Domains and Underlying Themes Identified in Family Interviews

DomainThemeInterview Excerpts
Education and preparation• Prenatal/postnatal education on NAS, scoring, and pharmacologic and nonpharmacologic treatment“I wish I had known a lot more about NAS before I gave birth…I didn’t think about the consequences. I did [but I didn’t know] they would affect the baby so much.”
• Preparation for extended hospital stay“I didn’t really expect for it to be this long or for it to be honestly anything like this… I didn’t expect her to go through so much, you know, pain and suffering through the whole thing. I didn’t think any of that would happen.”
• Prenatal care/maternal medical care
Partners in care• Parental involvement in infant care“I know my baby more than anybody else does. So they have to rely on that to help them out you know with scoring and knowing what she’s going through.”
• Role of parental emotions“And breastfeeding is way better in this situation. We have noticed that… when he gets that, he’s more calm, aware, he’s more awake…it just seems like it was more soothing to him and he did a lot better and I think that’s why he got a lot lower scores.”
• Impact of breastfeeding and rooming-in
Interpersonal interactions and communication• Good support from staff“Well if they say captured, you don’t really know what it means. Like what is she being captured with?”
• Poor support from staff (feeling judged, breeches of confidentiality)“I just needed support… it’s heartbreaking to see them sick and know that it’s your doing… and [the RN] kind of came back at me with like ‘it’s your fault’ type of feeling.”
• Communication about infant’s clinical course“I’m a recovering heroin addict. I think overcoming something like that and then feeling like you are judged because of it, you end up building some resentment towards people… If you could tell people like us, hey, you are doing awesome, look what you made it through—don’t think of this as in anyway judging you for doing that. You did everything right, and we are just making sure that your baby doesn’t experience anything negative and that’s all.”
Hospital environment and transitions• Different unit routines/transfers between units“One nurse on one shift would be okay with certain things … then the next shift would come on and… we were told that we couldn’t do certain things that we were just told that we could do. It was very, you know, difficult.”
• Experiences unique to NICU“It wasn’t nice, not being able to stay with him 24/7, stuff like that. You know, it’s hard being a new mother and everything like that and have to leave him at night [in the NICU] and whatever—but I’d still prefer that over not being there. So the intensive care nursery was kind of hard for me.”
• Lack of provider, staff, and care process continuity
External factors• Parental drug use and recovery“A methadone clinic was not an option for us, because at the time, we didn’t have a car, and it was, you need to show up daily at this specific time, and it was like, we can’t always do that, and if you miss one, you’re out.”
• Economic limitations“Programs were completely full and the only thing I decided to do was wean myself off on my own until I could get a program, until I could get some kind of help.”
• Family and community supports
  • RN, registered nurse.