Participação em casa e fatores pessoais e ambientais em crianças e adolescentes com síndrome de Down.

OBJETIVO: Descrever a participação em casa atual (frequência, envolvimento) e o desejo do cuidador por mudança na participação em casa de crianças e adolescentes com síndrome de Down, bem como fatores ambientais da casa, e explorar as associações de fatores pessoais e ambientais com a participação atual e o desejo do cuidador por mudança. MÉTODO: Oitenta e dois cuidadores (média de idade = 45 anos e 10 meses) de crianças e adolescentes com síndrome de Down (média de idade = 10 anos e 7 meses) foram entrevistados sobre a participação em casa da criança e fatores ambientais utilizando a Medida de Participação e do Ambiente ­ Crianças e Jovens. Além disso, foram coletados fatores pessoais e ambientais das crianças. Os resultados são relatados por meio de análise descritiva e correlações (coeficientes de correlação de Spearman ou teste U de Mann­Whitney) para descrever a relação entre a participação atual e o desejo do cuidador por mudança, com fatores pessoais e ambientais, para as variáveis ordinais e nominais, respectivamente (p < 0,05). RESULTADOS: A participação das crianças foi maior em cuidados pessoais e menor em atividades relacionadas à escola. A maioria dos cuidadores desejava mudança nas lições de casa e nas tarefas domésticas. Maior frequência de participação foi associada ao sexo masculino, distanciamento social menos rigoroso do cuidador devido à pandemia de covid­19 e crianças recebendo terapia. O maior envolvimento na participação foi associado a uma idade mais jovem nas crianças e a um maior apoio do ambiente. A idade mais avançada das crianças foi associada ao maior desejo por mudança do cuidador. INTERPRETAÇÃO: Fatores pessoais e ambientais são correlacionados com a participação de formas específicas. Devem ser realizadas estratégias criativas para promover a participação e que considerem os desejos do cuidador.

Association between environmental factors during the COVID-19 pandemic and functioning of infants with biological risk in the first year of life: Cross-sectional exploratory study.

BACKGROUND: Child development can be influenced by family and environmental factors, which changed during the COVID-19 pandemic. Thus, it is important to explore how these factors are associated with the functioning of infants with biological risk in the first year of life. OBJECTIVE: This study aimed to investigate associations between family factors, home opportunities, caregiver perception of environmental support and barriers at home and environmental factors during the COVID-19 pandemic and gross motor skills and home participation in infants with biological risk in the first year of life. METHODS: Fifty-six infants aged two to 12 months (M = 5.80 months; ±2.44) and their mothers performed remote assessments of gross motor skills using the Alberta Infant Motor Scale (AIMS); participation and environment (phone call) by the Young Children's Participation and Environment Measure (YC-PEM); family factors (income, age and maternal education), home opportunities - The Affordances in the Home Environment for Motor Development - Infant Scale (AHEMD-IS) and environmental factors during the COVID-19 pandemic (social distancing, emotional and financial factors and physiotherapy) (online forms). Regression models were constructed, considering gross motor skills and home participation as outcome variables, with a 5 % significance level. RESULTS: We found that older maternal age (p = 0.001), more home opportunities (p = 0.043), and less rigorous social distancing (as opposed to total social distancing [p = 0.045]) were significantly associated with better gross motor skills; and higher maternal education (p = 0.050) was associated with more involvement in home activities. CONCLUSION: Family factors, home opportunities and social distancing were differently associated with the gross motor skills and home participation of infants with biological risk in the first year of life.

Home participation and personal and environmental factors in children and adolescents with Down syndrome.

