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.
Persons with disabilities (PwDs) are less likely to access health care facilities, education, and employment in their day-to-day life. They are more likely to experience higher rates of neglect and abuse. The present COVID-19 pandemic situation has further affected the PwDs in terms of physical and social neglect. Moreover, the concept of social distancing, using a face mask, and following cough hygiene, which is fundamental in controlling the spread of COVID 19, is likely to be followed by the person with an intellectual impairment since they are highly dependent on their caretakers for their day to day activities. This scenario is even worse with PwDs who are living in congregate settings like residential camps, nursing facilities, and psychiatric institutions where infectivity is very higher. Thus a pronged approach is needed to assure that PwDs are not left behind during the times of pandemic. This paper argues that PwDs, because of their increased risk for exposure to COVID-19 and its consequences of developing morbidity and even possible deaths, should be prioritized in vaccination strategies. Otherwise, they will be left behind, experiencing disproportionate loss of lives and livelihoods, inaccessible health care services, and disconnection from society.
To identify currently available measures of Health-related quality of life (HRQOL) for intellectually disabled children and to describe their content. A comprehensive retrieval of the English literature from 2001 to 2021 was done in the PubMed and Google Scholar. The terms ‘Intellectual disability’, ‘Differently abled’, ‘Special children’, ‘Differently challenged’, ‘Mental retardation’, ‘Health-related quality of life’, ‘Quality of life’, ‘Burden of intellectual disability’ and ‘India’ were used to identify measures of HRQOL for children’s with intellectual disability. Several tools were identified to measure HRQOL for children with intellectual disability. Many have parent proxy as well as self-report form with good validity and reliability. Though, they were often developed with minimal involvement from families, focus on functioning rather than wellbeing, and have items that sometimes may cause emotional upset. When children with different health problems are compared, the degree of their particular health condition should be measured. Furthermore, overlap of items seems not to be a problem when the HRQOL of children with intellectually disability is studied. Hence, HRQOL assessments are useful for collecting information beyond the clinical symptoms of a health problem thus improving quality of care.
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