scholarly journals Fenomenologia da Qualidade de Vida de Mães de Crianças Autistas

2020 ◽  
Vol 26 (2) ◽  
pp. 122-134
Author(s):  
Maria P. M CHAIM ◽  
Sebastião B. C. NETO, ◽  
Aminn y F. PEREIRA, ◽  
Virgínia E. S. M. COSTA
Keyword(s):  
Quality Of Life ◽  
Children With Autism ◽  
Structured Interview ◽  
Autism Spectrum ◽  
Primary Objective ◽  
Public Health Services ◽  
Children With Asd ◽  
The Individual ◽  
Phenomenological Psychopathology

The quality of life (QOL) of mothers of children with autism spectrum disorder (ASD) is related to the symptomatic and idiopathic characteristics of the existential condition of the child and is determined by the subjective understandings attributed according to the individual experience. The primary objective of this article is to describe and understand the subjective constructs about the self-referenced QOL of mothers of children with ASD. It is an empirical study, qualitative and based on a reading of phenomenological psychopathology. Participated 10 mothers of children with ASD, users of public health services in Goiânia. The following instruments were used: a sociodemographic and clinical data questionnaire and a semi-structured interview script about QOL. The interviews were submitted to the construction of thematic categories, according to the methodology of Giorgi (1985), and later were correlated with the existential categories of Augras (2004). It was observed that although a standard is sought to understand QOL, each mother has subjective factors that reflect in her way of experiencing the condition of being a mother of a child with special needs. It is concluded that it is the science, when seeking to understand the quality of life of people with similar characteristics, to consider the relevance of the subjective aspects and the meaning that each mother constructs of its own reality.

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.

Siblings of Children with ASD: Promoting Social Communication

2015 ◽  
Vol 22 (1) ◽  
pp. 31-38 ◽  
Author(s):  
Amy L. Donaldson
Keyword(s):  
Quality Of Life ◽  
Social Communication ◽  
Sibling Relationships ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Family Quality Of Life ◽  
Social Communication Skills ◽  
Children With Asd ◽  
The Social

Siblings of children with disabilities have been a focus of research in recent years. Sibling relationships, family quality of life, and incorporation of siblings into intervention have all been areas of investigation. The current paper describes the participation of siblings in intervention with children with autism spectrum disorder (ASD). Sibling-mediated intervention, modeled after peer-mediated intervention, has been shown to increase the social communication skills of children with ASD, and families have reported satisfaction and increased quality of life following such intervention. Clinical implications and ideas for supporting siblings and families of children with ASD are discussed.

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 A Mixed-Methods Evaluation of Parent-Assisted Children’s Friendship Training to Improve Social Skills and Friendship Quality in Children with Autism in Malaysia

2021 ◽  
Vol 18 (5) ◽  
pp. 2566
Author(s):  
Sing Yee Ong ◽  
Samsilah Roslan ◽  
Nor Aniza Ahmad ◽  
Ahmad Fauzi Mohd Ayub ◽  
Chen Lee Ping ◽  
...  
Keyword(s):  
Social Skills ◽  
Rating Scales ◽  
Friendship Quality ◽  
Children With Autism ◽  
Structured Interview ◽  
Autism Spectrum ◽  
Children With Asd ◽  
The Social ◽  
Friendship Training

Background: This study evaluates the effectiveness of parent-assisted children’s friendship training intervention for enhancing friendship quality and social skills among children with autism spectrum disorders (ASD). We conducted a quasi-experimental study to investigate the effective outcomes of social skills and friendship quality in the pre-and post-parent-assisted CFT intervention phases; Methods: to conduct a 12-week field session, 30 children with their parents were selected. The Social Skills Improvement System Rating Scales and the Quality of Play Questionnaire-Parent were used to assess the effectiveness of the parent-assisted children’s friendship training during pre-and post-intervention. A semi-structured interview with parents was conducted at the end of the session; Results: findings revealed that intervention improved the social skills of these children. Additionally, the friendship quality of children with ASD improved before and after the intervention, however, engagement remained unchanged. Parents also showed some sort of improvement after the session as they reported a heightened sense of fear and resistance, awareness, learning and adjustment, change is not easy, and identifying support; Conclusions: there was clear evidence that children with ASD benefitted from parent-assisted CFTs in terms of social skills and friendship quality. However, larger and controlled studies are required to draw firm conclusions about this kind of intervention.

