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ERIC Number: EJ1175238
Record Type: Journal
Publication Date: 2018-May
Pages: 15
Abstractor: As Provided
ISSN: ISSN-0162-3257
Comparing Parental Well-Being and Its Determinants across Three Different Genetic Disorders Causing Intellectual Disability
Mori, Yuka; Downs, Jenny; Wong, Kingsley; Heyworth, Jane; Leonard, Helen
Journal of Autism and Developmental Disorders, v48 n5 p1651-1665 May 2018
Using the Short Form 12 Health Survey this cross-sectional study examined parental well-being in caregivers of children with one of three genetic disorders associated with intellectual disability; Down syndrome, Rett syndrome and the CDKL5 disorder. Data were sourced from the Western Australian Down Syndrome (n = 291), Australian Rett Syndrome (n = 187) and International CDKL5 Disorder (n = 168) Databases. Among 596 mothers (median age, years 43.7; 24.6-72.2), emotional well-being was poorer than general female populations across age groups. Multivariate linear regression identified the poorest well-being in parents of children with the CDKL5 disorder, a rare but severe and complex encephalopathy, and negative associations with increased clinical severity irrespective of diagnosis. These findings are important for those providing healthcare and social services for these populations.
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Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: National Institutes of Health (DHHS)
Authoring Institution: N/A
Identifiers - Location: Australia
Grant or Contract Numbers: 5R01HD4310004; 5R01HD04310005