- Want to tell us a little about you and the project?
I am a researcher (professor) and study how we can support families with severe illness where children are involved, either sick children (and their siblings) or children to sick parents. I work at Marie Cederschiöld University and Astrid Lindgren's children's hospital. Next year is 20 years since I started researching and it feels fantastic to have the opportunity to devote their professional life to this. All my research concerns just families with children, some projects are about evaluating support when the child or parent is sick and some parts are about grief. I am involved in various research projects but are currently leading a large research program with several projects (see: https://www.mchs.se/forskning/forskningsprogram/fti---the-family-talk-intervention.html) This research program includes a support intervention with the goal of facilitating communication within the family about what is difficult to talk about (eg forecast), supporting parenthood and visible the needs of the children (sick as healthy). We implement this support method within a number of healthcare contexts; at a children's hospital, children's spice and in cancer care and palliative care for adults who have children or adolescents at home. The goal is to develop evidence -based support methods for these families as there are few. The good thing about this support method is that it involves everyone in the family. In this way, family cooperation is strengthened and everyone's votes are heard. The family gains a greater understanding of each other's feelings and reactions.
- Difficult sick children must have a lot of difficult feelings within them, and perhaps many questions. How do you best meet a child who is in a difficult situation?
With curiosity and interest! Important to keep in mind is not to go in with the notion that sick children have just difficult feelings within them and many questions do not have to be so. In the health care, it is the sick child who is at the center, which means that they often get the attention and care they need. There are several ways to communicate with children (sick as healthy related children), e.g. through image support and to draw and tell. To get children to talk, you can also do something while talking, going for a walk, driving or if the child is younger give them some "talk-clay" or crafts, paper and pen. It is important to talk to children in her/his way, use the words they use and try to see the world with their eyes. You also need to commute between talking about ordinary things and talking about a little more difficult things. It is not possible to focus just on what is difficult. For example, talking about what works well for the child can strengthen her/him so that they can take up what is difficult. At the same time, one should not reverse to take up difficult subjects. Research shows that children are usually initiators to talk about what is difficult. Then we adults have to catch it and ask further. Children should not have to keep difficult things within them (such as thoughts of death), neither sick nor healthy. Adults need to be responsive. This applies to all adults, those who work in health care and adults around the family, neighbors, teachers, leisure leaders, etc. Important to consider as an adult is that we do not have to sit in answers to all the questions that children have. We can say that we do not know (eg what happens after death if that is what the child is thinking about) and instead check the question back to the child- what think they happen after death. In this way, the child gets the opportunity to tell them what they have in mind. Be curious and ask follow -up questions. It becomes extremely painful for children to have to hold their thoughts for the sake of the adult world, because they do not believe we adults can hear. We will signal that we can hear and that we are interested.
- What do you hope will be the outcome of the project?
We want to find a support method/support program that helps all family members to be able to talk about what is difficult, such as forecasts and conflicts within the family, but also support parenthood and make visible the children's needs (sick children and siblings). It is challenging to be a parent of a child who is severely ill or severely ill himself and have younger children. Making the needs of the children is very important for all parties. Sometimes healthy children are forgotten which can cause mental illness in the long run. We hope that our research on this support program can be a method that clinics can use in their daily work.
- Finally, if you have a sick child in your vicinity, what would you give as advice?
To look after the whole family's needs. The sick child is always in a context and therefore it is important to take into account the context to support the child. For the sick child, it can be difficult to have parents and siblings who are often sad and weighted by responsibility. Be open and curious and take your own initiative to support the whole family. It may be to be with the sick child one day so that parents and siblings can do something else, it can also be to cook, push healthy siblings on leisure activities or help with something that the family needs. By being open and responsive to both children's and parents' needs for support, as well as capturing the initiatives children themselves to talk, you will contribute. Stay and listen and are available. The family will not ask for support, you need to take your own initiative to be there, it applies to both children and adults.