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.

scholarly journals Experiences of Family Members of Children with Autism

2021 ◽  
Vol 15 (1) ◽  
pp. 367-372
Author(s):  
Claudia Maria Sousa de Carvalho ◽  
Islana Caminha Morais ◽  
Juliana da Silva Borges ◽  
Maria Clara Araújo Oliveira ◽  
Ana Eduarda Sousa de Carvalho ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Family Members ◽  
Children With Autism ◽  
Structured Interview ◽  
Autism Spectrum ◽  
Autistic Children ◽  
Lack Of Information ◽  
Positive Feelings ◽  
Negative Feelings

Introduction: Autism spectrum disorder is characterized by the change in the behavior-interaction-communication, with different levels of impairment. Objectives: This study aims to describe the experiences of family members of children with autism and discuss strategies to improve the quality of life of family members. Methods: A descriptive, exploratory study with a qualitative approach was carried out in a self-help association for autism, located in the city of Teresina/PI, Brazil. Data collection took place in September and October 2019 through the application of a semi-structured interview. Eighteen (18) family members of children with autism in the Association of Friends of Autistic Individuals (AMA) participated in the study. Bardin’s content analysis was the technique used for data analysis. Results: The results showed experiences of negative feelings on the part of family members who lived with autistic children, such as frustration and pain, but also positive feelings of affection and dedication and state of neutrality. The daily life of family members involved the experience of difficulties due to the care of the autistic children, in addition to the lack of information regarding different cases of autism. Therefore, it is necessary to include family members and children in support networks with the objective of making them a part of society with the help of the multidisciplinary team. Conclusion: The present research showed that the experiences of family members of children with autism are difficult at first, but with daily learning and interaction, they become rewarding. The study also reinforces the importance of team in the care of autistic children and highlighted the relevance of improving the family’s quality of life, which can also reflect on the quality of care of that individual.

scholarly journals Savouring as an Intervention to Decrease Negative Affect in Anxious Mothers of Children with Autism and Neurotypical Children

2021 ◽  
Vol 11 (5) ◽  
pp. 652
Author(s):  
Ariel Pereira ◽  
Atiqah Azhari ◽  
Chloe Hong ◽  
Gerin Gaskin ◽  
Jessica Borelli ◽  
...  
Keyword(s):  
Negative Affect ◽  
Positive Affect ◽  
Children With Autism ◽  
Well Being ◽  
Autism Spectrum ◽  
Positive Experience ◽  
Children With Asd ◽  
Mother Child Relationships ◽  
Potential Benefits ◽  
The Individual

Savouring is an emotion regulation strategy and intervention that focuses on the process of attending, intensifying and prolonging positive experiences and positive affect associated with these memories. Personal savouring involves a reflection on positive memories that are specific to the individual and do not involve others. In contrast, relational savouring entails reflecting on instances when people were responsive to the needs of their significant others. Such interventions hold potential benefits in enhancing positive affect (PA) and reducing negative affect (NA) for both parents of children with autism spectrum disorder (ASD) and parents of neurotypical children. Adults with greater symptoms of generalised anxiety have been found to have less PA and more NA. However, no study has investigated the effects of a mother’s anxiety symptoms on the efficacy of savouring in enhancing PA and reducing NA. Thus, this paper combined personal and relational savouring to investigate whether savouring may enhance PA and reduce NA of a pooled sample of mothers of neurotypical children and mothers of children with ASD. 52 mothers of neurotypical children and 26 mothers of children with ASD aged 3–7 years old were given a series of questionnaires and randomly assigned to either relational savouring or personal savouring conditions. In relational savouring, mothers were asked to reflect upon a shared positive experience with their child while in the personal savouring condition, a personal positive experience was recalled. Across mothers of children with ASD and neurotypical children, findings suggest that savouring leads to a decrease in NA (p < 0.01) but not increases in PA. Similarly, mothers with higher levels of anxiety experience a greater decrease in NA (p < 0.001) compared to mothers with lower levels of anxiety post-savouring. This study proposes that a brief savouring intervention may be effective among mothers of preschoolers. As lower levels of negative affect is linked to healthier psychological well-being, mothers might be able to engage in more effective and warm parenting after savouring exercises, which would cultivate positive mother-child relationships that benefit their children in the long-term.

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