AIM: To describe current home participation (frequency, involvement) and caregiver's desire for change in home participation of children and adolescents with Down syndrome, as well as home environmental factors, and to explore the associations of personal and environmental factors with current participation and caregiver's desire for change. METHOD: Eighty-two caregivers (mean age = 45 years 10 months) of children and adolescents with Down syndrome (mean age = 10 years 7 months) were surveyed about the child's home participation and environmental factors using the Participation and Environment Measure-Children and Youth. Furthermore, children's personal and environmental factors were collected. Results are reported using descriptive analysis and correlations (Spearman's rank correlation coefficients and Mann-Whitney U test) to describe the relationship between current participation and caregiver's desire for change, with personal and environmental factors as ordinal and nominal variables respectively (p < 0.05). RESULTS: Children's participation was highest with regard to personal care management and lowest with regard to school-related activities. Most caregivers desired change in homework and household chores. Greater frequency was associated with male sex, caregiver less rigorous social distancing due to the COVID-19 pandemic, and children receiving therapies. Greater involvement was associated with younger age in children and higher environmental support. Older age in children was associated with caregiver's greater desire for change. INTERPRETATION: Personal and environmental factors correlated with participation in specific ways. Creative strategies to promote participation that consider caregiver's wishes should be undertaken.

The psychometric properties and feasibility of the Alberta infant motor scale used in telehealth: A scoping review.

BACKGROUND: Telehealth can be a viable option for improving equitable access to early motor assessment for financially vulnerable individuals. AIM: This review aimed to identify the psychometric properties of the Alberta Infant Motor Scale (AIMS) when applied via telehealth and assess its feasibility. METHODS: Papers were systematically retrieved from electronic databases until October 4, 2023. We included studies that assessed the motor development of infants using the AIMS through telehealth. RESULTS: Thirteen studies, encompassing 897 infants (449 male and 396 female), were included in this review. Among them, 805 were typical infants and 92 were at risk of motor delay. The age range of participants spanned from 4.9 weeks to 20 months. The studies found good concurrent validity between telehealth and in-person assessments (ICC > 0.98, SEM < 1.6, mean difference = 0.5) and good to excellent reliability (ICC > 0.80) using home videos recorded by parents or video calls with researchers. Telehealth was perceived as feasible by parents, who expressed high satisfaction, and the quality of images and assessments met commendable standards. CONCLUSION: Considering the limited number of studies that have assessed infants with neuromotor disorders, this scale has the potential for telehealth application in evaluating typical infants.

Association between participation at home and functional skills in children and adolescents with Down syndrome: A cross-sectional study.

BACKGROUND: According to a biopsychosocial approach to health and disability, participation at home and functional skills are important components of the functioning. Therefore, knowledge about interactions between these components allows for targeting specific interventions. OBJECTIVE: This study investigated whether participation opportunities (frequency and involvement) for children/adolescents with Down syndrome (DS) in a realistic environment at their own home are associated with the functional skills related to the domains of Daily Activities, Mobility, Social/Cognitive and Responsibility. METHODS: This was an observational study. Forty-eight children/adolescents with DS participated (mean age: 10.73 ± 3.43; n = 27 females). Participants were evaluated using the Participation and Environment Measure for Children and Youth (PEM-CY) home environment setting (raw frequency and engagement scores) and Pediatric Evaluation of Disability Inventory speedy version (PEDI-CAT-SV) (continuous score). RESULTS: Significant and positive correlations were found between the frequency of participation at home with Daily Activities (ro = 0.320), Social/Cognitive (ro = 0.423) and Responsibility (ro = 0.455). For involvement, significant and positive correlations were found with Daily Activities (ro = 0.297), Social/Cognitive (ro = 0.380) and Responsibility (ro = 0.380). For the PEDI-CAT-SV Mobility, no significant correlation was found. CONCLUSIONS: Higher frequency and involvement of participation at home are associated with greater functional skills assessed, except for Mobility. This study provided pioneering insights about the relationships between the level of home participation and functional skills in DS, generating evidence that could guide approaches to participation-focused intervention.

Following 4 months of social distancing during COVID-19 Pandemic in Brazil did not change aspects of functioning in children and adolescents with developmental disabilities: A longitudinal study.

