Skip to main content

Table 3 Questions used in young patients' focus group

From: Young patients', parents', and survivors' communication preferences in paediatric oncology: Results of online focus groups

Day 1

Please think back to the consultation in which you were first informed about your illness and treatment. Who told you this? Who were with you when you heard the news? What did you like about that conversation? About which aspects were you less satisfied? What would you've rather done differently?

Day 2

There is a law, which states that ill children should know exactly what's wrong with them and what could be done about it. We'd like to know your opinion about this. Do you like to talk to doctors yourself or do you prefer your parents to do the talking? You may also don't like to be present at all during important consultations, but rather hear everything from your parents afterwards.

Day 3

The law also says that your parents and the doctor will decide what's best for you until you're 12 years old. Do you think that children are also able to make decisions about their treatment or about the way in which certain examinations should be performed? Can you give an example of things you do or you don't want to make decisions about?

Day 4

You've probably talked to quite a few doctors and nurses since you've been ill. Does it matter who you talk to? Which things do you prefer to discuss with your doctor? Which things would you rather discuss with a nurse? If you'd have to explain to doctors and nurses what they should keep in mind when talking with children about their illness or treatment, what would you suggest?

Day 5

Even when you're very ill, you don't have to be in the hospital all the time. Doctors think it's very important for ill children to be at home and go to school as much as possible. That may be difficult sometimes, because you and your parents have to keep in mind many things, such as your medicines, food, and things you can and cannot do. We'd like to know how you handle these things. Do you have to think about these things yourself or do you leave those things to your parents?