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 0-24years 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).

Caregivers, Intellectual disability, Parents, Quality of life, Well-being
dx.doi.org/10.1111/j.1468-3148.2011.00640.x, hdl.handle.net/1765/34771
Journal of Applied Research in Intellectual Disabilities
Erasmus MC: University Medical Center Rotterdam

Cramm, J.M, & Nieboer, A.P. (2012). Longitudinal study of parents' impact on quality of life of children and young adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 25(1), 20–28. doi:10.1111/j.1468-3148.2011.00640.x