Health-related quality of life of intellectually disabled children attending a special school in Puducherry-A cross-sectional study

Abstract

Introduction: Health-related quality of life (HRQOL) is a measure of an individual’s psychosocial, emotional, and physical well-being. Around 1 in 20 children are less than 15 years of age and are living with a moderate-to-severe form of disability. Thus, our study aims to determine the HRQOL of intellectual disabled (ID) children attending a special school in Puducherry and to determine the socio-demographic factors influencing the level of HRQOL. Methodology: A cross-sectional analytical study was conducted among 350 ID children attending a selected special school in Puducherry over 1 year. By the universal sampling method, all the caregivers of ID children were recruited and the parent proxy form of Pediatric Quality of life Inventory scale version 4.0 (PedsQL ver 4.0) was used to assess the level of HRQOL of ID children. The data were analyzed using the Statistical Package for Social Science version 16.0 (SPSS ver. 16.0) and the statistical significance was set at P value <0.05. Results: Among the 350 respondents, a majority of the caregivers were mothers (78.9%) and 65.7% were homemakers by occupation. Most of the respondents were from the nuclear family (77.7%) and 55.1% were from urban areas. The mean age of ID children was 12 (±3.8) years; 61.2% were males and 40.8% of the children had a moderate form of ID. Conclusion: The HRQOL of ID children is found to be lower. The factors influencing the lower HRQOL were age, the intelligent quotient (IQ) of ID children, and type of marriage of the caregivers.

The physical and psychosocial impact of a school‐based running programme for adolescents with disabilities

“…The increase in the PedsQL ™ score by 12.5 points was not only statistically significant, but clinically significant as well, as a change in greater than 4.36 on the PedsQL ™ is required for clinical significance (Varni et al 2001). While there were improvements in PedsQL ™ scores following the intervention, the measured scores of the participants from this study were lower than the reported scores of their TD counterparts (Sasinthar et al 2022 Informal reports from the parents and teachers of the participants revealed other positive impacts on QoL. Parents reported that after participating in the running programme, their child slept better.…”

“…While there were improvements in PedsQL™ scores following the intervention, the measured scores of the participants from this study were lower than the reported scores of their TD counterparts (Sasinthar et al . 2022; Özkan & Kale 2023) and are more similar to those seen in individuals with Down syndrome (Fernández Scotto & Eymann 2023). The improvements on QoL may have been facilitated by the group‐based setting of the running programme.…”

Cognitive facet and paradigm of the caregivers of children with developmental problems in Eastern India

“…[ 13 ] In a study conducted among intellectually disabled children attending special schools in South India, the research group observed that Health-related quality of life was quite low. [ 14 ]…”

Quality of Life in Individuals with Intellectual and Developmental Disabilities: The Congruency Effect between Reports

“…Considering that there are 200 million individuals with IDD worldwide (more or less 2.6% of the world population) [ 48 ], the fact that individuals with IDD have lower QoL values compared to non-disabled individuals [ 42 , 49 ] and that QoL decreases with advancing disability and age [ 50 ], a continued commitment to specialized support, assistance, and services is needed. On the other hand, the growing increase of individuals with IDD in support institutions makes the study of QoL relevant.…”