Table 1. Participant quotations highlighting the emotional experience of pediatric neurocritical care.

Global theme: Pediatric neurocritical care is an intense emotional experience for the whole family
Acute emotions	–Emotionally, it's just been horrendous for the whole family, extended family too, grandparents, aunts, uncles, cousins, we've all been affected –That was another trauma; you have no control over what happens to your child even though you know it's harmful –There were so many times that things had to happen so quickly that was scary as a parent –I can still to this day feel the anger that I felt when I walked into the room and saw that baby in the condition that she was in
Chronic emotions	–I see her improved way more than what she was back then…and I'm grateful for it, so I'm hoping for more. You know, maybe I'm being greedy, but I don't know –We didn't know what the outcome of [name]'s situation was going to be, so every little milestone we kind of, we were obviously very excited to see –We live with a lot of guilt of, you know, what if we had done something different that night. You know, that's always been my issue if I had done something different that wouldn't have happened –I think we all go through grieving…mourning the loss of something that was and a new reality of what's going to be –We all go through feeling guilty that part of it is our fault that we didn't notice something sooner. We should have done something different –Just when you think you got to the end of it, something else hits you
Sources of support	–My parents hooked up their trailer and drove 3,000 miles from South Carolina and parked their trailer in our driveway for 6 weeks –You don't want to burden your friends who have already done so much for you, and there's only so much want to put on your family. And so, anytime anybody would offer it I'd say, I really don't want to burden –We had a social worker through our insurance company who called and checked in on us on a weekly basis…helped, it was a little overwhelming
Effects of emotional responses	–It did put a strain on family relations, so that kind of leaves me feeling like I'm alone –We've been truly lucky and blessed because then I don't know how we could have done it without it…really lucky where the family really rallied behind –My husband and I did intensive grief counseling for 2 years, just to deal with grief and all of a sudden having a kid with special needs –My two kids who were not injured, they've got anger issues and just seem different. As they processed through the medical trauma, what happened to their brother, witnessing the accident and then the separation and then coming back together and everything was different, it's caused them a lot of difficulties –It was a little disturbing for them to see her like that. They cried a lot when they first saw her…Just everything was not her and they were confused. And some of my family members just wouldn't come because they didn't want to see her like that
Barriers	–They thought I was crazy that my 8-year old daughter was having a stroke –Medical providers could have been more understanding of our grief and our feelings –It seemed like some of the medical staff was not super aware of how anxiety can affect a person
Interventions	–I would really recommend parents get counseling during the time before they blow –I guess the biggest thing is making sure families go into counseling after having something like that go on. Two of us are in counseling, I've been in counseling off and on, but it's a new normal that we live with –It would be nice as a parent to have some sort of support group –They didn't have any good support groups for parents suffering through that grief or to kind of relate with other parents who had children of the same diagnosis…I want to meet other parents that suffer from this same grief I'm going through. Like I want to have a formal support group