A research study conducted by the National Institute of Technology (NIT) Rourkela has drawn attention to the significant physical and emotional toll experienced by parents of children with developmental disabilities. The study, led by Dr Ramakrishna Biswal, Associate Professor in the Department of Humanities and Social Sciences, and senior research scholar Abhijit Pathak, highlights the need for improved support systems for caregivers.
Published in the Asia Pacific Journal of Social Work and Development, the study examines how continuous caregiving responsibilities affect the physical health of parents and, in turn, their overall quality of life. The research team surveyed 400 parents of children diagnosed with conditions such as autism, cerebral palsy, attention deficit hyperactivity disorder (ADHD), and multiple disabilities. Using culturally relevant tools and statistical analysis, the researchers found that the physical health of a caregiver is closely linked to how they process and respond to stress.
Parents, especially mothers, often take on the bulk of caregiving tasks—ranging from basic self-care assistance to managing behavioural and sensory difficulties. Over time, this constant demand leads to physical symptoms including fatigue, headaches, ulcers, and chronic pain. These ailments can worsen over time, diminishing the caregiver’s capacity to cope effectively.
Dr Ramakrishna Biswal emphasised the need to recognise the role of caregivers in disability-related discourse. “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,” he said. He added that caregivers need support from communities and individuals who offer empathy and assistance without judgement.
The study notes that in India, caregivers often operate in difficult circumstances marked by limited access to healthcare, therapy, and respite services. Social stigma and lack of awareness further isolate families, while extended family support is frequently unavailable. Although the research found that physical health is a major factor in how stress manifests in caregivers, it also observed that broader issues such as financial strain remain unaddressed.
The research adopts the biopsychosocial model, which views health as shaped by interactions between physical, psychological, and social factors. This model helped the researchers understand how physical health not only results from stress but also contributes to its amplification.
Based on their findings, the team recommends that caregiver health assessments and stress management interventions be incorporated into paediatric disability services. They have also proposed the establishment of integrated support centres that provide medical, psychological, and financial services under one roof.
The study concludes that efforts to support children with developmental disabilities must extend to their families. Without adequate support, caregivers may experience burnout, which can compromise the quality of care provided to the child. However, with access to affordable services, inclusive community environments, and focused mental health care, families can be better equipped to manage the challenges they face.
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