Experience of Parents as Caregivers for Children Diagnosed with Mild Intellectual Disability: An IPA Study

Abstract

According to an epidemiological study conducted by WHO across 55 developing and under-developed countries including Pakistan, prevalence of Mild ID was higher among the children within the age range of 6-10 years and Pakistan lies at higher upper limit when compared to other developing and neighboring nations such as India and Bangladesh (Durkin, Hasan, & Hasan, 1998; Fujiura et al., 2005). As portrayed by literature, being a parent of children diagnosed with disability has significant impact on their lives. Their role as a primary caregiver puts them in a unique position which requires further exploration. Undertaking this role can be difficult for the individuals due to the physical, emotional, and financial constraints experienced by them, functional impairment of the child and his/her continuous dependence on parents (Kudlicka, Clare, & Hindle, 2014). Hence, literature emphasized on the consideration of understanding the phenomenon of caregiving of children with mild ID in Pakistani Population as it has significant impact on the lives of their parents/caregivers across all domains and the area has been overlooked in the already existing research. Some of the themes that emerged were their efforts towards coming to terms with the child’s diagnosis, their making sense of or developing an understanding of their child’s condition and their role as caregivers, caregiving challenges and their impact on different dimensions of their lives such as physiological, psychological, and social and their coping strategies that facilitates their role as caregivers. Most of these findings were in line with the already present literature. However, this research expanded on the experience of the fathers as well along with its comparison with what mothers go through as caregivers. Moreover, this study also emphasized on the caregiving specifically for children with mild ID which was not specifically catered by the literature. Hence, the findings Parents’ Caregiving Experiences iv are expected to be useful for communicating the meaning of the phenomenon that was previously overlooked in the literature. (Creswell, 1998; Dahlberg et al., 2001; Merleau-Ponty, 1945/2002).