Children with intellectual disability, impact on caregivers: A cross-sectional study

Abstract

Background: In India, the magnitude of the problem of intellectual disability (ID) hardly needs any exaggeration. In India, the prevalence varies from 0.63% to 7.14%. Depending on the severity of the ID, children tend to be proportionately dependent on their parents. Aim: The aim is to know the disability impact and the type of impact of having an ID child on the parents. Materials and Methods: Hundred parents of ID children attending the outpatient department (OPD) services either for treatment for behavioral issues or rehabilitation services to child psychiatry OPD of tertiary care hospital. The level of ID is assessed using developmental screening test and the International Classification of Diseases-10. The disability impact on parents is assessed using the modified National Institute of Mentally Handicapped Disability Impact Scale (DIS). Results: 56.63% of parents have disability impact as related to the physical care of the child, financial problems (58.87%), loss of support from relatives and inlaws, and maintaining social relations with friends and neighbors due to social restriction (36.75%) domains of DIS. As the severity of ID increased, disability impact concerning physical care is also increased along with specific negative thoughts. Majority of parents (71.72%) did not feel any kind of embarrassment because of the ID child. 67.3% of the parents had a positive impact like improved tolerance and patience. Conclusions: The current study gives the heartening finding that most of the parents of the selected intellectually disabled children viewed that they have a more positive impact of 67.3% which implies that every family with a disabled child will not have a negative impact nor it is a bad fate or misfortune. In many families, it can have a positive impact like increased Self Efficacy, parental and family general satisfaction with life which helps the parents to provide necessary care and support and handle the situation more gracefully.