The burden of global outbreaks: Photos of the daily lives of children with congenital Zika syndrome during the COVID-19 pandemic.

INTRODUCTION: In Brazil, more than 3500 children with congenital Zika syndrome (CZS) face difficulties participating in activities of daily living, which may be aggravated by health emergencies, such as the COVID-19 pandemic. Participation could be defined as the individual's involvement in daily life situations, and participation restrictions are problems that may arise in involvement in everyday situations. AIM: To explore the daily lives of children with CZS during the COVID-19 pandemic using photographic narratives captured by mothers and discuss possible strategies to improve participation results. METHODS: In this participatory action research, seven young Brazilian mothers acted as co-researchers using photovoice to describe the experiences of their children with CZS (from 2 to 5 years old). Also, mothers contributed to validate the contents. The research was conducted online and included the following steps: pilot study, recruitment, individualized training, sociodemographic interview, photovoice training, photo taking, focus group for contextualization, data transcription and analysis and validation of analyses by the mothers. RESULTS: Content analysis revealed five categories that influenced the participation of the children: participation preferences, family relationships, access to healthcare, access to education and social isolation. Regarding participation preferences, mothers reported their children's desire to play with peers and family members and have autonomy. Mothers described the family environment as a happy, peaceful and safe place for the children. Lack of therapy was perceived to negatively impact the health of children; thus, treatments were considered essential for child development. Access to education included accessibility of remote education and a perceived lack of infrastructure and pedagogical preparation. Last, social isolation due to COVID-19 directly affected the daily lives and behaviour of the children, interrupting therapies and medical appointments. CONCLUSION: The photos and narratives captured several aspects of the daily lives of children with CZS impacted by the COVID-19 pandemic, reinforcing the importance of considering the negative effects of social isolation and offering education and social assistance to promote participation and integral health. PATIENT/PUBLIC CONTRIBUTION: Consistent with a participatory action research framework, Mothers acted as co-researchers and participated in all stages of the research, especially in validating the data analysed by the researchers.

I Would Like to Do It Very Much! Leisure Participation Patterns and Determinants of Brazilian Children and Adolescents With Physical Disabilities.

PURPOSE: To describe the patterns, preferences, and predictors of participation in leisure activities of children and young people with physical disabilities from Brazil. METHODS: This is a cross-sectional study that included 50 children/young people with physical disabilities from the southeast of Brazil. The children were assessed using the Children's Assessment of Participation and Enjoyment and Preferences for Activities. RESULTS: Children/young people participated in an average of 38% of the activities, with a greater number and frequency of informal, recreational, social, and self-improvement activities. The average frequency of participation in the activities was twice in the previous 4 months. The enjoyment in the participated activities was high. There was a greater preference for recreational, social, and physical activities. Age and functional classification were predictors of participation. CONCLUSION: This study of children with disabilities from the southeast of Brazil supports studies in other low- and middle-income countries, demonstrating low diversity and intensity of participation in leisure activities, but with high levels of enjoyment.

My child is growing and now? Exploring the environmental needs of children with congenital Zika syndrome according to their caregivers' perceptions.

