Examining the Quality of Life and Discrimination Impact on Parents of Children With Autism Spectrum Disorder in Aseer Region, Saudi Arabia: A WHO-QOL Survey.

Abstract

Background Autism spectrum disorder (ASD) is a neurodevelopmental disease marked by social and repetitive or restricted behaviors, as well as communication difficulty. Objectives This survey aimed to assess the quality of life (QoL) of parents with ASDs in the Aseer region of Saudi Arabia using the brief form of the World Health Organization (WHO-QOL) questionnaire. Furthermore, we sought to measure the severity of discrimination experienced by parents of children with ASDs and their impact on QoL. Methodology Using a Google form, a cross-sectional study was carried out online between March and April 2023. The patient records from four different regions of Saudi Arabia were used to recruit study participants. The survey was distributed through well-known social media channels (Instagram, Telegram, Facebook). Results A total of 99 parents were included in this study. The Southern region accounted for the bulk of participants (81.8%, n=81), nearly three-fourths of the children were boys (70.7%), mothers were more common among respondents (65.7%, n=65) than fathers, 66.7% of respondents reported being married, and 78.8% fall into the middle economic class category. The main source of information among the studied population was the Internet (39.4%, n=39), followed by relatives (23.0%, n=23), physicians (8.1%, n=9), and finally books (4%, n=4). The mean scores for the various domains are as follows: physical (58.48 ± 13.84), psychological (62.04 ± 18.08), social relations (61.20 ± 23.24), environment (24.12 ± 14.62), general QoL (72.93 ± 4.30), and general health (73.94 ± 4.63). Nearly half (46.5%) of parents have encountered stigma or discrimination toward their child or family. Individuals who reported experiencing discrimination exhibited significantly lower mean scores in multiple QoL domains than those who did not report discrimination for physical (54.11, ± 14.36vs, 62.26±12.28, p=0.003), psychological (55.80 ± 20.33 vs 67.45 ± 13.94, p=0.002), and social relations (55.43± 24.17 vs 66.20 ± 21.40, p=0.022). Multivariate analysis revealed that discrimination was the only significant predictor of QoL (p < 0.001). Conclusions The QoL of parents having a child with autism is low, moreover, the coincidence of discrimination and stigma significantly lowered QoL.