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.

Gross Motor Family Report: Refinement and evaluation of psychometric properties.

AIM: To refine the Gross Motor Family Report (GM-FR) using parents' input and to evaluate its psychometric properties. METHOD: In this measurement study, 12 parents of children and adolescents with cerebral palsy (CP), aged 2 to 18 years, classified in all levels of the Gross Motor Function Classification System (GMFCS), were interviewed about their experience completing the GM-FR (content validity). Parents' feedback was used to refine the measure which was then completed by 146 families to evaluate internal consistency, and discriminative and concurrent validity. Forty-six parents completed the GM-FR again, 7 to 30 days later, to evaluate test-retest reliability. RESULTS: GM-FR scoring, pictures, descriptions, and the total number of items were revised based on parents' feedback. The GM-FR version 2.0 demonstrated high internal consistency (Cronbach's α = 0.99), no floor/ceiling effects, and excellent test-retest reliability (intraclass correlation coefficient = 0.99). GM-FR scores discriminated between GMFCS levels (p < 0.05) and were strongly negatively correlated with GMFCS level (r = -0.92; p < 0.001). GM-FR scores correlated positively and strongly with the Gross Motor Function Measure-66 (r = 0.94; p < 0.001) and the Pediatric Evaluation of Disability Inventory - Computer Adaptive Test mobility domain (r = 0.93; p < 0.001). INTERPRETATION: Active participation of families in the GM-FR's development facilitated creation of a family-friendly instrument. This study provides strong evidence of reliability and validity to support GM-FR use in clinical practice and research for assessing gross motor performance of children and adolescents with CP.

Physical Therapy Services During COVID-19 Pandemic: Perception of Families of Brazilian Children With Physical Disabilities.

PURPOSE: To describe the perspective of caregivers about physical therapy (PT) during the COVID-19 pandemic and the effect of social distancing on the health of children with physical disabilities. METHODS: This survey research used a remote questionnaire to identify the perceptions of caregivers about the effect of the COVID-19 pandemic on the health of children and adolescents with physical disabilities and on PT services. Data were analyzed using the frequency of responses; open-ended questions were analyzed through a hybrid approach to thematic analysis. RESULTS: Caregivers of 47 children with cerebral palsy were included. Although most received regular PT services during the pandemic, worsened children's physical conditions and anxiety were prevalent. Caregivers believed that they lacked technical skills. CONCLUSIONS: Social distancing impacted the health of children with physical disabilities, especially their physical conditions. Identifying facilitators and barriers for PT services can be helpful in future similar scenarios.Video abstract Supplemental Digital Content available at:http://links.lww.com/PPT/A503.

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.

Brain activation patterns underlying upper limb bilateral motor coordination in unilateral cerebral palsy: an fNIRS study.

AIM: To explore cortical activation during bimanual tasks and functional correlates in unilateral cerebral palsy (CP). METHOD: This cross-sectional study included eight participants with unilateral CP (six females, two males; mean age [SD] 20y 10mo [5y 10mo], 13y 8mo-31y 6mo) in Manual Ability Classification System levels II to III and nine age-matched participants with typical development (seven females, two males; mean age [SD] 17y 8mo [5y 7mo], 9y 4mo-24y 2mo). They performed bimanual symmetric squeezing (BSS) and bimanual asymmetric squeezing (BAS) tasks at 1Hz, and a pouring task with dominant hand (DPour) and a pouring task with non-dominant hand (NDPour) at 0.67Hz, all while a custom array of functional near-infrared spectroscopy (fNIRS) optodes were placed over their sensorimotor area. Mixed-effects were used to contrast groups, tasks, and hemispheres (corrected p-values [q] reported). Analysis of variance and t-tests compared performance measures across groups and tasks. RESULTS: Participants with unilateral CP showed greater activation in both hemispheres during BAS (non-lesioned: q<0.001; lesioned: q<0.001), and in the lesioned hemisphere during BSS (q<0.001), DPour (q=0.02), and NDPour (q=0.02) than those with typical development. The lesioned hemisphere in unilateral CP showed more activity than the non-lesioned one (BSS: q=0.01; BAS: q=0.009; NDPour: q=0.04). During BAS, higher cortical activity correlated with more synchronous arm activation (r=0.79; p=0.02); activity lateralized towards the non-lesioned hemisphere correlated with better Pediatric Evaluation of Disability Inventory computer adaptive test scores (r=0.81; p=0.03). INTERPRETATION: Results suggest abnormally increased sensorimotor cortical activity in unilateral CP, with implications to be investigated. WHAT THIS PAPER ADDS: Cortical activity in manual tasks is described with functional near-infrared spectroscopy in typical and atypical cohorts. Activation levels in unilateral cerebral palsy appear to escalate with task difficulty. Increased brain activity may be associated with poorer selective manual control. Specific patterns of brain activity may be related to impaired bimanual function.