The COVID-19 pandemic and its demands of social distancing have created challenges in the lives of children/adolescents with developmental disabilities and their families, which would change aspects of children's functioning. The objetive of this study was to evaluate changes in some components of functioning of children/adolescents with disabilities following 4 months of social distancing during a period of high contamination rate in the year 2020 in Brazil. Participated 81 mothers of children/adolescents with disabilities, 3-17 years, most of them (80%) diagnosed with Down syndrome, cerebral palsy and autism spectrum disorder. Remote assessments of functioning' aspects including IPAQ, YC-PEM/ PEM-C, Social Support Scale and PedsQL V.4.0. Wilcoxon tests compared the measures, with significance level <0.05. No significant changes in participant's functioning were identified. Social adjustments required to facing the pandemic during two points in time in the midst of the pandemic did not change the evaluated aspects of functioning in our sample of Brazilian.

Perceived Social Support and Quality of Life of Children with and without Developmental Disabilities and Their Caregivers during the COVID-19 Pandemic in Brazil: A Cross-Sectional Study.

BACKGROUND: Social support and Quality of life (QoL) are important aspects of life and should be explored during the specific scenario of the pandemic. AIMS: (i) to compare the perceived social support (PSS) in caregivers and the domains of QoL of the caregiver and the child with developmental disabilities (DD) and typical development (TD); (ii) to verify the existence of the association, in each group, between the PSS, and the domain of QoL of the caregiver and the child. METHODS AND PROCEDURES: 52 caregivers of children with DD and 34 with TD participated remotely. We assessed PSS (Social Support Scale), children's QoL (PedsQL-4.0-parent proxy) and caregivers' QoL (PedsQL-Family Impact Module). The groups were compared for the outcomes using the Mann-Whitney test, and Spearman's test evaluated the correlation between the PSS and the QoL (child and caregiver) in each of the groups. OUTCOMES AND RESULTS: There was no difference between groups for PSS. Children with DD presented lower values in PedsQL total, psychosocial health, physical health, social activities, and school activity. Caregivers of children with TD presented lower values in PedsQL family total, physical capacity, emotional aspect, social aspect, daily activities, and higher value in communication. In the DD group, we found a positive relationship between PSS with child: Psychosocial Health (r = 0.350) and Emotional Aspect (r = 0.380), and with family: Total (r = 0.562), Physical Capacity (r = 0.402), Emotional Aspect (r = 0.492), Social Aspect (r = 0.606), Communication (r = 0.535), Concern (r = 0.303), Daily Activities (r = 0.394) and Family Relationships (r = 0.369). In the TD group, we found that PSS was positively associated with Family: Social Aspect (r = 0.472) and Communication (r = 0.431). CONCLUSIONS AND IMPLICATIONS: During the COVID-19 pandemic, despite both groups presenting similar PSS, there are important differences in QoL between them. For both groups, greater levels of perceived social support are associated with greater caregiver-reported in some domains of the child's and caregiver's QoL. These associations are more numerous, especially for the families of children with DD. This study provides a unique view into the relationships between perceived social support and QoL during the "natural experiment" of living through a pandemic.

Early Intervention Involving Specific Task-Environment-Participation (STEP) Protocol for Infants at Risk: A Feasibility Study.

Aims: To verify the feasibility and preliminary effects of the STEP protocol, an intervention based on specific motor skills, environmental factors and participation, in infants at biological risk.Methods: Twenty-eight at-risk infants (STEP Protocol = 14; Standard Intervention = 14), aged 3-9 months and at risk for developmental delay. The following outcomes were assessed: motor skills (Alberta Infant Motor Scale-AIMS); frequency and involvement of participation (Young Children's Participation and Environment Measure-YC-PEM), and home environment opportunities (Affordances in the Home Environment for Motor Development-AHEMD-IS). For both groups, interventions were provided by parents. The intervention for group was based on the following principles: (1) standard intervention: stimulation of motor skills; (2) STEP: stimulation of motor skills, participation, mother-infant interaction, environmental enrichment. A mean comparison test was applied to verify difference between groups after the intervention.Results: The protocol showed good retention and recruitment rates. The STEP group had significantly higher outcomes after intervention on the AIMS (p = 0.014); frequency (p = 0.02) and engagement (p = 0.03) in participation, when compared to standard intervention.Conclusions: The results showed that the STEP protocol is feasible, and presents better results compared to the standard intervention, which reinforces the importance of promoting participation, specific motor skills and family involvement.

