The quality of life of families who have children with cerebral palsy

Ingrid Baloun, Aneta Witzanyová, Olga Dvořáčková, Miloš Velemínský, Sr.
University of South Bohemia, Faculty of Health and Social Sciences, České Budějovice, Czech Republic

Korespondenční autor: Ingrid Baloun (Ingrid.baloun@gmail.com)

ISSN 1804-7181 (On-line)

Full verze:
Full version

Submitted:27. 5. 2020
Accepted: 29. 6. 2020
Published online: 10. 7. 2020

Summary

Objective: Quality of life is a subjective term that can be perceived in many ways. The objective side is primarily defined by an objective assessment of health and other life conditions. The subjective part includes a rational and emotional assessment of one’s own life. The goal of this study was to find and compare the quality of life of children with cerebral palsy and their families to healthy children and their families.

Methods: We used the PedsQLTM questionnaire, specifically the PedsQLTM 2.0 Family impact module, to measure the quality of life of families. We also used the PedsQLTM 4.0 generic module.

Results: The research included 30 families. Children from 15 families had cerebral palsy. 120 questionnaires were filled in. Every family filled in 4 questionnaires (2× the Family impact module and 2× the generic module). The results showed that these two groups perceive their quality of life very differently (the children and their families). The quality of life by PedsQLTM 4.0 in children with CP was much lower than the quality of life of the children in the control group of intact population (by the children’s and their parents’ assessment). The quality of life of families with children with CP by PedsQLTM 2.0 was also much lower than that of healthy families. The time period of studying both groups was the same. It is necessary to publish the results and make them available to social services.

Keywords: Cerebral palsy; Children; Family; PedsQLTM; Quality of life

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