Caregiver Burden among Parents of Hearing Impaired and Intellectually Disabled Children in Pakistan

Abstract

Background: Caregiver burden is a multidimensional response to physical, psychological, emotional, social and financial stressors, usually associated with the experience of caring and can be objective or subjective. The objective of current study was to explore the caregiver burden among parents of hearing impaired and intellectually challenged children in Pakistan. Methods: A Comparative cross sectional survey was conducted on n=162 parents of hearing impaired (HI) and intellectually challenged (IC) children from July 2018 to February 2019. Convenient sampling technique was used to collect the data from Parents of hearing impaired and intellectually challenged children with age range 1-16 years in National Institute of Rehabilitation Medicine and Al-Farabi Special Education Institute Islamabad. Caregiver Burden Inventory was used to assess the caregiver burden. Results: The results showed a greater need for respite and other services in both groups. Parents of intellectually challenged children need more respite and other services as compared to hearing impaired children (60.62±11.43 ver. 45.74±11.20, p<0.001). A total of 3 (4.0%) parents of hearing impaired children reported rare need for respite and other services, 32(42.7%) reported sometimes and 40(53.3%) reported frequent need. On the other hand 12(13.8%) parents of intellectually disabled children reported sometimes, 66(75.9%) reported quite frequently and 9(10.3%) nearly always a greater need for respite and other services. Conclusion: The parents of hearing impaired or intellectually challenged children face significant burden of their disabled child. In addition, due to cognitive deficits that lead to behavioural abnormalities the parents of intellectually challenged children face more burden and stress.