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

BACKGROUND AND OBJECTIVES: Although the incidence of neonatal abstinence syndrome (NAS) in the United States quintupled between 2000 and 2012, little is known about the family perspective of the hospital stay. We interviewed families to understand their experiences during the newborn hospitalization for NAS and to improve family-centered care.

METHODS: A multidisciplinary team from 3 hospital units composed open-ended interview questions based on a literature review, clinical experience, and an internal iterative process. Trained investigators conducted semi-structured interviews with 20 families of newborns with NAS at hospital discharge. Interviews were recorded and transcribed verbatim. Two investigators independently analyzed each transcript, identified themes via an inductive qualitative approach, and reached a consensus on each code. The research team sorted the themes into broader domains through an iterative process that required consensus of 4 team members.

RESULTS: Five domains of family experience were identified: parents’ desire for education about the course and treatment of NAS; parents valuing their role in the care team; quality of interactions with staff (supportive versus judgmental) and communication regarding clinical course; transfers between units and inconsistencies among providers; and external factors such as addiction recovery and economic limitations.

CONCLUSIONS: Families face many challenges during newborn hospitalization for NAS. Addressing parental needs through improved perinatal education, increased involvement in the care team, consistent care and communication, and minimized transitions in care could improve the NAS hospital experience. The results of this qualitative study may allow for improvements in family-centered care of infants with NAS.