Table 4 Reasons given for the respective answer: contact desired yes/no.

Contact to other affected persons …
Category	Typical comment
Is desired because:
Hear about other experiences/exchange	“Would like to hear about othersʼ experience with it and how they deal with it”
More information	“Want to find out more about this disease”
Is not desired because:
Not felt to be necessary	“I can deal with it quite well”
Contact experienced as stressful	“Contact would be too stressful, real.”
Do not want to think about diagnosis	Partly try not to think about it”