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

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

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.

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

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

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

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

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.