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Family management of childhood chronic conditions: Does it make a difference if the child has an intellectual disability?

Marcia Van RiperGeorge J KnaflCecelia RoscignoKathleen A Knafl
Published in: American journal of medical genetics. Part A (2017)
The purpose of this analysis was to assess the applicability of the Family Management Measure (FaMM) to families in which there was a child with an intellectual disability versus a chronic condition. Drawing on data from 571 parents of children with a chronic physical condition and 539 parents of children with Down syndrome, we compared the two groups across the six FaMM scales. After accounting for the covariate effects of race, ethnicity, family income, and child age, we found significant differences in four of the six FaMM scales, with parents of children with Down syndrome reporting a significantly more positive view on the Condition Management Effort and View of Condition Impact scales and a significantly less positive view on the Child's Daily Life and Condition Management Ability scales than parents of children with a chronic physical condition. There were no significant differences between groups on the Family Life Difficulty and the Parental Mutuality scales. The analysis provided evidence of the applicability of the FaMM for studying families in which there is a child with Down syndrome and its utility in identifying the common and unique challenges of family management between the groups.
Keyphrases
  • intellectual disability
  • mental health
  • young adults
  • autism spectrum disorder
  • physical activity
  • emergency department
  • machine learning
  • data analysis
  • early life