Implementation of the My Abilities First Tool: A qualitative study on the perceptions of professionals, caregivers, children, and adolescents with disabilities.

OBJECTIVE: To analyze the perceptions of professionals, caregivers, children, and adolescents with disabilities regarding the implementation of the My Abilities First (MAF) tool in Specialized Child Rehabilitation Centers (CERs). METHOD: This is a qualitative research based on Reflexive Thematic Analysis (RTA). The study involved twenty-seven intentionally selected individuals, comprising 12 physiotherapists, 4 occupational therapists, 11 caregivers, 9 children and 2 adolescents. Participants completed sociodemographic and clinical questionnaires and took part in semi-structured online interviews, focusing on two themes: Positive health approaches and the MAF tool. The study was approved by the local ethics committee (opinion 4.779.175). RESULTS: Reflexive Thematic Analysis of the interviews resulted in two themes: (1) Perceptions regarding the MAF tool as an educational and contributory process to enhance the inclusion and participation of children and adolescents with disabilities, and (2) Barriers and facilitators for the implementation process of the MAF tool. The implementation of MAF was identified as a driving factor in promoting equity and increased participation of children and adolescents with disabilities in various settings, including health, education, and leisure. Interviewees highlighted the need to confront attitudinal, communication, and social barriers that may hinder the implementation of the tool. CONCLUSION: The implementation of the MAF tool was perceived as an innovation due to its focus on the abilities of individuals with disabilities. However, there is a need to restructure it to broaden its scope and access to different contexts in order to confront barriers and enhance the inclusion and participation of children and adolescents with disabilities.

Functional assessment of children and adolescents with autism spectrum disorder in Argentina: ICF-ASD multicenter study. / Evaluación funcional de niños, niñas y adolescentes con diagnóstico de trastorno del espectro autista en Argentina: estudio multicéntrico TEA-CIFunciona.

Introduction. Autism spectrum disorder (ASD) is characterized by difficulties in social communication and repetitive and stereotyped behaviors. In addition to the diagnostic category, the activities performed by children and adolescents and their social involvement are the main aspects to be considered according to the International Classification of Functioning, Disability, and Health (ICF) proposed by the World Health Organization to describe health status. In a previous study, we developed the first version of a pediatric tool based on the ICF called ICF-ASD for the functional assessment of children and adolescents with ASD to capture functional characteristics adapted to our cultural setting. Our subsequent objective was to apply the ICF-ASD in a multicenter format to assess children and adolescents from different regions, review, and update it, and identify barriers and facilitators. Population and methods. The ICF-ASD version 1.0 was administered to children and adolescents younger than 16 years with a confirmed diagnosis of ASD (as per DSM-5 criteria), who were receiving follow-up at 5 children's health centers across Argentina. Results. Version 2.0 of the ICF-ASD was obtained, which included 34 categories (10 under body function, 15 under activities and participation, and 9 under environmental factors). A functional profile was developed for the whole sample (n = 308). Conclusions. The updated version of the ICF-ASD helps to standardize and systematize the collection of necessary data for an adequate follow-up of children and adolescents with ASD at a national level. It also allows to identify barriers to overcome and facilitators to be generalized.

