Findings from Former NICU Families Describe Gaps in Family-Centered Care are described by the author and PTBi director of postnatal interventions, Linda Franck. Additional authors include Krista Sigurdson, Jochen Profit, and Ravi Dhurjati, Christine Morton, Melissa Scala, Lelis Vernon, Ashley Randolph, and Jessica T. Phan.
Please describe your research findings.
We held focus groups and interviews with 18 parents whose infants were cared in California neonatal intensive care units (NICUs) to learn about the family-centeredness of their care. Although families frequently spoke highly of the care they received, they faced challenges in receiving family-centered care, particularly families of color and of low socioeconomic status.
The challenges included:
- family lack of knowledge/ambivalence regarding social work or conflict between families and social work,
- staff judgment of, or unwillingness to, address barriers to family presence at bedside,
- unmet family-identified need for nurse continuity of care and a meaningful relationship with nurses, and
- inconsistent access to translation services. These challenges indicate gaps in mutual trust and power-sharing by NICU healthcare professionals.
Any approach to improving family-centered care, especially one aiming to improve racial/ethnic and/or socioeconomic disparities, needs to emphasize mutual trust and power-sharing.
Linda Franck, Researcher and Co-author
California Preterm Birth Initiative
What is important or unique about this study?
In this research, we gave particular attention to recruiting and centering the experiences of families of color and/or of low socioeconomic status, who have been under-represented in previous research. Two parents with NICU experience participated as co-investigators and co-authors.
What is already known about this topic, and how do your findings add to or change this existing knowledge?
Family-centered neonatal care improves quality, safety and outcomes for infants and families. However, we know little about the gaps in NICU family-centered care as experienced by parents, particularly by families of color and those of low socioeconomic status.
What should researchers/providers/patients/public health workers/etc. do as a result of these findings?
We propose that any approach to improving family-centered care, especially one aiming to improve racial/ethnic and/or socioeconomic disparities in family-centered care, needs to emphasize mutual trust and power-sharing through whatever intervention is utilized. More research is needed to develop such interventions.
