ArticleChildren (Basel, Switzerland)2023
Uncertainty and the NICU Experience: A Qualitative Evaluation of Family and Provider Perspectives.
Article in Children (Basel, Switzerland), 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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Who cites it
11 citing papers in PubMed, 18 citations in OpenAlex.
- Parental acceptability of new RSV preventive therapies for infants: A cross-sectional survey in Canada.Human vaccines & immunotherapeutics · 2026Article
- Associations of maternal fatigue and perceived nurse-parent support with cyberchondria dimensions among mothers of hospitalized children aged 0-6 years: a path analysis.BMC public health · 2026Article
- "Each family has a story:" lived experiences of NICU families from staff perspectives.Journal of perinatology : official journal of the California Perinatal Association · 2026Article
- Practice-informed barriers and contextual solutions in neonatal habilitation across Indian Neonatal Intensive Care Units: A qualitative exploration of therapists' perspectives.BMC pediatrics · 2026Article
- "Ringleader who has no power": a qualitative study of parent uncertainty during a NICU admission unrelated to prematurity.Maternal health, neonatology and perinatology · 2025Article
- Parenting experiences of informal caregivers of preterm infants during the first 2 years of life at corrected age: a qualitative systematic review protocol.JBI evidence synthesis · 2025Article
- The effect of peer-led education on the quality of life of mothers of premature infants in neonatal intensive care units: a quasi-experimental study.BMC research notes · 2025Article
- The effect of disease uncertainty on stress perception among parents of critically ill children in the PICU:the mediating effect of coping styles.BMC psychology · 2025Article
- Uncertainties in the NICU: a scoping review to inform a tailored taxonomy.Journal of perinatology : official journal of the California Perinatal Association · 2025Article
- Hospital to Home Transitions for Children With Medical Complexity: A Scoping Review of Healthcare Professionals Experiences.Child: care, health and development · 2025Article
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Authors and funding
8 authors at 3 institutions in 1 country.
Funding
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.
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Registered trials
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