Cross-cultural adaptation of the Rotterdam Transition Profile to Brazilian Portuguese: measuring autonomy in participation of Brazilian youth with cerebral palsy.

BACKGROUND: Autonomy in participation of young adults with cerebral palsy (CP) is not well understood due to the lack of appropriate instruments, especially for the Brazilian population. The Rotterdam Transition Profile (RTP) categorizes autonomy in Participation (education, employment, finances, housing, leisure, intimate relationships, sexuality, transportation) and Health Services (care demands, services and aids, and rehabilitation services) domains. OBJECTIVES: To cross-culturally adapt the RTP for use in Brazil, and to describe the levels of autonomy in participation and associated factors of Brazilian youth with CP. METHODS: RTP was translated and content validity was investigated through an expert panel (n = 4 researchers and n = 4 clinicians); 30 adolescents and young adults with CP provided data for construct validity and internal consistency analysis. To analyze influencing factors, 56 youth with CP, mean age 25 years (SD = 6.9 years), with good cognitive level remotely responded to the RTP, sociodemographic information, and functional classifications (gross motor, manual ability). RESULTS: Following translation, content and construct validity were established, with changes made to improve the clarity of items. Cronbach's alpha (0.82) was considered good and test-reliability was fair to good for most items. High levels of autonomy were found in the areas of Leisure and Rehabilitation, with the lowest proportion of participants with autonomy in Housing, Intimate Relationships, and Finances. Autonomy in participation was associated with age, gross motor and manual ability classifications, and with context-related factors. CONCLUSION: The Brazilian Portuguese version of the RTP was considered valid and reliable. Findings will support transition planning for young people with CP.

Geographic intelligence to investigate community participation: a scoping review.

PURPOSE: To understand the applicability and unique contributions of global positioning system (GPS) and geographic information system (GIS) technologies to investigate individuals' participation in the community. METHODS: A scoping review was conducted to summarize studies that employed GPS and/or GIS to assess community participation. Systematic literature searches were performed using nine electronic databases, up to April 2022. Two independent reviewers screened studies for eligibility and extracted data from the selected studies. RESULTS: The searches retrieved 628 articles, of which 36 met the inclusion criteria. In 31 studies, a GPS unit or GPS-enabled device monitored the community mobility of individuals with different health conditions. Tracking periods varied from five hours to 30 consecutive days. The spatiotemporal parameters obtained from satellite-based data provided information about individuals' presence in the community. Most studies combined GPS with other measuring tools (self-report diaries/questionnaires, qualitative interviews) to capture a broader description of community participation. CONCLUSIONS: GPS and GIS are viable approaches for advancing research as they provide unique information about community participation not easily captured by other methods. The combination of available methods comprehensively address the physical and social dimensions of this construct.IMPLICATIONS FOR REHABILITATIONGlobal positioning system (GPS) and geographic information system (GIS) technology allows direct and real-time quantification of patterns of individuals' community mobility.The geographic area where individuals participate in daily living activities complements information from self-report diaries/questionnaires.Combining GPS technology with self-report diaries/questionnaires allows a broader description of individuals' community participation, addressing respectively both its physical and social dimensions.Knowledge of individuals' access to and involvement in community locations/situations may help therapists design interventions to improve community participation.

Determinants of Time to Care for Children and Adolescents With Disabilities.

Time use studies uncover the organization of daily routine of families of children with disabilities. The objective of this study is to identify determinants of time spent caring for children/adolescents with cerebral palsy (CP), autism spectrum disorder (ASD), and typical development (TD). Participants were caregivers of children/adolescents with/without disability. Structural equation modeling tested a proposed model of time spent in child care. The variables in the model were as follows: questionnaire (families' socioeconomic status [SES]), children's functioning (The Pediatric Evaluation of Disability Inventory-Computer Adaptive Test [PEDI-CAT]); hours of care (daily diaries), number of adaptations used, and help with child care (parents' report). Distinct variable combinations explained 78% of the variation in the time to care (TD model), followed by 42% (ASD) and 29% (CP). Adaptations indirectly affected time to care through its effect on functioning (CP); family's SES affected functioning through its effect on adaptation use (ASD). In conclusion, knowledge of factors affecting caregivers' time spent on children's care help occupational therapists implement family-centered strategies.