Introducción. El trastorno del espectro autista (TEA) se caracteriza por dificultades de comunicación social y comportamientos repetitivos y estereotipados. Además de la categoría diagnóstica, las actividades que los niños, niñas y adolescentes (NNyA) pueden realizar y la participación social son los aspectos principales por considerar desde el marco de la Clasificación Internacional del Funcionamiento, la Discapacidad y la Salud (CIF), propuesta por la Organización Mundial de la Salud, para describir los estados de salud. En una investigación previa, elaboramos la primera versión de una herramienta pediátrica basada en la CIF llamada TEA-CIFunciona para evaluación funcional de NNyA con diagnóstico de TEA, que permitió captar características funcionales adaptadas a nuestro contexto cultural. Se propuso como objetivo posterior aplicar TEA-CIFunciona en formato multicéntrico para evaluar NNyA de diferentes regiones, revisar y actualizar la herramienta, e identificar barreras y facilitadores. Población y métodos. Se administró TEA-CIFunciona versión 1.0 a NNyA con diagnóstico confirmado de TEA (según criterios del DSM-5), menores de 16 años, en seguimiento en cinco centros de atención pediátrica del país. Resultados. Se obtuvo la versión 2.0 de TEA-CIFunciona con 34 categorías (10 funciones corporales, 15 actividades y participación, y 9 factores ambientales). Se elaboró el perfil funcional de la muestra completa (n = 308). Conclusiones. La versión actualizada de TEA-CIFunciona contribuye a estandarizar y a sistematizar la obtención de información necesaria para adecuar el seguimiento de los NNyA con TEA a nivel nacional. Además, permite identificar barreras por superar y facilitadores para generalizar.

Profiles of functioning of a group of children with cerebral palsy in Argentina: Preliminary data from the first national study. / Perfiles de funcionamiento en un grupo de niños con parálisis cerebral en Argentina: datos preliminares del primer estudio nacional.

Cerebral palsy (CP) affects body posture and movement coordination and is the most common cause of severe disability in the pediatric population. The diagnosis of CP is not a description of a person's functioning or interaction with their environment. Therefore, the diagnosis should be complemented with a description of functioning, using tools based on the biopsychosocial model proposed by the World Health Organization's International Classification of Functioning, Disability and Health (ICF). This report describes the preliminary data from a multicenter study conducted in Argentina with the aim of standardizing the description of the profiles of functioning of children and adolescents with CP. These data showed that the participants had some skills in sleep functions, mental functions of language, seeing functions, and in some environmental factors. They showed significant difficulties in categories such as maintaining body position, walking, and toileting.

La parálisis cerebral (PC) afecta la postura y la coordinación del movimiento, y es la causa más común de discapacidad grave en la población pediátrica. El diagnóstico de PC no describe el funcionamiento ni la interacción de la persona con el contexto en el cual se desarrolla. Por lo tanto, el diagnóstico se debe complementar con una descripción del funcionamiento, utilizando herramientas basadas en el modelo biopsicosocial de la Clasificación del Funcionamiento (CIF) de la Organización Mundial de la Salud (OMS). En esta comunicación, describimos los datos preliminares de un estudio multicéntrico en Argentina destinado a estandarizar la descripción del perfil de funcionamiento en niños y adolescentes con PC. Estos datos mostraron que los participantes tienen algunas habilidades en las funciones del sueño, las funciones mentales del lenguaje y las visuales, así como en algunas relacionadas con el contexto. Presentan dificultades importantes en categorías tales como mantener la posición del cuerpo, el andar y la higiene.

Cerebral palsy pain instruments: Recommended tools for clinical research studies by the National Institute of Neurological Disorders and Stroke Cerebral Palsy Common Data Elements project.

AIM: This study describes the process of updating the cerebral palsy (CP) common data elements (CDEs), specifically identifying tools that capture the impact of chronic pain on children's functioning. METHOD: Through a partnership between the American Academy for Cerebral Palsy and Developmental Medicine and the National Institute of Neurological Disorders and Stroke (NINDS), the CP CDEs were developed as data standards for clinical research in neuroscience. Chronic pain was underrepresented in the NINDS CP CDEs version 1.0. A multi-step methodology was applied by an interdisciplinary professional team. Following an adapted CP chronic pain tools' rating system, and a review of psychometric properties, clinical utility, and compliance with inclusion/exclusion criteria, a set of recommended pain tools was posted online for external public comment in May 2022. RESULTS: Fifteen chronic pain tools met inclusion criteria, representing constructs across all components of the International Classification of Functioning, Disability and Health. INTERPRETATION: This paper describes the first condition-specific pain CDEs for a pediatric population. The proposed set of chronic pain tools complement and enhance the applicability of the existing pediatric CP CDEs. The novel CP CDE pain tools harmonize the assessment of chronic pain, addressing not only intensity of chronic pain, but also the functional impact of experiencing it in everyday activities.

