Quality of life of high-functioning children and youth with autism spectrum disorder and typically developing peers: Self- and proxy-reports

Autism ◽  
2016 ◽  
Vol 21 (2) ◽  
pp. 133-141 ◽  
Author(s):  
Snæfrídur T Egilson ◽  
Linda B Ólafsdóttir ◽  
Thóra Leósdóttir ◽  
Evald Saemundsen
Keyword(s):  
Quality Of Life ◽  
Autism Spectrum Disorder ◽  
Children With Autism ◽  
Well Being ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Typically Developing ◽  
High Functioning ◽  
Proxy Reports

Studies have shown parents to report lower quality of life for their children with autism spectrum disorder than children’s self-report scores and the same applies for data on typically developing children. Our objectives were to: (1) explore how high-functioning children with autism spectrum disorder rate their quality of life compared with paired controls without autism spectrum disorder; (2) explore how parents of high-functioning children with autism spectrum disorder rate their children’s quality of life compared with parents of paired controls; and (3) compare child self-reports of quality of life with their parent’s proxy-reports for both groups of children. Data were collected with the Icelandic self- and proxy-reported versions of the KIDSCREEN-27. Reports of 96 children with autism spectrum disorder, 211 controls and their parents were included in the analyses. Compared with controls, children with autism spectrum disorder had lower means on all quality of life dimensions. Parents of children with autism spectrum disorder evaluated their children’s quality of life lower on all dimensions than did parents of controls. On four out of five dimensions, children with autism spectrum disorder reported better quality of life than did their parents. Despite differences in ratings children with autism spectrum disorder and their parents agreed on the most problematic dimensions, namely, social support and peers and physical well-being. Our results highlight the importance of seeking the viewpoints of both children and their parents.

scholarly journals Leisure and Quality of Life among Parents of Children with Autism Spectrum Disorder – A Review Based Analysis

2021 ◽  
pp. 176-188
Author(s):  
Menezes Ida Sylvia ◽  
Laveena D’Mello
Keyword(s):  
Quality Of Life ◽  
Autism Spectrum Disorder ◽  
Children With Autism ◽  
Well Being ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Assessment Tools ◽  
Children With Asd ◽  
Quality Life

Purpose: Owing to the time-consuming job of caring for their child's family and friends, parents of children with autism spectrum disorder risk losing family relationships. The main aim was to identify and intervene in the quality of life of parents, the interventions offered to parents as primary caregivers of children with ASD. To explore parents' perspectives on beneficent for children with autism in connection with formative years, resources, and to confront the consequences of upraising a child with ASD. Design/Methodology/Approach: Systematic literature, resulting in the publication of 27 studies that focused on the living standards of parents of children with ASD. Systematic literature scrutiny was performed using the search words "autism spectrum disorder," ‘primary caregiver/ parents/ mother” and "Quality of life" in the electronic databases Research gate, Academia, Google Scholar, and PsycInfo. Findings/Result: QOL autism-specific assessment tools were limited and hence, most studies have employed a general measure tool to assess the influence of the diagnosed disorder on the physical and psychological well-being of parents/caregivers. Originality/Value: The sequel of this study advocate that to date, the appraisal of quality life in parents of children with ASD into clinical practice has been rationalized by the shortage of autism-specific scales. As generically do not catch all pertinent aspects of living with ASD raising the need for immediate measures. Implementing parental interventions in parallel with the child’s interventions may raise QOL. Paper Type: Systematic literature review.

scholarly journals Conceptualisation and Development of a Quality of Life Measure for Parents of Children with Autism Spectrum Disorder

2014 ◽  
Vol 2014 ◽  
pp. 1-11 ◽  
Author(s):  
Valsamma Eapen ◽  
Rudi Črnčec ◽  
Amelia Walter ◽  
Kwok Ping Tay
Keyword(s):  
Quality Of Life ◽  
Autism Spectrum Disorder ◽  
Convergent Validity ◽  
Assessment Tool ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Typically Developing ◽  
Children With Asd

Parents of children with autism spectrum disorder (ASD) tend to experience greater psychological distress than parents of typically developing children or children with other disabilities. Quality of Life (QoL) is increasingly recognised as a critical outcome measure for planning and treatment purposes in ASD. There is a need for ASD-specific QoL measures as generic measures may not capture all relevant aspects of living with ASD. This paper describes the conceptualisation and development of an autism-specific measure of QoL, the Quality of Life in Autism Questionnaire (QoLA) for parents and caregivers of children with ASD, that is suitable to clinical and research settings. Preliminary psychometric properties (reliability and validity) of the measure are also presented. The QoLA has 48 items in two subscales: one comprising QoL items and the second a parent report of how problematic their child’s ASD symptoms are. A study involving 39 families suggested the QoLA has excellent internal consistency as well as good known-groups validity between parents of children with ASD and those who were typically developing. The QoLA also showed good convergent validity with other measures of QoL and ASD symptom severity, respectively. The QoLA may be a valuable assessment tool and merits further psychometric evaluation.

scholarly journals KEYme: Multifunctional Smart Toy for Children with Autism Spectrum Disorder

