TABLE 3 |.
Participant quotes related to timeline for initiating rehabilitation and prioritization of rehabilitation post-diagnosis.
| Topic | Quote | Participant |
|---|---|---|
| Timeline for initiating rehabilitation following a new pediatric cancer diagnosis | ||
| Present information on rehabilitation multiple times | “I think presenting [information about rehabilitation] multiple times. I wouldn’t just present it once and assume a parent has absorbed it all and will remember it. I think hearing about it early…Probably before the surgery, and then, of course, after the surgery, to get it going. I think early, and then recurrent.” | Parent of a 7-year-old with ganglio-neuroblastoma, Site 2 |
| A proactive approach to rehabilitation is valued | “Having someone come pretty much immediately. It was in those first few days. It felt, like, more proactive and less retroactive in making sure that everything was taken care of while we were there…that was really helpful.” | Parent of a 6-year-old with B-cell ALL, Site 2 |
| Early rehabilitation involvement supports long-term engagement | “I think that if you started it when you’re not feeling as horrible yet from, like, all the chemo, um, then it would be easier to continue to do through all of the awful chemo.” | Survivor, 19 years old with T-cell ALL, Site 1 |
| Rehabilitation needs and timing of introduction vary across cancer types | “Well, for us, immediately. Um, but I can definitely see in other situations where maybe waiting until things have calmed down a bit, where we’re not so focused on, you know, lifesaving measures. Um, so, yeah, I think it’s just—yeah, it’s dependent upon a situation. So, for us, definitely as quickly as possible.” | Parent of an 11-year-old with anaplastic ependymoma, Site 1 |
| Successful, positive moments in therapy early after diagnosis | “I would say jump in right away because they—like I said, we saw benefits the first time, and you have to learn how to take the small victories, and I saw those more through PT than I did with his treatment ’cause with his treatment, it got worse before it got better, and so having those little victories in PT kinda helped keep us going, like, focusing on positives.” | Parent of a 2-year-old with B-cell ALL, Site 2 |
| Prioritization of rehabilitation | ||
| Therapy is prioritized during cancer care | “For my daughter, it was not only a priority, but it was, like, literally necessary.” | Parent of a 10-year-old with medulloblastoma, Site 2 |
| “We’ll always find the time [for therapy]. We’ll find a way to make it work for him. Like that’s our priority.” | Parent of a 7-year-old with T-cell ALL, Site 2 | |
| Therapy is deprioritized when the child does not feel well | “And like, just getting out of bed going to the bathroom was hard, so there was no way we were going to leave the house and go to physical therapy on top of her appointments that she also had. And so it was just kind of managing like what are we actually capable of doing right now and what’s beneficial to her right now.” | Parent of an 11-year-old with ALL, Site 1 |
| Competing priorities can interfere with therapy | “My mom let—stopped it for a little bit because I needed, I was getting behind on my work. And it was a little hard, so I had to get catched up. But once I’m all caught up, um, she’s gonna sign me back up.” | Survivor, 15 years old with Pre-B-cell ALL, Site 2 |
| Therapy is a priority, but occasional pauses in therapy can be beneficial | “I will say, during when we had this couple week break because of scheduling, where he just didn’t have appointments. It did feel like a nice little reprieve of not going to the [hospital] so much during those weeks. I didn’t realize how taxing it really is to be going there so often. I don’t mind it because I know how important it is, that’s just the priority.” | Parent of a 7-year-old with ganglio-neuroblastoma, Site 2 |