Parent proxy‐reported quality of life for children with cerebral palsy: is it related to parental psychosocial distress?

Abstract

Parent-proxy reports of quality of life (QOL) are often used to guide decisions about children with cerebral palsy (CP), although little is known about the factors that influence parent-proxy reports. The aim of this study was to examine (i) the relationship between parental psychosocial distress and parent proxy-reported QOL; and (ii) whether parental psychosocial distress mediates the relationship between child impairment and proxy-reported QOL. A sample of 201 primary caregivers of children aged 4-12 years with CP completed the Cerebral Palsy Quality of Life Questionnaire for Children, a condition-specific QOL instrument, and a measure of psychosocial distress, the Kessler 10. The children, evenly distributed by gender (56% male) were sampled across Gross Motor Function Classification System levels (Level I = 18%, II = 28%, III = 14%, IV = 11%, V = 27%). Consistent with the hypotheses, parental distress was negatively correlated with all domains of parent proxy-reported QOL (r = -0.18 to r = -0.55). The relationship between impairment and proxy-reported QOL was mediated by parental distress for five of the seven domains of QOL (social well-being and acceptance, feelings about functioning, participation and physical health, emotional well-being and self-esteem, and pain and impact of disability). Child impairment did not predict access to services or family health. This is the first study that assesses the relationship between parental distress and proxy-reported QOL for children with CP. Although the cross-sectional nature of the available data precludes any statements of causality, the results suggest that, when using parent proxy, the parents' psychological state should also be measured. This is particularly important when, as is often the case for child disability research, proxy-reported QOL are the only available data.