scholarly journals Parents’ needs and perceived gaps in communication with healthcare professionals in the neonatal (intensive) care unit: A qualitative interview study

2021 ◽  
Author(s):  
Esther S. Lorié ◽  
Willem-jan W. Wreesmann ◽  
Nicole R. van Veenendaal ◽  
Anne A.M.W. van Kempen ◽  
Nanon H.M. Labrie
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
Neonatal Intensive Care Unit ◽  
Neonatal Intensive Care ◽  
Healthcare Professionals ◽  
Qualitative Interview ◽  
Interview Study ◽  
Qualitative Interview Study

Living with the Unknown: A Qualitative Study of Parental Experience of Prognostic Uncertainty in the Neonatal Intensive Care Unit

2020 ◽  
Author(s):  
Jeanne A. Krick ◽  
Elliott Mark Weiss ◽  
Anna Snyder ◽  
Shefali Haldar ◽  
Georgina D. Campelia ◽  
...  
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
Qualitative Study ◽  
Neonatal Intensive Care Unit ◽  
Neonatal Intensive Care ◽  
Qualitative Interview ◽  
Parental Experience ◽  
Parent Experiences ◽  
Qualitative Interview Study ◽  
Prognostic Uncertainty

Abstract Objective This study aims to characterize the experience of prognostic uncertainty for neonatal intensive care unit (NICU) parents. Study Design We conducted a qualitative interview study of current and former NICU parents regarding their experience with prognostic uncertainty in the NICU. Interviews were transcribed and analyzed using a grounded theory methodology. Results Twenty-four parents were interviewed before achieving thematic saturation. Three phases of the parental experience of prognostic uncertainty emerged: shock, gray daze, and looking forward. These phases often, but not always, occurred sequentially. In shock, parents felt overwhelmed by uncertainty and were unable to visualize a future for their family. In gray daze, parents felt frustrated by the continued uncertainty. While accepting the possibility of a future for their family, they could not conceptualize a path by which to achieve it. In looking forward, parents accepted uncertainty as inevitable and incorporated it into their vision of the future. Conclusion While each parent experienced the prognostic uncertainty in the neonatal intensive care unit in their own way, we found three common experiential phases. By understanding how a parent experiences prognostic uncertainty in these phases, providers may become better able to communicate and form therapeutic relationships with parents.

Isolated and On Guard: Preparing Neonatal Intensive Care Unit Families for Life with Hydrocephalus

2021 ◽  
Author(s):  
Rebecca A. Dorner ◽  
Renee D. Boss ◽  
Vera J. Burton ◽  
Katherine Raja ◽  
Shenandoah Robinson ◽  
...  
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
Neonatal Intensive Care Unit ◽  
Neonatal Intensive Care ◽  
Parent Communication ◽  
Communication Preferences ◽  
Posthemorrhagic Hydrocephalus ◽  
Parent Experience ◽  
Key Points ◽  
Qualitative Interview Study

Objective This study was aimed to characterize the parent experience of caring for a child with posthemorrhagic hydrocephalus and to describe parent preferences for counseling in the neonatal period and beyond. Study Design This was a qualitative interview study. Parents of infants born preterm with posthemorrhagic hydrocephalus completed semistructured interviews. Data were analyzed using a content analysis approach. Results Thematic saturation was reached on parent communication preferences after 10 interviews. Parent experiences of infant hydrocephalus broadly fell into two time periods, the neonatal intensive care unit (NICU) and after NICU discharge. The themes of uncertainty, isolation, hypervigilance, and the need for advocacy were common to each phase. Conclusion Parents expressed interest in the development of tiered NICU counseling tools that would provide evidence-based and family-centric information to (1) initiate connections with community and peer resources and (2) combat the isolation and hypervigilance that characterized their family experience of living with hydrocephalus. Key Points

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