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      Repercussion of the implementation of the Picture Exchange Communication System - PECS in the overload index of mothers of children with Autism Spectrum Disorder

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          ABSTRACT

          Purpose

          The aim of this study was to analyze the repercussion of the implementation of PECS on the burden index of mothers of children with Autism Spectrum Disorder (ASD).

          Methods

          This was a longitudinal study (CEP 0403/2017). The sample consisted of 20 mother and child with ASD. The mothers were on average 41 years and 5 months and the children were 7 years and 2 months old. Fifteen children were male and five were female. The brazilian version of the Burden Interview scale was applied to verify the level of caregiver burden. The Autism Behavior Checklist (ABC) was applied to the analysis of non-adaptive behaviors and to analyze the lexical repertoire: Auditory and Expressive Vocabulary Tests. The PECS Implementation Program was composed of 24 sessions of individual speech therapy with the active presence of mothers. At the end all children and mothers were reevaluated with part of the instruments.

          Results

          There was a tendency to reduce maternal overload indexes after the implementation of the PECS. There was a significant decrease in non-adaptive behaviors and an increase in the expressive and auditory vocabulary indexes of the children at the final moment of the study. We did not observe a significant correlation between the degrees of overload with age, schooling and intellectual quotient of children, nor schooling and maternal socioeconomic status.

          Conclusion

          It was possible to analyze the repercussion of the implementation of the PECS on the burden of mothers of children with ASD assisted by the Program.

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          Most cited references37

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          Brazilian version of the Burden Interview scale for the assessment of burden of care in carers of people with mental illnesses

          INTRODUCTION: Burden on informal carers of people with mental or physical illnesses has been studied for a long time. Several standardized instruments for the assessment of carer's burden have been developed. The Burden Interview is one of the most frequently used instruments. The aim of the present study is to examine the internal consistency and validity of the Brazilian version of the Burden Interview, designed to examine the burden in carers of individuals with mental illnesses. METHODS: Carers of patients with a diagnosis of depression, aged 60 or over, were assessed for burden (Burden Interview), emotional distress (SRQ-20) and their perception of patients' behavioral and mood disturbances (Behavioral and Mood Disturbance Scale - BMD). Socio-demographic information of patients and carers was collected with a standardized form. The reliability of the Burden Interview was assessed through its internal consistency. Construct validity was assessed through the exam of the associations of carers' burden with their perception of patients' behavioral and mood disturbances, and the carers' burden with carers' distress. RESULTS: Eighty-two carers of elderly patients with depression were included, being forty-eight (58,5%) women. The internal consistency was good, with a Cronbach's alpha of 0.87. The associations between total scores of the Burden Interview and total scores of the SRQ-20 (r=0.37, p=0.001), and between total scores of the Burden Interview with total scores of BMD (r=0.54, p=0.001) were strong, and similar to other studies that examined those associations, indicating a good construct validity of the Brazilian version of the Burden Interview. DISCUSSION: The Brazilian version of the Burden Interview is a standardized and valid instrument that can be used in the study of the impact of mental and physical illnesses on informal carers.
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            Parental Burden and its Correlates in Families of Children with Autism Spectrum Disorder: A Multicentre Study with Two Comparison Groups

            Background: The effects of having a child with Autism Spectrum Disorder (ASD) on parents are multifaceted and pervasive. While ample evidence has been provided that these families are under severe stress, there are still several knowledge gaps and unresolved questions. Objective: This study aimed at quantifying the subjective and objective burden of ASD in mothers and fathers, and at improving the understanding of the interplay between parental burden, child’s characteristics, and parents’ coping resources and strategies. Methods: The parents of 359 children/adolescents with ASD were compared to parents of age-matched patients with Down syndrome (N=145) and Type 1 diabetes mellitus (N=155). Child’s clinical characteristics and parents’ caregiving burden, psychological distress, coping resources and strategies were assessed. Results: The parents of children with ASD reported higher objective and subjective burden, more frequent psychological distress, lower social support. Mothers reported greater subjective burden than fathers. Structural equation modeling showed that the most consistent positive and negative predictors of objective and subjective burden were ASD symptom severity and social support, respectively. Other positive predictors were engagement, distraction and disengagement coping, intellectual disability, and adaptive functioning. Other negative predictors were spiritual wellbeing and hardiness. Some effects were indirect through social support and coping strategies. Conclusion: This study confirmed that parents of children with ASD carry a huge caregiving burden, and added to our understanding of the factors associated with burden. The findings may help inform the design of effective interventions aimed at reducing burden among the parents of children with ASD.
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              Factors Associated with Subjective Quality of Life of Adults with Autism Spectrum Disorder: Self-Report Versus Maternal Reports.

