2025, Vol. 7, Issue 2, Part A

author(s)
Maj Liji Abraham, Capt Sneha Sunny, Suman Dhaka and Devipriya

abstract

Introduction: Autism Spectrum Disorder (ASD) is a lifelong neurodevelopmental condition that significantly impacts not only the affected child but also the primary caregivers, often leading to substantial emotional, physical, and social strain. In low-resource settings, caregivers- typically mothers-play a central role in managing the child's needs, which can negatively affect their Quality of Life (QoL). Despite increasing recognition of ASD, caregiver well-being remains underexplored in the Indian context.

Methods: A descriptive cross-sectional study was conducted among 49 primary caregivers of children diagnosed with ASD. Participants were selected using systematic random sampling in a tertiary care hospital. Data was collected using a semi structured sociodemographic questionnaire comprising of socio demographic variables and the standardized Quality of Life in Autism-Parent Version (QoLA-P), which assessed both general QoL and the impact of ASD symptoms on daily life.

Results: The study revealed that 42.9% of caregivers experienced low QoL, 38.8% had moderate QoL, and only 18.4% reported high QoL. A statistically significant association was observed between QoL and the duration of the child’s illness (p< 0.05), suggesting prolonged caregiving contributes to increased burden.

Discussion: The study underscores the multidimensional challenges faced by caregivers of children with ASD. Factors such as prolonged caregiving, lack of social support, and emotional exhaustion contribute to diminished QoL. These findings highlight the urgent need for caregiver-centered interventions, psychosocial support programs, and policy-level initiatives to address caregiver well-being.

Conclusion: Caregivers of children with ASD face considerable challenges that adversely affect their quality of life. Incorporating caregiver support into autism care frameworks is essential to enhance both caregiver and child outcomes. Routine assessment of caregiver well-being should be integrated into pediatric neurodevelopmental services.