Quality of life of Brazilian families who have children with Williams syndrome

Abstract

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.

Health-related quality of life of children with Williams syndrome and caregivers in China

“…While regarding maternal educational levels, the statistically significant difference was only observed in the score of the cognitive functioning scale (p < 0.05). Our finding was consistent with the Brazilian study showing paternal education positively related to family quality of life (10).…”

“…Large differences were observed in all domain scores of caregivers' HRQoL and the overall score between the highest and the lowest subgroup of household income (i.e., more than 72,700 vs. less than 14,500 US dollars per year), with the effect sizes ranging from 1.03 to 2.02. The above finding was consistent with the Brazilian study reporting family income as a determinant of the family's quality of life with WS children (10). They also found that supplemental health insurance and social benefits were associated with better family quality of life, which was not confirmed by our study.…”

“…Sepúlveda et al in Spain found that the degree and the presence of intellectual disability did not homogeneously influence the family quality of life, and many variables such as material well-being and interpersonal development could affect the family quality of life (9). Pereira et al in Brazil found that paternal education, children's cardiopathy, and autonomy in activities of daily living had an impact on the overall family quality of life (10). The studies mentioned above are about family quality of life, and the sample sizes were relatively small.…”