Translation of the Involvement Matrix tool into Brazilian Portuguese / Tradução da ferramenta Involvement Matrix para o português brasileiro

Abstract Introduction Patient and public involvement has numerous benefits for research; however, there are challenges to its implementation, such as the lack of tools to guide participant engagement in research. The Involvement Matrix (IM) is a tool that facilitates discussion about the role that participants play in research projects, promoting more active public involvement. Objective To translate IM materials into Brazilian Portuguese in order to facilitate their use and guide researchers. Methods Authorization to translate the original material into Brazilian Portuguese was obtained from the authors. Next, the translated material underwent backtranslation. The resulting version was verified by the original IM authors, ensuring semantic and content accuracy. Results The Involvement Matrix (IM) was translated into Portuguese and then backtranslated into English. The researchers discussed the translated version with the IM authors, with minimal adjustments needed in the backtranslation, and no changes made to the Portuguese version. After the approval of the final Brazilian Portuguese version, the translated tools were made available, including a Practical Guide, a Word Version, a Checklist, a Fact Sheet, an Overview with Examples, and an Animated Video with Brazilian Portuguese subtitles. Conclusion The various IM materials are adequately translated and freely available for use in Brazil. It is a valuable tool to guide public and patient involvement in research.

Resumo Introdução O envolvimento do paciente e do público traz diversos benefícios para a pesquisa, no entanto, existem desafios para sua implementação, como a falta de ferramentas que orientem o engajamento dos participantes em pesquisas que os envolvem. A Involvement Matrix (IM) é uma ferramenta que facilita o diálogo sobre o papel que o participante da pesquisa deseja desempenhar em projetos de pesquisas pro-movendo um envolvimento mais ativo desse público. Objetivo Traduzir os materiais da IM para o português brasileiro, a fim de disponibilizar seu uso no Brasil e ori-entar pesquisadores. Métodos Solicitou-se autorização aos autores do instrumento original para traduzi-lo para o português brasileiro. Em seguida, o material traduzido passou por um processo de retrotradução. O resultado foi verificado pelos autores da IM, garantindo a precisão semântica e de conteúdo. Resultados A Matriz de Envolvimento (ME) foi traduzida para o português e retrotraduzida ao inglês. Posteriormente, os pesquisadores da versão brasileira realizaram uma reunião com os autores da ME para esclarecer dúvi-das, havendo a necessidade de mínimos ajustes na retrotradução, sem mudanças da versão em português. Após a aprovação da versão final em português brasi-leiro, foram disponibilizadas as ferramentas traduzidas: um Guia Prático, uma Versão em Word, uma Lista de Verificação, uma Ficha Técnica, uma Visão Geral com Exemplos e um Vídeo Animado legendado em português brasileiro. Conclusão Os diversos materiais da ME estão adequadamente traduzidos e disponíveis gratuitamente para uso no Brasil. Trata-se de uma ferramenta valiosa para guiar o envolvimento do público e do paciente em pesquisas.

Exploration of the Feasibility of Remote Assessment of Functioning in Children and Adolescents with Developmental Disabilities: Parents' Perspectives and Related Contextual Factors.

