RESUMO Objetivo Investigar a qualidade de vida familiar (QVF) entre famílias brasileiras que têm filhos com deficiência intelectual (DI) moderada. Métodos Estudo transversal, realizado com 50 famílias com filhos com DI moderada de São Carlos, São Paulo, Brasil. Os dados foram coletados por meio de formulários, com informações sociodemográficas, os índices de funcionalidade de Barthel e de Lawton & Brody e a Escala de Qualidade de Vida Familiar do Beach Center. Resultados Os domínios mais fortemente correlacionados com a QVF total foram “interação familiar” (r = 0,870; p < 0,001) e “cuidado dos pais com os filhos” (r = 0,845; p < 0,001). Não houve diferenças na distribuição da QVF em relação às variáveis sociodemográficas investigadas. Observou-se correlação moderada (r = 0,326) e significativa (p = 0,021) entre o índice de funcionalidade de Lawton & Brody e a QVF. O modelo de regressão linear ajustado explicou 10,6% da variabilidade encontrada na QVF (p = 0,021) e mostrou que o aumento de uma unidade no valor do índice de Lawton & Brody representou aumento de 0,092 na QVF. Conclusão A QVF das famílias investigadas encontra-se aquém de outras amostras internacionais. Ações clínicas que fortaleçam o diálogo e a coesão familiar e a construção de um plano terapêutico individualizado podem ser meios efetivos de ajuda a essas famílias.
This cross-sectional and descriptive study examined the family quality of life (FQoL) among 72 Brazilian families who have children with Williams syndrome, a rare genetic disorder in which most individuals have an intellectual disability, usually mild. Data were collected using sociodemographic and clinical data forms and the Beach Center FQoL Scale. The overall FQoL score was 3.90 ± 0.45, below the limit of four points considered satisfactory. Families felt more satisfied with the family interaction (4.11 ± 0.57), parenting (4.07 ± 0.42), and disability-related support (3.94 ± 0.62) domains, and less satisfied with the family’s emotional (3.49 ± 0.73) and physical/material well-being (3.73 ± 0.74) domains. Paternal education, children’s cardiopathy and autonomy in activities of daily living explained 24.5% of the variance in the overall FQoL. Measures are necessary to improve the emotional and physical/material well-being of families to reduce the family burden. Monitoring the child’s cardiac condition and promoting independence in activities of daily living are also the main procedures.
Objectives: to evaluate the nutritional status of iodine in pregnant adolescents, taking into account the increase in the demand for iodine during pregnancy and the absence of iodization strategies for this population. Methods: cross-sectional study conducted with 62 pregnant and 71 non-pregnant adolescents assisted in primary care. The nutritional status of iodine was determined by urinary samples. The iodine concentration in the consumed culinary salt was also evaluated. For the comparative analyses of categorical variables, the Chi-square test was used and for the continuous variables, the Kruskal-Wallis test, considering a 95% confidence interval (CI) and significance level of 5%. Results: the mean iodine concentration in household salt was 25.1 mg/kg (CI95%= 11.1-67.5 mg/kg), with higher mean content in culinary salt in the group of pregnant women (p<0.028). Regarding the nutritional status of iodine, 71% of pregnant adolescents were deficient and 29% iodine-sufficient, with significant difference when compared to 38% of deficiency and 62% of sufficiency in the control group (p<0.001). Conclusions: there was an iodic deficiency among pregnant adolescents, even in the face of higher concentrations of iode in household salt, exposing a paradox between higher consumption and lower sufficiency in this group. Thus, it is suggested to consider iodine supplementation during pregnancy, seeking to minimize the effects of this deficiency on maternal and child health.
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