INTRODUCTION: Promoting social inclusion of children with congenital Zika virus syndrome (CZS) is challenging, mostly, when there is a transport problem, low access to information and a long distance between the house and health services. Participation can be understood as involvement in a life situation and is strongly influenced by physical, social and attitudinal environmental factors; however, was still little explored in the case of children with CZS. In this sense, this study aimed to explore the perception of caregivers about the environmental needs of children with CZS, differentiating barriers and facilitators. METHODS: This is qualitative research. Thematic analysis was used to identify the environmental needs perceived by caregivers of children with CZS. The patient public involvement (PPI) approach was incorporated with the purpose of validating the data analysis performed by the researchers. After this step, the data were categorized in terms of barriers and facilitators and validated by the group of researchers. RESULTS: A relevant environmental need reported by caregivers as a barrier was social support for children with CZS. Ableism was also evidenced as an important attitudinal barrier. Health services were essential for the lives of children with CZS and the availability of auxiliary devices as facilitators of participation. Environmental factors related to medication and food routines were, for the most part, facilitators. CONCLUSION: This study contributes to critical approaches to the impacts linked to environmental factors of children with CZS, recognition of these children is an evolving process and fundamental to basic rights for adequate living in society. The data point to the need to implement public policies aimed at children with CZS, as well as the availability of qualified professionals to apply family-centred care and skills-focused management. Building friendly environments that promote broad social participation will contribute to the healthy growth of children with CZS. PATIENT OR PUBLIC CONTRIBUTION: Six caregivers (20% of the caregivers) as part of the PPI approach were contacted and participated in individual virtual meetings to discuss the results of the thematic analysis regarding the environmental needs of children with CZS.

Early intervention evidence for infants with or at risk for cerebral palsy: an overview of systematic reviews.

AIM: To perform an overview of systematic reviews and more recent randomized controlled trials (RCTs) on early motor interventions in infants aged 0 to 3 years with or at risk of cerebral palsy to inform current clinical and research efforts and provide a benchmark to assess future interventions ideally initiated within the first 6 months. METHOD: Standardized searches of the PubMed, Embase, Scopus, and Web of Science databases were conducted for systematic reviews (2009-2020) and RCTs (2015-2020). RESULTS: From 840 unique records, 31 full texts were reviewed, yielding three systematic reviews encompassing 46 studies, 16 with comparison groups, and six additional RCTs that met the criteria. Two enrichment- and activity-based approaches had medium effect sizes on motor development, only one with low risk of bias; two others had large task-specific effect sizes but some bias concerns; and three enriched environment studies with some bias concerns had medium effect sizes on cognitive development. Most had small or no effect sizes, bias concerns, and uncertain diagnostic determinations. INTERPRETATION: Data synthesis revealed limited data quantity and quality, and suggest, although not yet confirmed, greater benefit from early versus later intervention. Research efforts with greater early diagnostic precision and earlier intervention are accelerating, which may transform future outcomes and practices. What this paper adds For over 50% of trials within the reviews, the intervention was compared to standard care with only two showing efficacy. Similar to results in older children, constraint-induced movement therapy (CIMT) emerged as efficacious with high effect sizes. CIMT was not superior to similarly intense bimanual training or occupational therapy. Goals-Activity-Motor Enrichment intervention initiated before 5 months of age was superior to equally intense standard care. Several other enriched environment strategies promoted cognitive and/or motor development.

Systematic Review of Clinical Guidelines Related to Care of Individuals With Cerebral Palsy as Part of the World Health Organization Efforts to Develop a Global Package of Interventions for Rehabilitation.

OBJECTIVE: The World Health Organization's (WHO) Rehabilitation 2030 initiative is working to develop a set of evidence-based interventions selected from clinical practice guidelines for Universal Health Coverage. As an initial step, the WHO Rehabilitation Programme and Cochrane Rehabilitation convened global content experts to conduct systematic reviews of clinical practice guidelines for 20 chronic health conditions, including cerebral palsy. DATA SOURCES: Six scientific databases (Pubmed, EMBASE, Scopus, Web of Science, PEDro, CINAHL), Google Scholar, guideline databases, and professional society websites were searched. STUDY SELECTION: A search strategy was implemented to identify clinical practice guidelines for cerebral palsy across the lifespan published within 10 years in English. Standardized spreadsheets were provided for process documentation, data entry, and tabulation of the Appraisal of Guidelines for Research and Evaluation (AGREE II) tool. Each step was completed by 2 or more group members, with disagreements resolved by discussion. Initially, 13 guidelines were identified. Five did not meet the AGREE II established threshold or criteria for inclusion. Further review by the WHO eliminated 3 more, resulting in 5 remaining guidelines. DATA EXTRACTION: All 339 recommendations from the 5 final guidelines, with type (assessment, intervention, or service), strength, and quality of evidence, were extracted, and an International Classification of Functioning, Disability and Health Functioning (ICF) category was assigned to each. DATA SYNTHESIS: Most guidelines addressed mobility functions, with comorbid conditions and lifespan considerations also included. However, most were at the level of body functions. No guideline focused specifically on physical or occupational therapies to improve activity and participation, despite their prevalence in rehabilitation. CONCLUSIONS: Despite the great need for high quality guidelines, this review demonstrated the limited number and range of interventions and lack of explicit use of the ICF during development of guidelines identified here. A lack of guidelines, however, does not necessarily indicate a lack of evidence. Further evidence review and development based on identified gaps and stakeholder priorities are needed.

