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Tanaka, Miho; Kanehara, Akiko; Morishima, Ryo; Kumakura, Yousuke; Okouchi, Noriko; Nakajima, Naomi; Hamada, Junko; Ogawa, Tomoko; Tamune, Hidetaka; Nakahara, Mutsumi; Jinde, Seiichiro; Kano, Yukiko; Kasai, Kiyoto – Journal of Applied Research in Intellectual Disabilities, 2023
Background: The 22q11.2 deletion syndrome (22q11DS) is characterised by a changing pattern of overlapping intellectual, physical, and mental disabilities along the course of one's life. However, the impact of overlapping disorders (multimorbidity) on educational challenges remains unclear. Method: A survey was conducted with 88 caregivers of…
Descriptors: Foreign Countries, Genetic Disorders, Disabilities, Comorbidity
Coleman, Jeanine; Thompson, Talia; Riley, Karen; Allen, Korrie; Michalak, Claire; Shields, Rebecca; Berry-Kravis, Elizabeth; Hessl, David – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Parenting children and young adults with intellectual disabilities, including individuals with fragile X syndrome and Down syndrome, is challenging, joyful, and complicated. Exploring how parents talk about their children, and the quality of the parent/child relationship can provide insight into the home environment and interactional…
Descriptors: Genetic Disorders, Intellectual Disability, Congenital Impairments, Parents
Dikow, Nicola; Moog, Ute; Karch, Stephanie; Sander, Anja; Kilian, Samuel; Blank, Rainer; Reuner, Gitta – Journal of Applied Research in Intellectual Disabilities, 2019
Background: Caring for a child with intellectual disability (ID) has been associated with increased social and psychological burdens. Diagnostic and prognostic uncertainty may enhance emotional stress in families. Method: The present authors assessed the motivations, expectations, mental health, physical health and the quality of life of 194…
Descriptors: Parent Attitudes, Expectation, Clinical Diagnosis, Genetics
Grieco, Joseph C.; Gouelle, Arnaud; Weeber, Edwin J. – Journal of Applied Research in Intellectual Disabilities, 2018
Background: Angelman syndrome (AS) leads to clinical manifestations that include intellectual impairments, developmental delay and poor motor function. Initiatives to develop therapeutics imply an urgent need to identify methods that accurately measure the motor abilities. Methods: Six children with AS (6 to 9 years old) walked on an instrumented…
Descriptors: Genetic Disorders, Intellectual Disability, Psychomotor Skills, Developmental Delays
Cressey, Helen; Oliver, Chris; Crawford, Hayley; Waite, Jane – Journal of Applied Research in Intellectual Disabilities, 2019
Background: There is limited research into the nature and aetiology of temper outbursts in people with intellectual disabilities. In this study, we describe the phenomenology and environmental context of temper outbursts in Lowe syndrome, a rare genetic syndrome in which outbursts are purportedly frequent. Method: A temper outburst interview (TOI)…
Descriptors: Psychological Patterns, Intellectual Disability, Environmental Influences, Phenomenology
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
Wolfe, Kate; Stueber, Kerstin; McQuillin, Andrew; Jichi, Fatima; Patch, Christine; Flinter, Frances; Strydom, AndrĂ©; Bass, Nick – Journal of Applied Research in Intellectual Disabilities, 2018
Background: An increasing number of genetic causes of intellectual disabilities (ID) are identifiable by clinical genetic testing, offering the prospect of bespoke patient management. However, little is known about the practices of psychiatrists and their views on genetic testing. Method: We undertook an online survey of 215 psychiatrists, who…
Descriptors: Genetics, Psychiatry, Intellectual Disability, Referral
Calculator, Stephen N. – Journal of Applied Research in Intellectual Disabilities, 2013
Background: This investigation of children with Angelman syndrome (AS) examined reported uses of electronic augmentative and alternative communication (AAC) devices (i.e. VOCAs), including speech generating devices, in relation to other aided and unaided methods of communication. Materials and Method: A total of 122 parents of children with AS,…
Descriptors: Genetic Disorders, Augmentative and Alternative Communication, Children, Assistive Technology
McDougall, Allyson; Kerr, Alison M.; Espie, Colin A. – Journal of Applied Research in Intellectual Disabilities, 2005
Background: Sleep problems in children with intellectual disability can be precipitated and maintained by intrinsic and external factors. The present study comprised a qualitative investigation of the experiences of parents of children with Rett syndrome, a neurodevelopmental disorder where sleep disturbance is common. Method: Audio-taped…
Descriptors: Investigations, Models, Mental Retardation, Sleep