The parents of children with developmental disabilities suffer from severe physical and emotional stress, as per a recent study by the researchers of the National Institute of Technology (NIT) Rourkela.
The study has 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 have led to the conclusion. The study showed the parents, providing continuous caregiving suffer from parental health and quality of life.
A caregiving mother faces ill health
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 bodies, emotional state and relationships of the parents.
Health is the product of complex interactions
The research employed the biopsychosocial model, which recognised 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 specialised 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 emphasised 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, neighbours, and society.”
Financial strain
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 paediatric disability services.
A major recommendation of the study involves creating community-based one-stop support centres 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.
Recognising caregivers’ rights
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 recognise caregivers’ rights and ensure they can maintain dignity and fulfilment while providing essential care.
