Table 2.

Themes and illustrative quotations

Theme	Illustrative quotes
Theme 1: Barriers to social participation are multifaceted	(1) “He loves to dance and play and just be very silly at school with all of his friends… And since he's been diagnosed, I don't know if he has it in his head like he's just different and can't do anything that the other kids do… He’s a lot more distant now, with us and with his friends at school”
	(2) “He plays outside, he kicks the football, he, you know, rides his bike, he runs around, he swims and things like that. But I think everything is just kind of limited. He can't do it as fast or as long… The endurance is not necessarily there or the ability… Everything's just kind of in small spurts”
	(3) “Whatever his 13-year-old brother does, he’s going to do it…his brother’s riding a scooter or a bicycle, you know, [he] wants to do those things. But if we’ve had a busy day or he’s been at school all day then in the afternoons, [he] can only ride his bicycle for a few minutes and his legs hurt. And when I say ride his bicycle, it’s usually me pushing him. It’s not really him trying to pedal or anything like that”
	(4) “[Sports are] not his thing, so I don't know if he's necessarily missing out. I think he's just doing the [adaptive sports league] thing just to satisfy me”
	(5) “He's always gotten along well with a small group of friends, he's perfectly capable of good social interaction. He's just never sought it out. It has changed a little bit. He joined a [game playing] group at school…Some people would call it introvert, but, you know, he has his moments”
	(6) “When I was first losing control of my legs, I had to have a hold onto the wall and railings. But, I would get really, really tired, like…after a couple of steps, I’m done…But then when I got my first wheelchair, I was happy”
	(7) “In the beginning, when he was losing abilities and did not have the wheelchair, he kind of felt like he lost his freedom, but once the wheelchair came into play, he regained that and was able to do things again”
	(8) “We have to take everything into consideration. Can he get in the house? How is their yard? Do they have rugs? You know what I mean? The weather, all them things. So people have to come to him more than he can go them”
	(9) “I know at school, he's in a smaller classroom setting and fortunately, his teacher is really good and talk to the students about why [he] rides in the stroller and how they need to look out for him. So that makes [him] feel included. But I think if he were in a bigger class, or a bigger school, we might have some other issues with that”
	(10) “I'm usually not able to go and socialize and see friends, they have to not be busy for me to do things with them. They work pretty much a majority of the time”
	(11) “For the most part I don’t really talk to any of the people I have actually known in real life”
Theme 2: An emotional journey shaped by ‘inevitable progression’	(12) “He loves to run and he loves to play soccer, but running for long periods of time or being extremely active like that, his legs will hurt really bad and they'll cramp really bad or he's more likely to trip and fall…Sometimes we have to make him sit down and rest. And he'll get frustrated, especially if there's a lot of other children around, he gets embarrassed, he doesn't want to sit down and rest”
	(13) “Probably about eight and a half we noticed that he was starting to kind of slow down…it kind of impacted him because he was noticing that he was different than everyone else and he went through a really frustrated period. He'd…notice that, hey,…how come I can't keep up with my friends? And the transition to the wheelchair was just different for him because he, again, just felt different from everyone else”
	(14) “Since he’s gotten older, he just knows that it’s part of life; it’s a transition of what DMD is and he just knows that we’re just gonna keep going as the disease progresses”
	(15) “He’ll get frustrated or he’s crying because he’s unable to do something…I think right now we’re just relieved that he’s still able to feed himself and play games”
	(16) “He was saying recently, ‘Mum, you know, am I going to lose all my hand function eventually?’ He said, ‘I’ve barely got any left now.’ And that is frustrating for him because I’ve got to position his hands on the laptop exactly where he wants them. And then, even then, he can’t reach some numbers”
	(17) “I am probably one of the older people with my disease…it's more coming to grips, I guess, with my disease”
	(18) “Attitude is so important, having goals and ambitions and, you know, [he] is held accountable to achieve the things he sets out…We live our life and Duchenne isn’t our life, it’s just part of it”
	(19) “I find a lot of joy out of reading [religious text] and going to [place of worship]…and I think that kind of motivates me a little bit…and makes me happy, and also, watch a bunch of motivational speakers on YouTube, and a bunch of motivational books, and so, I think that's kind of been a huge thing in my life”
	(20) “I usually just play video games and just try to pass the time quicker…Where I don’t have to think about really anything. Where I can just play”
	(21) “You take this day by day, come what may”
Theme 3: Family provides critical tangible and emotional support	(22) “There's a non-verbal expectation that he has for us…he don't have to think about it, he'll go down the stairs…and he needs to go to the last step. He knows that by the time he gets there, somebody will be there to help”
	(23) “We’re here to help you, catch you if you fall”
	(24) “He likes to be independent, so we try to find tasks that he can complete that we know that will be easy for him…Put the butter away from dinner. Something that he can do…feeding the dog if the food level is at a level that he can reach or letting her out in the front yard. He can open the door; he can't, obviously, come down our stairs but he can open the door to the front yard to let her outside. So just making tasks and chores that he is able to do himself”
	(25) “How he finds encouragement is by doing what he can do and us supporting him and telling him it’s not the way it’s done, it’s how it gets done.”, while another stated, “We’re just trying to teach him to rely on others. That's why we're there. We're your support system. So please know it's okay to use us. We're there for it”
	(26) “We're here to help him pull up his underwear, get the remote off the floor, do simple things like that but I think that sometimes is hard for him because he's 11 years old and wants to be able to be independent and run around with friends and do things that a typical 11-year-old boy should be able to do”
	(27) “I think it's more challenging for her than it is for me and I thought it would be best if I moved out and got a caregiver”
	(28) “[He] is so into being active and tries really hard to be social…he still has a good life, it’s just hard, you know, our family and friends don’t understand what our life is like and they’re not in it as much as we’d like them to be. But, we still find ways to have a good life”