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.

Effect of Intensive Physiotherapy Training for Children With Congenital Zika Syndrome: A Retrospective Cohort Study.

OBJECTIVE: To investigate the effect of intensive physiotherapy training on the motor function of children with congenital Zika syndrome (CZS). DESIGN: A retrospective cohort study. SETTING: A support center for children with microcephaly. PARTICIPANTS: Children (N=7) aged 14 to 18 months old who were diagnosed with CZS and previously monitored more than 1 year. INTERVENTIONS: A 2-stage protocol repeated uninterruptedly for 1 year. In the first stage, the children were submitted to 1 hour of conventional physiotherapy and 1 hour of suit therapy 5 times a week for 4 weeks. The second stage consisted of 1 hour of suit therapy 3 times a week for 2 weeks. MAIN OUTCOME MEASURES: Gross motor function measure (GMFM) and body weight. RESULTS: Six evaluations were conducted approximately 3 months apart. An increase in the overall GMFM score was observed between the first and second (P=.046), first and third (P=.018), first and fourth (P=.018), first and fifth (P=.043), and first and sixth evaluations (P=.018). Differences in the scores of the individual GMFM dimensions were found only for dimension A (lying and rolling) between the first and fourth evaluations (P=.027) and for dimension B (sitting) between the first and third (P=.018), first and fourth (P=.046), and first and sixth evaluations (P=.027). No difference was found in body weight between the first and sixth evaluations (P=.009). During follow-up, only 1 child required hospitalization, and another had increased irritability. CONCLUSIONS: Children with CZS were able to perform 2 hours of motor physiotherapy daily with no serious complications, resulting in an increase or stabilization in GMFM scores.

Stimulation of children with congenital Zika syndrome at home: challenges for the caregivers.

OBJECTIVE: To identify the challenges faced by caregivers regarding the stimulation of the development of children with congenital Zika syndrome at home. METHOD: A qualitative study was carried out with ten caregivers of children with the syndrome and five health professionals who work in a specialized service of reference for children/adolescents with disabilities in a city in Pernambuco, Brazil. Data collection took place between November 2018 and March 2019 through a semi-structured interview, and the data were interpreted using thematic analysis. RESULTS: The challenges faced by caregivers are permeated by fear, insecurity and lack of support for the realization of the stimulatory activities at home. Practitioners acknowledge the situation but emphasize the importance of continuing the stimulatory activities to preserve the capabilities of these children. CONCLUSIONS: It is necessary to sensitize health teams to support families regarding the challenges faced and provide full time care for the child with Zika syndrome in order to achieve maximum development.

Stimulation of children with congenital Zika syndrome at home: challenges for the caregivers / Estímulo de niños con síndrome congénita por el Zika vírus en la residencia: desafíos del cuidador / Estimulação de crianças com síndrome congênita pelo Zika vírus no domicílio: desafios do cuidador

ABSTRACT Objective: To identify the challenges faced by caregivers regarding the stimulation of the development of children with congenital Zika syndrome at home. Method: A qualitative study was carried out with ten caregivers of children with the syndrome and five health professionals who work in a specialized service of reference for children/adolescents with disabilities in a city in Pernambuco, Brazil. Data collection took place between November 2018 and March 2019 through a semi-structured interview, and the data were interpreted using thematic analysis. Results: The challenges faced by caregivers are permeated by fear, insecurity and lack of support for the realization of the stimulatory activities at home. Practitioners acknowledge the situation but emphasize the importance of continuing the stimulatory activities to preserve the capabilities of these children. Conclusions: It is necessary to sensitize health teams to support families regarding the challenges faced and provide full time care for the child with Zika syndrome in order to achieve maximum development.

