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Lauren Shelley; Jane Waite; Joanne Tarver; Chris Oliver; Hayley Crawford; Caroline Richards; Stacey Bissell – Journal of Autism and Developmental Disorders, 2024
SATB2-associated syndrome (SAS) is a genetic syndrome characterised by intellectual disability, severe speech delay, and palatal and dental problems. Behaviours that challenge (BtC) are reported frequently; however, there is limited research on specific forms of BtC and the correlates of these behaviours. The current study explores correlates of…
Descriptors: Genetic Disorders, Behavior, Correlation, Violence
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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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Caitlin Gray; Helen Leonard; Kingsley Wong; Sally Reed; Kate Schmidt; Rachel Skoss; Jianghong Li; Alison Salt; Jenny Bourke; Emma J. Glasson – Journal of Intellectual & Developmental Disability, 2024
Background: Siblings of children with intellectual disability have unique family experiences, varying by type of disability. Methods: Parents of children with Down syndrome (156) or with Rett syndrome (149) completed questionnaires relating to sibling advantages and disadvantages, experiences of holidays and recreation, and perceived availability…
Descriptors: Intellectual Disability, Children, Genetic Disorders, Siblings
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Dykens, Elisabeth M.; Roof, Elizabeth; Hunt-Hawkins, Hailee – Journal of Applied Research in Intellectual Disabilities, 2022
Background: Despite work on the self-identities of people with intellectual disabilities, research has yet to describe the self-perceptions of people with Prader-Willi syndrome (PWS). The perspectives of those with PWS are also important for rapidly evolving clinical trials aimed at treating symptoms of PWS. Method: Twenty-one young people with…
Descriptors: Genetic Disorders, Self Concept, Symptoms (Individual Disorders), Hunger
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Vascelli, Luca; Berardo, Federica; Iacomini, Silvia; Scorza, Maristella; Cavallini, Francesca – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Social communication skills are critical for full participation in social activities in primary life contexts for adolescents and young adults with neurodevelopmental disorders. Method: Two young adults with Prader Willi syndrome participated in an online socialisation programme with elderly and adolescent conversational partners. We…
Descriptors: Communication Skills, Interpersonal Communication, Young Adults, Genetic Disorders
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Rikken-Evers, M. T.; Smith, K. D.; Sterkenburg, P. S. – Journal of Intellectual Disabilities, 2022
Aims: To assess the effectiveness of iPad use on the attention span of a child with Smith Magenis Syndrome (n = 1), compared to attention span while working on the same tasks manually. Methods: An AB design with a baseline and an intervention phase was used. Three manual tasks were chosen for the baseline, which matched the participant's…
Descriptors: Genetic Disorders, Handheld Devices, Telecommunications, Program Effectiveness
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Bennett Murphy, Laura; Thornton, Jane; Thornton, Emma – Journal of Intellectual & Developmental Disability, 2023
Background: Siblings of children with Prader-Willi syndrome (PWS) may be at elevated risk for poor psychological adjustment (Mazaheri, M. M., Rae-Seebach, R. D., Preston, H. E., Schmidt, M., Kountz-Edwards, S., Field, N., Cassidy, S., Packman, Wet al. (2013). The impact of Prader-Willi syndrome on the family's quality of life and caregiving, and…
Descriptors: Siblings, Genetic Disorders, Disabilities, Children