Parent experience of Beads of Courage program in a Neonatal Intensive Care Unit

2021 ◽  
pp. 105480
Author(s):  
John G. Joyce ◽  
Katie M. Flynn ◽  
Marie Lynch ◽  
Christina Kilpatrick ◽  
Michael A. Boyle
Author(s):  
Rebecca A. Dorner ◽  
Renee D. Boss ◽  
Vera J. Burton ◽  
Katherine Raja ◽  
Shenandoah Robinson ◽  
...  

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


2019 ◽  
Vol 4 (6) ◽  
pp. 1507-1515
Author(s):  
Lauren L. Madhoun ◽  
Robert Dempster

Purpose Feeding challenges are common for infants in the neonatal intensive care unit (NICU). While sufficient oral feeding is typically a goal during NICU admission, this can be a long and complicated process for both the infant and the family. Many of the stressors related to feeding persist long after hospital discharge, which results in the parents taking the primary role of navigating the infant's course to ensure continued feeding success. This is in addition to dealing with the psychological impact of having a child requiring increased medical attention and the need to continue to fulfill the demands at home. In this clinical focus article, we examine 3 main areas that impact psychosocial stress among parents with infants in the NICU and following discharge: parenting, feeding, and supports. Implications for speech-language pathologists working with these infants and their families are discussed. A case example is also included to describe the treatment course of an infant and her parents in the NICU and after graduation to demonstrate these points further. Conclusion Speech-language pathologists working with infants in the NICU and following hospital discharge must realize the family context and psychosocial considerations that impact feeding progression. Understanding these factors may improve parental engagement to more effectively tailor treatment approaches to meet the needs of the child and family.


2019 ◽  
Author(s):  
M Gaspar ◽  
S Yohasenan ◽  
F Haslbeck ◽  
D Bassler ◽  
V Kurtcuoglu ◽  
...  

Sign in / Sign up

Export Citation Format

Share Document