Supervisors info:
Γεράσιμος Κολαΐτης, Καθηγητής, Ιατρική Σχολή, ΕΚΠΑ
Αικατερίνη Παπανικολάου, Αναπληρώτρια Καθηγήτρια, Ιατρική Σχολή, ΕΚΠΑ
Μαρία-Ροζέ Πονς Ροντριγκεθ, Αναπληρώτρια Καθηγήτρια, Ιατρική Σχολή, ΕΚΠΑ
Summary:
Introduction. Parents of children and adolescents with cerebral palsy consistute a vulnerable group of the general population. This is due to the wide spectrum of symptoms and accompanied impairments that their offspring experience. Parents are forced to assume roles and responsibilities, take on burdens and adjust to situations that compound parental stress and affect their quality of life.
Purpose. The aim of this study is to explore the levels of parental stress and the quality of life that parents experience, while raising their children and adolescents with cerebral palsy. Furthermore, parental stress and the parents’ quality of life were correlated with the functional status (autonomy and adaptive behavior) and mental health (emotional and behavioral problems) of their children/adolescents.
Methods. The sample was drawn from five private rehabilitation clinics in the community and consisted of 89 parents (48 mothers and 41 fathers), 58 children and adolescents aged 2-18, who have been diagnosed with cerebral palsy, and live in the region of Attica. The questionnaires that were used are: The Parental Stress Index, Short Form, PSI-SF; The Questionnaire for the Quality of Life for adults (The World Health Organization Quality of Life – Bref, WHOQOL-BREF); The Vineland Behaviour Scales; The Achenbach ASEBA Questionnaire for parents – for children and adolescents aged 6-18 and The Achenbach ASEBA Questionnaire for parents for children aged 1 ½ - 5; Questionnaire of Demographic Information.
Results. As far as children and adolescents with cerebral palsy are concerned, the findings of the study conclude that the higher the severity of cerebral palsy, the lower the said individual’s functional status, which is also correlated with the presence of emotional problems such as depression (p=0,004), anxiety (p=0,04) and pervasive developmental problems (p=0,04). Moreover, it was also found that children/adolescents with older parents tended to have increased emotional problems such as depression (p=0,02), anxiety (p=0,001), attention deficit problems and hyperactivity (p=0,02) and deviant behavior (p=0,02). On the other hand, parents were found to have increased levels of stress when their children/adolescents faced increased motor problems (p=0,01), and also depression problems (p=0,001), anxiety (p<0,001), attention deficit problems and hyperactivity (p=0,004) and pervasive developmental problems (p=0,003). Moreover, a statistically significant correlation was found among increased parental stress (p<0,001) and an overall deterioration of parents’ quality of life. Parents’ quality of life was also found to be compromised when their children/adolescents had depression problems (p=0,05), anxiety (p=0,02), conduct problems (p=0,05) and pervasive developmental problems (p=0,03). Few differences were found between mothers and fathers.
Conclusions. In conclusion, parents’ increased level of stress is linked to the lack of independence of their children/adolescents, which arises, not only because of the motor dysfunction that is caused by cerebral palsy, but also because of the presence of emotional and behavioral problems such as depression, anxiety, attention deficit problems and hyperactivity, and pervasive developmental problems. All the above, as well as conduct behavior and psysical problems, lead to a significant deterioration in the parents’ quality of life.
Keywords:
Parents/caregivers, Children/adolescents, Stress, Quality of life, Cerebral palsy, Functional status/adaptation, Internalized/externalized problems, Emotional/behavioural problems
