Quality of life of Finnish children with cerebral palsy

Abstract

Purpose: The aim of this study was to examine the quality of life (QOL) of Finnish children with cerebral palsy (CP) in different parts of Finland from the children’s and caregivers’ perspectives. The acceptability of the Finnish version of the CP QOL-Child questionnaire for clinical use is also evaluated. Method: This study was conducted in 2010–2013 as a part of the national CP-project. It is based on validated CP QOL-Child questionnaires. Children between 9 and 12 years were asked to fill in the child-self-report version. Caregivers who had a 4- to 12-year-old child with CP filled in parent-proxy reports. Results: Responses were obtained from 63 children and 161 caregivers. The response rates were 63 and 60%, respectively. Overall QOL was reported to be fairly good with no significant regional differences within Finland. Children reported significantly higher QOL in all QOL-domains except “social wellbeing and acceptance” than their caregivers did. The results showed acceptable levels of internal consistency of the Finnish version of the CP QOL-Child. Conclusions: QOL of children with CP is quite good in Finland. However, barriers to participation and the impact of disability and pain impair QOL. The Finnish version of the CP QOL-Child questionnaire is an appropriate clinical tool to assess QOL.Implications for RehabilitationThe used questionnaire provides an effective tool to identify areas for targeting support actions and to set goals for rehabilitation plans.The study brings forward the voices of children.It was found that pain has a great role in QOL, which should be taken into account when making rehabilitation plans.The participation of children with CP should be strengthened in every possible ways.