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  • Title: Longitudinal study of parents' impact on quality of life of children and young adults with intellectual disabilities.
    Author: Cramm JM, Nieboer AP.
    Journal: J Appl Res Intellect Disabil; 2012 Jan; 25(1):20-8. PubMed ID: 22473945.
    Abstract:
    BACKGROUND: Earlier research has distinguished five domains of Quality of life (QoL) for people with ID: material well-being, development and activity, physical well-being, social well-being, and emotional well-being. We investigated parents' perspectives on these domains and QoL for children and young adults with ID and hypothesized that parents' well-being would be a predictive factor in QoL of their children with ID. METHODS: Our longitudinal study administered questionnaires to parents at T0 (n = 147) and T1 (n = 108). The inclusion criteria were: (i) the child's age 0-24 years and (ii) the child's intellectual disability (IQ < 70 or IQ < 85 in combination with behavioural problems). RESULTS: Social well-being of parents (P ≤ 0.001), changes in parents' social well-being (P ≤ 0.01) and changes in children's social well-being (P ≤ 0.05) were strong predictors of QoL for children with ID. Emotional well-being of children with ID (P ≤ 0.01), changes in children's emotional well-being (P ≤ 0.01) and changes in emotional well-being of parents (P ≤0.05) also predicted QoL of children with ID. Material well-being of parents, and health, development and activity of the children were not predictors. CONCLUSION: Our study revealed that predictors of QoL in children and young adults with ID occurred in the following domains: physical well-being (children), social well-being (parents and children) and emotional well-being (parents and children).
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