The COVID-19 pandemic interrupted face-to-face health services, leveraging telehealth strategies. The aim of this cross-sectional study was to investigate, from a parent's perspective, the feasibility of a remote assessment of functioning in children with developmental disabilities during the pandemic and related contextual factors, based on how parents carry out the assessment. Parents of children with developmental disabilities (mean age = 7.56 ± 3.68) responded to a remote assessment via electronic forms and telephone interview. We analyzed parents' perspectives about the feasibility of the assessment. We also tested the association between feasibility score and sociodemographics/pandemic experience. Regression analysis tested if children's functioning characteristics predicted feasibility. A total of 57 mothers completed the remote assessment, and more than 95% did not report difficulties in accessing/responding to electronic forms. They scored remote assessment as easy and feasible, and reported no difficulties with telephone interview. Greater feasibility rates were related to lower maternal age (rho Spearman = -0.290; p = 0.029). The model shows that children's characteristics predicted 20.4% of feasibility (p < 0.005). Remote assessment showed to be feasible. Younger mothers might consider easier-to-use technologies, beyond considering remote assessment more viable. These results can guide the next steps in research and remote clinical practice.

Telemonitoring of motor skills using the Alberta Infant Motor Scale for at-risk infants in the first year of life.

INTRODUCTION: Remote assessment creates opportunities for monitoring child development at home. Determining the possible barriers to and facilitators of the quality of telemonitoring motor skills allows for safe and effective practices. We aimed to: (1) determine the quality, barriers and facilitators of Alberta Infant Motor Scale (AIMS) home videos made by mothers; (2) verify interrater reliability; (3) determine the association between contextual factors and the quality of assessments. METHODS: Thirty infants at biological risk aged between three and ten months, of both sexes, and their mothers were included. Assessments were based on asynchronous home videos, where motor skills were evaluated by mothers at home according to AIMS guidelines. The following were analyzed: video quality; stimulus quality; camera position; and physical environment. The video characteristics were analyzed descriptively. The intraclass correlation coefficient was used to calculate interrater reliability and the regression model to determine the influence of contextual factors on the outcome variables. Significance was set at 5%. RESULTS: Remote assessment of AIMS exhibited high image and stimulus quality, and a suitable physical environment. Interrater reliability was high for all domains: prone (r = 0.976); supine (r = 0.965); sitting (r = 0.987); standing (r = 0.945) and total score (r = 0.980). The contextual factors had no relation with assessment quality. DISCUSSION: Assessments conducted remotely by the mothers showed high video quality and interrater reliability, and represent a promising assessment tool for telemedicine in at-risk infants in the first year of life.

Postural control in Down syndrome and relationships with the dimensions of the International Classification of Functioning, Disability and Health - a systematic review.

PURPOSE: Postural control assessment in children with Down syndrome (DS) may contribute to understanding the impact of impairments in Body Structures and Functions on Activities and Participation, providing a biopsychosocial approach to support clinical practice. The present study aimed to systematically review the literature addressing postural control in children and adolescents with Down syndrome, with a focus in the interactions among the components of the International Classification of Functioning (ICF). METHODS: We conducted a tailored search in PubMed; Web of Science, SCOPUS and Science Direct databases. RESULTS: We identified 20 full-texts that fulfilled the inclusion and exclusion criteria. Children and adolescents with DS showed lower postural stability across studies. The ICF components most commonly addressed were Body Structure and Function and Activity. Although the studies measured these components, they did not analyze the interrelationships of components when describing the determinants of postural control in this population. CONCLUSIONS: Overall, the studies indicate that children and adolescents with DS show decreased postural stability and greater vulnerability to sensory changes than their typical peers. There is a lack of studies using the biopsychosocial approach. Only few studies have related the activity level of the participants with the variables of postural control. None of them addressed components of Participation and Environmental Factors. The poor methodological quality of the included studies limits the translation of results to clinical practice. Further studies addressing children with disabilities, such as DS, should utilize the ICF framework, thus providing a biopsychosocial approach of health in these individuals.IMPLICATIONS FOR REHABILITATIONChildren with Down syndrome show decreased postural stability and greater vulnerability to sensory changes than their typical peers.In clinical practice, when assessing postural control of individuals with DS, rehabilitation professionals should not only address components of Body Structures and Functions, but also investigate their impact on Activity and Participation.Training of postural control should address strategies that include natural environments and participation situations.The biopsychosocial approach provided by the ICF framework should be implemented in clinical practice.

