Quality of life among caregivers of children and adolescents with autism spectrum disorder in Dar es Salaam, Tanzania.

Abstract

Background: Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by deficits in social, communication, and cognitive domains of brain function. The unexpected challenges and specific needs related to caring for children with ASD often have a detrimental effect on the Quality of Life (QoL) of caregivers. In Tanzania, there is growing recognition of ASD, yet research on its impact on caregivers remains limited. This study seeks to assess QoL among caregivers of children and adolescents with ASD, and the associated sociodemographic factors. Findings from this study will help inform comprehensive interventions aimed at improving both, caregiver wellbeing and overall outcomes for families of children with ASD.

Methods: A cross-sectional study was conducted among 106 caregivers of children with ASD. Caregivers were recruited at two tertiary hospitals in urban Dar es Salaam from May to July 2023. The WHOQOL-BREF self-administered questionnaire was employed to assess caregivers' QoL. Sociodemographic data for both children and caregivers were analyzed using medians (interquartile range) and frequency (percentages). The WHOQOL-BREF results were summarized into four distinct domains, with each domain score compared across sociodemographic characteristics using independent t-tests and Analysis of Variance (ANOVA). Simple and multiple linear regression analyses were conducted for each QoL domain to evaluate significant associations between sociodemographic variables and QoL outcomes.

Results: The majority (79.2%) of caregivers reported having poor or average QoL, with impairments noted across all domains, particularly in the environment and social relationships domains. Significant negative predictors of caregiver QoL included older age (> 35 years), being separated or widowed, unemployment, and lack of formal education. Child-related factors associated with poorer caregiver QoL were older age (> 12 years), longer duration since diagnosis, and absence of school placement.

Conclusion: By focusing on this fundamental yet overlooked aspect of ASD research, this study addresses an important gap in literature, highlighting the repercussions on wellbeing of caregivers as they play a critical role in nurturing children with ASD. This study calls for scaling up interventions and support programs aimed at addressing environmental and societal challenges faced by caregivers, in addition to thorough exploration of caregiver QoL through qualitative study designs.