Open AccessFormer NICU Families Describe Gaps in Family-Centered Care
Author(s) -
Krista Sigurdson,
Jochen Profit,
Dhurjati Ravi,
Christine H. Morton,
Melissa Scala,
Lelis Ver,
Ashley Randolph,
Jessica T. Phan,
Linda S. Franck
Publication year - 2020
Publication title -
qualitative health research
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.303
H-Index - 113
eISSN - 1552-7557
pISSN - 1049-7323
DOI - 10.1177/1049732320932897
Subject(s) - socioeconomic status , family centered care , nursing , general partnership , intensive care , focus group , medicine , psychology , health care , sociology , population , environmental health , finance , intensive care medicine , anthropology , economics , economic growth
Care and outcomes of infants admitted to neonatal intensive care vary and differences in family-centered care may contribute. The objective of this study was to understand families' experiences of neonatal care within a framework of family-centered care. We conducted focus groups and interviews with 18 family members whose infants were cared for in California neonatal intensive care units (NICUs) using a grounded theory approach and centering the accounts of families of color and/or of low socioeconomic status. Families identified the following challenges that indicated a gap in mutual trust and power sharing: conflict with or lack of knowledge about social work; staff judgment of, or unwillingness to address barriers to family presence at bedside; need for nurse continuity and meaningful relationship with nurses and inconsistent access to translation services. These unmet needs for partnership in care or support were particularly experienced by parents of color or of low socioeconomic status.