Equity in the participation of women in research: how to promote diversity and inclusion in science? / [Equidad en la participación de las mujeres en investigación: ¿Cómo fomentar diversidad e inclusión en la ciencia?]

Gender equality is achieved with equal access to knowledge. Women must have access to science. Scientific outcomes and research work are nourished by diversity and equal opportunities.

La igualdad de género se logra con acceso equitativo al conocimiento. Las mujeres deben tener acceso a la ciencia. La producción científica y la labor de investigación se nutren de la diversidad e igualdad de oportunidades.

Global COVID-19 childhood disability data coordination: A collaborative initiative of the International Alliance of Academies of Childhood Disability.

PURPOSE: The International Alliance of Academies of Childhood Disability created a COVID-19 Task Force with the goal of understanding the global impact of COVID-19 on children with disabilities and their families. The aim of this paper is to synthesize existing evidence describing the impact of COVID-19 on people with disabilities, derived from surveys conducted across the globe. METHODS: A descriptive environmental scan of surveys was conducted. From June to November 2020, a global call for surveys addressing the impact of COVID-19 on disability was launched. To identify gaps and overlaps, the content of the surveys was compared to the Convention on the Rights of the Child and the International Classification of Functioning, Disability and Health. RESULTS: Forty-nine surveys, involving information from more than 17,230 participants around the world were collected. Overall, surveys identified that COVID-19 has negatively impacted several areas of functioning - including mental health, and human rights of people with disabilities and their families worldwide. CONCLUSION: Globally, the surveys highlight that impact of COVID-19 on mental health of people with disabilities, caregivers, and professionals continues to be a major issue. Rapid dissemination of collected information is essential for ameliorating the impact of COVID-19 across the globe.

[Role of the single certificate of disability in Argentina: biopsychosocial approach in the definition of disability or certificate of accessibility?] / [Rol del certificado único de discapacidad en Argentina: ¿enfoque biopsicosocial en la definición de discapacidad o certificado de accesibilidad?]

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Introduction to the Special Issue on Early Child Development: From Measurement to Optimal Functioning and Evidence-Based Policy.

Early child development and overall children's developmental trajectories have long-term implications for health, functioning, and earning potential as these children become adults [...].

Child disability in a changing world: a human rights approach / [Discapacidad infantil en un mundo cambiante: enfoque de derechos humanos]

The COVID-19 pandemic is pronounced as a turning point in our professional health practice, from which new opportunities will arise with which we must promote the rights of children and people with disabilities.

La pandemia del COVID-19 se pronuncia como un punto de inflexión en nuestra práctica profesional en salud, a partir de la cual nuevas oportunidades surgirán con las que debemos promover los derechos de niños, niñas y personas con discapacidad.

Developing a Culturally Sensitive ICF-Based Tool to Describe Functioning of Children with Autism Spectrum Disorder: TEA-CIFunciona Version 1.0 Pilot Study.

BACKGROUND: Autism spectrum disorder (ASD) affects the daily functioning of children and their families; however, in Argentina, there are no standardized tools to guide the description, evaluation, and follow-up of functioning and disability of children with ASD. To fill this gap, the overarching purpose of this study was to create a novel tool guided by the International Classification of Functioning, Disability, and Health (ICF) Core Sets for ASD for clinical practice. METHODS: A multistep methodology was used to identify the most relevant ICF categories for an Argentinian clinical setting. The content of this ICF-based shortlist was piloted and revised according to the results. Subsequently, a toolbox of measures was proposed to operationalize each ICF category. Finally, profiles of the functioning of 100 children with ASD were created. RESULTS: An ICF-based tool called TEA-CIFunciona was created, consisting of 32 ICF categories (10 body functions, 15 activities and participation, 7 environmental factors categories). The application of TEA-CIFunciona incorporated a family-centered approach in ASD evaluations and helped identify functional needs. CONCLUSIONS: TEA-CIFunciona is the first ICF-based instrument that guides the description of functioning of children with ASD in Argentina. TEA-CIFunciona standardizes collaborative assessments in pediatric ASD populations in Latin American contexts.

