Caregiver burden in autism spectrum disorder among low-income countries: a systematic review

Abstract

This review aims to examine the challenges faced by caregivers of children with autism spectrum disorders (ASD) in low-income countries (LICs), highlighting the financial, healthcare, and psychological burdens. The study seeks to explore how these challenges affect caregivers' well-being and identify potential solutions to alleviate their burden. A comprehensive literature review was conducted using peer-reviewed articles and studies focusing on caregiver burden in ASD within LICs. Data was collected from academic databases like ProQuest, PubMed, Embase, Science Direct including all the studies on financial constraints, healthcare access, cultural perceptions, and caregiver quality of life (QoL). Caregivers of children with ASD in LICs face significant challenges due to financial instability, inadequate healthcare infrastructure, and social stigma. This review examines the financial, healthcare, and psychological stressors affecting caregivers in LICs through a comprehensive literature analysis. Thirteen studies met the inclusion criteria and were synthesized in this systematic review. The reasons for the increase in the caregiver burden in LICs can be broadly divided into 3 groups: the role of the ASD severity and comorbidities, the caregiver related factors and other factors like the financial aspects of the caregivers. These studies indicate that primary caregivers, often mothers, experience heightened fatigue, poor mental and physical health, marital strain, and economic hardship, exacerbated by limited access to specialized support. Compared to other developmental disorders, ASD presents a greater burden on families in LICs, where resources are scarce. Research highlights a direct correlation between ASD severity and caregiver stress, underscoring the urgent need for targeted policies, improved healthcare services, and community-based support programs to mitigate caregiver burden and enhance QoL.