Results 271 to 280 of about 8,728,306 (391)

Parental Communication With their Children about Cancer Risk and DTC Cascade Genetic Testing: Implications for Genetic Education and Counseling

open access: yesAmerican Journal of Medical Genetics Part A, EarlyView.
ABSTRACT Cascade genetic testing for cancer risk can influence relatives' health outcomes, as they may benefit from risk reduction and screening. However, clinical guidelines discourage predictive genetic testing in childhood—including direct‐to‐consumer (DTC) testing.
Marcelo M. Sleiman Jr.   +14 more
wiley   +1 more source

Quality of Life of Families Who Have Children With Cornelia de Lange Syndrome in Brazil: Opportunities for Improvement

open access: yesAmerican Journal of Medical Genetics Part A, EarlyView.
ABSTRACT This exploratory cross‐sectional study aimed to estimate the family quality of life (FQoL) among 70 Brazilian families with children with Cornelia de Lange syndrome (CdLS). Data were collected using sociodemographic and clinical data forms, the Barthel index for activities of daily living, and the Beach Center FQoL Scale, a 5‐point Likert tool
Aline Apis   +8 more
wiley   +1 more source

Association Between Feeding Problems and Gastrointestinal Symptoms, Language, and Developmental History in Adults With Angelman Syndrome

open access: yesAmerican Journal of Medical Genetics Part A, EarlyView.
ABSTRACT Angelman syndrome (AS) is a neurodevelopmental disorder characterized by severe developmental delays, typical facial features, ataxia, seizures, speech impairments, sleeping difficulties, and a happy demeanor. Caregivers of individuals with AS often report feeding problems, with difficulties including issues with obesity, failure to gain ...
Ciara Cassidy   +6 more
wiley   +1 more source

Digital welfare‐to‐work in the global south: A case of Indonesian pre‐employment card program

open access: yesAustralian Journal of Social Issues, EarlyView.
Abstract The worldwide movement toward digitisation in public service delivery presents a range of opportunities and risks. The potential benefits include improved efficiency, more consistent service delivery decisions and enhanced responsiveness to citizens' demand.
Phuc Nguyen   +3 more
wiley   +1 more source

“That grey area where no one can help”: The experience of younger people avoiding or leaving residential aged care who are not NDIS participants

open access: yesAustralian Journal of Social Issues, EarlyView.
Abstract Living in residential aged care (RAC) can have deleterious effects on the health, well‐being and social participation of younger people (<65 years of age). This research examined the barriers and enablers to leaving or avoiding RAC for Australian younger people who are not National Disability Insurance Scheme (NDIS) participants. It reports on
Barrie Shannon   +3 more
wiley   +1 more source

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