Search

Objectives The COVID-19 pandemic resulted in a particularly adverse and stressful environment for expecting mothers, possibly enhancing feelings of anxiety and parenting stress. The present work assesses mothers' anxiety levels at delivery and parenting stress after 3 months as moderated by home-visiting sessions. Methods Women (n = 177) in their second or third trimester of pregnancy during the COVID-19 lockdown were enrolled in northern Italy and split into those who did and did not receive home visits. After 3 months, the association between anxiety at delivery and parenting stress was assessed with bivariate correlations in the whole sample and comparing the two groups. Results Higher anxiety at birth correlated with greater perceived stress after 3 months. Mothers who received at least one home-visiting session reported lower parenting stress at 3 months than counterparts who did not receive home visits. Conclusions for Practice The perinatal period is a sensitive time window for mother-infant health, especially during a critical time like the COVID-19 pandemic. We suggest that home-visiting programs could be beneficial during global healthcare emergencies to promote maternal well-being after delivery.

To develop and validate the Visual Function Classification System (VFCS), which was created to classify how children with cerebral palsy (CP) use visual abilities in daily life.The process of development and validation of the VFCS involved four phases: (1) drafting of the five levels from the analysis of literature and clinical experience; (2) validation of constructs and revision of the levels for concept meaningfulness, using nominal group process; (3) refinement by international Delphi survey; and(4) assessment of interrater reliability among professionals and with caregivers, and of test-retest reliability.Five nominal groups involved 29 participants; 65 people completed the first round and 51 the second round of the Delphi survey. Construct validity was demonstrated within an expert group and external validation through several stakeholders, with the involvement of patients and families to ensure meaningfulness of the concept. Discussions continued until consensus was reached about the construct and content of the five levels. Participants in the reliability study included 29 professionals, 39 parents, and a total sample of 160 children with CP (mean age [SD] 6y 6mo [3y 4mo]; median 5y 7mo, range 1-19y). Absolute interrater agreement among professionals was 86% (weighted κ=0.88; 95% confidence interval [CI] 0.83-0.93). Test-retest reliability was high (weighted κ=0.97; 95% CI 0.95-0.99). Parent-professional interrater reliability on 39 children was moderate (weighted κ=0.51; 95% CI 0.39-0.63).The VFCS has been appropriately constructed and provides a reliable system to classify visual abilities of children with CP both in clinical and in research settings.The Visual Function Classification System is a valid and reliable system. It classifies visual abilities of children with cerebral palsy in clinical and research settings. At a clinical level, it can be used to harmonize communication among professionals and identify patients' strengths and weaknesses. In research settings, it can be used to stratify patients, define natural history evolution, and interpret intervention studies.SISTEMA DE CLASIFICACIÓN DE LA FUNCIÓN VISUAL PARA NIÑOS CON PARÁLISIS CEREBRAL: DESARROLLO Y VALIDACIÓN: OBJETIVO: Desarrollar y validar el Sistema de Clasificación de la Función Visual (VFCS, siglas en inglés), que fue creado para clasificar cómo los niños con parálisis cerebral (PC) usan las habilidades visuales en la vida diaria. MÉTODO: El proceso de