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

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

Counseling for pediatric patients undergoing hematopoietic stem cell transplantation and their parents: A pilot descriptive study

Purpose: This study aimed to: (1) to assess the Quality of Life (QoL) of pediatric patients who had undergone Hematopoietic Stem Cell Transplantation (HSCT) and their parents; (2) to explore how patients and parents perceived a nurse counseling intervention; and (3) to explore how health professionals consider the nurse counselor's role.Methods: This was a pilot descriptive study using quantitative and qualitative data.Results: Parents' QoL was compromised in the domains of Social Functioning, Physical and Emotional roles. Patients' QoL was poor in all the domains except in Behavior and Family Cohesion. Patients and their parents considered the counseling as an effective help. Seven categories emerged from the analysis of qualitative data: support and taking charge, empathy, active communication and listening, evasion, sharing, awareness, and organizational availability. Regarding health professionals, five categories emerged from the analysis of the interviews and a focus group: support and taking charge, recovery in self-expression, support in relationship with patients and family, connecting role, and difficult integration within the team.Conclusions: The nurse counselor could empower patients and parents to improve their attitudes towards care pathway. The nurse counselor can be an important resource in the context of HSCT, even if greater integration within the team is required.Keywords: Bone marrow transplantation; Counseling; Quality of Life; Pediatric nursing. Counseling per pazienti pediatrici sottoposti a trapianto di cellule staminali ematopoietiche e loro genitori: uno studio mixed methodsObiettivi: Questo studio è stato condotto allo scopo di: (1) valutare la Qualití  di Vita (QdV) dei pazienti pediatrici che sono stati sottoposti a trapianto di cellule staminali ematopoietiche e dei loro genitori; (2) esplorare come i pazienti ed i loro genitori hanno vissuto un intervento infermieristico di counselling; e (3) esplorare come i professionisti sanitari considerano il ruolo dell'infermiere counselor.Metodi: Questo è uno studio pilota a scopo descrittivo che utilizza dati qualitativi e quantitativi.Risultati: La QdV dei genitori è risultata compromessa nei domini relativi al Funzionamento Sociale ed i ruoli Fisico ed Emotivo. La QdV dei pazienti è risultata scarsa in tutti i domini ad eccezione del Comportamento e della Coesione familiare. I pazienti ed i loro genitori hanno ritenuto che l'intervento di counseling fosse un aiuto concreto. Dall'analisi dei dati qualitativi sono emerse sette categorie: supporto e presa in carico, empatia, comunicazione e ascolto attivo, evasione, condivisione, consapevolezza, e disponibilití  organizzativa. Per quanto riguarda i professionisti sanitari, sono emerse cinque categorie dall'analisi delle interviste e del focus group: supporto e presa in carico, guarigione attraverso l'espressione del sé, supporto nella relazione con i pazienti e la famiglia, ruolo di connessione ed integrazione difficile nell'equipe.Conclusioni: L'infermiere counselor potrebbe consentire a pazienti e genitori di migliorare il loro atteggiamento nei confronti del percorso assistenziale. L'infermiere counselor può essere una importante risorsa nel contesto trapiantologico. È necessaria una maggiore integrazione di questa figura all'interno dell'equipe.Keywords: Counseling; Infermieristica pediatrica; Qualití  di vita; Trapianto di cellule staminali ematopoietiche

The development of the International Classification of Functioning, Disability and Health for Child and Youth (ICF-CY) Core Sets: a systematic review

Purpose: The aim of this systematic review is to verify the development of the International Classification of Functioning, Disability and Health for Child and Youth (ICF-CY), investigating methodology and how many core sets have been created. Methods: Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines were used to carry out the systematic review. Six bibliographic databases were searched: MEDLINE, SCOPUS, Web of Sciences, CINHAL, PEDro, and OT Seeker. Papers included in the study have the following characteristics: (a) pediatric population with different health conditions, (b) assessment of ICF domains, (c) development of ICF-CY core set in different health conditions, and (d) recommendation for clinical uses. Results: Search strategies allowed to identify 270 research papers. After the elimination of duplicates, 154 articles were analyzed. Finally, 28 records were included for qualitative synthesis. Twelve different ICF-CY Core Sets were identified. Autism spectrum disorder, attention-deficit/hyperactivity disorder, and cerebral palsy were the main health conditions studied at international level. Most of the studies involved international experts using Cieza' methodology to inform ICF-CY Core Set. Conclusions: After 15 years since the adoption of ICF-CY, it still finds some barriers to use. Concrete actions should be taken to develop further core sets following a rigorous methodology and to contribute implementing the ICF framework.Implication for rehabilitationIn 15 years since the implementation of International Classification of Functioning, Disability and Health for Child and Youth (ICF-CY), only 12 core sets have been developed.To develop ICF-CY Core Set, health professionals should follow methodology described by Cieza et al.Strong collaboration between low- and middle-income countries and high-income countries are recommended

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

Self-Care in Pediatric Patients with Chronic Conditions: A Systematic Review of Theoretical Models

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

Studio di coorte prospettico multicentrico per la validazione italiana della Braden Q per la valutazione del rischio di lesioni da decubito nei neonati e nei bambini fino ad 8 anni

I bambini ricoverati in particolari contesti quali le terapie intensive, le oncologie e le neurologie/neurochirurgiche sono a rischio di sviluppare lesione da pressione. Obiettivo. Validare la versione italiana della Braden Q per la valutazione del rischio di sviluppare lesioni da pressione nei bambini. Metodi. La popolazione è costituita da bambini da 21 giorni agli 8 anni, ricoverati nelle terapie intensive e subintensive. Sono esclusi i bambini prematuri, i ricoverati con lesioni da pressione e anamnesi positiva per cardiopatie congenite. Lo studio è di coorte prospettico, multicentrico con valutazioni del rischio ripetute. La prima rilevazione è stata effettuata dopo 24 ore dal ricovero, con la Braden Q nella versione di Suddaby. Le lesioni da pressione sono state valutate con la Skin Assessment Tool (SAT) e stadiate secondo la National Pressure Ulcer Advisory Panel. Risultati. Su 157 casi sono state eseguite 524 osservazioni. L’incidenza delle lesioni da pressione è del 17.2%. Solo l’analisi per specifiche sottocategorie rileva una buona accuratezza diagnostica: nei bambini dai 3 agli 8 anni l’accuratezza è del 71.4%; nei reparti di terapia sub-intensiva è dell’85.6%. Il valore massimo dell’accuratezza diagnostica (86.2%) è con i bambini dai 3 agli 8 anni ricoverati nei reparti sub intensivi. Conclusione. La scala Braden Q può essere usata affidabilmente ed ha buoni valori di accuratezza diagnostica con i bambini da 3 a 8 anni ricoverati nelle terapie sub-intensive, nei reparti di oncologia o di onco-ematologia pediatrica e di neurologia infantile

Pediatric nurses in pediatricians' offices: a survey for primary care pediatricians

The role played by nurses in caring for children in pediatricians' officies in the community is crucial to ensure integrated care. In Italy, pediatricians are responsible for the health of children aged 0-14 years living in the community. This study aimed to describe Italian primary care pediatricians' opinions about the usefulness of several nursing activities that pediatric nurses could perform in pediatricians' offices