RESUMEN Objetivo: Identificar los desafíos enfrentados por cuidadores en cuanto al estímulo del desarrollo de niños con Síndrome Congénita por el Zika vírus en la residencia. Método: Estudio calitativo, realizado con diez cuidadores de niños con la síndrome y cinco profesionales de salud que actúan en un servicio especializado de referencia al niño/adolescente con deficiencia, en un municipio pernambucano. La recogida de datos ocurrió entre noviembre/2018 y marzo/2019 a través de entrevista semiestructurada, y los datos interpretados por el análisis temático. Resultados: Los desafíos enfrentados por los cuidadores está permeado por el miedo, inseguridad y falta de apoyo para la realización del estímulo en la residencia. Los profesionales reconocen la situación, con todo, enfatizan la importancia de la continuidad de dicho estímulo para preservar las capacidades de estos niños. Conclusiones: Se hace necesario sensibilizar los equipos de salud para apoyar las familias en los desafíos, y para el cuidado integral al niño con la Síndrome del Zika, con vistas a alcanzar el máximo posible su desarrollo.

RESUMO Objetivo: Identificar os desafios enfrentados por cuidadores quanto ao estímulo do desenvolvimento de crianças com Síndrome Congênita pelo Zika vírus no domicílio. Método: Estudo qualitativo, realizado com dez cuidadores de crianças com a síndrome e cinco profissionais de saúde que atuam num serviço especializado de referência à criança/adolescente com deficiência de um município pernambucano. A coleta ocorreu entre novembro/2018 e março/2019 através de entrevista semiestruturada, e os dados interpretados pela análise temática. Resultados: Os desafios enfrentados pelos cuidadores são permeados pelo medo, insegurança e falta de apoio para a realização do estímulo no domicílio. Os profissionais reconhecem a situação, contudo, enfatizam a importância da continuidade do estímulo para preservar as capacidades destas crianças. Conclusões: Torna-se necessário sensibilizar as equipes de saúde para apoiar as famílias nos desafios, e para o cuidado integral à criança com a Síndrome do Zika, a fim de alcançar o máximo possível o seu desenvolvimento.

Clinical aspects of congenital microcephaly syndrome by Zika virus in a rehabilitation center for patients with microcephaly.

OBJECTIVE: In this study, we intend to identify the prevalence of clinical variables in children with microcephaly. METHODS: This is a cross-sectional and observational study with data collected from medical records of patients admitted to the microcephaly outpatient clinic of a referral center in Teresina-PI. Demographic (gender and age) and clinical data (presence of epilepsy, dysphagia, irritability, and associated comorbidities) were collected. The frequency of Zika virus as a probable etiology was determined from computed tomography patterns and the exclusion of other etiologies by serological tests. RESULTS: A total of 67 patient records were evaluated, of which 31 were male and 36 were female, with a mean age of 1 year and 10 months. The most prevalent clinical variables were epilepsy, present in 47 children (70.2%), and irritability in 37 (55.2%). Also with a high frequency, 22 had dysphagia (32.8%), and 13 had musculoskeletal comorbidities (19.4%). Only three patients in the sample had cardiac abnormalities (4.5%), and no endocrine comorbidity was found. A total of 38 children in the sample (56.7%) presented ZIKV as a probable etiology and, in these cases, there was a higher frequency of epilepsy and dysphagia compared to other etiologies, although not statistically significant. CONCLUSION: Epilepsy, irritability, dysphagia, and musculoskeletal comorbidities were the most frequent clinical variables in children with microcephaly. There was a high prevalence of congenital ZIKV microcephaly syndrome in this sample.

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.

Clinical aspects of congenital microcephaly syndrome by Zika virus in a rehabilitation center for patients with microcephaly

