A Qualitative Study of Family Experience With Hospitalization for Neonatal Abstinence Syndrome

Emily C. Atwood; Grace Sollender; Erica Hsu; Christine Arsnow; Victoria Flanagan; Joanna Celenza; Bonny Whalen; Alison V. Holmes

doi:10.1542/hpeds.2016-0024

Article Figures & Data

Tables

View popup

TABLE 1

Family Interview Guide

• Did anything surprise you during your baby’s time here at the hospital?

• How did you learn about NAS before your baby’s delivery?

• Did you find any information about opiate treatment in pregnancy or NAS online?

• How much did your family know about the diagnosis of NAS before your baby was born? Did this change during your baby’s hospital stay? How about at your program?

• What would you have liked to know about NAS before the delivery that you did not know?

• What do you think would have been the best way to learn about NAS?

• In what ways did you feel supported by our staff during your baby’s time here in the hospital? Tell me about a specific story of feeling supported.

• At what times, and in what ways, did you not feel supported during your baby’s time in the hospital? Tell me about a specific story of not feeling supported.

• In what ways did you feel like you were a part of your baby’s care team? Tell me about a time when you felt you were treated as a part of the team.

• In what ways did you feel like you were not a part of your baby’s care team? Tell me about a time when you felt you were not treated as a part of the team.

• What could we have done to make this a better experience for you and your family?

• Did staff members ever say something in front of your family that they were not supposed to?

• Was your baby cared for on different units? What was it like being transferred from 1 unit to another?

• How was the clinical care different between the units?

• How were you involved in your baby’s scoring on the different units?

• Tell me about how the different environments of these units might affect how you could provide comfort measures for your baby’s NAS.

• What were you told about breastfeeding? Did you receive any conflicting information?

• Tell me something that you think would be helpful for our staff to know about caring for a baby and family like yours.

• Tell me something that you think would be helpful for other families to know during the pregnancy or hospital stay.

• Is there something that a staff member did or said that you will never forget? If yes, tell me what this was.

View popup

TABLE 2

Maternal and Newborn Demographic Characteristics for Qualitative Sample

Maternal Demographic Characteristics		Newborn Demographic Characteristics
Mean age (range), y	26 (19–32)	Received morphine treatment	13 (65%)
Documented compliance in maintenance treatment	11 (55%)	Discharged from the hospital with parent(s)	19 (95%)
Buprenorphine	8 (40%)	Report filed with child protective services	15 (75%)
Methadone	3 (15%)	Services before discharge
Documented substance use in pregnancy while enrolled in maintenance treatment	5 (25%)	Mean LOS (range), d	15 (4–47)
Not currently in treatment, documented substance use in pregnancy/identified at delivery	4 (20%)	LOS, morphine treatment, d	18 (11–47)
	4 (20%)	LOS, no morphine treatment, d	6 (4–12)

LOS, length of stay.

View popup

TABLE 3

Domains and Underlying Themes Identified in Family Interviews

Domain	Theme	Interview 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