Table 4.

Representative quotes: parent suggestions regarding information and support needs

Information needs: diagnosis, first shunt, and NICU discharge

What I definitely don’t remember…, (being) reiterated how many kids go through this and still are amazing, happy. (P9) I wish I would have known that having these many surgeries was something that could be a big possibility. I thought shunt and done. That obviously isn’t the case. (P2)  I don’t know if there’s a way to gauge or interview parents when they received the diagnosis. Maybe they have a sit down and are told about some of the materials that are available for them. “Are they interested in them now?” I think it’s a very personal experience…. I think it’s more a matter of knowing that that stuff is available to them and then they can gauge what they want and when they want it. (P6)  I think it needs to be tiered, almost like “This is what you need to know when you get your diagnosis. This is what you need to know after the surgery is done.” I don’t think it should be all at once. (P7)  Someone to talk to that had a child, or experienced the things that we were experiencing, that would’ve been helpful. It would be nice if they were able to hook people up with other parents that are willing to share experiences. (P2)  Even with the symptoms of when he was in shunt failure, I felt like that wasn’t even described to us properly. It was just like, “Oh, is he vomiting? Does he seem like he’s sick? Does he have a fever?” It’s so much more than that. I think it’s helpful for parents to know what to look for and how the condition is going to shape their life and the child in a more meaningful way. (P10)  We had to take a CPR class. What if there was a short video…, just explaining like the parts of a shunt and how they work and maybe your signs to look for. Not everybody can learn with someone just telling you. (P3)

Support needs: anticipating uncertainty, reducing isolation, and facilitating advocacy

I think the services that would be helpful…, is somebody that you can reach out to with a hotline, for example, talking to someone who is very knowledgeable about hydrocephalus and all of the things that come with it that can talk to you when you have questions. Should I take him to the ER? Should I not? How many times do families run to the ER when their child has the flu because they think they’re in shunt failure? There needs to be a more sophisticated way of managing that. (P10)  One may need one revision their entire life, where another might need dozens. I think it’s really important to sit down with parents and say, “This condition is all over the map. It’s going to look different for your kid than it might for another kid. Here are all the things that you should be keeping an eye on.” (P10)  Hydrocephalus was his first big diagnosis, but the reality was it was very likely that he was going to have CP. He was going to have epilepsy and some of the learning things. That reality, maybe there’s opportunity to share more openly about some of those realities, to make it less isolating and less negative. Now that I’ve met so many people, they all have sort of similar stories, they all have CP, epilepsy, hydrocephalus. It makes you realize that you’re not alone. There’s a lot of kids like (child) even if we don’t see them every day. (P9)  There’s a whole community of people here who are ready to be with you when you need them. I always say that I understand you might not want that right now, but just know that we’re here for you. (P8)  Hundred percent trust your instincts…. I think that parents know their child better than anybody else…. I think you just have to know that you have a lot of information that can be valuable to doctors. Maybe that textbook answer or diagnosis doesn’t apply to your child, it’s “OK” to push back if you think differently. (P10)

Abbreviations: CP, cerebral palsy; CPR, cardiopulmonary resuscitation; ER, emergency room; NICU, neonatal intensive care unit.

Note: Parent study number is in parentheses.