Children and Youth as Next of Kin

We always ask if our patients have children or siblings under 18 years old. We ask the patient themselves or the person accompanying them to the hospital, such as a companion or parent. We want to know a bit about how the children are doing.

We do this by asking:

• What are the children's names and ages?
• Where do the children live, and who takes care of them when the patient receives treatment?
• What do the children know about the illness and treatment?

If the children may need information or follow-up, it is common to talk more about:

• How the children are doing.
• What the children need to know more about.
• How the illness affects daily life in the family.
• Who can be resource persons for the children: in the family, neighborhood, or school.

• Conversations with you about the children: What the children have experienced, common reactions, and how you talk together about what is happening. Other topics can be how it is for you to be a parent when the family experiences illness.
• Conversations with the family or the children alone: What the children know, how daily life has changed, if everyone has the information they need, how the family handles the situation, and what will happen next.
• Arranging visits to the hospital for children and young people.
• Information about good places to find knowledge, help, and support.
• Contact and cooperation with other services (e.g., health nurse, school, or others).

• Tell the children about the illness and treatment as early as possible.
• Think about what the children may have noticed, what they know, and what they might be wondering about.
• Talk openly with the children about what is happening. Be honest, use words they understand, and encourage them to ask questions if they are curious.
• Show texts, pictures, or videos that explain the treatment, illness, or show the hospital. Use information from the hospital or good websites.
• Plan how you will stay in touch during a hospital stay (phone/messages/chat or visits to the hospital). Make a list of contact information for the hospital and keep it accessible at home so everyone knows where it is.
• Plan what will happen at home and make lists of regular things like meals, homework, housework, and leisure activities.
• Are there special events in the children's lives that need to be considered, such as birthdays?
• Talk to the children about who will receive information about what is happening, such as family, kindergarten, and school.
• Ask the children who they want to know about the illness and if they want to tell themselves.
• Talk to children and young people about what they can say if someone asks about the illness or treatment.

• Inform the children about the treatment and prognosis. Be honest and specific. We can give advice on how to talk to children. We can also join conversations, alone or with you.
• Talk to us about visits to the hospital and who the contact persons for the children are.
• Agree on how you will stay in touch during treatment.
• Encourage the children to continue with their daily activities.
• Keep in touch with family, kindergarten, and school.
• If you receive serious news: Inform the children after you have had time to react. Involve other adult caregivers and ask healthcare professionals to be present if you wish. Do not wait too long to inform the children.

• Spend time together. Continue with activities you enjoy or find new ones.
• Talk to the children about how the illness and treatment have affected them and the family.
• Tell the children that they can feel and think whatever they want, and that it is okay to be alone or with friends.
• Encourage regular leisure activities.
• Talk about what will happen next with the illness, work, and daily life in the family.
• Discuss the children's tasks at home. Are they appropriate or should they be changed?
• Accept help and support from others for small and large tasks, from family, friends, neighbors, kindergarten, or school.
• Keep in touch with school, kindergarten, and leisure activities about the family's situation and the development of the illness.
• Talk to someone if you are worried about the children.