Neonatal intensive care parent satisfaction: a multicenter study translating and validating the Italian EMPATHIC-N questionnaire

Patient satisfaction has become an important quality indicator in healthcare [1‐3]. Patient opinions reflect their personal preferences, expectations and experience on the care received. Their perceptions contribute to measure the quality of the delivered care offering opportunities of improvement [4]. In Neonatal Intensive Care Units (NICU), parent satisfaction and their experiences become fundamental to assess clinical practice and improve the care of infants and parents [5‐8]. Furthermore, healthcare staff should deliver care recognizing the needs and the experiences of the family [9, 10].

Several neonatal parent satisfaction instruments have been published but the majority were not developed following the standards of validity, reliability or were not conducted with methodological rigor [7, 11]. Recently, a specific instrument for parent satisfaction in NICU has been developed and validated following psychometric measures in the Netherlands [7]. The EMpowerment of PArents in THe Intensive Care-Neonatology (EMPATHIC-N) investigates different domains of NICU care from a family-centered care (FCC) perspective and measures the delivered care as perceived by parents. This instrument covers a wide range of care aspects; therefore, it could be used in every NICU, even in those where FCC is not completely applied.

Various definitions of FCC are available. Overall, FCC can be summarized as a clinical practice approach including the following principles: respect and understanding; provision of information and education to family; coordination of care attained by means of effective communication; physical and emotional support and involvement of parents in decision making and in care [5].

In Italy, no rigorous instruments are available to evaluate parent satisfaction and experiences in NICU with FCC. Furthermore, considering that FCC was ranked as the second research priority domain in NICUs across Europe [12], and was identified as a priority in pediatric critical care research by international experts [13], a validated instrument to measure outcomes and benchmark parent satisfaction is needed.

A validated parent satisfaction instrument offers the opportunity to compare and optimize FCC in NICUs from a broad perspective and might contribute to share FCC outcomes among NICUs nationally and internationally. Therefore, the aim of this study was to translate, cultural adapt, and validate the original Dutch EMPATHIC-N instrument into Italian language.

The present study translated and adapted the Dutch version of the EMPATHIC-N instrument into Italian. This instrument aims to assess NICU parent satisfaction from a FCC perspective. This study showed that the Italian version has good psychometric properties, validity, and reliability. The internal consistency of all the domains showed a Cronbach’s alpha > 0.7 demonstrating the instrument as sufficiently reliable. The congruent validity of scales and correlations among factors showed adequate estimates. The mean scores of the last three items in information domain (communication, clarity, and information sharing) are all over 5. However, a low factor weight (less than 0.1) was observed in the confirmatory factor analysis. These results could suggest that knowledge sharing is not a significant factor in the information domain. This could be considered a weakness in the Italian EMPATHIC-N and would need further testing with a larger response group.

Our study demonstrated a high satisfaction rate on physicians and nurses attitude. We speculate that this evaluation may be independent by the unit organization and environment. The professional behavior of the staff does not depend directly by the NICU’s layout or by lack of service-oriented organizational culture. Even though the environment plays an important role for the parent satisfaction, the behavior of individual staff and the quality of parent-provider relationship still influence parent’s experience [21].

Our study was conducted in different hospitals located across Italy to recruit a representative sample of the country. The NICUs involved in the validation study had different organization and delivery of care. All NICUs practice a certain degree of FCC such as opening of unit to the parents, their involvement in the decisions and practical care or parental support in case of emergency. Although FCC was practiced at various levels in the participating NICUs, we did not consider the different FCC practice levels as a bias for the validation of the instrument. In fact the instrument represents a broad range of items related to clinical practice including principles of FCC. After all, we aim to validate the EMPATHIC-N in order to have a validated instrument to benchmark clinical practice in Italian NICUs including FCC practice levels. In Italy, the North is as prosperous as central and northern Europe, but the South is much poorer economically [22, 23]. Italy has been a country characterized by internal cultural differences mostly varying from region to region. Furthermore, in the last years, a vast influx of migrants has increased the cultural and ethnic diversity. Perhaps the mix of both aspects explains the fact that the only item not statistically significant was ‘Our cultural background was taken into account’. Indeed, it might not be well understood by parents, and therefore it was changed, with the instrument developer approval, in ‘Our cultural background (both national and local) was taken into account’. The Brazilian adaptation of the EMPATHIC-N instrument had a similar issue. However the authors of the study initially decided to exclude this statement [24].Instead, we believe that the cultural aspect is fundamental to meet all patient needs in every context. Culture may be a barrier influencing the levels of patient satisfaction and might influence the level of benchmarking satisfaction outcomes [25, 26].

Our instrument was delivered to parents at NICU discharge day or in the following 3 days. Parents could return the completed questionnaire either the same day or after taking the instrument home and return by post. This timing differed by Latour and colleagues’ study in which the instrument was mailed to the parents 3-4 weeks after the discharge [7]. We opted for a different timing and a face-to-face recruitment to achieve the highest possible response rate considering Italian organizational issues and culture. Indeed, our study obtained a high response rate (87%). Likewise, the authors of the study that validated the Italian version of EMPATHIC instrument for Pediatric Intensive Care Units (PICU) distributed the instrument to parents at PICU discharge and obtained also a high response rate (79%) compared with postal recruitment [27, 28]. In another Italian study, parent satisfaction was evaluated during hospital staying [29].

The NICU nurses were involved in the distribution of the instrument to the parents. In this way, the staff was stimulated to understand the importance of FCC, realize the possible need of change in their unit and find out the response rates in order to improve. We believe that staff motivation is a prerequisite to address changes in the organization and cultural background [2]. Furthermore, the present study is the first of a series to investigate FCC in Italian NICUs. One of the next phases will be focused on NICU staff perception of FCC.

A limitation of our study is that it included only participants who could understand the Italian language and they may be not representative of the entire population. The non-Italian speakers could have been found to be less satisfied with medical care [27, 28]. However, we considered that their satisfaction should be explored using instruments culturally developed and translated in their language. Thus, cultural and linguistic aspects strongly influence outcome expectation. A second limitation is that we did not perform a test-retest reliability to not burden parents with two instruments as Latour and colleagues reported [7]. Finally, the study timing was long, but every NICU began in a different time the enrollment of parents and often they needed to be excluded.

In NICU, the positive or negative experiences of parents may influence the lives of the parents and infants over time and healthcare providers might not have sufficient data to increase the awareness of the consequences of a NICU admission. Thus, assessing NICU parent satisfaction is crucial to inform new directions for change. The Dutch EMPATHIC-N is a validated instrument with sufficient psychometric properties designed to assess parent satisfaction with FCC in NICU. Our study translated and validated this instrument into Italian to provide a benchmark outcome measure. Thus, Italian NICUs have now a valid, reliable instrument to measure parent satisfaction regarding FCC. This is fundamental for further research considering that FCC is one the most important issues identified by European researchers [12].