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Lauren Schwartz; Caroline J. Vrana-Diaz; Jessica E. Bohonowych; Lisa Matesevac; Theresa V. Strong – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Prader-Willi syndrome (PWS) is a rare neurodevelopmental disorder with symptoms that impact health and quality of life (QOL). There is limited data on global health, QOL and the relationship with mood in individuals with PWS. Methods: Parents completed three validated assessments, the Glasgow Depression Scale-Carer Supplement (GDS-CS),…
Descriptors: Life Satisfaction, Health, Psychological Patterns, Genetic Disorders
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Ashworth, Maria; Palikara, Olympia; Van Herwegen, Jo – Journal of Applied Research in Intellectual Disabilities, 2019
Background: Although parental stress is higher for children with neurodevelopmental disorders (NDs), it is unclear how this stress compares to more common NDs. The current study compared stress in parents of children with Williams syndrome (WS), Down syndrome (DS) and autism spectrum disorders (ASD). The impact of individual and contextual factors…
Descriptors: Developmental Disabilities, Neurological Impairments, Autism, Pervasive Developmental Disorders
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Redley, Marcus; Pannebakker, Merel; Holland, Anthony – Journal of Applied Research in Intellectual Disabilities, 2018
Background: Advances in medical genetics herald the possibility that health and social care services could be more responsive to the needs arising from a person's genotype. This development may be particularly important for those men and women whose learning disability (known internationally as intellectual disability) is linked to a…
Descriptors: Genetic Disorders, Social Support Groups, Parent Attitudes, Well Being
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Calculator, Stephen; Diaz-Caneja Sela, Patricia – Journal of Applied Research in Intellectual Disabilities, 2015
Background: This investigation details procedures used to teach enhanced natural gestures (ENGs) and illustrates its use with three students with Angelman syndrome (AS). Materials and Methods: Themes were extracted, using a process of content analysis, to organize individuals' feedback pertaining to previous versions of the instructional…
Descriptors: Genetic Disorders, Nonverbal Communication, Content Analysis, Feedback (Response)
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Scallan, Susan; Senior, Joyce; Reilly, Colin – Journal of Applied Research in Intellectual Disabilities, 2011
Background: Despite the distinctive physical, cognitive, personality and behavioural characteristics associated with Williams syndrome, few studies to date have examined parental experiences of raising a child with this genetic syndrome. Methods: This explorative pilot study employed predominantly qualitative methodologies via face-to-face…
Descriptors: Family Environment, Developmental Disabilities, Interviews, Genetic Disorders