Background: In the neonatal intensive care unit (NICU), infants with the most severe medical conditions (usually related to extreme prematurity) are hospitalized. In this ward, parents endure a distressing and sometimes traumatic period that can last months. In the last decades, health research has focused on the activities and services to best support them, developing the Family-Centered Care (FCC) approach. According to the principles of FCC, parents should be allowed to be present in the NICU with few or no limitations, participate in the daily care of their baby, be involved in the medical decision-making, be engaged in frequent, honest, and empathic communication with the health staff, and receive psychological and financial support. To evaluate the presence and quality of these practices, parents should be asked to report on their experiences, accounting for the care both they and their children receive. This concept can be defined as the “parent experience” of NICU. Objective: First, to discover how research addresses the parent experience of NICU. Second, to discover its evidence in Italy, determining the extent to which the provided service is “family-centered” in the Italian NICUs. Therefore, the following research questions have been formulated: 1. How is the parent experience of NICU studied and measured? 2. What is the evidence of the parent experience of the Italian NICUs? Methods: The first research question was addressed with a review of the existing literature on the parent experience of NICU. Three online databases: Scopus, Web of Science, and PubMed were searched. Secondary sources, such as reports and white papers, were also analyzed. To answer the second research question, an empiric research was conducted involving 482 parents of infants hospitalized in several Italian NICUs. A 35 items questionnaire, developed by the adaptation of the “Neonatal survey” designed by the Picker Institute Europe, was administered to the parents. The questionnaire also included a few questions on parents’ and infants’ descriptive characteristics, and a question on the overall satisfaction with care in the NICU. Following the descriptive statistics, an exploratory factor analysis was conducted to discover the dimensions of experience associated with the survey. Finally, a logistic regression was performed using as dependent variable the level of satisfaction, to discover its predictors. Results: The review of the literature included 42 articles. The parent experience of NICU resulted to be poorly addressed in the literature and often replaced by the study of parent satisfaction. This latter usually provides a limited and optimistic picture. In most of the studies included in the review, FCC initiatives were implemented to improve some specific dimensions of care in the NICU, and the parent satisfaction with them was evaluated. The results of the empiric research showed that parents feel highly supported and satisfied with the Italian NICUs. However, several issues emerge when considering the parent experience in its entirety. Considerable hurdles to the parental presence in the unit, participation in the child’s daily care, and involvement in the medical decision-making were observed. Furthermore, parent-staff communication evaluation produced controversial results in different stages of the experience. These difficulties were mainly related to the structural and organizational shortcomings of the NICUs. However, significant differences were observed in the results across different units. An interestingly high proportion of parents did not benefit from any type of psychological or financial support even when it was available. Two experience dimensions (“Communication and support from NICU staff” and “NICU access and active care”), accounting for around 68% of the overall variance, were identified in the explorative factor analysis. In the regression study, no relationships between satisfaction and parents’ and infants’ descriptive characteristics were found. Five experience questions resulted to be significant predictors of satisfaction, the greatest effect was observed for the possibility for parents to talk about their worries and concerns to the NICU staff. Conclusion: Research has poorly addressed the study of parent experience of NICU. In Italy, despite their high level of satisfaction, parents encounter several problematic aspects in their experience.
Un’unità di Terapia Intensiva Neonatale (TIN) è il reparto di un ospedale specializzato nella cura intensiva di neonati malati o nati prematuri. In questo reparto, i genitori dei bambini ricoverati vivono un'esperienza complicata che può durare anche mesi. La ricerca nel campo delle scienze sanitarie si è concentrata sulle attività e sui servizi che possano meglio supportare questi genitori. L'obiettivo è stabilire un’assistenza centrata sulla famiglia (Family-Centred Care, FCC). FCC significa innanzitutto garantire la presenza dei genitori nel reparto e farli partecipare nella cura del bambino. Inoltre, è necessario instaurare una comunicazione efficace tra genitori e staff medico e fornire informazioni complete e supporto. Un’ altra tendenza è invece emersa nella gestione dell'assistenza sanitaria: la misura della “patient experience”. Quest’ultima è una misura riportata dal paziente considerando tutte le interazioni con gli operatori e i servizi sanitari, ed è spesso associata a miglioramenti qualitativi specialmente in percorsi di cura complessi. La teoria della “patient experience” è stata adattata al contesto della TIN, dove l'esperienza valutata è quella dei genitori dei neonati ricoverati. Pertanto, è stato proposto un modello che descrive l'esperienza dei genitori nella TIN. La FCC invece, fornisce le pratiche per mettere i genitori nella posizione di avere la migliore esperienza possibile. Successivamente sono state formulate le seguenti domande di ricerca: 1. Come viene studiata e misurata l'esperienza dei genitori della terapia intensiva neonatale? 2. Come valutano i genitori la loro esperienza nelle TIN degli ospedali italiani? Per rispondere alla prima domanda di ricerca, una revisione della letteratura che ha incluso 42 articoli è stata effettuata. L'esperienza dei genitori è risultata essere solo parzialmente studiata e spesso sostituita dalla misurazione della loro soddisfazione. Più in generale, il concetto di esperienza sembra non essere ancora emerso nel contesto della TIN. Per rispondere alla seconda domanda di ricerca, è stata condotta una ricerca empirica che ha coinvolto 482 genitori di bambini ricoverati in diverse TIN di ospedali italiani. Un questionario di 35 domande è stato somministrato ai genitori. I risultati hanno mostrato che i genitori si sentono molto supportati e soddisfatti delle TIN italiane. Il livello di soddisfazione è soprattutto associato alla possibilità per i genitori di parlare dei propri dubbi e preoccupazioni allo staff della TIN. Tuttavia, considerando i vari aspetti dell’esperienza, emergono diverse problematiche. Queste riguardano soprattutto la possibilità di garantire la presenza continua dei genitori nel reparto e quella di farli partecipare alla cura dei loro bambini. Inoltre, sono state osservate differenze significative nell'esperienza dei genitori in reparti di diversi ospedali. In conclusione, è stata evidenziata la necessità di sviluppare una “teoria dell’esperienza” nell’ambito della TIN e di definire strumenti standard per misurarla. Le basi teoriche ed empiriche presentate in questa tesi possono rappresentare un punto di partenza.
