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- Title
Uncertainty and the NICU Experience: A Qualitative Evaluation of Family and Provider Perspectives.
- Authors
Gorsky, Katharine Griffin; Butala, Saloni; House, Madison; Moon, Chelsea; Calvetti, Sam; Khando, Tenzin; Kipke, Michele; Lakshmanan, Ashwini
- Abstract
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.
- Subjects
CAREGIVER attitudes; NEONATAL intensive care; HEALTH services accessibility; ATTITUDES of medical personnel; WORK; TRANSITIONAL care; RESEARCH methodology; UNCERTAINTY; NEONATAL intensive care units; INTERVIEWING; GESTATIONAL age; CHRONIC diseases in children; MENTAL health; FAMILY attitudes; EXPERIENCE; CONTINUUM of care; QUALITATIVE research; EXPERIENTIAL learning; THEMATIC analysis
- Publication
Children, 2023, Vol 10, Issue 11, p1745
- ISSN
2227-9067
- Publication type
Article
- DOI
10.3390/children10111745