Quality of life among parents of South African children with autism spectrum disorder

2018 ◽  
Vol 30 (4) ◽  
pp. 226-231 ◽  
Author(s):  
Ayman Alhazmi ◽  
Reneva Petersen ◽  
Kirsten A Donald
Keyword(s):  
Quality Of Life ◽  
Autism Spectrum Disorder ◽  
South African ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Life Assessment ◽  
Children With Asd ◽  
The Mean

AbstractObjectiveTo describe the quality of life (QOL) of South African parents caring for children with autism spectrum disorder (ASD) as compared with parents of typically developing (TD) children from the same community.MethodsA cross-sectional study was done evaluating the QOL of parents of 52 children (26 parents of children with ASD versus 26 parents of TD children) using a structured measure, (World Health Organization Quality of Life Assessment-BREF).ResultsThe mean age of the children with ASD was 64.9 months (SD 14.5) versus 60.1 months (SD 13.5) for TD group. There was a male predominance among group of children with ASD (48 boys, four girls). The mean parental age of the ASD group was 32.9 years (SD 7.8) compared with 33.8 years (SD 6.8) for the TD group. As compared with parents of the TD children, parents of children with ASD had lower mean QOL scores in the four QOL domains: physical, psychological, social and environmental health (p<0.0001). the domain where the discrepancy between groups was greatest was the physical domain Where the mean score was 52.1 (SD 18.7) in the ASD group and 92 (SD 10.4) in the TD group. Lower income, severity level of ASD and lack of access to school placement of children with ASD were found significantly associated with parents’ QOL domains.ConclusionQOL of parents of children with ASD is significant lower than that of the parents of their TD peers across all domains and is an important component in management of the family which needs to be explored and addressed.

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 Self-compassion, ego-resiliency, coping with stress and the quality of life of parents of children with autism spectrum disorder

PeerJ ◽  
2021 ◽  
Vol 9 ◽  
pp. e11198
Author(s):  
Anna Pyszkowska ◽  
Kamila Wrona
Keyword(s):  
Quality Of Life ◽  
Autism Spectrum Disorder ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Coping With Stress ◽  
Self Compassion ◽  
Children With Asd ◽  
Ego Resiliency

Background The literature shows a fairly coherent picture of the types of difficulties parents face. Adaptive both coping styles and resources, such as self-compassion and ego-resiliency, indicated as important predictors of the quality of life among parents of children with autism spectrum disorder. The aim of the study was to determine the links between self-compassion and ego-resiliency, coping with stress and quality of life among parents of children with autism spectrum disorder in a Polish sample (N = 76). Methods A cross-sectional study was conducted. The CISS, Self-Compassion Scale-Short, Ego-Resiliency Scale, and Quality of Life Questionnaire were used. Results Regression analysis was carried out to address the research question. It was confirmed that both resources studied exhibited negative relations with emotion-oriented coping, while ego-resiliency was also positively correlated with task- and avoidance-oriented strategies. The hierarchical multiple regression conducted in three steps indicated that ego-resiliency (18%) and emotion-oriented (14%) were the strongest predictors of quality of life among parents of children with ASD. Conclusions The obtained results proved that ego-resiliency and a task-oriented coping strategy were important indicators of the quality of life of parents of children with ASD.

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 Systematic review of tools to measure outcomes for young children with autism spectrum disorder

2015 ◽  
Vol 19 (41) ◽  
pp. 1-506 ◽  
Author(s):  
Helen McConachie ◽  
Jeremy R Parr ◽  
Magdalena Glod ◽  
Jennifer Hanratty ◽  
Nuala Livingstone ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Autism Spectrum Disorder ◽  
Young People ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Measurement Properties ◽  
Children With Asd