Study protocol: functioning curves and trajectories for children and adolescents with cerebral palsy in Brazil - PartiCipa Brazil.

BACKGROUND: Gross motor development curves for children with Cerebral Palsy (CP), grouped by Gross Motor Function Classification System (GMFCS) levels, help health care professionals and parents to understand children's motor function prognosis. Although these curves are widely used in Brazil to guide clinical decision-making, they were developed with Canadian children with CP. Little is known about how these patterns evolve in children and adolescents with CP in low-income countries like Brazil. The PARTICIPA BRAZIL aims to: (i) to identify and draw a profile of functioning and disability of Brazilian children and adolescents with CP by classifying them, for descriptive purposes, with all five valid and reliable functional classifications systems (gross motor function, manual ability, communication function, visual and eating and drinking abilities); (ii) to create longitudinal trajectories capturing the mobility capacity of Brazilian children and adolescents with CP for each level of the GMFCS; (iii) to document longitudinal trajectories in the performance of activities and participation of Brazilian children and adolescents with CP across two functional classification systems: GMFCS and MACS (Manual Abilities Classification System); (iv) to document longitudinal trajectories of neuromusculoskeletal and movement-related functions and exercise tolerance functions of Brazilian children and adolescents with CP for each level of the GMFCS; and (v) to explore interrelationships among all ICF framework components and the five functional classification systems in Brazilian children and adolescents with CP. METHODS: We propose a multi-center, longitudinal, prospective cohort study with 750 Brazilian children and adolescents with CP from across the country. Participants will be classified according to five functional classification systems. Contextual factors, activity and participation, and body functions will be evaluated longitudinally and prospectively for four years. Nonlinear mixed-effects models for each of the five GMFCS and MACS levels will be created using test scores over time to create prognosis curves. To explore the interrelationships among ICF components, a multiple linear regression will be performed. DISCUSSION: The findings from this study will describe the level and nature of activities and levels of participation of children and youth with CP in Brazil. This will support evidence-based public policies to improve care to this population from childhood to adulthood, based on their prognosis.

Zika Virus After Emergency Response: Can the ICF Guide Rehabilitation of Children With Microcephaly?

The outbreak of Zika in Brazil almost 3 years ago had harmful medical, financial, and social consequences for children and their families. It also significantly increased the statistics of Brazilian children with disabilities being followed up in rehabilitation centers. Actions promoting the use of the International Classification of Functioning, Disability and Health (ICF) framework are encouraged in view of the complex health needs identified in this population, which cover all areas of functioning, and gain special relevance when it comes to a vulnerable context. This perspective article discusses the challenges related to the implementation of the ICF in rehabilitation services for children with congenital syndrome.

Effects of Suit-Orthosis on Postural Adjustments During Seated Reaching Task in Children With Cerebral Palsy.

AIM: To investigate suit-orthosis effects on postural sway during anticipatory and compensatory postural adjustments (APA and CPA, respectively) in a seated reaching task performed by children with cerebral palsy (CP). METHODS: Twenty-nine children were divided according to Manual Ability Classification System (MACS) I and II-III. Participants were instructed to reach forward toward an object both in a no-suit condition and in a suit-orthosis condition. RESULTS: Using the suit-orthosis, children at MACS II-III decreased velocity of center-of-pressure (CoP) sway during APA, whereas children at MACS I increased the anterior-posterior CoP displacement during CPA. CONCLUSION: Suit-orthosis improved postural stability in children at MACS II-III during APA. The suit may assist with arm function control during postural sway when preparing to reach for objects. CLINICAL IMPLICATIONS: Suit-orthoses in therapy should be individually prescribed considering the intended activity and person's motor impairment.

