Table 3.

Additional quotations.

Theme number	Theme/subtheme	Quotation
1.a.	Absorbing the loss of coping mechanisms	Usually with stress I have many, many ways that I know to deal with it, but it’s been quite limited, and I can’t seem to get away. And it’s made it a lot harder and it’s increased distress when you can’t get rid of it or calm it down—it builds up and it just impacts everything overall. With having nowhere to really go, it’s less motivation to go out and get that sunlight and get that like exercise and all that, and it’s just kind of all-totaling. (Youth 007)
1.b.	Shifting roles to respond to the pandemic	It’s more like how it’s [COVID] impacted my sister. She became really suicidal because of it, so that stressed me out even more. Which, well, when you’re stressed it ups your pain. So I’m definitely not sleeping because anytime my mom’s working night shifts, then I’m up until like 7:30 in the morning trying to make sure that she doesn’t do anything. I’m kind of glad that now it’s kind of like settled down a little bit. … So it’s maybe just affected my sister more? Which causes more stress on me. (Youth 020)
2.a.	Social sacrifice	I did have a couple friends stop talking to me period, that was just because I wasn’t hanging out with them because I wasn’t allowed to hang out with them because it was a thing. My parents didn’t want me seeing anybody. […] I have an older brother who lives in Saskatchewan and so we haven’t been able to see him in about a year because of the pandemic. So that’s more difficult on my family. (Youth 011)
2.a.	Social sacrifice	I know that a lot of people who are going out and getting the virus are people in my age demographic. Because for some reason a lot of these people, they seem to have the mentality it’s all okay, it won’t happen to them. And then they go around. And even if they themselves are asymptomatic, they’re still a carrier and they carry on to other people. And yes, it’s not good and it’s very irritating, especially ’cause I know people like that who are going out and socializing. And even if it’s not in huge groups, you’re still not supposed to do it. So it’s just irritating and in my head, even though I’m not personally doing it, I do in a way feel responsible. … (Sibling 008)
2.b.	Feeling abandoned by the health care system	They [health care team] thought I wasn’t as important as my case is, so it was a bit frustrating and … just made me feel not the best. They said that they were thinking I was completely fine, so it was hard, but I kept at them and making sure I got the appointments. (Youth 003)
2.b.	Feeling abandoned by the health care system	Because she’s had other symptoms develop, which probably now she has full-blown EDS, not just hypermobility spectrum disorder. That was part of the whole plan in the summertime was to reevaluate to see if there were criteria changed. So I don’t know what that’s gonna look like. It was initially just canceled outright and then finally got rescheduled. Like I said, it’s a Zoom call. Same thing with pain program—haven’t had any in-person appointments. Anything with the EDS clinic, ’cause she was going regularly, she would meet with the psychologist, she would meet with the physiotherapist and then the nurse practitioner as needed. That was canceled outright—she hasn’t been back since. (Parent 002)
2.b.ii.	Challenges with transition	The chronic pain clinic, really, they left it that he could contact them if he was having difficulty, but they, too, were trying to make that transition to adult care. So, no, the transition to adult care hasn’t happened smoothly in a sense that right now he’s in a strange gap. (Parent 014)
2.b.ii.	Challenges with transition	I’ve had a couple of ER [emergency room] visits which have actually been really hard because now that I turned 18 and with the pandemic, they don’t want to allow my mom to come in, which is understandable, but also because I just turned 18, like, there’s so much of my medical history that, like, I need my mom for. I’m not used to advocating completely for myself yet. […] So I do think that’s been a little tough because I have to go in—they don’t want my mom to come like even for regular appointments, so it’s been a little bit hard. (Youth 008)
3.a.	Family cohesion: Strengthening bonds in response to the pandemic	I got a lot closer to my family. We don’t tend to spend a whole lot of time with things like family time, ’cause we’re super busy. It has been nice to get a bit more of that. (Sibling 010)
3.b.	Confidence and self-management	Being able to be in a very comfortable environment where I can be where I want to be and then eat when I want to eat and sleep when I want to sleep and exercise when I want to exercise. All of that has also probably been beneficial for me. (Youth 016)