Table 3.

Facilitators of Addressing Parents’ Need for Information

Category	Representative Quotations
Prior Knowledge
Mother who was previously a nursing student and whose infant had an LP during a prior hospitalization	“I did, but I understood the risks and the possible side effects before we even went to the hospital and that’s, again, because of my background. So I don’t – I can’t quite speak for other parents if they felt as comfortable making that kind of decision at that moment in the hospital where I – okay, I know what a spinal tap is, I know what the possible side effects are, but my daughter needs it, so this is what I have to do. I can’t quite say I would have so calmly understood the side effects or consequences or procedure as the doctors explained it in that moment if I wasn’t already previously aware.”
Primary Care Pediatrician
Mother of a 4-week old infant who underwent an LP	“So I called the pediatrician-clinic and left a message and then she called me back within five minutes, which is great. I told her the temperature and she knew the age of the baby, so with her being a month, she’s like, okay, so I’m going to need you to go to Yale. She actually did prepare me for what actually did happen, which was great because babies don’t come with a manual and I wouldn’t have even – I wasn’t sure if she was like, hey, bring her in to the office, but she said, nope, you’re going to go right to Yale. She’s like, just to give you a heads up, there will be blood work taken, she may need a spinal tap. So I was warned of that on that initial phone call, which was great.”
Repetition of Information
Mother who is a nurse and whose husband is not in the medical field	“I think things are constantly changing in that situation, like they have a plan, but the plan always changes based off what’s happening at the time. But yeah, bits and pieces I think might be more helpful because if it’s too much all at once, like, you miss things or you forget things. I even noticed like, in a situation like that, my husband would be like, oh, they said this. And I’m like, oh yeah, you’re right. I missed that. Just because it’s a lot and when you’re a parent and especially if you don’t know – if you don’t have a medical background, like, you are clueless and you’re worried. So it’s like, the more reinforcement I think the better.”
Information Sheet
Mother of a 1-week old infant who underwent an LP	“I think for parents who don’t have a medical background or haven’t had to go through this before, it’s a very quick process and to be able to take any information of how the procedure is done, the possible side effects, why the procedure is done, it’s kind of hard for parents to take all of that information in when they really just want to hold their baby and comfort their baby and just know what’s wrong. So it’s a lot of information, it’s a lot of faces, it’s a lot of people in and out of the room. It’s definitely a very scary experience, especially with a child so young. So I think an information sheet, whether they had time to read it or took the time to read it right then and there, I think it would be beneficial for – I mean, the doctors already did a wonderful job explaining it and asking if you have any questions, but I think after the fact, it’s probably nice to have a piece of paper to review just to – what did the doctor say was a possible side effect? What do we need to look out for again? I think that would absolutely be beneficial for some parents.”