Introduction
Quality of life (QoL) is a concept that includes physical, psychological, social,
spiritual, and other domains of functioning. Good QoL is a fundamental goal of treatment
for Cerebral Palsy (CP), therefore it is an outstanding goal of Conductive Education
(CE) as well. CE is a Hungarian method that combines special education and rehabilitation
for people living with CP.
Objective
We aimed to compare the opinions and views about the life of teenagers from the perspective
of adolescents and their caregivers from different socio-cultural backgrounds.
Method
It was a descriptive, cross-sectional study. We used the Cerebral Palsy Quality of
Life for the adolescent questionnaire (CP QoL -Teen) to measure QoL, which was translated
into Hungarian and validated by Semmelweis University in 2017. Our study included
20 young adolescents (mean age 16) with CP and their caregivers living in Hungary
(n1 = 40) and 20 Hungarian-speaking families (n2 = 40) from surrounding countries:
Slovakia, Romania, and Ukraine (mean age 14.5). All the families are participating
in CE.
Results
There was no significant divergence in the whole QoL score between the groups. Nonetheless,
we found an outstanding difference in the Hungarian groups’ ‘Feelings about functioning’
domain between teens and caregivers. A significant proportion of Hungarian teens–although
living with greater pain–are less concerned about their illness (R = -0.754). 85%
of responders study at segregated schools offering CE.
Conclusion
The study shed new light on the importance of a personalized form of education and
on the weight of the positive effects of segregated education. Personalized education
can develop the patients’ QoL.
