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. 2019 Jul 24;45(5):613–622. doi: 10.1111/cch.12705

Table 2.

Participants' quotes

Theme Subtheme Relevant quotes
Health Physical health and illness experience

Pat (age 29; GMFCS level II) “I was getting kidney stones on the regular basis and I was getting frequent pain and I was going through countless doctors about the pain … it was giving me a lot of anxiety”

Kathy (age 24; GMFCS IV): “I just, for me I do not know if anybody accessed services through [the regional children's treatment centre] when they were younger but I it was everything there—PT, OT, social work and now [in adulthood] everything is like gone.”

Mental health Josh (age 27): “I do not really drink but I started drinking because it is the cheapest thing I can afford and it's the easiest way I can escape.”
Meaningful participation Work and recreation Louise (age 28; GMFCS IV) “I think that it's really important to me the education that I've been able to acquire and the career aspirations that I have … I work part‐time doing social media managing and blogging for the disability network, so that's about 10 hours a week. I have an undergrad in English and philosophy [from one university]. I also got my master's in education [from another university in a different city] but I have been unable to find work in education. So in addition to my social media job I also tutor whenever I can.”
Goal setting
Impact of the environment Family

Kathy (age 24; GMFCS IV)“My family was really supportive of disability up until I was 18 and I still live at home with them but they do not understand the mental health challenges that I have surrounding disability now because they still see me as that 10 year old … how [do you] you deal with parents that are maybe not where you are at emotionally and how you explain to them the service gaps because my parents are still in like fantasy land and it drives me crazy?”

Joy (age 26; GMFCS I): “[I'm] struggling now with my family I've been pushing myself to try and take care of everything for my mom and my sister and my dog and I just find that my body gives out and I get very tired. But my family treats me like I'm perfectly capable of doing anything and that there is nothing wrong with me … but I need a break … My struggle right now is trying to care for my family and trying to care for myself, you know like finding that balance.”

Intimate and peer relationships

Nina (age 25; GMFCS III): “you should've seen how many people stared at us, like I have a disability and I'm holding the hand of an able‐bodied [guy] like they do not expect that a girl with a wheelchair or walker would be dating … you would think it would be normal because we are just a girl and a guy holding hands but I was in my power chair and everybody looked and I do not understand why it's different”

Muaaz (age 27; GMFCS V): “I think other students just assume … that “disability people” wanted to stick together and not expand their social circle. So that's a big problem.”

Louise (age 28; GMFCS IV): “99% of my friends are able‐bodied. I like it that way because being surrounded by people who are able‐bodied opens doors for me in what I am able to do.”

Nina's (age 25; GMFCS III): “[Although] with my disabled friends we have a lot of shared experiences, I do not really like to have too many disabled friends because it reminds me that I am disabled … Not only do I feel more normal/accepted [when I am with able‐bodied friends] but it teaches the people I hang out with that I am the same as them. Just because I cannot walk the same does not mean that I'm different.”

Accessibility

Louise (age 28; GMFCS IV): “I had to add a line [to my cover letter] about being in a wheelchair which I really did not want to a do but I got to a point where I got a call‐back from a principal … when we started to talk about the physical accessibility of the environment and I immediately went ‘hmm I cannot’ and he said ‘why not’ and I said ‘because I use a wheelchair’ and he said that ‘I realized you had CP but I did not realize you were in a wheelchair and this is what really got because If I'd known you were in a wheelchair I never would've interviewed you’ … that's kind of a knife in the gut.”

Muaaz (age 27; GMFCS V): “A lot of the struggles [around socializing with peers] were trying to get accepted by other people and to find activities that do not involve going to places that are inaccessible or making places more accessible so that people in wheelchairs … the provinces need to work together to make laws and make sure that places more accessible.”

CP and identity

Rita (age 17; GMFCS I): “It's something that's hard for a lot of people with disabilities, so I take pride in the fact that I play a lot of sports.”

Josh (age 27): “My CP is somewhat invisible. And that's been a big hassle in some ways because I have some people who understand my CP but want to treat it like it's not there. Even my immediate family … They want to play the disability card when it suits me not when it does not suit me. And that does not really gel.”

Mary (age 27; GMFCS III) “It means we can have different identities as people so like in saying that I have CP and I'm a minister and I'm gay. Any of those identities clash with each other or cause stress. We have different identities.”