Discovering the experience of parents in the neonatal intensive care unit. Evidence from the first Italian national study
SPEZIA, NICOLA
2019/2020
Abstract
Background: In the neonatal intensive care unit (NICU), infants with the most severe medical conditions (usually related to extreme prematurity) are hospitalized. In this ward, parents endure a distressing and sometimes traumatic period that can last months. In the last decades, health research has focused on the activities and services to best support them, developing the Family-Centered Care (FCC) approach. According to the principles of FCC, parents should be allowed to be present in the NICU with few or no limitations, participate in the daily care of their baby, be involved in the medical decision-making, be engaged in frequent, honest, and empathic communication with the health staff, and receive psychological and financial support. To evaluate the presence and quality of these practices, parents should be asked to report on their experiences, accounting for the care both they and their children receive. This concept can be defined as the “parent experience” of NICU. Objective: First, to discover how research addresses the parent experience of NICU. Second, to discover its evidence in Italy, determining the extent to which the provided service is “family-centered” in the Italian NICUs. Therefore, the following research questions have been formulated: 1. How is the parent experience of NICU studied and measured? 2. What is the evidence of the parent experience of the Italian NICUs? Methods: The first research question was addressed with a review of the existing literature on the parent experience of NICU. Three online databases: Scopus, Web of Science, and PubMed were searched. Secondary sources, such as reports and white papers, were also analyzed. To answer the second research question, an empiric research was conducted involving 482 parents of infants hospitalized in several Italian NICUs. A 35 items questionnaire, developed by the adaptation of the “Neonatal survey” designed by the Picker Institute Europe, was administered to the parents. The questionnaire also included a few questions on parents’ and infants’ descriptive characteristics, and a question on the overall satisfaction with care in the NICU. Following the descriptive statistics, an exploratory factor analysis was conducted to discover the dimensions of experience associated with the survey. Finally, a logistic regression was performed using as dependent variable the level of satisfaction, to discover its predictors. Results: The review of the literature included 42 articles. The parent experience of NICU resulted to be poorly addressed in the literature and often replaced by the study of parent satisfaction. This latter usually provides a limited and optimistic picture. In most of the studies included in the review, FCC initiatives were implemented to improve some specific dimensions of care in the NICU, and the parent satisfaction with them was evaluated. The results of the empiric research showed that parents feel highly supported and satisfied with the Italian NICUs. However, several issues emerge when considering the parent experience in its entirety. Considerable hurdles to the parental presence in the unit, participation in the child’s daily care, and involvement in the medical decision-making were observed. Furthermore, parent-staff communication evaluation produced controversial results in different stages of the experience. These difficulties were mainly related to the structural and organizational shortcomings of the NICUs. However, significant differences were observed in the results across different units. An interestingly high proportion of parents did not benefit from any type of psychological or financial support even when it was available. Two experience dimensions (“Communication and support from NICU staff” and “NICU access and active care”), accounting for around 68% of the overall variance, were identified in the explorative factor analysis. In the regression study, no relationships between satisfaction and parents’ and infants’ descriptive characteristics were found. Five experience questions resulted to be significant predictors of satisfaction, the greatest effect was observed for the possibility for parents to talk about their worries and concerns to the NICU staff. Conclusion: Research has poorly addressed the study of parent experience of NICU. In Italy, despite their high level of satisfaction, parents encounter several problematic aspects in their experience.| File | Dimensione | Formato | |
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https://hdl.handle.net/10589/154113