Dylan Koole, Amanda Lans, Julian H Lang, Tom M de Groot, Pranati Borkhetaria, Jorrit-Jan Verlaan, Joseph H Schwab, Daniel G Tobert
Limited health literacy results in lower health-related quality of life in spine patients
The spine journal : official journal of the North American Spine Society
growing body conceptual evidence last decade increased understanding parents experiences infant complex congenital heart disease concepts include parents feelings uncertainty fear excitement mastery however little known parents experiences confidence knowledge acquisition transition hospital home infant first stage complex cardiac surgery theoretical framework assess plan implement child family centered care would assist childrens cardiac nurses responsible parental education discharge planning coordination explore parents experiences transition hospital home infant following first stage cardiac surgery prospective mixed methods longitudinal design semistructured interviews undertaken including administration maternal confidence questionnaire four timepoints discharge following stage one cardiac surgery t0 2 weeks post discharge t1 8 weeks post discharge t2 stage two surgery t3 qualitative data thematically analyzed descriptive statistics used characterize sample nonparametric repeated measures analysis variance used analyze changes time maternal confidence scores sixteen parents 12 infants participated four patterns transition experience emerged fourth mastery discussed paper mastery contextualized terms parents journeys knowledge construction gaining confidence reflection learning dynamic transformational successful learning acquisition knowledge also dependent upon parents ability absorb integrate adjust given time confidence t0 significantly lower t1 p 011 t2 p 018 t3 p 012 significant differences scores t1 t2 t3 liminality concept described betwixt time parents experienced preparing discharge hospital excitement going home balanced fear alone confidence looking fragile infant parents infants complex congenital heart disease obtain knowledge confidence mastery dependent upon transition experience personal journey preliminal liminal postliminal phases discharge hospital home conceptual framework parenting transitions hospital home emerged could assist structuring assessment parents knowledge support needs within coordinated discharge process identifying individualized support would promote adaptation adjustment transition pre post liminal phase following infants first stage complex cardiac surgery