Health-related Quality of Life of Primary Caregivers of Children With Cerebral Palsyat Kenyatta National Hospital University of Nairobi

Abstract

Background Providing care to any sick child involves the use of extensive resources. There is more demand for these resources when the child involved has a disability. Children suffering from cerebral palsy have physical, mental, emotional and social disabilities and require long-term specialized care in order to meet their needs. This cans adversely affect the health-related quality of life of their caregivers. Broad Objective: To determine the health-rated quality of life of primary caregivers of children with cerebral palsy at Kenyatta National Hospital. Methodology: Hundred primary caregivers (50 caregivers of children with CP and 50 caregivers of children without chronic illnesses) took part in this cross-sectional study. In both groups, the participants had their health-related quality of life (HRQoL) evaluated using Short Form Health Survey (SF-36). Interviewer-administered questionnaire was used to gather socio-demographic characteristics of the caregivers. Functional ability of children with cerebral palsy were assessed using Gross Motor Function Classification System (GMFCS).Data was analyzed using SPSS version 23.0. HRQoL scores were analyzed and presented as means with standard deviations. Tests of associations and comparison of means were analyzed using fisher’s exact test, Chi-square, independent t-test and ANOVA with P value set at 0.05. Results: Primary caregivers of 50 children with CP were studied and compared with an equal number of primary caregivers of children without chronic illnesses. The mean age of the caregivers of children with CP was 32.7 years (sd 6.7 years) and 96% females taking care of children with CP with an average age of 4.7 years (sd 2.9 years) and 52% females. Unemployment rate was 50%for the caregivers with children suffering from CP with 60% earning less than kshs20,000 a month. The mean HRQOL score of caregivers of children with CP was 67.5 (sd 17.3) which was lower than the comparison group (p=0.001). The scores for the domains of vitality, mental health and social functioning as well as those of physical functioning and role limitations due to emotional problems were also lower in the study group. Caregivers of children with CP with GMFCS levels and V scored higher than the others in the domain of general health. Caregivers’ age and their monthly income influenced the health-related quality of life scores of caregivers with children suffering from CP.

Conclusions: The health-related quality of life of primary caregivers with children suffering from cerebral palsy was noted to be significantly lower than that of caregivers of children without chronic illnesses. The negative impact was apparent in the domains of vitality, mental health, social functioning, physical functioning, role limitations due to emotional problems, and the overall HRQoL. Factors such as caregivers’ income and age significantly correlated with low HRQoL in caregivers of children suffering from CP.