Looking beyond Body Structure and Function: ICF Foci and Who Is Being Assessed in Research about Adolescents and Young Adults with Cerebral Palsy-A Scoping Review.

PURPOSE: The purpose of this study is to summarize the ICF foci, looking beyond body structures and function, and to analyze who has been assessed in research about adolescents and young adults (AYAs) with CP in the phase of transition to adulthood. METHOD: Medline, EMBASE, PsycINFO, and CINAHL databases were searched using terms related to cerebral palsy, adolescents/young adults, health development, participation, and independence. Studies including youth with CP (13-30 years old) published in English from 2014 to 2021 were considered. The methods of assessment reported in the included studies were used to identify the ICF foci and who was assessed. RESULTS: In this study, 86 studies were reviewed. The main ICF foci are activity and participation (51% of the studies), personal factors (23%), ICF not covered (14%), ICF not defined (9%), with environmental factors being the least focused ICF component (3%). Most studies assessed AYAs directly (49% of studies). CONCLUSIONS: Activity- and participation-related constructs are the leading research focus of studies, and more attention is needed concerning environmental factors. AYAs are the main source of information, and the perspectives of other key figures are also being valued. To bridge the gap between child and adult health care, a broader view of health development and approaches to explore AYA developmental issues must be taken.

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.

Go Zika Go: feasibility study with modified motorized ride-on cars for the mobility of children with Congenital Zika Syndrome (CZS).

PURPOSE: To explore the feasibility of an intervention using modified ride-on cars in terms of acceptability and potential changes in goal attainment, mobility, social function, and participation of children with Congenital Zika Syndrome (CZS). MATERIALS AND METHODS: A pre- and post-intervention feasibility study was conducted with children with CZS, levels IV and V of the Gross Motor Function Classification System (GMFCS). The intervention consisted of 12 weeks of training (3 times a week for 40 min per session) and 4 weeks of follow-up. The primary outcomes included adherence, satisfaction, and learning in mobility. Secondary outcomes encompassed goal attainment, mobility, social/cognitive function, and participation. Descriptive statistics were performed. To explore potential individual changes with the intervention, Wilcoxon test was used to analyze Pediatric Evaluation of Disability Inventory - Computer Adaptive Test (PEDI-CAT) data and Young Children's Participation and Environment Measure (YC-PEM)/Participation and Environment Measure for Children and Youth (PEM-CY), along with standard error measurements of the PEDI-CAT domains. RESULTS: Four children participated (median age 4.75 years; two females: three at level V on the GMFCS). Adherence was 75% of the total intervention time, and family members reported being satisfied or very satisfied. Children showed gains in learning the use of the modified ride-on cars and an increase in goal attainment after the intervention. Individual changes were observed in the PEDI-CAT domains (mobility and social/cognitive), but there were no significant changes in participation outcomes. CONCLUSIONS: Children with CZS at GMFCS levels IV and V can learn to use motorized ride-on cars, attainment goals, and experience satisfaction.

Motorized mobility for children with Congenital Zika Syndrome and severe physical and cognitive disabilities is feasible and can encourage future interventions focused on activities and participation.This research contributes to the understanding of the potential changes that motorized mobility can have on goal attainment, satisfaction, and learning.Motorized mobility can be a means to enable children with Congenital Zika Syndrome to have opportunities for participation and guarantee their rights.

Adaptive actions of young infants in the task of reaching for objects.

Although several studies have investigated how movement trajectory and arm/hand configuration are adjusted to environmental affordances, the influence of specific object properties on early adjustments has not been studied. In this study, we aimed to determine the combined effect of object size and rigidity on reaching movements in young infants. Sixteen typically developing infants were assessed at 4, 5, and 6 months of age. The infants were presented with four objects: two soft and two rigid, which were either small or large. The results indicate that with age reaching movements became straighter, the arm control during the final phase was improved, and the grasping success increased. Object size and rigidity collectively influenced the proximal adjustments, grasping, adjustment time, and the number of movement units. The results suggest that early in the infants are able to modify their movement strategies based on object affordances.

Telehealth in paediatric physical therapy education: Strategies and perceptions of interns and caregivers of children with disabilities in Brazil.

