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Direct linkBaker, Emma K.; Arora, Sheena; Amor, David J.; Date, Perrin; Cross, Meagan; O'Brien, James; Simons, Chloe; Rogers, Carolyn; Goodall, Stephen; Slee, Jennie; Cahir, Chris; Godler, David E. – Journal of Autism and Developmental Disorders, 2023
The study characterised differences in costs associated with raising a child between four rare disorders and examined the associations between these costs with clinical severity. Caregivers of 108 individuals with Prader-Willi, Angelman (AS), Chromosome 15q Duplication and fragile X (FXS) syndromes completed a modified Client Services Receipt…
Descriptors: Costs, Child Rearing, Genetic Disorders, Severity (of Disability)
Tyrer, Freya; Kiani, Reza; Rutherford, Mark J. – Journal of Intellectual & Developmental Disability, 2021
Background: There is a need to systematically compare and contrast mortality predictors and disparities in people with intellectual disabilities (ID) for global prevention strategy development. Method: Bibliographic databases and grey literature were searched using systematic review methodology and the machine learning tool "Abstrackr."…
Descriptors: Intellectual Disability, Death, Predictor Variables, Prevention
Laurvick, Crystal L.; Msall, Michael E.; Silburn, Sven; Bower, Carol; de Klerk, Nicholas; Leonard, Helen – Journal of the American Academy of Child & Adolescent Psychiatry, 2007
Objectives: Our goal was to investigate the physical and mental health of mothers who care for a child with Rett syndrome. Methods: We assessed maternal physical and mental health by using the SF-12 version 1 physical component summary and mental component summary scores as the outcome measures of interest. Mothers (n = 135) of children with Rett…
Descriptors: Physical Health, Family Needs, Child Behavior, Mothers
