New Delhi, July 10
While there are rights for people with disabilities, parents or caregivers are often faced with stress that can significantly affect their physical, mental, and financial conditions, finds a study by researchers from the National Institute of Technology (NIT) Rourkela, on Thursday.
The study suggests providing parents or caregivers raising a child with developmental disabilities like autism, and attention deficit hyperactivity disorder (ADHD) with proper support systems for their well-being.
Published in the Asia Pacific Journal of Social Work and Development, the team investigated how the continuous demands of caregiving impact parent’s physical health, ultimately affecting their overall quality of life.
The research showed that raising children with developmental disabilities presents unique and often lifelong challenges. It includes teaching basic self-care to manage behavioural and sensory difficulties, that can result in deep emotional exhaustion and physical symptoms such as headaches, ulcers, chronic pain, and fatigue, particularly among mothers.
Importantly, the study found that while physical health partly explains how stress affects parents’ health, it does not account for challenges such as financial strain.
The researchers recommended integrating caregiver health screening and stress management into paediatric disability services.
They also advocate for community-based “one-stop†support centres where families can access medical, mental health, and financial support in one place.
“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,†said Dr. Ramakrishna Biswal, Associate Professor, Department of Humanities and Social Sciences, NIT Rourkela.
The team surveyed 400 parents of children with conditions like autism, ADHD, cerebral palsy, and multiple disabilities.
In India, these challenges are often intensified by social stigma, lack of awareness, and limited access to specialised care.
Many parents feel isolated from their communities and are unable to receive support from extended family. Healthcare, therapy, and respite services remain limited in many regions.
"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. Let us recognise their rights and ensure they, too, enjoy a life of dignity and fulfillment," Biswal said.
— IANS
Reader Comments
Excellent research! But will the government act on these findings? We've seen many studies but very little implementation. The "one-stop" support centers sound ideal but need proper funding.
My sister cares for her son with cerebral palsy. The financial strain is crushing - therapies cost more than our monthly income. Why can't health insurance cover these expenses properly?
The social stigma mentioned is so true. When we moved back to India from Canada, the difference in community support was shocking. Neighbors would avoid my child rather than offer help.
Respectfully, while the study is good, it focuses only on urban middle-class parents. What about rural families? They face even greater challenges with no access to basic facilities.
We need corporate India to step up! Companies should offer flexible work hours and caregiver leave policies. Mental health days aren't enough when you're dealing with lifelong caregiving.
As someone working in disability advocacy, I appreciate this study highlighting caregivers' needs. But implementation requires training more professionals - India has severe shortage of special educators and therapists.
We welcome thoughtful discussions from our readers. Please keep comments respectful and on-topic.