Children with congenital Zika syndrome: symptoms, comorbidities and gross motor development at 24 months of age.

BACKGROUND: Children with congenital Zika syndrome (CZS) maintain severe motor impairments at the end of the first year of life. Presence of certain symptoms and comorbidities increase these children's vulnerability. AIMS: To evaluate gross motor function of a group of Brazilian children with CZS at 24 months of age and to investigate the association between the presence of CZS symptoms and comorbidities with gross motor development. METHODS AND PROCEDURES: Fifty children with CZS participated in the study. Information was collected from medical charts, and gross motor development was evaluated by the Gross Motor Function Measure (GMFM)-88. GMFM-88 scores were compared among comorbid groups. Three subgroups of children were identified by cluster analysis, based on information from head circumference at birth, symptoms, comorbidities and gross motor function. OUTCOMES AND RESULTS: Significant associations (p < 0.001) were observed between number of comorbidities/symptoms and dimensions A (r = -0.57) and B (r = -0.58) of the GMFM-88. Children were grouped into 3 clusters, with different gross motor skills. Children with epilepsy and dysphagia composed the cluster with smaller median scores for dimensions A and B of the GMFM-88. CONCLUSIONS AND IMPLICATIONS: The presence of CZS symptoms and comorbidities compromise the gross motor repertoire of children with CZS at 24 months.

Interest of children with unilateral spastic cerebral palsy in bimanual daily activities.

Background: Many bimanual activities are challenging for children with unilateral spastic cerebral palsy (USCP).Aims: To investigate hand use by children with USCP in daily activities of their interest.Material e methods: Sample included twenty children with USCP, aged 8 to 14 years old. Participants identified bimanual activities of their interest and no interest. Children's performance on these activities were videotaped. Videos were coded according to the affected extremity's forms and effectiveness of use, caregiver provision and types of assistance, and child's satisfaction. The relative proportions of each parameter were compared using the signed-rank test, considering the time spent in activities of interest and no interest.Results: We analyzed 116 activities. We found effects of interest in children's satisfaction (p = 0.003) and on the type of assistance (p = 0.03). Specifically, children demonstrated longer periods of satisfaction performing activities of their interest and caregiver physical assistance was provided for longer periods of time in activities of no interest. There were no effects on the other parameters.Conclusions: A model that illustrates the impact of a child's interest on the performance of daily bimanual activities is presented, grounded in our results and in the literature.

Family-Centered Early Intervention Program for Brazilian Infants with Congenital Zika Virus Syndrome: A Pilot Study.

Aims: To evaluate the effects of a 16-week program based on Goals-Activity-Motor Enrichment (GAME) principles on infants with congenital Zika virus syndrome (CZS)'s mother report of functional goal achievement, motor and cognitive abilities, home enrichment, and parents' perceptions regarding the service provided. Methods: Quasi-experimental study with infants (n = 32) with CZS and their mothers. Twenty-two infants composed the GAME-based group and 10 were included in the control group. The primary outcome measure was the Canadian Occupational Performance Measure. Secondary outcome measures were the Bayley Scales of Infant and Toddler Development, the Affordances in the Home Environment for Motor Development-Infant Scale, and the Measure of Processes of Care. All measures were performed by blinded assessors. Results: Mothers of infants in the GAME-based group reported significant improvements in their infants' performance on functional priorities (p = 0.0001) and satisfaction with their infants' performance (p = 0.0001), the extent in which services promoted enabling and partnership (p = 0.021), provided general information (p = 0.039), specific information (p = 0.0001), and an enriched home environment (p = 0.0001). Infants in both groups did not improve in motor or cognitive abilities. Conclusions: A family-centered early intervention program based on GAME principles improved mothers' individualized outcomes and enriched infants with CZS's environment. Future studies should elucidate long-term benefits of interventions for this population.

