Daijiworld Media Network - New Delhi
New Delhi, Jul 10: Despite growing attention to disability rights in India, the everyday struggles of parents and caregivers raising children with developmental disabilities often go unnoticed. A recent study by researchers at the National Institute of Technology (NIT) Rourkela reveals that these caregivers face severe physical, mental, and financial stress, highlighting an urgent need for systemic support.
The study, published in the Asia Pacific Journal of Social Work and Development, examined the impact of long-term caregiving on the health and well-being of parents of children with conditions such as autism, ADHD, cerebral palsy, and multiple disabilities. Surveying 400 parents, the researchers found that the ongoing demands of caregiving often lead to emotional burnout and physical symptoms such as headaches, ulcers, chronic pain, and fatigue—especially among mothers. These challenges significantly diminish caregivers' overall quality of life.
The findings also indicated that while deteriorating physical health partially explains the effects of stress, financial burdens remain a major but separate concern. Many families struggle to access appropriate care and services, compounding their stress and sense of isolation.
Dr. Ramakrishna Biswal, Associate Professor at NIT Rourkela’s Department of Humanities and Social Sciences and the study’s lead author, emphasized that caregiving must not be viewed as a private burden. He called for a shift in mindset, urging society to treat it as a shared responsibility. According to Dr. Biswal, "Disability rights are rightly acknowledged, yet the invaluable contributions of caregivers often remain in the shadows. Caring for a child with developmental disabilities should not rest solely on parents—it is a shared responsibility of family, neighbours, and society."
The researchers proposed several key recommendations: integrating caregiver health and stress assessments into pediatric disability care, and creating community-based support centers where families can access medical, mental health, and financial assistance under one roof.
The study also highlighted that in India, social stigma, limited awareness, and inadequate infrastructure intensify the challenges faced by caregivers. Many parents report feeling isolated, unsupported by extended families, and unable to access essential therapy or respite care.
“Caregiving is a demanding journey, but with non-judgmental support and wholehearted cooperation from trusted individuals and communities, caregivers can find strength, relief, and validation,” said Dr. Biswal. “Let us recognise their rights and ensure they, too, enjoy a life of dignity and fulfillment.”