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.

I Want to Play: Children With Cerebral Palsy Talk About Their Experiences on Barriers and Facilitators to Participation in Leisure Activities.

PURPOSE: To explore how children with cerebral palsy (CP) experience participation in leisure activities and to describe the environmental barriers and facilitators. METHODS: Sixteen children with cerebral palsy aged 7 to 17 years participated in 3 focus groups. Data were analyzed thematically by 3 researchers on the basis of the International Classification of Functioning, Disability and Health. RESULTS: A total of 38 International Classification of Functioning, Disability and Health categories were identified (4 linked to Body functions; 2 linked to Body structures; 8 linked to Activities & Participation, and 24 to Environmental factors: 10 facilitators and 14 barriers). The most mentioned categories were Voluntary movement control functions, Functions related to gait pattern, Structure of upper arm, Recreation and leisure, Nuclear family and finally, and Individual attitudes of acquaintances. CONCLUSIONS: The main barriers identified by children with cerebral palsy highlight aspects of the physical, social, and attitudinal environment that could be modified to enhance participation in leisure activities.

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.

Pain, motor function and health-related quality of life in children with cerebral palsy as reported by their physiotherapists.

BACKGROUND: Children and adolescents with cerebral palsy suffer from higher levels of pain than their peers without disability. The aim of this study was to explore the impact of pain on health-related quality of life and motor function in individuals with cerebral palsy as reported by health professionals. METHODS: Cross-sectional study carried out in Associations for Care of Individuals with Cerebral Palsy and Related Disabilities (ASPACE) in Balearic Islands and Castile Leon (Spain). Thirty-five physiotherapists rated pain, health-related quality of life and motor function in 91 children and adolescents with cerebral palsy [8-19y]. A semi-structured interview was used to collect demographic and clinical data according with the Study of Participation of Children with Cerebral Palsy Living in Europe (SPARCLE). RESULTS: Physiotherapists reported that 51% of individuals with cerebral palsy suffered from pain. Physiotherapists also perceived that pain in individuals with cerebral palsy was responsible for reductions of psychological but not physical domains of health-related quality of life. According with physiotherapists' estimations, motor impairment scores were not correlated with pain scores in individuals with cerebral palsy, but they were significantly associated with physical and autonomy domains of health-related quality of life. CONCLUSIONS: These findings highlighted the importance of assessing and providing interventions for pain relief in persons with cerebral palsy even at an early age.

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.

Experiences of children with congenital Zika syndrome while using motorized mobility: a qualitative study using the photovoice method.