Vai jogar? Fatores que influenciam a participação de adolescentes com paralisia cerebral na educação física escolar / Are you playing? Factors influencing participation of adolescents with cerebral palsy in school physical education / vas a jugar? Factores que influencian la participación de adolescentes con parálisis cerebral en la educación física escolar

O objetivo do estudo foi compreender fatores que influenciam a participação de adolescentes com paralisia cerebral (PC) na Educação Física Escolar. Dez adolescentes com PC foram entrevistados utilizando roteiro de entrevista semiestruturado, cujo conteúdo foi gravado, transcrito e submetido à Análise de Conteúdo. Três categorias e sete subcategorias emergiram dessa análise. Verificou-se que fatores ambientais (atitudinais e físicos) e pessoais influenciaram a participação. Especificamente, as atitudes de colegas, professores e monitores, bem como a disponibilidade de dispositivos de auxílio para marcha e a acessibilidade física da escola foram elementos importantes que impactaram, negativamente ou positivamente, a participação na Educação Física. Características pessoais, como medo de realizar as atividades e baixa ou alta percepção de autoeficácia, também influenciaram o engajamento dos adolescentes na Educação Física e devem ser consideradas por profissionais da Educação Física e reabilitação

The aim of the study was to understand factors influencing participation of adolescents with cerebral palsy (CP) in school Physical Education (PE). Semi-structured interviews were conducted with ten adolescents with CP. The interviews were recorded, transcribed and submitted to content analysis, resulting in three categories and seven subcategories. Environmental (attitudinal and physical) and personal factors influenced participation. Specifically, attitudes of peers, teachers and instructors, and availability of mobility devices and physical accessibility were important elements that influenced ­ negatively or positively ­ participation in PE. Personal characteristics such as fear of performing activities and low or high self-efficacy perception also influenced the engagement of adolescents in PE and should be considered by teachers and rehabilitation professionals

El objetivo del estudio es comprender factores que influencian la participación de adolescentes con parálisis cerebral (PC) en la Educación Física escolar. Diez adolescentes con PC fueron entrevistados utilizando un modelo de entrevista semiestructurado, cuyo contenido fue grabado, transcrito y sometido al análisis de contenido. Tres categorías y siete subcategorías surgieron de este análisis. Se verificó que factores ambientales (actitudinales y físicos) y personales influenciaron la participación. Específicamente, las actitudes de colegas, profesores y monitores, así como la disponibilidad de aparatos de ayuda para la marcha y la accesibilidad física de la escuela, fueron elementos importantes que han impactado, negativamente o positivamente, sobre la participación en la Educación Física. Características personales, como miedo a realizar las actividades y baja o alta percepción de autoeficacia, también influyeron en la participación de los adolescentes en la Educación Física y deben ser consideradas por profesionales de la Educación Física y rehabilitación

Mobilidade sobre rodas: a percepção de pais de crianças com paralisia cerebral - Wheeled mobility: the perception of parents of children with cerebral palsy / Wheeled mobility: the perception of parents of children with cerebral palsy

Children with cerebral palsy (CP) often use mobility devices as facilitators of their functionality and independence, and these devices may have a positive impact on their caregivers' quality of life. Considering a family-centered approach, parents assume a decisive role in different stages of the therapeutic process, guiding several actions of the rehabilitation professionals during the search, development and/or adaptation of equipment that meet the specific needs of customers. The aim of this research was to understand the perceptions of parents of children with CP on the use of the wheelchair in the daily routines of their children. This qualitative study used semi-structured interviews with 16 parents of CP children who were wheelchair users assisted at "Associação Mineira de Reabilitação". Content analysis grounded the categorization of themes that emerged from the interviews. The results expressed in themes such as "The look on the daily routine" and "The look on the equipment" pointed out characteristics related to the benefits of the use of the wheelchair in promoting child participation at home, at school, and in community environments, as well as different features of wheelchairs that facilitate or hamper their use in children's daily routine.(AU)