desarrollo y validación del VFCS involucró cuatro fases: (1) elaboración de los cinco niveles a partir del análisis de la literatura y la experiencia clínica; (2) la validación de constructos y la revisión de los niveles para el significado de los conceptos, utilizando un proceso de grupo nominal; (3) refinamiento por encuesta internacional de Delphi; (4) evaluación de la confiabilidad entre evaluadores entre profesionales y con los cuidadores, y de confiabilidad de prueba y reevaluación RESULTADOS: Cinco grupos nominales incluyeron 29 participantes; 65 personas completaron la primera ronda y 51 la segunda ronda de la encuesta de Delphi. La validez de constructo se demostró dentro de un grupo de expertos y una validación externa a través de varias partes interesadas, con la participación de los pacientes y las familias para garantizar el significado del concepto. Las discusiones continuaron hasta que se llegó a un consenso sobre el constructo y el contenido de los cinco niveles. Los participantes en el estudio de confiabilidad incluyeron 29 profesionales, 39 padres y una muestra total de 160 niños con PC (edad media [DS] 6 años 6 meses [3 años 4 meses]; mediana 5 años 7 meses, rango 1-19 años). El acuerdo de evaluador absoluto entre profesionales fue del 86% (κ ponderada = 0,88; intervalo de confianza del 95% [IC] 0,83-0,93). La fiabilidad de Test-Retest fue alta (κ ponderada = 0,97; IC del 95%: 0,95 a 0,99). La confiabilidad entre los padres y profesionales entre 39 niños fue moderada (ponderada κ = 0,51; IC del 95%: 0,39 a 0,63). INTERPRETACIÓN: El VFCS se ha construido de manera adecuada y proporciona un sistema confiable para clasificar las habilidades visuales de los niños con PC, tanto en el ámbito clínico como en el de investigación.SISTEMA DE CLASSIFICAÇÃO DA FUNÇÃO VISUAL PARA CRIANÇAS COM PARALISIA CEREBRAL: DESENVOLVIMENTO E VALIDAÇÃO: OBJETIVO: Desenvolver e validar o Sistema de Classificação da Função Visual (SCFV), que foi criado para classificar como crianças com paralisia cerebral (PC) usam capacidades visuais na vida diária. MÉTODO: O processo de desenvolvimento e validação do SCFV envolve quatro fases: (1) rascunho dos cinco níveis a partir da análise da literatura e experiência clínica; (2) validação de construtos e revisão dos níveis de significância dos conceitos, usando processo nominal de grupos; (3) refinamento por meio de levantamento Delphi internacional; (4) avaliação da confiabilidade inter-examinadores entre profissionais e cuidadores, e confiabilidade teste-reteste. RESULTADOS: Cinco grupos nominais envolveram 29 participantes; 65 pessoas completaram a primeira rodada e 51 a segunda rodada do levantamento Delphi. A validade de constructo foi demonstrada em um grupo de especialistas, e a validade externa por meio de vários interessados, com envolvimento de pacientes e famílias para assegurar a significância do conceito. As discussões continuaram até que fosse atingido consenso sobre o constructo e o conteúdo dos cinco níveis. Os participantes no estudo de confiabilidade incluíram 29 profissionais, 39 pais e uma amostra total de 160 crianças com PC (média de idade [DP] 6a 6m [3a 4m]; mediana 5a 7m, variação 1-19a). A confiabilidade inter-examinadores absoluta entre profissionais foi 86% (κ ponderado=0,88; intervalo de confiança [IC] a 95% 0,83-0,93). A confiabilidade teste-reteste foi alta (κ ponderado =0,97; IC 95% 0,95-0,99). A confiabilidade inter-examinadores pais-profissionais em 39 crianças foi moderada (κ ponderado =0,51; IC 95% 0,39-0,63). INTERPRETAÇÃO: O SCFV foi elaborado apropriadamente e é um sistema confiável para classificar as capacidades visuais de crianças com PC em ambientes clínicos e acadêmicos.

