Uncertainty and the NICU Experience: A Qualitative Evaluation of Family and Provider Perspectives
Katharine Griffin Gorsky,
Saloni Butala,
Madison House,
Chelsea Moon,
Sam Calvetti,
Tenzin Khando,
Michele Kipke,
Ashwini Lakshmanan
Affiliations
Katharine Griffin Gorsky
Division of Neonatology, San Francisco School of Medicine, University of California, San Francisco, CA 94158, USA
Saloni Butala
Fetal and Neonatal Medicine Institute, Division of Neonatal Medicine, Children’s Hospital Los Angeles, Keck School of Medicine, University of Southern California, Los Angeles, CA 90089, USA
Madison House
Fetal and Neonatal Medicine Institute, Division of Neonatal Medicine, Children’s Hospital Los Angeles, Keck School of Medicine, University of Southern California, Los Angeles, CA 90089, USA
Chelsea Moon
Fetal and Neonatal Medicine Institute, Division of Neonatal Medicine, Children’s Hospital Los Angeles, Keck School of Medicine, University of Southern California, Los Angeles, CA 90089, USA
Sam Calvetti
Community Health Outcome Intervention Research, Children’s Hospital, Keck School of Medicine, University of Southern California, Los Angeles, CA 90089, USA
Tenzin Khando
Life Course Intervention Research Network, University of California, Los Angeles, CA 94158, USA
Michele Kipke
School of Medicine, Keck School of Medicine, University of Southern California, Los Angeles, CA 90089, USA
Ashwini Lakshmanan
Fetal and Neonatal Medicine Institute, Division of Neonatal Medicine, Children’s Hospital Los Angeles, Keck School of Medicine, University of Southern California, Los Angeles, CA 90089, USA
There is limited information regarding caregiver and provider perspectives on uncertainty across the continuum of the neonatal intensive care unit (NICU) experience. Open-ended semi-structured interviews were conducted with providers and English- and Spanish-speaking caregivers of infants with a history of admission to a quaternary safety-net NICU. Major themes were generated using inductive–deductive thematic analysis. Seventy-six individuals participated in the study: 47 caregivers and 29 providers. The median gestational age of the infants was 29 weeks and 85% were classified as having chronic complex disease per the Pediatric Medical Complexity Algorithm. Most providers were neonatologists (37%) and nurses (27%) and more than half had over ten years of experience. A conceptual model of caregiver uncertainty was developed and key domains included drivers of uncertainty and its impact, and factors influencing coping and adaptation. Our analysis found a positive association between caregiver information gathering, clinical continuity, support systems, maternal mental health supports, and witnessing a child’s progress and the development of adjustment to chronic uncertainty. These results suggest key areas for intervention that can promote parental adaptation to the uncertainty inherent in the NICU experience.
