{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,28]],"date-time":"2026-08-28T09:53:13Z","timestamp":1787910793632,"version":"build-2784847793"},"reference-count":47,"publisher":"SAGE Publications","issue":"3","license":[{"start":{"date-parts":[[2022,5,11]],"date-time":"2022-05-11T00:00:00Z","timestamp":1652227200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["J Intellect Disabil"],"published-print":{"date-parts":[[2023,9]]},"abstract":"<jats:p>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 \u00b1 0.45, below the limit of four points considered satisfactory. Families felt more satisfied with the family interaction (4.11 \u00b1 0.57), parenting (4.07 \u00b1 0.42), and disability-related support (3.94 \u00b1 0.62) domains, and less satisfied with the family\u2019s emotional (3.49 \u00b1 0.73) and physical\/material well-being (3.73 \u00b1 0.74) domains. Paternal education, children\u2019s 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\u2019s cardiac condition and promoting independence in activities of daily living are also the main procedures.<\/jats:p>","DOI":"10.1177\/17446295221079583","type":"journal-article","created":{"date-parts":[[2022,5,11]],"date-time":"2022-05-11T10:15:18Z","timestamp":1652264118000},"page":"794-807","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":8,"title":["Quality of life of Brazilian families who have children with Williams syndrome"],"prefix":"10.1177","volume":"27","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-2241-4821","authenticated-orcid":false,"given":"Rafaela Catelan Martins","family":"Pereira","sequence":"first","affiliation":[{"name":"Departamento de Medicina, Universidade Federal de S\u00e3o Carlos (UFSCar), Brasil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5008-4837","authenticated-orcid":false,"given":"Aline","family":"Apis","sequence":"additional","affiliation":[{"name":"Departamento de Medicina, Universidade Federal de S\u00e3o Carlos (UFSCar), Brasil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6177-2632","authenticated-orcid":false,"given":"Thamires Rosa","family":"dos Santos","sequence":"additional","affiliation":[{"name":"Departamento de Medicina, Universidade Federal de S\u00e3o Carlos (UFSCar), Brasil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7282-420X","authenticated-orcid":false,"given":"Lucimar Retto da Silva","family":"de Av\u00f3","sequence":"additional","affiliation":[{"name":"Departamento de Medicina, Universidade Federal de S\u00e3o Carlos (UFSCar), Brasil"},{"name":"Instituto Nacional de Gen\u00e9tica M\u00e9dica Populacional, INAGEMP, Brasil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6835-8138","authenticated-orcid":false,"given":"Rui Fernando","family":"Pilotto","sequence":"additional","affiliation":[{"name":"Departamento de Gen\u00e9tica, Universidade Federal do Paran\u00e1 (UFPR), Brasil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5030-7164","authenticated-orcid":false,"given":"Carla Maria Ramos","family":"Germano","sequence":"additional","affiliation":[{"name":"Departamento de Medicina, Universidade Federal de S\u00e3o Carlos (UFSCar), Brasil"},{"name":"Instituto Nacional de Gen\u00e9tica M\u00e9dica Populacional, INAGEMP, Brasil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7005-3544","authenticated-orcid":false,"given":"D\u00e9bora Gusm\u00e3o","family":"Melo","sequence":"additional","affiliation":[{"name":"Departamento de Medicina, Universidade Federal de S\u00e3o Carlos (UFSCar), Brasil"},{"name":"Instituto Nacional de Gen\u00e9tica M\u00e9dica Populacional, INAGEMP, Brasil"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2022,5,11]]},"reference":[{"key":"bibr1-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1080\/19371918.2018.1562399"},{"key":"bibr2-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1111\/cch.12044"},{"key":"bibr3-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2018.10.006"},{"key":"bibr4-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12317"},{"key":"bibr5-17446295221079583","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph18094993"},{"key":"bibr6-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1080\/1034912X.2017.1353680"},{"key":"bibr7-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2019.103496"},{"key":"bibr8-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12016"},{"key":"bibr9-17446295221079583","doi-asserted-by":"publisher","DOI":"10.12819\/2012.9.2.14"},{"key":"bibr10-17446295221079583","doi-asserted-by":"publisher","DOI":"10.3758\/BRM.41.4.1149"},{"key":"bibr11-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12303"},{"key":"bibr12-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1177\/1744629521995378"},{"key":"bibr13-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-020-02440-6"},{"key":"bibr14-17446295221079583","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph17197220"},{"key":"bibr15-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1590\/1807-57622014.1334"},{"key":"bibr16-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1177\/1053815118803772"},{"key":"bibr17-17446295221079583","volume-title":"Multivariate Data Analysis: A Global Perspective","author":"Hair JF","year":"2019","edition":"8"},{"key":"bibr18-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1111\/jftr.12166"},{"key":"bibr19-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1111\/j.1741-3737.2006.00314.x"},{"key":"bibr20-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1016\/j.jtcvs.2015.02.016"},{"key":"bibr21-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1111\/mono.12296"},{"key":"bibr22-17446295221079583","volume-title":"JASP Version 0.16 [Computer software]","author":"JASP Team","year":"2021"},{"key":"bibr23-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1590\/2317-1782\/20152014142"},{"key":"bibr24-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1038\/s41572-021-00276-z"},{"key":"bibr25-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1590\/1413-812320182310.14762018"},{"key":"bibr26-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1590\/S0104-07072011000100015"},{"key":"bibr27-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2788.2010.01287.x"},{"key":"bibr28-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.c.31436"},{"key":"bibr29-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1352\/1944-7558-117.2.134"},{"key":"bibr30-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1186\/s12955-021-01704-0"},{"key":"bibr31-17446295221079583","first-page":"1993","volume-title":"GeneReviews\u00ae [Internet]","author":"Morri CA","year":"2017"},{"key":"bibr32-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1007\/s10803-017-3357-0"},{"key":"bibr33-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1590\/0047-2085000000233"},{"key":"bibr34-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1016\/j.dhjo.2015.03.009"},{"key":"bibr35-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1016\/j.neuropsychologia.2009.12.021"},{"key":"bibr36-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12539"},{"key":"bibr37-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1097\/YCO.0000000000000477"},{"key":"bibr38-17446295221079583","doi-asserted-by":"publisher","DOI":"10.15448\/1677-9509.2017.2.24250"},{"key":"bibr39-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1007\/s10803-017-3102-8"},{"key":"bibr40-17446295221079583","doi-asserted-by":"publisher","DOI":"10.5123\/S1679-49742017000300022"},{"key":"bibr41-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1017\/ipm.2020.4"},{"key":"bibr42-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2788.2005.00751.x"},{"key":"bibr43-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1590\/0102-311x00096016"},{"key":"bibr44-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1002\/mrdd.20174"},{"key":"bibr45-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1111\/jppi.12317"},{"key":"bibr46-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12215"},{"key":"bibr47-17446295221079583","doi-asserted-by":"publisher","DOI":"10.1007\/978-90-481-9650-0_15"}],"container-title":["Journal of Intellectual Disabilities"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/17446295221079583","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/17446295221079583","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/17446295221079583","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T23:19:08Z","timestamp":1777504748000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/17446295221079583"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,5,11]]},"references-count":47,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2023,9]]}},"alternative-id":["10.1177\/17446295221079583"],"URL":"https:\/\/doi.org\/10.1177\/17446295221079583","relation":{},"ISSN":["1744-6295","1744-6309"],"issn-type":[{"value":"1744-6295","type":"print"},{"value":"1744-6309","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,5,11]]}}}