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Perceived Burden in Caregivers of Children with Autism Spectrum Disorder
Shrijana Pandey1, Chandrakala Sharma2
1Department of B.Sc. Nursing, Kathmandu Medical College, Kathmandu University, Kathmandu, Nepal.
Insights
Caregivers of children with Autism Spectrum Disorder (ASD) experience moderate to severe burden, significantly linked to their emotional state and social life. Understanding these factors is crucial for supporting families affected by ASD.
Area of Science:
- Neurodevelopmental Disorders
- Psychology
- Public Health
Background:
- Autism Spectrum Disorder (ASD) is a lifelong neurodevelopmental condition impacting social interaction and behavior.
- Caregiving for children with ASD presents unique challenges, often leading to significant caregiver burden.
- This burden can negatively affect the physical and mental well-being of parents and guardians.
Purpose of the Study:
- To assess the extent of burden experienced by caregivers of children with Autism Spectrum Disorder.
- To identify factors associated with caregiving burden in this population.
Main Methods:
- A descriptive cross-sectional study was conducted with 61 parents of children with ASD in Kathmandu Valley, Nepal.
- Purposive sampling was employed to recruit participants.
- The Zarit Burden Interview-22 (ZBI-22) was used to measure perceived caregiver burden.
Main Results:
- The average burden score was 41.49±12.25, indicating a moderate to severe level of burden among caregivers.
- Caregiver burden was found to be significantly associated with the level of education.
- Anxiety and depression levels were also significantly correlated with the burden experienced by caregivers.
Conclusions:
- Caregiving burden in parents of children with ASD is substantial and significantly impacts their emotional status and social life.
- Interventions addressing emotional well-being and social support are critical for mitigating caregiver burden.
- Further research is needed to explore culturally specific support mechanisms for families raising children with ASD.
Background:
Autism Spectrum Disorder is a lifelong developmental disorder that affects children and results in deficit in social interaction, communication and display of unusual pattern of behavior. Though caregiving is a normal parental duty, providing intensive care to a child with long-term problem is burdensome and impacts both physical and mental health of caregivers. The aim of this study was to obtain a picture of burden among caregivers raising children with Autism Spectrum Disorder.
Methods:
We conducted a descriptive cross-sectional study to assess the burden of caregiving among sixty one parents of children with Autism Spectrum Disorder in the Kathmandu Valley, Nepal, using purposive sampling technique. The burden perceived by caregivers was assessed using standard tool Zarit Burden Interview-22.
Results:
Average burden score was 41.49±12.25 which indicates that caregivers experienced moderate to severe range of burden. Level of education, anxiety and depression was found to be significantly associated with burden of caregiving.
Conclusions:
The study concluded that the burden of caregiving is most remarkably associated with emotional status and social life of the caregivers.
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