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

• Published in: Journal of intellectual disabilities Vol. 27; no. 3; pp. 794 - 807
• Main Authors: Pereira, Rafaela Catelan Martins, Apis, Aline, dos Santos, Thamires Rosa, de Avó, Lucimar Retto da Silva, Pilotto, Rui Fernando, Germano, Carla Maria Ramos, Melo, Débora Gusmão
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 01-09-2023; SAGE PUBLICATIONS, INC
• Subjects: Activities of daily living; Autonomy; Cardiovascular diseases; Child Rearing; Children; Daily Living Skills; Economic wellbeing; Educational Attainment; Family Characteristics; Family relations; Family Relationship; Foreign Countries; Genetic Disorders; Heart Disorders; Individual Characteristics; Intellectual disabilities; Intellectual Disability; Interaction; Mental Health; Parent Background; Parents & parenting; Physical Health; Quality of Life; Social Services; Sociodemographics; Stress Variables; Well Being; Williams syndrome; Brazil; rare diseases; Brazil; family; quality of life; Williams syndrome
• ISSN: 1744-6295; 1744-6309
• DOI: 10.1177/17446295221079583

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.