RESUMO
BACKGROUND: Health-related Quality of Life (HRQOL) and its relation with functional vision is understudied in cerebral visual impairment (CVI). AIMS: Characterising HRQOL, comparing child self- and parent proxy-reports, and exploring relations with functional vision. METHODS AND PROCEDURES: Seventy-three children with CVI (n females = 33; n males = 40; Mean performance age = 7y2m) were included. HRQOL was measured with Pediatric Quality of Life Inventory (PedsQL) child self- and parent proxy-reports and compared using Wilcoxon signed-rank tests. Risk for impaired HRQOL was evaluated using cut-off scores. Parents scored functional vision using the Insight Questions Inventory and the Flemish CVI Questionnaire. OUTCOMES AND RESULTS: 61â¯% (self-reported) or 66â¯% of children (proxy-reported) were at-risk for impaired total HRQOL. Ratings were correlated (rs = 0.305; p = 0.013); however, children rated higher total HRQOL compared to parent-proxy (r = 0.382; p = 0.002). The Insight Questions Inventory and the PedsQL proxy-report were correlated (rp = -0.454; p < 0.001), the Flemish CVI Questionnaire was negligibly correlated (rp = -0.244; p = 0.041). CONCLUSIONS AND IMPLICATIONS: HRQOL is reduced in CVI, and both child and parent perspectives are crucial. HRQOL and functional vision are intricately related, and impairment in one negatively affects the other.
RESUMO
BACKGROUND: Research indicates that the deficits in social communication and the repetitive, restrictive behaviour of persons with Autistic Spectrum Disorder (ASD) can pose challenges to their functioning in different Quality of Life (QoL) domains, leading to lower levels of life satisfaction. Evidence also indicates that various social and family factors, such as the support received in the community/environment and the composition of the family, could impact the QoL of persons with ASD. AIM: To study the factors influencing the QoL of children with ASD in the Kingdom of Saudi Arabia (KSA) by investigating the perspectives of their parents. METHOD: Questionnaires were completed by 110 parents who had a child with ASD. The questionnaire included the 96-item KidsLife-ASD scale to capture parents' perspectives regarding the difficulties experienced by their child, the ASD support received by their families, and the QoL of the child. The data obtained from the questionnaire were statistically analysed using IBM SPSS software. RESULTS: The difficulties experienced by children with ASD and aspects of the support (services and interventions, and challenges) they receive are factors that influence the QoL of children with ASD in the KSA. Moreover, the number of children in the family, the birth order of child with ASD, and the severity of ASD symptoms are factors that influence parents' perceptions of their children's difficulties, family ASD support, and the child's QoL. CONCLUSIONS: Saudi parents who have one child with ASD believed that the QoL of their child was high and confirmed that the difficulties experienced by the child and the support received by the family were factors which influenced the QoL of a child with ASD.