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Table 7 Video contest topic breakdown

From: “I have SMA, SMA doesn’t have me”: a qualitative snapshot into the challenges, successes, and quality of life of adolescents and young adults with SMA

Awareness video contest topic breakdown (n = 6)
Theme % of participants addressing theme Subtheme Sample quote
Social engagement    
  100 Friendship “My friends treat me the same way they treat anyone else, that’s why we’re best friends”
  100 Key relationship (family, pet, helper) “My brother is a runner and he runs for me”
  50 Lack of social engagement “No one invited me to be their friend”
Everyday life    
  100 Schooling “With school, I have to have a full-time para”
  100 Activities “One of my passions is the arts, I like to paint”
  83.3 Everyday routine “I still do chores, I still help out around the house”
Physical health    
  100% Mobility “A wheelchair can’t go that way”
  100% Overall disease burden “I have all the physical demands of being disabled”
Emotional health    
  50 Frustration “It’s hard to go upstairs, and I get mad at myself sometimes when I can’t do it”
  33.3 Depression “Realizing how my peers treated me, depression overcame me”
Other obstacles    
  100 Dependence “I have to have someone do everything for me”
  83.3 Being labeled/treated “disabled” “Stop with these misconceptions that everyone who is disabled is mentally slow or just sitting around”
Overcoming obstacles    
  100 Defying other’s expectations “Just because you can’t physically do something doesn’t mean you can’t follow your dreams”
  100 Accepting + adapting “I’ve learned to adapt and teach myself to write with both hands”
  1. Contest participants discussed various topics regarding life as adolescents and young adults living with SMA. A sample of direct quotes from each topic is shown here