Impact of Children with Disability on Caregivers: A Cross-sectional Study in Rural Area of Jammu, UT of Jammu and Kashmir, India

Abstract

Introduction: Children who are born with disability, more so intellectual disability are dependant on their parents for their daily needs. The presence of disabled child in the family adds to the caregiver burden which may read to emotional distress manifesting as anger, depression, stigma, etc. The study aimed to assess both the positive and negative impacts of having a disabled child in the family on caregivers. Methodology: The present, cross-sectional study was conducted in a rural area of Jammu district using simple random sampling, two health zones out of eight were selected for the conduct of the study. All the disabled children were identified and their parents were interviewed using National Institute of Mental Health-Disability Impact Scale Scale after taking an informed consent from them (IECGJ)(NO: IEC/GMC/2019/892). Results: During the course of the study, a total of 101 caregivers of disabled children were interviewed. Both negative and positive impact on the caregivers was found to be in close approximation to the tune of 15%–16%. Among the negative impacts, financial burden was the most dominant domain followed by physical care of the child and caregiver health being affected. Conclusion: It would be pertinent to conclude that we need to empower the caregivers as an important step for the inclusion of these special children in the society. In this context, few recommendations have been discussed in the present study.