Functioning of children and adolescents with Down syndrome and the association with environmental barriers and facilitators during the COVID-19 pandemic.

PURPOSE: To compare functioning and environmental aspects before and during physical distancing (DPD) and to determine which social, physical, behavioral and functioning aspects of DPD are correlated. METHODS: Sixteen parents of children/adolescents with Down syndrome (11.38 ± 3.00 years) were surveyed before and DPD. Paired t-tests were used to compare functioning and environmental aspects before and DPD and chi-square tests were used to test associations. RESULTS: There were increases in the frequency (p < 0.001) and involvement (p = 0.01) in home participation and on the impact, noticed by the parents, of the possibility of child to participate in daily activities (p = 0.036), as well as a reduction in social supports perceived by caregivers (p = 0.049). An association was found between the child's socio-emotional difficulties symptoms and practice of physical activity (p = 0.043) and with parents' satisfaction with the level of child's home participation (p = 0.042). CONCLUSION: Functioning can be affected in either positive or negative ways.

Translation of the "F-Words Tools" into Brazilian Portuguese / Tradução dos "Instrumentos das F-Words" para o português brasileiro

Abstract Introduction: The International Classification of Functionality, Disability and Health (ICF) determines that for any health condition, functionality is the result of the multidirectional relationship between the positive aspects of the components of body structures and functions, activities, participation and contextual factors, encompassing personal and environmental factors. Objective: To translate and culturally adapt the "F-Words Tools" into Brazilian Portuguese. Methods: Permission to translate was granted by the authors. After reading and understanding the instruments, a researcher performed a non-certified translation into Brazilian Portuguese. Next, the back translation into English was done by a specialist in both languages without prior knowledge of the original versions. The result of the back translation was sent to the authors of the instrument for verification of semantics and content. Based on the authors' recommendations and the results of translation analyses, there was no need for cultural adaptation. Results: The back translation was approved by the authors, indicating that the Brazilian Portuguese version of all instruments was adequate. The translated titles are: Termo de Compromisso (Agreement), Colagem (Collage), Perfil (Profile) and Folha de Metas (Goal Sheet). The ICF framework was entitled: "The ICF model and My Favorite Words". The material is available free of charge at the CanChild website. Conclusion: The translation into Brazilian Portuguese allows materials to be used in Brazil to disseminate the concepts of the ICF and the "F-words" in clinical and family settings.

Resumo Introdução: A Classificação Internacional de Funciona-lidade, Incapacidade e Saúde (CIF) determina que para qualquer condição de saúde, a funcionalidade é o resultado da relação multidirecional entre os aspectos positivos dos componentes de estruturas e funções do corpo, atividades, participação e fatores contextuais, que englobam os fatores pessoais e ambientais. Objetivo: Traduzir e adaptar culturalmente as "F-Words Tools" para o português brasileiro. Métodos: A tradução foi autorizada pelos autores. Após leitura e entendimento dos instrumentos, uma tradução livre para o português brasileiro foi realizada por uma pesquisadora. Posteriormente, realizou-se a retro-tradução para o inglês por um especialista em ambos os idiomas e sem conhecimento prévio das versões originais. O resultado da retro-tradução foi enviado aos autores do instrumento para verificação de semântica e de conteúdo. Resultados: A aprovação da retro-tradução foi obtida pelos autores, indicando que a versão em português brasileiro de todos os instrumentos estava adequada. Os títulos traduzidos são: Termo de Compromisso (Agreement), Colagem (Collage), Perfil (Profile) e Folha de Metas (Goal Sheet). O modelo da CIF intitulou-se: "O modelo da CIF e Minhas Palavras Favoritas". O material está disponibilizado gratuitamente no site do CanChild. Não foi necessária adaptação cultural, segundo recomendação dos autores e o conteúdo dos instrumentos traduzidos. Conclusão: A tradução para o português brasileiro possibilita o uso desses materiais no Brasil, de modo a disseminar os conceitos da CIF e das "Minhas Palavras Favoritas" em âmbitos clínicos e familiares.