Background: To improve outcomes in children and young adults (CYAs) with chronic conditions, it is important to promote self-care through education and support. Aims: (1) to retrieve the literature describing theories or conceptual models of self-care in CYAs with chronic conditions and (2) to develop a comprehensive framework. Methods: A systematic literature search was conducted on nine databases, according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. All peer-reviewed papers describing a theory or a conceptual model of self-care in CYAs (0–24 years) with chronic conditions were included. Results: Of 2674 records, 17 met the inclusion criteria. Six papers included a theory or a model of self-care, self-management, or a similar concept. Six papers developed or revised pre-existing models or theories, while five papers did not directly focus on a specific model or a theory. Patients were CYAs, mainly with type 1 diabetes mellitus and asthma. Some relevant findings about self-care in CYAs with neurocognitive impairment and in those living with cancer may have been missed. Conclusions: By aggregating the key elements of the 13 self-care conceptual models identified in the review, we developed a new overarching model emphasizing the shift of self-care agency from family to patients as main actors of their self-management process. The model describes influencing factors, self-care behaviors, and outcomes; the more patients engaged in self-care behaviors, the more the outcomes were favorable.

In Neonatal Intensive Care Units (NICUs), parent satisfaction and their experiences are fundamental to assess clinical practice and improve the quality of care delivered to infants and parents. Recently, a specific instrument, the EMpowerment of PArents in THe Intensive Care-Neonatology (EMPATHIC-N), has been developed in the Netherlands. This instrument investigated different domains of care in NICUs from a family-centered care perspective. In Italy, no rigorous instruments are available to evaluate parent satisfaction and experiences in NICU with family-centered care. The aim of this study was to translate and validate the EMPATHIC-N instrument into Italian language measuring parent satisfaction. A psychometric study was conducted in nine Italian NICUs. The hospitals were allocated across Italy: four in the North, four in Central region, one in the South. Parents whose infants were discharged from the Units were enrolled. Parents whose infants died were excluded. Back-forward translation was conducted. Twelve parents reviewed the instrument to assess the cultural adaptation; none of the items fell below the cut-off of 80% agreement. A total of 186 parents of infants who were discharged from nine NICUs were invited to participate and 162 parents responded and returned the questionnaire (87%). The mean scores of the individual items varied between 4.3 and 5.9. Confirmatory factor analysis was performed and all factor loadings were statistically significant with the exception of item ‘Our cultural background was taken into account’. The items related to overall satisfaction showed a higher trend with mean values of 5.8 and 5.9. The Cronbach’s alpha’s (at domain level 0.73-0.92) and corrected item-total scale correlations revealed high reliability estimates. The Italian EMPATHIC-N showed to be a valid and reliable instrument measuring parent satisfaction in NICUs from a family-centered care perspective. Indeed, it had good psychometric properties, validity, and reliability. Furthermore, this instrument is fundamental for further research and internationally benchmarking.

Family Centered Care (FCC) in Neonatal Intensive Care Units (NICUs) included family involvement in the care process of newborns and infants. Staff perceptions of FCC may influence clinical practice and management strategies in NICUs, with an impact on quality and humanization of the care. The Family-Centred Care Questionnaire-Revised (FCCQ-R) was adapted for the NICU setting, therefore the FCCQ-R@it-NICU was developed and used for the present study in 32 Italian NICUs. We calculated internal consistency using Cronbach’s alpha correlation between Current and Necessary dimensions of the scale using the Pearson correlation coefficient. Furthermore, we investigated which characteristics could influence staff perceptions of FCC in NICUs. 921 NICU professionals participated in the study. The FCCQ-R@it-NICU revealed good internal consistency (0.96) and good correlation between dimensions (p < 0.05). Statistical and significant differences in Current and Necessary dimensions were found and some demographic characteristics were found predictable on FCC practice. The FCCQ-R@it-NICU is a valid tool to investigate staff perceptions about FCC in NICU settings. Profession, education level and work experience seem to positively influence the perception of what is required for FCC practice within NICUs.