Quality of Life of Brazilian Families Who Have Children with Williams Syndrome

Autor/inn/en	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
Titel	Quality of Life of Brazilian Families Who Have Children with Williams Syndrome
Quelle	In: Journal of Intellectual Disabilities, 27 (2023) 3, S.794-807 (14 Seiten) PDF als Volltext Verfügbarkeit
Zusatzinformation	ORCID (Pereira, Rafaela Catelan Martins) ORCID (Apis, Aline) ORCID (dos Santos, Thamires Rosa) ORCID (de Avó, Lucimar Retto da Silva) ORCID (Pilotto, Rui Fernando) ORCID (Germano, Carla Maria Ramos) ORCID (Melo, Débora Gusmão)
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1744-6295
DOI	10.1177/17446295221079583
Schlagwörter	Foreign Countries; Quality of Life; Genetic Disorders; Intellectual Disability; Family Relationship; Interaction; Child Rearing; Well Being; Mental Health; Physical Health; Parent Background; Educational Attainment; Daily Living Skills; Stress Variables; Heart Disorders; Family Characteristics; Individual Characteristics; Social Services; Brazil + Suchen Sie Ihr Suchwort? Ausland; Lebensqualität; Intellect; Disability; Disabilities; Verstand; Behinderung; Interaktion; Kindererziehung; Well-being; Wellness; Wohlbefinden; Psychohygiene; Gesundheitszustand; Elternhaus; Bildungsabschluss; Bildungsgut; Alltagsfertigkeit; Herzkrankheit; Personality characteristic; Personality traits; Persönlichkeitsmerkmal; Social service; Soziale Dienstleistung; Soziale Dienste; Brasilien
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. (As Provided).
Anmerkungen	SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com
Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01