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Table 1 Question guide for semi-structured interviews and focus groups

From: Marfan syndrome in childhood: parents’ perspectives of the impact on daily functioning of children, parents and family; a qualitative study

QuestionsSemi-structured topic list (ICF-CY)
What do you know about MFS? 
What does your child know about MFS? 
Which features of MFS does your child have?
Which features does your child recognize or mention?
mental functions (b1, s1)
sensory functions and pain: vision (b2, s2)
voice and speech functions (b3, s3)
cardiovascular system, immunological and respiratory functions: fatigue (b4,s4)
functions of the digestive, metabolic and endocrine system (b5, s5)
genitourinary functions (b6, s6)
neuromusculoskeletal and movement related body structures and functions (b7, s7)
functions of the skin and related structures (b8, s8)
Can you describe the impact of MFS on daily functioning of your child?learning and applying knowledge (d1)
general tasks and demands (d2)
communication (d3)
mobility (d4)
self-care (d5)
domestic life (d6)
interpersonal interactions and relationships (d7)
major life areas: education, school (d8)
community, social and civic life: leisure, sport, playing (d9)
personal factors: psycho-social development, coping, self-confidence, self-esteem
What kind of physical or emotional support does your child receive?products and technology (e1)
natural environment (e2) support and relationships (e3) services, systems and policies (e5)
What is the attitude of peers and other people towards your child, you and your family?attitudes (e4)
What are your child’s concerns regarding MFS?
How is your child’s coping, self-esteem and self-confidence?
 
What current and future concerns do you have regarding your child?physical impairments (b,s)
activity limitations (d)
participation restrictions (d)
environmental factors (e)
personal factors
What is the impact of MFS on your own life? 
What is the impact of MFS on your family life? 
Which care or support do you need for your child, yourself and your family? 
  1. ICF-CY International Classification of Functioning, Disability and Health for Children and Youth. The ICF-CY uses an alphanumeric coding system. The letters used are “b” for Body Function, “s” for Body Structures, “d” for Activities/Participation and “e” for Environmental Factors and are followed by a numeric code that starts with the chapter number of one digit