Promoting Developmental Potential in Early Childhood: A Global Framework for Health and Education.

In the early years of life, children's interactions with the physical and social environment- including families, schools and communities-play a defining role in developmental trajectories with long-term implications for their health, well-being and earning potential as they become adults. Importantly, failing to reach their developmental potential contributes to global cycles of poverty, inequality, and social exclusion. Guided by a rights-based approach, this narrative review synthesizes selected studies and global initiatives promoting early child development and proposes a universal intervention framework of child-environment interactions to optimize children's developmental functioning and trajectories.

Crisis Brings Innovative Strategies: Collaborative Empathic Teleintervention for Children with Disabilities during the COVID-19 Lockdown.

Background: While coronavirus disease 2019 (COVID-19) continues to spread across the globe, public health strategies-including the social distancing measures that many countries have implemented- have caused disruptions to daily routines. For children with disabilities and their families, such measures mean a lack of access to the resources they usually have through schools and habilitation or rehabilitation services. Health emergencies, like the current COVID-19 pandemic, require innovative strategies to ensure continuity of care. The objective of this perspective paper is to propose the adoption of two innovative strategies for teleintervention. Methods: The novel strategies include: (1) to apply the principles of the Routines-Based Model beyond the early years of development, and (2) to adopt My Abilities First-which is a novel educational tool promoting an abilities-oriented approach in healthcare encounters. Results: In the context of COVID-19, and using accessible language, the content of the paper highlights what is important for families and individuals with disabilities, and how the proposed novel strategies could be useful delivering remote support. Conclusions: The principles of the Routines-Based Model and My Abilities First are universal and facilitate collaborative, empathic, family-centered teleintervention for children and youth with disabilities during and post the COVID-19 lockdown.

How congenital Zika virus impacted my child's functioning and disability: a Brazilian qualitative study guided by the ICF.

INTRODUCTION: The Zika virus outbreak in Brazil has had devasting social, medical and financial consequences for families. Both researchers and clinicians are measuring longer-term outcomes to understand the impact of the Zika on child development, functioning and disability. Outcomes and tools used to measure them are very varied and we are unclear how meaningful they are to families and children. This study aimed to identify the parents' perspectives on relevant areas of functioning and disability that should be included as outcome measures for children with congenital Zika syndrome (CZS), as guided by the International Classification of Functioning, Disability and Health (ICF). METHODS: This qualitative study included parents or caregivers of children aged 0-5 years with confirmed CZS from two states in northeastern Brazil. Interviews were conducted using focus groups. Content mapping followed the WHO's ICF linking rules. Three raters analysed the content using NVivo V.11. RESULTS: Thirty-two caregivers participated in six focus groups, 88% were mothers with an average age of 30 years. Most children were male (59%) and all were level V (severe) to on the Gross Motor Function Classification System (GMFCS). Overall, 825 themes were mapped to 36 ICF categories. Although parents mentioned areas across all ICF domains, they reported that areas of mobility, eating and recreation were most relevant for them. In addition, environmental factors were highly identified as barriers, specifically services, policies and access to assistive devices. The most predominant facilitators within the environment were; immediate family support, kind relationships with therapists and support from the extended family. CONCLUSIONS: Although parents emphasised issues related to mobility, their greatest concerns involved environmental factors, such as access and quality of health and social services, systems and policies. These results reinforce the importance of including parents' perspectives when selecting or developing outcome measures for CZS.