Keywords
Intellectually disabled
National Institute of Mental health Disability Impact Scale
Quality of Life
Abstract
Introduction: Intellectual disability is a permanent disability and raising such a child may lead to varied physical, social, emotional response from caregivers. Data of Quality of life of family members of such children is underexplored. Objectives: To measure quality of life of family members of intellectually disabled children. Methodology: A total of 253 parents and 195 siblings eligible and giving consent to participate in the study were interviewed from 382 students enrolled across multiple schools located at one of the Metropolitan cities in Western India. Result: Areas like Social aspect, Physical care, Embarrassment & Sibling effect were more affected unfavorably amongst Parents. However Positive impact was seen amongst 62.8% Parents. Functional impairment was observed in 80% of siblings. Conclusion: Quality of life of Parents was affected but more functional impairment was observed amongst siblings of intellectually disabled children.
References
Park K. Park’s Textbook of Preventive And Social Medicine. 24th ed.
Chaturvedi SK, Malhotra S. A follow-up study of mental retardation on parental attitudes. Indian Journal of Psychiatry 1984, 26(4) : 370-376
Mary NL .Reactions of Black, Hispanic, and White mothers to having a child with handicaps. Mental Retardation 1990,; 28(1): 1-5
A K Malhotra, A K Sharma. A Study To Assess The Disability Impact On Parents Of Children With Mental Retardation Studying In Two Special Schools Of Delhi. Indian J Prev Soc Med . 2013;44(1–2):24–7.
Chandorkar H, Brig. Chakarborty PK. Psychological Morbidity of parents of mentally retarded children. Indian Journal of Psychiatry 2000, 42(3) : 271-274
Ministry of Social Justice and Empowerment Govt of India. Department of Empowerment of Persons with Disabilities (Divyangjan). Available from: http://disabilityaffairs.gov.in/content/page/state-ut-wise-persons.php
Peshawaria R, Menon DK, Bailey D, Skinner D. Nimh disability impact scale. India; p. 17.
Bird HR, Shaffer D, Fisher P, Gould MS. The Columbia Impairment Scale (CIS): pilot findings on a measure of global impairment for children and adolescents. Int J Methods Psychiatr Res. 1993;3(3):167–176
Manisha Gohel, Sidhyartha Mukherjee, & S.K. Choudhary. (2011). Psychosocial impact on the Parents of mentally retarded children in Anand District. Healthline, 2(2), 62–66.
Chhotaray S. (2020). Impact of children’s intellectual disability on parents. International Journal of Indian Psychology, 8(3), 1721-1726. DIP:18.01.176/20200803, DOI:10.25215/0803.176
Gupta, V. B., Mehrotra, P. & Mehrotra, N. (2012). Parental stress in raising a child with disabilities in India. Asia Pacific Disability Rehabilitation Journal, 23(2), 41–52. https://doi.org/10.5463/DCID.v23i2.119
Bunga, D., Manchala, H. G., Ravindranath, N. & Shankar, U. (2020). Children with intellectual disability, impact on caregivers: A cross-sectional study. Indian Journal of Social Psychiatry, 36(2), 151–156. https://doi.org/10.4103/ijsp.ijsp_81_19
Sulaimani, G. H., Kamel, S., Alotaibi, G. & Telmesani, N. (2023). Quality of Life Among Family Caregivers of Disabled Children in Saudi Arabia. Cureus. https://doi.org/10.7759/cureus.41320
Sunitha V., & Murthy Y.V. Siva. (2018). A study of the disability impact among parents of mentally challenged children. Pediatric Review: International Journal of Pediatric Research, 5(10), 497–505. Available online at: www.pediatricreview.in
Thiyam kiran singh, M.V.R. Raju, Vishal Indla, & Indla Ramasubba Reddy. (n.d.). Impact Of disability of mentally retarded persons on their parents.
Goudie, A., Havercamp, S., Jamieson, B., & Sahr, T. (2013). Assessing functional impairment in siblings living with children with disability. Pediatrics, 132(2). https://doi.org/10.1542/peds.2013-0644