Table 2: A summary of categories and subcategories.

CategoriesSubcategories

Handling of information Winding road to a PAH specialist care team
Usefulness of written information
Lacking information to relatives
Using and avoiding Internet as a source of information and knowledge
The unspoken about the prognosis
Being rational regarding surgical procedures

Struggling with feelings that also affect othersFear of hereditary disease
Feelings of injustice in not being able to have children

Vulnerability associated with uncertaintyFailing healthcare organization
Pondering about why they are affected