Impact of cerebral palsy on the quality of life of the family of children with cerebral palsy
Date
2018
Authors
Ferreira, Juanita
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Abstract
CONTEXT: Caring for a child with cerebral palsy (CP) may have an impact on the quality of life (QoL) of the caregiver. The QoL of the caregiver may also be influenced by the severity of the gross motor functional impairment of the child with CP, and other demographic variables.
AIM OF STUDY: The aim of the study was to determine the impact of CP on the QoL of the primary caregiver (parents, guardians or caregivers) of children with CP, and to determine differences in QoL of caregivers of children of varying gross motor limitations e.g. children walking without limitations, in comparison to children requiring a wheelchair. The differences in gross motor limitations were observed between the different Gross Motor Functional Classification System (GMFCS) levels.
DESIGN, SETTING AND PARTICIPANTS: A prospective, observational and qualitative study design was used for descriptive and comparative purposes. There was no control group in the study. Data was collected from primary caregivers of, and living with children with CP, who attend routine clinic visits at the Neurodevelopmental Clinic of the Charlotte Maxeke Johannesburg Academic Hospital (CMJAH) in Johannesburg, South Africa.
METHODS: 52 participants who consented to and were found eligible to participate in the study completed a Demographic Data Sheet and Peds QL™ Family Impact Module (Peds QL™ FIM) Questionnaire.
RESULTS: The overall QoL score of the research sample was 66.52. This is a score value out of 100. Following the interpretation guidelines using the Peds QL™ FIM, a higher score indicates a better QoL. As there was no control group in the study, there was no direct comparison to caring for a child without CP. This was a descriptive value. Of the demographic variables assessed, the only variable to prove a statistically
significant impact on the QoL of the caregiver was the gender of the child with CP (p = 0.045). Analysing the domains constituting the overall QoL as measured by the Peds QL™ FIM, a significant difference between the genders of the child with CP and the physical functioning (p = 0.008), cognitive functioning (p = 0.027) and family relationship functioning (p = 0.015) of the caregiver was identified. A significant difference between the age of the caregiver, and the social functioning (p = 0.039) and communication (p = 0.003) of the caregiver was also identified. No significant difference was found between the severity of GMFCS level of the child with CP and the QoL of the caregiver (p = 0.255).
CONCLUSION: CP was shown to not have a significant impact on the overall QoL of the caregiver of the child with CP. The severity of gross motor functional impairment did not have a significant impact on the overall QoL of the caregiver. However the gender of the child with CP and the age of the primary caregiver, were the only two variables that showed a significant impact on the overall QoL of the caregiver.
Description
A research report submitted to the Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, in partial fulfilment of the requirements for the degree of Master of Science in Medicine in Child Health (Neurodevelopment)
Johannesburg, 2018