AIMS: To describe the implementation of paediatric rehabilitation telehealth at a physical therapy (PT) unit in Brazil during the COVID-19 pandemic and to describe the perception about this modality by two groups: (1) undergraduate PT students using telehealth during their clinical rotations in this unit and (2) the caregivers of children with disabilities receiving the services. METHODS: Twenty-one PT interns (19 females; 25 ± 2 years of age) and seven caregivers (seven females; 40 ± 6 years of age) of seven children with disabilities (five females; 10 ± 4 years of age; five children diagnosed with cerebral palsy) responded to an online questionnaire about their experience with the telehealth programme. Participant attendance and frequency of objective responses were reported descriptively; open-ended responses were analysed qualitatively and grouped according to broad themes. RESULTS: 71.4% of interns rated telehealth as an excellent or good experience, and 28.6% did not appreciate it. In addition, 28.6% of them thought that telehealth should be part of the mandatory internship. Regarding caregivers, 85.8% judged the telehealth programme as excellent or good. Both interns and caregivers cited pros and cons related to technology, professional resources, communication skills and caregiver-related aspects, among others. CONCLUSIONS: Specific teaching strategies had to be utilised for implementation of telehealth. Despite being a novel modality for interns and caregivers, telehealth was well accepted.

Cognitive-Motor Dual-Task Costs on Postural Sway During Sit-to-Stand Movement in Children With Cerebral Palsy.

OBJECTIVE: The purpose of this study was to investigate the cognitive-motor dual-task costs (DTCs) on postural sway of children with typical development (TD) and children with cerebral palsy (CP) during the sit-to-stand movement. METHODS: Twenty children with TD (mean age = 9.35 years) and 17 children with CP (mean age = 8.29 years) randomly performed 3 test conditions: simple motor task, low-complexity cognitive-motor dual-task, and high-complexity cognitive-motor dual-task. The sit-to-stand movement was divided into 3 phases for data analysis: preparation (P1), rising (P2), and stabilization (P3). For each of these phases, the DTCs were calculated by the percentage change in the center of pressure area of sway, velocity of sway, and duration variables between the simple and dual-task conditions. Analysis of variance was applied to test the group, task conditions, and interaction effects. RESULTS: Children with CP had lower DTC than children with TD in area of sway in P1 and P2 variables; anteroposterior velocity of sway in P1, P2, and P3; and duration in P3. Children with TD had higher DTC in the high-complexity cognitive-motor dual-task than in the low complexity one. Children with CP did not show adaptations between the dual-task conditions, showing no differences in DTCs. CONCLUSION: The simultaneous performance of a motor task and a cognitive task seems to affect children with CP and children with TD differently, but the effects depend on the specific demands of each task. These results demonstrate the importance of rehabilitation actions to place demands involving a variety of postural sway strategies. IMPACT: DTCs are different for children with TD and children with CP. Assessment and rehabilitation strategies must take into account the postural sway behavior of these children.

Rehabilitation Practices Delivered by Physical and Occupational Therapists to Brazilian Children With Congenital Zika Syndrome: A Cross-Sectional Study.

INTRODUCTION: Congenital Zika syndrome (CZS) is a health condition that has affected the development of thousands of children in Brazil. Because it is a new condition, its understanding is an ongoing process. Therefore, it is important to know the rehabilitation interventions being delivered to improve the functioning of these children. We aimed to describe the practices of physical therapists (PTs) and occupational therapists (OTs) who provide follow-up care for children with CZS in Brazil. METHODS: This cross-sectional study included PTs and OTs who assist children with CZS in Brazil. An online questionnaire was used to verify the participants' personal characteristics and professional work environment, as well as the rehabilitation programs they implemented in Brazil for children with CZS. Data were analyzed using descriptive statistics. RESULTS: A total of 116 professionals (79 PT and 37 OT) who work mainly in public health services (81.9%) participated in the study. Of these, 24.1% plan interventions based on reading scientific articles, 66.4% did not report using the biopsychosocial model, 52.6% do not perform any assessments before starting an intervention, 31.9% use neurodevelopmental treatment, and 22.4% use sensorimotor stimulation interventions. The majority of the interventions are delivered 1 to 2 times a week, lasting up to 1 hour. CONCLUSIONS: Professional training and knowledge translation strategies are needed to implement evidence-based practices and improve the quality of rehabilitation programs for Brazilian children with CZS.

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.