Table 2.

Questions guide.

Investigated Theme	Questions
Experience with the illness	What is your experience and perspective of Rett syndrome?
Management of health resources	How do you manage your child’s symptoms? What care needs does your child have? How do you access health services? What barriers and/or facilitators have you encountered? What aspect was most relevant for you?
Management of social resources	What social needs does your child have? How do you access social services and community support? What barriers and/or facilitators have you encountered? What aspect was most relevant for you?
Impact on the family	How did the illness influence your family life and the relationship with the family members? What aspect was most relevant for you? What is your everyday life like?