Suffering in silence: How parents of children with developmental disabilities face emotional stress

Hyderabad: A new study has revealed that parents of children with developmental disabilities suffer from severe physical and emotional stress.

Conducted by researchers at the National Institute of Technology (NIT) Rourkela, the study highlighted the critical gap in the support systems across India.

The study published in the Asia Pacific Journal for Social Work and Development, held among 400 parents caring for children with conditions including autism, ADHD, cerebral palsy, and multiple disabilities, has led to the conclusion. The parents, who provide continuous caregiving, suffer from parental health and quality of life.

The study found that parents, particularly mothers who take more caregiving responsibilities, face significant physical health deterioration. They were found to have common symptoms, including chronic headaches, ulcers, persistent pain, and severe fatigue. Ultimately, such physical ailments result in a damaging cycle, where declining health further reduces the capacity of the parents to cope with caregiving demands.

The NIT Rourkela team, through culturally adapted assessment tools and advanced statistical analysis, discovered that physical health plays a crucial mediating role in how stress affects the physical health, emotional state, and relationships of the parents. The research employed the biopsychosocial model, which recognizes health as the product of complex interactions between physical, psychological, and social factors.

The social and healthcare facilities amplify the suffering of the parents, who often counter social stigma, limited awareness about developmental disabilities, and lack of access to specialized care. Many feel isolated from their communities and struggle to receive support from extended family networks, while healthcare, therapy, and respite services remain scarce in numerous regions.

Dr Ramakrishna Biswal emphasized the societal dimension of the issue and stated, "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, neighbors, and society."

While the study revealed physical health as a significant factor in explaining stress impacts, researchers acknowledged that it doesn't fully account for other challenges, including financial strain. The researchers recommend integrating caregiver health screening and stress management protocols into pediatric disability services.

A major recommendation of the study involves creating community-based one-stop support centers where families can access medical care, mental health services, and financial assistance in a single location. They call for comprehensive support systems that include affordable healthcare, inclusive communities, and targeted mental health interventions.

When caregivers become overwhelmed, isolated, and physically compromised, the quality of care for their children inevitably suffers. The research insists on immediate actions from policymakers, healthcare providers, and communities to recognize caregivers' rights and ensure they can maintain dignity and fulfillment while providing essential care.