Affiliation:
1. Department of Disability and Human Development, University of Illinois at Chicago, Chicago, IL, USA
Abstract
Many families of adults with intellectual and/or developmental disabilities in India experience difficulty in accessing services/supports, due to lack of awareness/knowledge of disability rights/laws and available services, and in accessing the services. There remains insufficient research on the information needs of these caregivers and on designing interventions that aim to increase their awareness/knowledge about human rights and supports/services. A strengths-based mixed methods needs assessment was conducted to understand the information needs of these family caregivers. Results showed that caregivers ≥50 years had significantly higher information needs than younger caregivers. Specifically, caregivers with no proficiency in English needed more information on the available services for the care recipients (n = 100). Qualitative results showed that very few caregivers had any awareness or access to information on human rights, disability-related laws/policies or available supports/services (n = 15). Study findings underscore the government’s role in improving awareness-raising initiatives and imparting the information in multiple Indian languages.
Reference56 articles.
1. Needs Assessment and Asset/Capacity Building: A Promising Development in Practice
2. American Academy of Pediatrics (2021) Addressing Low Health Literacy and Limited English Proficiency. Available at: https://www.aap.org/en/practice-management/providing-patient-and-family-centered-care/addressing-low-health-literacy-and-limited-english-proficiency/
3. Addressing the Visible and Invisible Gaps and Challenges in the Diagnosis and Management of Intellectual Disability
4. Scoping review of toolkits as a knowledge translation strategy in health