SUMMARY OBJECTIVE In this study, we intend to identify the prevalence of clinical variables in children with microcephaly. METHODS This is a cross-sectional and observational study with data collected from medical records of patients admitted to the microcephaly outpatient clinic of a referral center in Teresina-PI. Demographic (gender and age) and clinical data (presence of epilepsy, dysphagia, irritability, and associated comorbidities) were collected. The frequency of Zika virus as a probable etiology was determined from computed tomography patterns and the exclusion of other etiologies by serological tests. RESULTS A total of 67 patient records were evaluated, of which 31 were male and 36 were female, with a mean age of 1 year and 10 months. The most prevalent clinical variables were epilepsy, present in 47 children (70.2%), and irritability in 37 (55.2%). Also with a high frequency, 22 had dysphagia (32.8%), and 13 had musculoskeletal comorbidities (19.4%). Only three patients in the sample had cardiac abnormalities (4.5%), and no endocrine comorbidity was found. A total of 38 children in the sample (56.7%) presented ZIKV as a probable etiology and, in these cases, there was a higher frequency of epilepsy and dysphagia compared to other etiologies, although not statistically significant. CONCLUSION Epilepsy, irritability, dysphagia, and musculoskeletal comorbidities were the most frequent clinical variables in children with microcephaly. There was a high prevalence of congenital ZIKV microcephaly syndrome in this sample.

RESUMO OBJETIVO Pretende-se, neste estudo, identificar a prevalência de variáveis clínicas em crianças com microcefalia. MÉTODOS Trata-se de um estudo transversal e observacional com dados coletados de prontuários de pacientes admitidos no ambulatório de microcefalia de um centro de referência em Teresina (PI). Foram coletados dados demográficos (gênero Ve idade) e clínicos (presença de epilepsia, disfagia, irritabilidade e comorbidades associadas). A frequência de Zika vírus como provável etiologia foi determinada a partir de padrões da tomografia computadorizada e da exclusão de outras etiologias por exames sorológicos. RESULTADOS Foram avaliados 67 prontuários de pacientes, sendo 31 do sexo masculino e 36 do sexo feminino, com idade média de 1 ano e 10 meses. As variáveis clínicas mais prevalentes foram epilepsia, presente em 47 das crianças (70,2%), e irritabilidade, em 37 (55,2%). Também com elevada frequência, 22 possuíam quadro de disfagia (32,8%) e 13 apresentavam comorbidades osteomusculares (19,4%). Apenas três pacientes da amostra tinham quadro de alterações cardiológicas (4,5%) e nenhuma comorbidade endocrinológica foi encontrada. Trinta e oito crianças da amostra (56,7%) apresentaram ZIKV como provável etiologia e, nesses casos, houve maior frequência de epilepsia e disfagia em comparação com outras etiologias, embora não de forma significativa estatisticamente. CONCLUSÕES Epilepsia, irritabilidade, disfagia e comorbidades osteomusculares foram as variáveis clínicas mais frequentes em crianças com microcefalia. Houve uma prevalência alta de síndrome de microcefalia congênita por ZIKV nessa amostra.

Access to healthcare for children with Congenital Zika Syndrome in Brazil: perspectives of mothers and health professionals.

The Congenital Zika Syndrome (CZS) epidemic took place in Brazil between 2015 and 2017 and led to the emergence of at least 3194 children born with CZS. We explored access to healthcare services and activities in the Unified Health Service (Sistema Único de Saúde: SUS) from the perspective of mothers of children with CZS and professionals in the Public Healthcare Network. We carried out a qualitative, exploratory study, using semi-structured interviews, in two Brazilian states-Pernambuco, which was the epicentre of the epidemic in Brazil, and Rio de Janeiro, where the epidemic was less intense. The mothers and health professionals reported that healthcare provision was insufficient and fragmented and there were problems with follow-up care. There was a lack of co-ordination and an absence of communication between the various specialized services and between different levels of the health system. We also noted a public-private mixture in access to healthcare services, resulting from a segmented system and related to inequality of access. High reported household expenditure is an expression of the phenomenon of underfunding of the public system. The challenges that mothers and health professionals reported exposes contradictions in the health system which, although universal, does not guarantee equitable and comprehensive care. Other gaps were revealed through the outbreak. The epidemic provided visibility regarding difficulties of access for other children with disabilities determined by other causes. It also made explicit the gender inequalities that had an impact on the lives of mothers and other female caregivers, as well as an absence of the provision of care for these groups. In the face of an epidemic, the Brazilian State reproduced old fashioned forms of action-activities related to the transmitting mosquito and to prevention with an emphasis on the individual and no action related to social determinants.

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.