AIM: The congenital Zika Syndrome (CZS) often leads to severe motor impairment in affected children, making independent walking unlikely. Early introduction of motorized mobility through ride-on cars has been recommended for young children with severe motor impairment, enabling independent movement in various environments. This study aims to explore mothers' perceptions of their children's experiences while using ride-on cars at home and in the community, focusing on children with CZS. METHODS: This is a qualitative and descriptive study design using the Photovoice method. Four mothers of children with CZS, participating in the 'Go Zika Go' intervention project, were included. The research involved the following six steps: 1) Presentation of guide questions and Photovoice training; 2) Participants capturing photos; 3) Individual interviews to contextualize the photos; 4) Transcription and data analysis using thematic analysis principles; 5) Validation of analyses by mothers; and 6) Exhibition of photos to the community. RESULTS: The mothers and researchers selected the 21 most relevant photographs, which revealed five main themes related to the use of motorized ride-on cars: 1) Experiences of participation; 2) Independence in mobility; 3) Characteristics of mobility devices; 4) Family support; and 5) Accessibility of the environment. CONCLUSION: The narratives provided by participants, along with photographs depicting the daily lives of children with CZS, shed light on aspects of functionality, autonomy, and participation. The use of these devices contributes to overall equity, breaking down social and cultural barriers and enabling children with disabilities to be seen as equals by their peers.

To understand the barriers and facilitators experienced by children with Congenital Zika Syndrome (CZS) when using motorized ride-on cars at home and in the community can contribute to the planning of interventions aimed at implementing motorized mobility as an intervention modality for children with severe motor and cognitive impairments in low- and middle-income countries.The Photovoice method can be useful to capture the experiences of children with severe disabilities such as Congenital Zika Syndrome while using adapted motorized ride-on cars.Involving mothers of children with severe disabilities as co-researchers can contribute to the advancement of more relevant research for the public/patient, considering that they are specialists by knowledge.The use of motorized mobility for children with CZS can minimize social disadvantages, favor equity in its entirety, providing for the breakdown of cultural and attitudinal barriers.

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.

Characterization of environmental factors in children and adolescents with cerebral palsy in Minas Gerais: Participa Minas.

OBJECTIVE: To characterize the environmental factors of children and adolescents with Cerebral Palsy (CP) in the state of Minas Gerais (MG), Brazil. METHODS: This is a cross-sectional study involving 164 caregivers of children/adolescents with CP, aged 1-14 years. The Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS) were used to classify the participants' functioning, and environmental factors were evaluated by an on-line questionnaire that examined products and technologies, physical environment, services, and systems. A descriptive analysis was performed using percentage and frequency. RESULTS: Most participants had bilateral CP (66.9%) and 45% of them were spastic. Levels II and V of the GMFCS and MACS were the most frequent. About half (49.4%) used anticonvulsants, 27.4% underwent botulinum toxin application, and 29% went through orthopedic surgery in the lower limbs. Among the participants, 71.3% used orthoses in the lower limbs, and 51.8% used the public health care system. Most had access to physiotherapy (91.5%), but found difficulties to access interventions with other professionals, such as psychologists (28%) and nutritionists (37.8%). The school was the most frequently adapted environment (78%), and had the highest level of structural adaptation (42.7%). CONCLUSIONS: The results of this study suggest that the barriers to access health services and barriers to the physical environment may impact participation and social inclusion.

Motor Skills are Associated with Participation of Children with Autism Spectrum Disorder.

Children with autism spectrum disorder (ASD) generally have a delay in the development of motor skills when compared to typical children, however, to date, no study has investigated whether motor limitations can interfere in the participation of these children. The objectives of this study were: verify if the motor skills can explain the frequency, the percentage of number of activities, the involvement and the desire to change in participation at home, school and community of children with autism spectrum disorder (ASD) and; identify if contextual factors would modify the association between motor skills and participation outcomes. The participation and the motor skills were evaluated in 30 children with ASD between 5 and 10 years old. Participation outcomes were measured by the Participation and Environment Measure-Children and Youth (PEM-CY) and the motor skills were assessed by the Timed Up and Go, Timed Up and Down Stairs, Test of Gross Motor Development-2nd edition and Pediatric Balance Scale. The results of the study demonstrated that the motor skills of the locomotion, objects control, change position and balance explained participation outcomes of children with ASD classified from mild to moderate, between 5 and 10 years old. Moreover, the sex variable modified the association between the motor skills and the school participation, with girls performing less activities at this setting.

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.