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ObjectivesTo explore: (1) self-care behaviors in children and young people (range: 6 months–24 years) with complex chronic conditions, characterized by the diagnosis of a severe chronic condition, substantial family-identified needs, functional limitations associated with technology dependence, and intensive use of healthcare services; (2) the contribution to self-care of family members and other persons involved in the child's health and daily life context (e.g., health professionals and teachers), and (3) the principal factors that might have influenced the self-care process associated with developmental age.MethodsA qualitative descriptive study was conducted in an Italian academic tertiary pediatric hospital between September 2020 and May 2021. Overall, 25 focus groups and 7 online interviews were conducted via videoconferencing. Textual data were analyzed using Emotional Text Mining to identify three levels of communication: the factors, the main themes (clusters), and the sub-themes.ResultsA total of 104 participants were enrolled, including 27 patients with complex chronic conditions (12 males, mean age = 11.1 ± 4.40), 33 parents, 6 siblings, 33 health professionals, and 5 teachers. Participants described the process of self-care through four main factors: “self-care”, “external settings”, “family”, and “management”. Five clusters (themes) were identified: (1) Self-care management (device; consulting); (2) Shift of agency (influencing factors; parents; school); (3) Self-care support (normal life and personal development; multidisciplinary support); (4) Daily self-care maintenance/monitoring; (5) Treatment adherence. Self-care management was mostly relevant for parents of children aged between 6 months and 3 years.ConclusionThe self-care process varies according to the needs related to the specific developmental age and the evolution of the clinical condition over time. The contribution of the family, health professionals, and social networks is fundamental for adequate self-care. To help families manage the unstable condition of their children at home, it is necessary to strengthen support networks implement home care, and ensure continuity of care.

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.

Abstract Background 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. Methods 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. Results 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. Conclusions 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.