Parental perspectives on quality of life in adolescents with cerebral palsy

Abstract

Background: Quality of life (QoL) is an important outcome variable while evaluating intervention effectiveness during adolescence. Limited studies have addressed the issues that affect the QoL in adolescents with cerebral palsy. The present study explores the parent-reported QoL in adolescents with cerebral palsy. Materials and Methods: Using a cross-sectional study design, parental perspectives on QoL were investigated among 35 parents of adolescents with cerebral palsy, aged between 13 and 18 years. Performance on seven domains of QoL across age and gender were explored. Results: While the maximum QoL was seen in the domain of social well-being, the least QoL was noted for feelings about functioning. Across age, the early adolescence group (13–15 years) had a poorer quality of life in comparison to the late adolescence group (16–18 years). With respect to the gender, though females had a lower QoL scores, a statistically significant difference was observed only for the domain of general well-being and participation. Conclusions: From a parental perspective, the major issues of concern in adolescents with cerebral palsy were feelings about functioning, general well-being and participation, and access to services. This information will be useful when establishing management options or assessment protocols to improve their overall QoL.

Keywords

• adolescents
• cerebral palsy
• parental perspectives
• quality of life key messages: there are various issues that affect the qol in adolescents with cerebral palsy. from a parental perspective
• the major issues of concern in adolescents are feelings about functioning
• general well-being and participation
• and access to services.