Self-care in children and young people with complex chronic conditions: a qualitative study using Emotional Text Mining.

Objectives: To 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. Methods: A 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. Results: A 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. Conclusion: The 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.

Staff Perceptions of Family-Centered Care in Italian Neonatal Intensive Care Units: A Multicenter Cross-Sectional Study.

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.

Instruments Measuring Self-Care in Children and Young Adults With Chronic Conditions: A Systematic Review.

Children and young adults (CYAs) with chronic conditions need to engage in self-care to improve their quality of life. This study aimed to retrieve the literature on instruments to assess self-care in CYAs living with chronic conditions and evaluate the psychometric proprieties of the instruments retrieved. A systematic literature review was conducted on six databases to identify peer-reviewed papers that described or used an evaluation instrument of self-care in CYAs with chronic conditions. Twenty-three articles describing 11 instruments of self-care were identified. Five instruments (45.45%) were developed for specific diseases, while six (54.54%) for various chronic illnesses. Most of the instruments were focused on treatment adherence within self-care maintenance (i.e., behaviors to maintain illness stability), excluding the monitoring of clinical parameters or the management of exacerbations. This review provides an overview of available instruments that measure self-care in CYAs with chronic conditions, which health professionals could use for patient education.

Breastfeeding Protection, Promotion, and Support in Humanitarian Emergencies: A Systematic Review of Literature.

BACKGROUND: Infants, young children, and their mothers are vulnerable in humanitarian emergencies. The health benefits of optimal breastfeeding practices in emergency settings have been demonstrated by many researchers. Infant and Young Children Feeding in Emergency guidelines illustrate a series of interventions to protect, promote, and support breastfeeding, but unfortunately, these recommendations are still scarcely applied. RESEARCH AIMS: (1) To review the literature describing the effectiveness of breastfeeding protection, promotion, and support interventions in humanitarian emergency contexts; (2) to describe the influence of interventions on breastfeeding initiation, exclusivity, and duration; and (3) to evaluate relevant mother and infant/child outcomes available in the literature. METHODS: PubMed, CINAHL, Cochrane Library, Psychology Database, JSTOR, Web of Science, EMBASE, and Ovid were searched for articles that examined breastfeeding protection, promotion, or support interventions and the resulting outcomes without any time limits (N = 10). Articles that did not include the interventions and related outcomes were excluded (n = 1,391). RESULTS: Improved breastfeeding outcomes were reported in four (40%) papers, and three (30%) highlighted a behavioral change in infant and young child feeding practices following the implementation of the interventions. Increased knowledge about appropriate infant and young child feeding practices among mothers and humanitarian/health staff was reported in eight (80%) papers. However, outcomes were sometimes only generically reported, and some of the included papers had a low strength of evidence. CONCLUSION: In the literature, there is a great dearth of studies evaluating the influence of interventions aimed at improving breastfeeding in emergency settings. More evidence is urgently needed to encourage and implement optimal breastfeeding practices.

The current practice of family-centred care in Italian neonatal intensive care units: A multicentre descriptive study.

OBJECTIVES: To explore family-centred care practices in Italian neonatal intensive care units and describe areas for improvement. METHODS: A cross-sectional, multicentre, survey was conducted using the Italian language version of "Advancing family-centred new-born intensive care: a self-assessment inventory". The instrument is divided into 10 sections rating the status of family-centred care (1 = not at all, 5 = very well) and ranking the perceived priority for change/improvement (1 = low, 3 = high). A representative group of staff and parent for each unit were invited to complete the survey. Data was collected between January and June 2015. Correlations among unit characteristics and sections within the survey were explored. SETTINGS: All Italian neonatal intensive care units (n = 105) were invited. RESULTS: Forty-six (43.8%) units returned the survey. The "Leadership" section scored highest in status of family-centred care (mean = 3.45; SD 0.78) and scored highest in priority for change (mean = 2.44; SD 0.49). Section "Families as Advisors and Leaders" scored lowest both in status (mean = 1.66; SD 0.67) and in priority for change (mean = 2.09; SD 0.59). The number of discharged infants was positively correlated with many sections in priority for change (r 0.402-0.421; p < .01). CONCLUSION: This study showed a variability in the organisation of family-centred care practices in Italian neonatal intensive care units and the need to involve parents as partners in the care team. Although family-centred care is considered important by Italian neonatology healthcare professionals, much remains to be done to improve family-centred care practices in neonatal intensive care units in Italy.

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

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.

A systematic review of instruments for assessing parent satisfaction with family-centred care in neonatal intensive care units.

This systematic review synthesised and described instruments measuring parent satisfaction with the increasing standard practice of family-centred care (FCC) in neonatal intensive care units. We evaluated 11 studies published from January 2006 to March 2016: two studies validated a parent satisfaction questionnaire, and nine developed or modified previous questionnaires to use as outcome measures in their local settings. Most instruments were not tested on reliability and validity. CONCLUSION: Only two validated instruments included all six of the FCC principles and could assess parent satisfaction with FCC in neonatal intensive care units and be considered as outcome indicators for further research.

Effectiveness of an improvement programme to prevent interruptions during medication administration in a paediatric hospital: a preintervention-postintervention study.

OBJECTIVE: To assess the effectiveness of an improvement programme to reduce the number of interruptions during the medication administration process in a paediatric hospital. DESIGN AND METHODS: A prestudy-post study design was used to monitor nursing interruptions during medication cycles in a paediatric hospital. Interruptions were reported on an observation sheet (MADOS-P) adapted to the paediatric context. SETTING: A 600-bed tertiary paediatric research hospital in Italy. INTERVENTION: The interventions included a yellow sash worn by nurses during medication cycles, a yellow-taped floor area indicating the 'No interruption area', visual notices in the medication areas, education sessions for healthcare providers and families, patient and parent information material. RESULTS: 225 medication cycles were observed before the intervention (T0) and 261 after the intervention (T1). The median of interruptions occurring in each cycle decreased significantly from baseline to postintervention (8.0 vs 2.0, p=0.002), as the rate ratios (interruptions/patient post-pre ratio: 0.34; interruptions/medication post-pre ratio: 0.37; interruptions/hour of medication cycle post-pre ratio: 0.53, p<0.001). During preintervention, the main causes of interruptions were 'other patients' (19.9%), 'other nurses' (17.2%) and 'conversation' (15.7%); during postintervention, they were 'other nurses' (26.1%), 'conversation' (18.2%) and 'other patients' (17.4%). CONCLUSIONS: This bundle of interventions proved to be an effective improvement programme to prevent interruptions during medication administration in a paediatric context.