2021 ◽  
Vol 13 (7) ◽  
pp. 4010
Author(s):  
Raquel Cañete ◽  
Sonia López ◽  
M. Estela Peralta
Keyword(s):  
Autism Spectrum Disorder ◽  
New Technologies ◽  
Children With Autism ◽  
Well Being ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Typically Developing ◽  
Functional Requirements ◽  
Smart Products

The role that design engineering plays in the quality of life and well-being of people with autism spectrum disorder around the world is extremely relevant; products are highly helpful when used as “intermediaries” in social interactions, as well as in the reinforcement of cognitive, motor and sensory skills. One of the most significant challenges engineers have to face lies in the complexity of defining those functional requirements of objects that will efficiently satisfy the specific needs of children with autism within a single product. Furthermore, despite the growing trends that point toward the integration of new technologies in the creation of toys for typically developing children, the variety of specialized smart products aimed at children with autism spectrum disorder is very limited. Based on this evidence the KEYme project was created, where a multifunctional smart toy is developed as a reinforcement system for multiple needs which is adaptable to different kinds of autism for therapies, educational centers or family environments. This approach involves the knowledge transfer from the latest neuroscience, medicine and psychology contributions to the engineering and industrial design field.

Quality of Life in Families of Young Children With Autism Spectrum Disorder

2019 ◽  
Vol 124 (6) ◽  
pp. 535-548 ◽  
Author(s):  
Catherine Mello ◽  
Mélina Rivard ◽  
Amélie Terroux ◽  
Céline Mercier
Keyword(s):  
Quality Of Life ◽  
Autism Spectrum Disorder ◽  
Young Children ◽  
Children With Autism ◽  
Well Being ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Family Characteristics ◽  
Young Children With Autism

Abstract The present study investigated family quality of life (FQOL) as experienced by 493 mothers and fathers (295 families) of young children with autism spectrum disorder (ASD) prior to receiving early intervention services in the province of Québec. These families were most satisfied with their physical and material well-being and least satisfied with their family interactions. Children's level of functioning across various standardized and subjective measures were positively associated with parents' FQOL. In both parents, family characteristics associated with financial and personal resources were also linked to FQOL. The child's age and the number of children were associated with mothers' FQOL. Overall, these findings provide a portrait of ASD-related stressors and resources relevant to both parents during the early childhood period.

scholarly journals Parent-observed thematic data on quality of life in children with autism spectrum disorder

Autism ◽  
2017 ◽  
Vol 23 (1) ◽  
pp. 71-80 ◽  
Author(s):  
Amy Epstein ◽  
Andrew Whitehouse ◽  
Katrina Williams ◽  
Nada Murphy ◽  
Helen Leonard ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Autism Spectrum Disorder ◽  
Children With Autism ◽  
Well Being ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Life Measure ◽  
Parent Observations ◽  
Theory Framework

Domains of quality of life in children with autism spectrum disorder have not previously been explored and there has been no quality of life measure developed for this population. Our study investigated parent observations to identify the domains important to children with autism spectrum disorder who also had an intellectual disability. In all, 21 parents (19 mothers, 2 fathers) of children with autism spectrum disorder (aged 6–17 years) participated in a qualitative study to discuss their child’s quality of life. Thematic analysis using a grounded theory framework was conducted and 10 domains emerged in relation to health and well-being, capacity to perform and develop skills in daily life, and connections with the community and environment. Unique aspects of quality of life included varying levels of social desire, consistency of routines, and time spent in nature and the outdoors, which are not comprehensively captured in existing measures. Parent observations provide an initial framework for understanding quality of life in autism spectrum disorder and support the development of a new measure for this population.

Parents’ perceptions of raising children with autism spectrum disorders in the United States and Arab countries: A comparative review

Autism ◽  
2019 ◽  
Vol 23 (7) ◽  
pp. 1645-1654 ◽  
Author(s):  
Jamal M Al Khateeb ◽  
Louise Kaczmarek ◽  
Muna S Al Hadidi
Keyword(s):  
Quality Of Life ◽  
United States ◽  
Autism Spectrum Disorder ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Arab Countries ◽  
Spectrum Disorder ◽  
Raising Children ◽  
Us Studies

Four databases were searched to identify studies published by Arab researchers on parents’ perceptions of autism spectrum disorder and studies conducted by US researchers and published in systematic reviews of this topic. The electronic search resulted in 14 studies published by Arab researchers and 55 studies published by US researchers. The results showed that autism spectrum disorder has many of the same effects on Arab and American families. Six major areas were identified in the results. Financial difficulties associated with raising children with autism spectrum disorder were mentioned more in Arab studies than in US studies. Arab studies had more emphasis on gender than US studies. The results related to quality of life of parents of children with autism spectrum disorder in Arab studies were equivocal. US studies included comparisons with families without a child with autism spectrum disorder, and addressed factors that were associated with quality of life indicators. More health, educational, and social services were available in United States than in Arab countries, but some frustration was reported by US parents in obtaining appropriate services in some studies. A higher percentage of Arab studies mentioned the role of religious faith than US studies. Finally, social stigma was evidenced in both cultures, but not much research was available.

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