chamber. The family is also entitled to respite in hospital.

When a family has a decision from their municipality on granted relief, it is because it has precisely been assessed that this family's needs have the scope stated in the decision. Far too many parents convey that they are told by both their municipality and the hospital that it is the other body that will cover the relief. The result is that the families do not get the much-needed break that is absolutely necessary to stand in this over time. These families just need it to be carried together.

Nina raised the concept of trust and that it is important that those who will work around these families reflect on the question:

How should I work to gain your trust in me?

The Løvemammaene are very happy that regional teams are now in place at all the major hospitals and hope that eventually there will be child palliation teams at all hospitals in Norway. 

We have high on our wish list that the new government sees the need to earmark resources for these teams. It does not work to start up teams if they do not have the means to operate properly. These professionals deserve the opportunity to do a good job and the families really need the expertise and good professionals around them. Families with children and young people in palliative care deserve good services regardless of where they live in the country. They don't have that today.