Crianças com paralisia cerebral (PC) frequentemente utilizam dispositivos de mobilidade como facilitadores de sua funcionalidade e independência, o que impacta positivamente também na qualidade de vida do cuidador. Considerando a abordagem da prática centrada na família, os pais assumem papel decisivo em diferentes etapas do processo terapêutico, norteando diversas ações de profissionais da área da reabilitação na busca, desenvolvimento e/ou adaptação de equipamentos que atendam às necessidades específicas da clientela interessada. Neste estudo objetivou-se compreender a percepção dos pais de crianças com PC sobre a utilização da cadeira de rodas no cotidiano de seus filhos. O presente estudo qualitativo utilizou entrevistas semiestruturadas com 16 pais de crianças cadeirantes com paralisia cerebral, atendidas na Associação Mineira de Reabilitação. Análise de conteúdo pautou a categorização de temas que emergiram das entrevistas. Os resultados expressos nas categorias temáticas "O olhar sobre o uso cotidiano" e "O olhar sobre o equipamento" apontaram características relacionadas aos benefícios do uso da cadeira de rodas na promoção da participação da criança nos ambientes de casa, escola e comunidade, bem como diferentes aspectos da cadeira de rodas que favoreceram e dificultaram a sua utilização no dia a dia dessas crianças.(AU)

Mobilidade sobre rodas: a percepção de pais de crianças com paralisia cerebral / Wheeled mobility: the perception of parents of children with cerebral palsy

Children with cerebral palsy (CP) often use mobility devices as facilitators of their functionality and independence, and these devices may have a positive impact on their caregivers' quality of life. Considering a family-centered approach, parents assume a decisive role in different stages of the therapeutic process, guiding several actions of the rehabilitation professionals during the search, development and/or adaptation of equipment that meet the specific needs of customers. The aim of this research was to understand the perceptions of parents of children with CP on the use of the wheelchair in the daily routines of their children. This qualitative study used semi-structured interviews with 16 parents of CP children who were wheelchair users assisted at "Associação Mineira de Reabilitação". Content analysis grounded the categorization of themes that emerged from the interviews. The results expressed in themes such as "The look on the daily routine" and "The look on the equipment" pointed out characteristics related to the benefits of the use of the wheelchair in promoting child participation at home, at school, and in community environments, as well as different features of wheelchairs that facilitate or hamper their use in children's daily routine.

Crianças com paralisia cerebral (PC) frequentemente utilizam dispositivos de mobilidade como facilitadores de sua funcionalidade e independência, o que impacta positivamente também na qualidade de vida do cuidador. Considerando a abordagem da prática centrada na família, os pais assumem papel decisivo em diferentes etapas do processo terapêutico, norteando diversas ações de profissionais da área da reabilitação na busca, desenvolvimento e/ou adaptação de equipamentos que atendam às necessidades específicas da clientela interessada. Neste estudo objetivou-se compreender a percepção dos pais de crianças com PC sobre a utilização da cadeira de rodas no cotidiano de seus filhos. O presente estudo qualitativo utilizou entrevistas semiestruturadas com 16 pais de crianças cadeirantes com paralisia cerebral, atendidas na Associação Mineira de Reabilitação. Análise de conteúdo pautou a categorização de temas que emergiram das entrevistas. Os resultados expressos nas categorias temáticas "O olhar sobre o uso cotidiano" e "O olhar sobre o equipamento" apontaram características relacionadas aos benefícios do uso da cadeira de rodas na promoção da participação da criança nos ambientes de casa, escola e comunidade, bem como diferentes aspectos da cadeira de rodas que favoreceram e dificultaram a sua utilização no dia a dia dessas crianças.

