Table 2 Reason-Domain Content Differences by Ambulation group*

Self-Esteem/Self-Confidence

“It is important for his self-esteem to feel like he fits in with the crowd”

“It is hard for him and the whole family when he notices he is different.”

“Just to be like everybody else, not feel so restricted”

Connection with Others

“Every kid at that age needs to have friends, it is important not to feel lonely”

“It is important for him to be a part of us together, being a out in the community, having that identity.”

“It is important for anybody to know somebody loves and cares about you”

“Socially it is important because when kids see somebody who is weaker they tend to bully”

“Being able to fit in, to socialize, to feel that he matters.”

“It is harder to maintain friendships for him, it is harder to get involved”

Independence

“Peers his age walk to school by themselves and go to the mall- he can’t do that”

“Just the independence- having to rely on others, especially at school with the bathroom”

“I would like to not have to wait for someone to help or do it for me”

“Independence gives him the motivation to get up- I think about the effect it has on his mentality”

“To have his independence”

“Going and doing something all by himself is such a pain in the butt, he doesn’t do it”

“Having that level of independence- we constantly worry that he will slip and fall, sense of high alert.”

I would just like to be less dependent on the ventilator, not be short of breath

it feels like he is losing his independence, asks for someone else for help- always rely on someone

Accessibility

“Their aunty is like their best friend but we have to worry about her stairs. We always have a conversation about the stairs.”

“I am always stuck in the same place- want to see new things and experience different types of weather”

“He can’t get upstairs, can’t get to the bedrooms- we can’t make our entire home accessible”

“Even [now], places aren’t handicap accessible and he misses out on activities”

Enjoyment

“His happiness is so important and we want to impact his ability to have happiness”

“There is a sense of accomplishment when he achieves what he set out to do.”

“It gives him something to look forward to, usually has nothing to look forward to”

Time Commitment

“I would like for him not to miss school so much”

“He feels like he misses out a lot with his weekly infusions- you have to work around it.”

“He misses a lot of school”