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

Author(s)

Pereira, Rafaela Catelan Martins ; Apis, Aline ; dos Santos, Thamires Rosa ; de Avo, Lucimar Retto da Silva ; Pilotto, Rui Fernando ; Germano, Carla Maria Ramos ; Melo, Debora Gusmao

• Document type: Journal article
• Source: JOURNAL OF INTELLECTUAL DISABILITIES; v. N/A, p. 14-pg., 2022-05-11.

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. (AU)

• FAPESP's process: 17/06504-1 - Quality of life of families who have children with Williams-Beuren syndrome in Brazil
• Grantee: Rafaela Catelan Martins Pereira
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• FAPESP's process: 18/19875-0 - Quality of life of families who have children with rare genetic diseases and/or intellectual disability
• Grantee: Débora Gusmão Melo
• Support Opportunities: Regular Research Grants