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Data were collected using sociodemographic and clinical data forms, as well as the Beach Center FQoL Scale, a 5\u2010point Likert scale ranging from \u201cvery dissatisfied\u201d (1) to \u201cvery satisfied\u201d (5). The average score of the overall FQoL was 3.93\u2009\u00b1\u20090.64. Families' scores were higher for family interaction (4.17\u2009\u00b1\u20090.76), parenting (4.13\u2009\u00b1\u20090.61), and disability\u2010related support (4.08\u2009\u00b1\u20090.76) domains, and lower for the family's emotional well\u2010being (3.31\u2009\u00b1\u20090.96) and physical\/material well\u2010being (3.76\u2009\u00b1\u20090.82) domains. Family income, attendance at religious services, presence of ocular abnormalities, and aggressive behavior explained 46.2% of the variance in the overall FQoL. In summary, FQoL seems to be anchored in aspects such as family interaction and the care of parents, and be negatively affected by emotional issues, physical, and material limitations. In this context, psychological assistance should be provided to both parents and siblings whenever indicated, for improving emotional well\u2010being and increasing family resilience. Additionally, investments in social policies, services, and human and material resources are needed to improve the physical and material conditions of families, promote better health care, and therefore reduce the family burden.<\/jats:p>","DOI":"10.1002\/ajmg.a.62914","type":"journal-article","created":{"date-parts":[[2022,8,1]],"date-time":"2022-08-01T11:14:08Z","timestamp":1659352448000},"page":"3294-3305","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Quality of life of Brazilian families who have children with <scp>Rubinstein\u2013Taybi<\/scp> syndrome: An exploratory cross\u2010sectional study"],"prefix":"10.1002","volume":"188","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1286-8339","authenticated-orcid":false,"given":"Amanda Rodrigues","family":"Vale","sequence":"first","affiliation":[{"name":"Department of Medicine Federal University of S\u00e3o Carlos (UFSCar)  S\u00e3o Carlos S\u00e3o Paulo Brazil"}],"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":"Department of Medicine Federal University of S\u00e3o Carlos (UFSCar)  S\u00e3o Carlos S\u00e3o Paulo Brazil"},{"name":"National Institute on Population Medical Genetics, INAGEMP  Porto Alegre Rio Grande do Sul Brazil"}],"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":"Department of Genetics Federal University of Paran\u00e1 (UFPR)  Curitiba Paran\u00e1 Brazil"}],"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":"Department of Medicine Federal University of S\u00e3o Carlos (UFSCar)  S\u00e3o Carlos S\u00e3o Paulo Brazil"},{"name":"National Institute on Population Medical Genetics, INAGEMP  Porto Alegre Rio Grande do Sul Brazil"}],"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":"Department of Medicine Federal University of S\u00e3o Carlos (UFSCar)  S\u00e3o Carlos S\u00e3o Paulo Brazil"},{"name":"National Institute on Population Medical Genetics, INAGEMP  Porto Alegre Rio Grande do Sul Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2022,8]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph18094993"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1590\/s0034-8910.2014048005111"},{"key":"e_1_2_12_4_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10803-021-05030-8"},{"key":"e_1_2_12_5_1","unstructured":"Brasil Minist\u00e9rio da Sa\u00fade. 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