BackgroundThe needs of children with autism spectrum disorder (ASD) are complex and this is reflected in the number and diversity of outcomes assessed and measurement tools used to collect evidence about children’s progress. Relevant outcomes include improvement in core ASD impairments, such as communication, social awareness, sensory sensitivities and repetitiveness; skills such as social functioning and play; participation outcomes such as social inclusion; and parent and family impact.ObjectivesTo examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to the age of 6 years. To identify outcome areas regarded as important by people with ASD and parents.MethodsThe MeASURe (Measurement in Autism Spectrum disorder Under Review) research collaboration included ASD experts and review methodologists. We undertook systematic review of tools used in ASD early intervention and observational studies from 1992 to 2013; systematic review, using the COSMIN checklist (Consensus-based Standards for the selection of health Measurement Instruments) of papers addressing the measurement properties of identified tools in children with ASD; and synthesis of evidence and gaps. The review design and process was informed throughout by consultation with stakeholders including parents, young people with ASD, clinicians and researchers.ResultsThe conceptual framework developed for the review was drawn from the International Classification of Functioning, Disability and Health, including the domains ‘Impairments’, ‘Activity Level Indicators’, ‘Participation’, and ‘Family Measures’. In review 1, 10,154 papers were sifted – 3091 by full text – and data extracted from 184; in total, 131 tools were identified, excluding observational coding, study-specific measures and those not in English. In review 2, 2665 papers were sifted and data concerning measurement properties of 57 (43%) tools were extracted from 128 papers. Evidence for the measurement properties of the reviewed tools was combined with information about their accessibility and presentation. Twelve tools were identified as having the strongest supporting evidence, the majority measuring autism characteristics and problem behaviour. The patchy evidence and limited scope of outcomes measured mean these tools do not constitute a ‘recommended battery’ for use. In particular, there is little evidence that the identified tools would be good at detecting change in intervention studies. The obvious gaps in available outcome measurement include well-being and participation outcomes for children, and family quality-of-life outcomes, domains particularly valued by our informants (young people with ASD and parents).ConclusionsThis is the first systematic review of the quality and appropriateness of tools designed to monitor progress and outcomes of young children with ASD. Although it was not possible to recommend fully robust tools at this stage, the review consolidates what is known about the field and will act as a benchmark for future developments. With input from parents and other stakeholders, recommendations are made about priority targets for research.Future workPriorities include development of a tool to measure child quality of life in ASD, and validation of a potential primary outcome tool for trials of early social communication intervention.Study registrationThis study is registered as PROSPERO CRD42012002223.FundingThe National Institute for Health Research Health Technology Assessment programme.

Development and Validation of a Questionnaire to Assess Parent Reported Quality of Life Pre and Post Vision Therapy in a Population with Autism Spectrum Disorder

2019 ◽  
pp. 195-207
Keyword(s):  
Quality Of Life ◽  
Autism Spectrum Disorder ◽  
Social Behavior ◽  
Psychometric Properties ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Visual Behavior ◽  
The Mean ◽  
Vision Therapy

Background: Autism spectrum disorder is characterized in part by atypical behavior in the communication, social, and visual domains. Success in vision therapy is judged not only by changes in optometric findings, but through improvement in quality of life involving communication, social behavior and visual behavior. It would therefore be beneficial to have a validated questionnaire to assess parent reported quality of life pre and post vision therapy specific to patients with autism spectrum disorder. To our knowledge, a questionnaire of this nature has not been previously published in the literature. Methods: Questionnaire items were generated through surveying medical literature based on symptoms in three different categories: visual behavior, social behavior and communication. A pool of 34 questions was developed initially and then with thorough discussion with other experts, a 20-point questionnaire was developed with each item reflected in the construct concept. A draft of 20 questions was then sent to 10 subject experts with clinical experience in the field for more than 20 years, to review the pooled items. Validity and reliability was established prior to assessing the psychometric properties of the ASD/QOL-VT. Prospective observational study was conducted for a duration of 18 months. The study included individuals undergoing vision therapy in the age range of 3 to 15 years who had been diagnosed with ASD. The questionnaire was administered to parents of these children prior to the start of vision therapy. All subjects completed a minimum of 60 vision therapy sessions. The questionnaire was readministered after completing 60 sessions of vision therapy. Results: Cronbach’s alpha value for this questionnaire was 0.93, which reflected very good internal consistency. Factorial analysis yielded four factors with an Eigen value exceeding 1.0 which accounted for 68% variation in the model. The Cronbach alpha value for subscales identified by factorial analysis is 0.97 indicating excellent internal reliability. The mean pre vision therapy social behavior, communication and visual behavior score was 12.0±3.21, 17.07±4.57 and 26.97±6.41 respectively. The mean post vision therapy scores for social behavior, communication and visual behavior was 8.27±4.16, 11.33±5.27 and 17.93±6.52 respectively. On paired t test, the mean difference in score was statistically significant with P<0.001 in all three subcategories. Conclusions: Our study presents the development of a valid and reliable parent questionnaire, the ASD/QOL-VT, that judges communication, social behavior, and visual behavior in autism. Results of the study conducted indicate that vision therapy can result in significant improvements in the quality of life of patients with ASD as judged by their parents. This is evidenced by statistically significant changes in psychometric properties of the ASD/QOL-VT in social behavior, communication and visual behavior.

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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