Quality of life and associated factors among caregivers of children with Down syndrome aged 6-month to 18 years and associated factors in Tikur Anbessa Specialized Hospital, Ethiopia
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Date
2024-03
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Addis Ababa University
Abstract
Down syndrome (DS), also known as trisomy 21, is the most common chromosomal disease in humans
and is caused by an extra copy of chromosome 21. Given that children with DS frequently have significant
morbidities, this can place an immense burden on their caregivers and negatively affect their quality of
life (QoL). Even though there are a sizable number of children with DS in our setup, there are no studies
that specifically address the burden that having a child with DS puts on these caregivers.
Objectives: aim to assess the Quality of caregivers and associated factor among caregivers of children
with DS.
Method: A cross-sectional study design was used to assess different variables of QoL among caregivers
of children with DS at TASH. Data was collected using the WHOQoL-BREF tool through a modified
face-to-face interview, and chart reviews for a calculated sample size of 292. Mean and SD were used to
present continuous variables. Frequency and percentage are used to present categorical variables. The
analysis will be done using SPSS Version 28, ANOVA, independent sample t-test, and Kruskal-Wallis
test were used to compare continuous variables among different groups. Multiple linear regression
analysis was used to determine factors independently associated with different domains.
Result Among the 285 included caregivers, the mean age was 37.8±7.99. Over half of caregivers were
between 30-39 years old 155, (54.4%). The WHOQoL-BREF score findings in this study revealed that
the mean scores for physical health and psychological domain were 53.43 and 58.05, respectively, which
are relatively higher compared to the lower mean scores for Social relationship and Environmental
domains which are 45.71 ±22.44 and 43.39 respectively. Caregiver education status, sex, household
income and perceived severity of child illness showed significant association with the four domain of
quality of life (P-value <0.05).
Conclusion and recommendation:-This study revealed that caregivers of children with Down syndrome
have a significantly compromised quality of life in all the 4 domains of QoL, particularly in social
relations and environmental health domains. Poor economic condition, sex of caregiver, lower education
level and perceived severity of their children’s illness are significant determinants of their QoL. This is
indicative of the need for a coordinated care plan for children with down syndrome and their caregivers
and we suggest further qualitative and case controlled studies to better define the kind of intervention
these study group urgently requires.
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Keywords
Down syndrome, quality of care, caregivers, Tikur Anbesa Specialized Hospital