Table 2. Participant quotations highlighting the chronicity of pediatric neurocritical care diagnoses.

Global theme: Pediatric neurocritical care survivorship is a chronic illness
Physical sequelae	–He developed some horrific headaches –All the sudden she can't walk, she can't talk, she can't feed herself –With his fatigue, people would have to come and visit us. We couldn't go and visit people or go out and do activities because it was too much –He's constantly running into things, tripping over things, due to lack of sensation
Cognitive sequelae	–School is really difficult at best –She'll stop mid-sentence and she'll sometimes forget words here and there
Emotional sequelae	–She likes to keep it all up inside of herself and I don't think that's healthy –It's hard for her to keep those fears in an appropriate zone –He's a little hypersensitive to anything that's going on, and he's like, well I don't want to do that because I don't want to hurt myself –It was really difficult for her to go back to school with her head shaven and all her scars kind of showing
Psychological sequelae	–We walk on eggshells all the time because he's still dealing with mental health issues. He struggles between what's real and not real and has a real hard time knowing the difference –She's in counseling, she has a lot of anxiety
Ongoing medical needs	–She was in a protective helmet for 3 years –Counselor, psychologist, and psychiatrist are what he has now. –He has quite a few problems, so we are continuing to have physical therapy, occupational therapy, and regular therapy
Barriers to care	–We went to our regular doctor who freaked out and said go back to OHSU, I don't know how to deal with this –Our town is not a town that really has the facilities for this kind of injury, we've made probably 20 to 25 trips up there in 4 years…We traveled 273 miles each way for surgeries and appointments –Trying to wade through scientific papers and stuff, just to understand what is going on in his body, and what I can do and what is kind of permanent but what can be shifted a little bit, like just all of that. Man, medical papers suck –Not having medical history in layman's terms makes it really difficult to advocate well for the services your child needs…and so trying to navigate those to describe what's going on with your specific child, especially since TBIs are delightfully unique, is incredibly challenging
Interventions	–She really needed to be in a setting where she was able to just talk about it with somebody, about what she was going through. There's only so much I can say, I'm not a professional, I'm a mom. –She needs somebody who knows how to talk to kids, who had been through a traumatic experience like this, and have come back from the brink, or are still going through this, so that parents don't have that additional weight and pressure of the emotional well-being of their child –An area of improvement I'd like to see some sort of communication between the doctors here and the doctor the child goes home to because my son's doctors were afraid to touch him –Just even having material for the kids to explain any aspect of what is going on with them, or to read to siblings, just to make it seem like it's not just us

Abbreviation: OHSU, Oregon Health and Science University; TBIs, traumatic brain injuries.