Perfil de crianças com deficiência atendidas na Associação Mineira de Reabilitação: características sociodemográficas, clínicas e funcionais / Profile of disabled children assisted at Associação Mineira de Reabilitação: sociodemographic, clinical and functional characteristics

O número crescente de crianças com deficiência atendidas em centros de reabilitação gera a necessidade de informações sobre essa clientela, de forma a direcionar ações e intervenções terapêuticas. O objetivo do presente estudo foi caracterizar o perfil de crianças assistidas na Associação Mineira de Reabilitação (AMR), quanto a características sociodemográficas, clínicas e funcionais. Foram analisados prontuários das 384 crianças atendidas na AMR. As informações sociodemográficas das crianças e suas famílias incluíram sexo e idade da criança, idade de admissão na AMR, moradia, renda familiar, benefícios, estado civil da mãe, escolaridade dos pais, inserção da criança na escola, encaminhamento à instituição, tipo de atendimento. As características clínicas foram obtidas por meio do diagnóstico clínico, e as características funcionais, pelo Inventário de Avaliação Pediátrica de Incapacidade (PEDI) e pelo Sistema de Classificação da Função Motora Grossa (GMFCS). Os dados foram analisados com a estatística de ANOVA. Resultados revelaram que a maioria das crianças foi encaminhada para a instituição até os 2 anos de idade, provenientes de famílias de baixa renda e de baixa escolaridade, e possuía diagnóstico de paralisia cerebral com grave comprometimento motor. As crianças com condições de saúde de origem medular (mielomeningocele) e neuromuscular (paralisia braquial obstétrica) apresentaram escores de funcionalidade superiores quando comparadas às crianças com paralisia cerebral e às crianças com síndromes genéticas. Tais informações podem nortear profissionais de reabilitação para proverem ações de intervenção adequadas, considerando as características específicas das crianças e das famílias atendidas.(AU)

The increasing number of children with disabilities in rehabilitation centers leads to the need of information regarding this population, in order to guide therapeutic actions and interventions. The purpose of the study was to describe the profile of children assisted at Associação Mineira de Reabilitação (AMR), regarding to sociodemographic, clinical and functional characteristics. Information from 384 clinical charts of children assisted was analyzed. The sociodemographic information of children and their families included children’s gender and age, age of admission at AMR, place of living, family financial outcome, benefits, mothers’ marital status, parents’ educational level, participation at school, referral at AMR, type of service received. Clinical characteristics were obtained considering the clinical diagnosis and the functional information through the Pediatric Evaluation of Disability Inventory (PEDI) and the Gross Motor Function Classification System (GMFCS). Data were analyzed with ANOVA. Results show that most of children were referred to AMR before they were 2 years old. They were from families with low socioeconomic and educational levels, and most of them had the diagnosis of cerebral palsy, with severe level of motor impairments. Children with spinal cord (myelomeningocele) and neuromuscular (obstetric brachial palsy) conditions presented superior functional scores compared to children with cerebral palsy and genetic syndromes. Such information can guide rehabilitation professionals to provide adequate rehabilitation services, considering the specificities of these children and families.(AU)

Perfil de crianças com deficiência atendidas na Associação Mineira de Reabilitação: características sociodemográficas, clínicas e funcionais / Profile of disabled children assisted at Associação Mineira de Reabilitação: sociodemographic, clinical and functional characteristics

O número crescente de crianças com deficiência atendidas em centros de reabilitação gera a necessidade de informações sobre essa clientela, de forma a direcionar ações e intervenções terapêuticas. O objetivo do presente estudo foi caracterizar o perfil de crianças assistidas na Associação Mineira de Reabilitação (AMR), quanto a características sociodemográficas, clínicas e funcionais. Foram analisados prontuários das 384 crianças atendidas na AMR. As informações sociodemográficas das crianças e suas famílias incluíram sexo e idade da criança, idade de admissão na AMR, moradia, renda familiar, benefícios, estado civil da mãe, escolaridade dos pais, inserção da criança na escola, encaminhamento à instituição, tipo de atendimento. As características clínicas foram obtidas por meio do diagnóstico clínico, e as características funcionais, pelo Inventário de Avaliação Pediátrica de Incapacidade (PEDI) e pelo Sistema de Classificação da Função Motora Grossa (GMFCS). Os dados foram analisados com a estatística de ANOVA. Resultados revelaram que a maioria das crianças foi encaminhada para a instituição até os 2 anos de idade, provenientes de famílias de baixa renda e de baixa escolaridade, e possuía diagnóstico de paralisia cerebral com grave comprometimento motor. As crianças com condições de saúde de origem medular (mielomeningocele) e neuromuscular (paralisia braquial obstétrica) apresentaram escores de funcionalidade superiores quando comparadas às crianças com paralisia cerebral e às crianças com síndromes genéticas. Tais informações podem nortear profissionais de reabilitação para proverem ações de intervenção adequadas, considerando as características específicas das crianças e das famílias atendidas.

