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Uncertainty and the NICU Experience: A Qualitative Evaluation of Family and Provider Perspectives

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 his...

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Autores principales: Gorsky, Katharine Griffin, Butala, Saloni, House, Madison, Moon, Chelsea, Calvetti, Sam, Khando, Tenzin, Kipke, Michele, Lakshmanan, Ashwini
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10670907/
https://www.ncbi.nlm.nih.gov/pubmed/38002836
http://dx.doi.org/10.3390/children10111745
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author Gorsky, Katharine Griffin
Butala, Saloni
House, Madison
Moon, Chelsea
Calvetti, Sam
Khando, Tenzin
Kipke, Michele
Lakshmanan, Ashwini
author_facet Gorsky, Katharine Griffin
Butala, Saloni
House, Madison
Moon, Chelsea
Calvetti, Sam
Khando, Tenzin
Kipke, Michele
Lakshmanan, Ashwini
author_sort Gorsky, Katharine Griffin
collection PubMed
description 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.
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spelling pubmed-106709072023-10-27 Uncertainty and the NICU Experience: A Qualitative Evaluation of Family and Provider Perspectives Gorsky, Katharine Griffin Butala, Saloni House, Madison Moon, Chelsea Calvetti, Sam Khando, Tenzin Kipke, Michele Lakshmanan, Ashwini Children (Basel) Article 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. MDPI 2023-10-27 /pmc/articles/PMC10670907/ /pubmed/38002836 http://dx.doi.org/10.3390/children10111745 Text en © 2023 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Gorsky, Katharine Griffin
Butala, Saloni
House, Madison
Moon, Chelsea
Calvetti, Sam
Khando, Tenzin
Kipke, Michele
Lakshmanan, Ashwini
Uncertainty and the NICU Experience: A Qualitative Evaluation of Family and Provider Perspectives
title Uncertainty and the NICU Experience: A Qualitative Evaluation of Family and Provider Perspectives
title_full Uncertainty and the NICU Experience: A Qualitative Evaluation of Family and Provider Perspectives
title_fullStr Uncertainty and the NICU Experience: A Qualitative Evaluation of Family and Provider Perspectives
title_full_unstemmed Uncertainty and the NICU Experience: A Qualitative Evaluation of Family and Provider Perspectives
title_short Uncertainty and the NICU Experience: A Qualitative Evaluation of Family and Provider Perspectives
title_sort uncertainty and the nicu experience: a qualitative evaluation of family and provider perspectives
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10670907/
https://www.ncbi.nlm.nih.gov/pubmed/38002836
http://dx.doi.org/10.3390/children10111745
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