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

Abstract

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.

Trainees’ Knowledge, Attitudes, and Practices Towards Caring for the Substance-Exposed Mother-Infant Dyad

“…As nonpharmacologic treatment for NAS (including rooming-in with families, breastfeeding, and skinto-skin time) is now promoted as the first-line treatment for infants, a welcoming environment for families and a strong therapeutic bond between families and providers are increasingly important. 7,26 In our study, a minority of students and residents received training in trauma-informed care and even fewer believed it was adequate. Trauma-informed care, which focuses on trauma awareness, creating a safe, trusting environment for families, providing opportunities for choice and collaboration, and focusing on individuals strengths and promoting resiliency, has been shown to improve outcomes for women with SUD.…”

“…5 However, mothers of hospitalized infants with NAS report feelings of guilt watching their infants have withdrawal symptoms and being negatively judged by the medical and nursing staff. 6,7 Biases and stigma towards individuals with substance use disorder (SUD) have been well described at the individual (self), social (general public), and structural (within medical and professional group) levels. 8 Within the medical profession, negative attitudes towards individuals with SUD have been documented among primary care physicians, nurses, internal medicine residents, and medical students [9][10][11][12] and have been shown to negatively impact patient care.…”

The Value of Family Advisors as Coleaders in Pediatric Quality Improvement Efforts: A Qualitative Theme Analysis

“…Members at Stony Brook University Hospital developed a family advisory board to assist in providing more comprehensive patient- and family-centered care in the pediatric intensive care unit (19). Atwood et al described a family advisor’s involvement to improve the family experience during newborn hospitalization for neonatal abstinence syndrome (20). A study by Rosenberg et al incorporated a family advisor to assess the provider–family dynamic as it applies to the safety of pediatric inpatients (21).…”