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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 – Journal of Intellectual Disabilities, 2023
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…
Descriptors: Foreign Countries, Quality of Life, Genetic Disorders, Intellectual Disability
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Reilly, Deirdre; Huws, Jaci; Hastings, Richard; Vaughan, Frances – Intellectual and Developmental Disabilities, 2010
Individuals with Down syndrome are at increased risk of congenital heart conditions (CHCs), and mortality is higher in people with Down syndrome and a CHC than those without (J. C. Vis et al., 2009). As a consequence, parents of children with Down syndrome and a CHC are more likely to outlive their child. In this research, semistructured…
Descriptors: Down Syndrome, Parents, Child Rearing, At Risk Persons
Apel, Laura – Exceptional Parent, 2009
When Candi Carter, a producer at "The Oprah Winfrey Show", learned that her son, Emerson, was born with chromosome 8p, which causes heart defects, mental retardation, severe speech delay, and other issues, she was immediately thrust into the world of special needs parenting. Like many in her position, she learned quickly that her child's…
Descriptors: Music, Mental Retardation, Sons, Special Needs Students
Bibel, Barbara – Library Journal, 2008
Strategies to fix America's ailing health-care system seemed to fly off the presses every month in 2007. Doctors, journalists, and policymakers clamored to have their say, as did supporters and opponents of the controversial life-extension movement. These top trends, which registered in 2006 as well, and will only balloon in this election year,…
Descriptors: Medical Services, Obesity, Quality of Life, Health Insurance
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Henretta, John C. – Journal of Health and Social Behavior, 2007
This article examines the relationship between a woman's childbearing history and her later health and mortality, with primary focus on whether the association between them is due to early and later socioeconomic status. Data are drawn from the Health and Retirement Study birth cohort of 1931-1941. Results indicate that, conditional on reaching…
Descriptors: Socioeconomic Status, Marital Status, Heart Disorders, Incidence