Knowledge of Rights of Persons with Disability (RPwD) Act and caregiver burden in depressed parents of children with intellectual disability

Background: Caregiver burden and depression are related in parents of children with intellectual disability (ID), however, few Indian studies have addressed this. The Rights of Persons with Disabilities (RPwD) Act, 2016 outlines several benefits for persons with disability, but no study has looked into the knowledge parents of children with ID have about it. The present study assessed caregiver burden and the knowledge regarding RPwD Act in depressed parents of children with ID.. Methodology: The present cross – sectional, observational study recruited 50 parents of children with ID, diagnosed with Major Depressive Disorder as per DSM – 5. They were administered the Hamilton’s Depression Scale (HAM – D) and Pai and Kapur’s Family Burden Interview Schedule (FBIS) to assess for severity of depression and caregiver burden respectively. A semi-structured questionnaire was developed to assess knowledge of RPwD Act. Results: 26% of depressed parents had severe caregiver burden. Severity of depression correlated positively with caregiver’s and child’s age. Caregiver burden did not correlate with any factor. 88% of the parents were aware about the RPwD Act and certification procedure but more than 50% did not know regarding the specific provisions. Lowest knowledge was seen regarding tax rebates (4%), followed by reservations (6%). Conclusion: Caregiver burden is present in approximately one – fourth of caregivers with depression. Older children and older caregivers have more severe depression. Knowledge regarding tax rebates, educational and financial benefits in the RPwD Act appears to be poor in caregivers with depression.