Table 3. Participant quotations highlighting the psychological and social impact on families.
| Global theme: Pediatric neurocritical care has a significant psychological and social impact | |
|---|---|
| Psychological distress | –You feel enclosed in, and I needed to breathe. Just like let me breathe. –You kind of feel like you're living in a fog during all of that –It's like things you never thought possible happening every day; it just messes with your brain, so yeah, it's had a huge impact on my life –And I still have like nightmares about it and her screaming |
| Financial distress | –I can't work. I'm on disability –I was on a leave of absence from my job for the rest of the summer –I took 6 months off of work –We ended up spending about $50,000 that did not go to medical expenses |
| Social distress | –Some of the relationships suffered because we couldn't maintain normal contact with people or go to birthday parties or just maintain some of those friendships –It was difficult to find people who were comfortable taking care of her. –She wasn't able to do things normal little kids could do…so I think that just robbed her of an awful lot of her childhood |
| Barriers | –We could not get out of the hospital until we had a psychiatrist appointment, and we couldn't get a psychiatrist appointment because there are only two pediatric psychiatrists in all of [hometown], who were full and not taking patients –Our whole life would be appointments if we did everything they asked us to do. Honestly if both of us worked, he probably would not get therapy because it would be too much of a burden on our family |
| Interventions | –Maybe somebody could say these people could help you work through these feelings. I think it would have been nice if there had been some awareness on my end, when the initial PTSD symptoms started to show –We need great information about stuff to read as a parent, but then also you could pass off to friends and family who like TBIs don't heal right away…or here are common issues that come up and surprise people |
Abbreviations: PTSD, post-traumatic stress disorder; TBIs, traumatic brain injuries.