Background To investigate timely access to and the time needed to complete the diagnostic path of children and adolescents with suspected attention deficit hyperactivity disorder (ADHD) in the 18 Italian Lombardy Region ADHD reference centers. Methods Data of children and adolescents enrolled in the Regional ADHD disease-oriented Registry for suspected ADHD who requested their first visit in 2013–2017 were analyzed. Results The sample comprised 2262 children and adolescents aged 5–17 years who accessed the ADHD centers for diagnostic classification and management. The median waiting time was of 177 days (range 66–375) from the request for the initial appointment to the completion of the diagnostic path, with a three - fold difference between centers. In addition to the center, the strongest significant predictors of long waiting times were age comorbidities, the severity of the disorder, and having already completed some diagnostic procedures provided by the common standard path. Conclusions To guarantee an equal standard of care in ADHD centers for all children and adolescents there is a pressing need to reduce the times to complete the diagnostic path. It is the task of both policymakers and each center to optimize the quality of the service and of the care delivered.

Background: Family-centred care (FCC) is recognized as the model of best practice for the provision of services for children who have physical disabilities and their families. Objective: To assess the overall perception of FCC provided in an Italian network of 17 rehabilitation services, as perceived by parents of children with cerebral palsy and professionals, and to explore whether children, families, service providers and service-related characteristics influence parent satisfaction regarding service provision in an FCC practice. Methods: The Measure of Processes of Care (MPOC-20) for parents/caregivers and the Measure of Processes of Care for Service Providers (MPOC-SP) for healthcare providers were used. For the purposes of the study, an ad hoc information form was developed to collect information concerning children, families, service providers and services. Results: A total of 382 parents/caregivers and 269 healthcare providers completed the MPOC questionnaires. Parents and service providers both identified the domains for enabling partnerships and interpersonal sensitivity as a strength, while the domain relating to general information was always scored the lowest. An advanced maternal age, being a single parent, being unemployed and having lower socio-economic status were factors identified as individually predictive of lower FCC scores on the MPOC-20. Higher intensity treatment, inpatient services, primary healthcare settings and settings identified with limited financial resources and reduced space/time for each family were other variables significantly associated with less favourable MPOC-20 ratings. Conclusions: The perception of FCC provided was fairly positive, with some areas of improvement, such as the domain of provision of information. Professionals should, therefore, provide better communication and take more time in giving information and attention to parents. Potential sources of variation in parent perceptions of FCC based on family characteristics and the organization of services highlight the importance the need to support services through the provision of greater financial and human resources.

L'approccio alle cure centrato sulla famiglia è ormai riconosciuto come il modello di buona prassi nei Servizi dedicati ai bambini con disabilità e alle loro famiglie. Lo scopo di questo studio è quello di valutare la percezione della qualità delle cure, sia da parte delle famiglie che dei professionisti e la reale applicazione del concetto di FCC in una rete italiana di 17 servizi di riabilitazione e di esaminare la relazione tra caratteristiche del bambino, della famiglia, dei professionisti, dell'organizzazione dei servizi e il grado di soddisfazione per le cure ricevute.

In letteratura è nota l'importanza della funzione visiva ed il suo ruolo cruciale per lo sviluppo neuromotorio, cognitivo ed emotivo del bambino. Dati recenti sottolineano come la funzione visiva possa essere un indicatore dello stato neurologico del soggetto in età evolutiva. Scopo dello studio è stato valutare la funzione visiva nei neonati a termine e pretermine mediante un nuovo strumento clinico chiamato "NAVEG" (Neonatal Assessment Visual European Grid), specificamente progettato per la valutazione della funzione visiva nel neonato. NAVEG si compone di tre sezioni: oculare, oculomotoria e percettiva, in grado di valutare i diversi livelli di coinvolgimento della via visiva. Abbiamo quindi valutato l'applicabilità di NAVEG in 58 neonati a termine sani (37-42 EG) e in 51 neonati pretermine (≤ 34 EG) selezionati c/o la Neonatologia e Terapia Intensiva Neonatale degli Spedali Civili di Brescia. NAVEG si è rivelato uno strumento rapido, riproducibile e non invasivo. I dati raccolti hanno messo in luce tra i due gruppi diverse caratteristiche del profilo visivo e NAVEG ha inoltre mostrato un buon potere discriminatorio tra pretermine sani e patologici. Questi dati preliminari sottolineano come una precoce valutazione della funzione visiva non solo sia possibile ma anche auspicabile per favorire l’identificazione di neonati a rischio neurologico.

Aim This study was conducted to develop and validate a new self-report questionnaire for measuring quality of life (QoL), at school age, in children with a very low birthweight (VLBW). Method Through a focus group approach, children were involved directly in defining the questionnaire items, which were presented as illustrations rather than written questions. This preliminary validation of the questionnaire was conducted in 152 participants with VLBW (aged 7–11y) randomly selected from the five participating Italian centres. The questionnaire was completed by children and parents separately; data on children's demographic and medical history, and intellectual, adaptive, and behavioural functioning were collected using standardized scales. All the children also completed the Paediatric Quality of Life Inventory (PedsQL), another Italian-language measure of QoL in children. Results Our questionnaire was readily accepted and understood, and quick to complete. The Cronbach's alpha value showed it to be a reliable instrument. The child-compiled version correlated well with the PedsQL, whereas no correlations emerged with the other scales used, IQ, or degree of impairment. Conversely, these variables correlated significantly with the parent-compiled version. Children's and parents’ answers were divergent on practically all the items. Interpretation The results confirm the validity of the new instrument and highlight a poor overlap between parents’ and children's perspectives.