The increasing number of children with disabilities in rehabilitation centers leads to the need of information regarding this population, in order to guide therapeutic actions and interventions. The purpose of the study was to describe the profile of children assisted at Associação Mineira de Reabilitação (AMR), regarding to sociodemographic, clinical and functional characteristics. Information from 384 clinical charts of children assisted was analyzed. The sociodemographic information of children and their families included children’s gender and age, age of admission at AMR, place of living, family financial outcome, benefits, mothers’ marital status, parents’ educational level, participation at school, referral at AMR, type of service received. Clinical characteristics were obtained considering the clinical diagnosis and the functional information through the Pediatric Evaluation of Disability Inventory (PEDI) and the Gross Motor Function Classification System (GMFCS). Data were analyzed with ANOVA. Results show that most of children were referred to AMR before they were 2 years old. They were from families with low socioeconomic and educational levels, and most of them had the diagnosis of cerebral palsy, with severe level of motor impairments. Children with spinal cord (myelomeningocele) and neuromuscular (obstetric brachial palsy) conditions presented superior functional scores compared to children with cerebral palsy and genetic syndromes. Such information can guide rehabilitation professionals to provide adequate rehabilitation services, considering the specificities of these children and families.

Participação de alunos com deficiência física no contexto da escola regular - revisão de literatura / Participation of students with physical disabilities in mainstream schools - literature review

A educação inclusiva é uma realidade vigente, que consiste não somente na socialização da criança com deficiência, mas também na criação de oportunidades para que a mesma possa participar dos diversos contextos da escola. Para tanto, é fundamental o preparo dos profissionais envolvidos nesse processo, de forma que a criança receba o suporte necessário e adequado. O objetivo deste estudo é analisar, através de uma revisão da literatura, evidências disponíveis sobre a participação da criança com deficiência física no contexto da escola regular. Foram realizadas buscas em bases eletrônicas de dados e em revistas de educação. As palavras chaves utilizadas foram: paralisia cerebral ou deficiência física, inclusão escolar, participação escolar e as respectivas traduções destes termos na língua inglesa. Oito artigos foram incluídos no estudo. A síntese da evidência aponta que os principais fatores que contribuíram para a participação da criança com deficiência física no ambiente escolar referiram-se às habilidades motoras, especificamente mobilidade, à comunicação, ao nível de comprometimento motor e à idade. Barreiras que restringiram a participação, como falta de acesso e inadequação do espaço físico das escolas foram identificadas.

The inclusive education is a current reality, which is not only for socialization of children with disabilities, but also for the creation of opportunities to enable the participation in different school contexts. Therefore, it is essential to prepare professionals involved in this process so that the child may have the necessary and appropriate support. From this perspective, the objective of the study is to analyze, by means of a literature review, the evidence available about participation of children with physical disabilities in the context of regular school. Searches were performed in electronics databases and in educational journals. The key words used were: cerebral palsy or physical disabilities, school inclusion and school participation and the respective translated terms to portuguese. Eight articles were included in the study. The synthesis of the evidence showed that the main factors that contributed to the participation of children with physical disabilities in the school environment were motor skills, specifically mobility and communication, level of motor impairment and age. Barriers that restricted participation, such as lack of access and inadequate of physical space at schools were also identified.