Comparing Parental Well-Being and Its Determinants Across Three Different Genetic Disorders Causing Intellectual Disability

Yuka Mori, Jenny Downs, Kingsley Wong, Jane Heyworth, Helen Leonard

Research output: Contribution to journalArticle

2 Citations (Scopus)

Abstract

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.

Original languageEnglish
Pages (from-to)1651-1665
Number of pages15
JournalJournal of Autism and Developmental Disorders
Volume48
Issue number5
Early online date30 Nov 2017
DOIs
Publication statusPublished - 1 May 2018

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Rett Syndrome
Inborn Genetic Diseases
Down Syndrome
Intellectual Disability
Brain Diseases
Health Surveys
Social Work
Caregivers
Population
Linear Models
Age Groups
Cross-Sectional Studies
Parents
Mothers
Databases
Delivery of Health Care

Cite this

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