              We examined factors related to subjective quality of life (QoL) of adults with autism spectrum disorder (ASD) aged 25-55 (n = 60), using the World Health Organization Quality of Life measure (WHOQOL-BREF). We used three different assessment methods: adult self-report, maternal proxy-report, and maternal report. Reliability analysis showed that adults with ASD rated their own QoL reliably. QoL scores derived from adult self-reports were more closely related to those from maternal proxy-report than from maternal report. Subjective factors such as perceived stress and having been bullied frequently were associated with QoL based on adult self-reports. In contrast, level of independence in daily activities and physical health were significant predictors of maternal reports of their son or daughter's QoL.
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                Author and article information

                Journal
                Codas
                Codas
                codas
                CoDAS
                Sociedade Brasileira de Fonoaudiologia
                2317-1782
                07 January 2022
                2022
                : 34
                : 3
                : e20210109
                Affiliations
                [1 ] originalDepartamento de Fonoaudiologia, Universidade Federal de São Paulo – UNIFESP - São Paulo (SP), Brasil.
                [2 ] originalDepartamento de Psiquiatria, Universidade Federal de São Paulo – UNIFESP - São Paulo (SP), Brasil.
                [1 ] originalDepartamento de Fonoaudiologia, Universidade Federal de São Paulo – UNIFESP - São Paulo (SP), Brasil.
                [2 ] originalDepartamento de Psiquiatria, Universidade Federal de São Paulo – UNIFESP - São Paulo (SP), Brasil.
                Author notes

                Conflict of interests: nothing to declare.

                Correspondence address: Ana Carina Tamanaha Departamento de Fonoaudiologia, Universidade Federal de São Paulo – UNIFESP Rua Botucatu, 802, São Paulo (SP), Brasil, CEP: 04023-900. E-mail: anacarinatamanaha@ 123456gmail.com

                Author contributions: CF was responsible for collecting, tabulating the data and preparing the manuscript; SCC and JP collaborated with the final elaboration of the manuscript; ACT supervised the collection, collaborated with the data analysis and was responsible for the study design and general orientation of the execution steps and final elaboration of the manuscript.

                Conflito de interesses: nada a declarar.

                Endereço para correspondência: Ana Carina Tamanaha Departamento de Fonoaudiologia, Universidade Federal de São Paulo – UNIFESP Rua Botucatu, 802, São Paulo (SP), Brasil, CEP: 04023-900. E-mail: anacarinatamanaha@ 123456gmail.com

                Contribuição dos autores: CF foi responsável pela coleta, tabulação dos dados e elaboração do manuscrito; SCC e JP colaboraram com a elaboração final do manuscrito; ACT acompanhou supervisionando a coleta, colaborou com a análise dos dados e foi responsável pelo delineamento do estudo e orientação geral das etapas de execução e elaboração final do manuscrito.

                Author information
                http://orcid.org/0000-0002-7547-8047
                http://orcid.org/0000-0001-8403-7078
                http://orcid.org/0000-0002-0287-9296
                http://orcid.org/0000-0001-9915-6299
                Article
                codasAO20210109 00307
                10.1590/2317-1782/20212021109
                9769430
                35019088
                7a4347c9-6212-4582-abb7-693e971b1b36

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 02 May 2021
                : 05 July 2021
                Page count
                Figures: 0, Tables: 6, Equations: 0, References: 30
                Funding
                Funded by: CNPq
                Award ID: 445979/2014-3
                Fonte de financiamento: CNPq (445979/2014-3).
                Categories
                Original Article

                autism spectrum disorder,mothers,caregivers,communication,speech language hearing sciences

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