scholarly journals Information behaviour of parents of children with autism spectrum disorder (ASD): a case study

2020 ◽  
Author(s):  
Raquel Chávez ◽  
◽  
Martha Sabelli ◽  
Keyword(s):  
Autism Spectrum Disorder ◽  
Information Needs ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Structured Interviews ◽  
Web Searches ◽  
Convenience Sample ◽  
Information Behaviour ◽  
Lack Of Information

Introduction. This investigation focuses on the information behaviour of parents of children with autism spectrum disorder (ASD) inside an organisation (Aletea) located in Montevideo-Uruguay. This study aims to make visible the information needs these parents experience when making decisions for their children’s welfare. It is the first phase of an investigation to provide an indepth comparison with other countries. Method. A literature review, database analyses and web searches were done to standardise the current work with the methodology of the field. Also, with a convenience sample, 12 semi-structured interviews were conducted among parents of this organisation. Analysis. Qualitative analyses were carried out as all the interviews were recorded on audio with prior consent of the interviewees. The questions were classified into categories and sub-categories for a better understanding of the results. Results. Parents' information practices demonstrate obstacles and difficulties in seeking and accessing available and reliable sources regarding autism spectrum disorder. The lack of information generated at local levels leads to consulting and sharing information with their closest contacts and social networks, especially their peers in parent groups. Conclusion. It is considered necessary to continue with this line of research both in Uruguay and around the world since there is a lack of studies on this subject.

Listening to Bedouin fathers of children with autism spectrum disorder

2018 ◽  
Vol 56 (2) ◽  
pp. 345-358 ◽  
Author(s):  
Iris Manor-Binyamini
Keyword(s):  
Autism Spectrum Disorder ◽  
Support Services ◽  
Cultural Context ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Structured Interviews ◽  
Raising Children ◽  
Cultural Perspectives ◽  
Children With Asd

Although children across the world experience autism spectrum disorder (ASD), most research on ASD has been conducted using Western cultural perspectives and has focused primarily on mothers, leaving significant gaps in the literature. This study aimed to address these gaps by exploring the experiences of fathers raising children with ASD in a Bedouin community. To this end, a sample of 19 fathers of children (aged 6–15 years) with ASD living in recognized and unrecognized Bedouin settlements in the Negev participated in ethnographic, semi-structured interviews designed to investigate their experiences with raising a child with ASD in their community. Two major themes emerged: the challenges that Bedouin fathers of children with ASD face, and the influence of socio-demographic and cultural characteristics on their experience. Findings reflect the complex experiences of fathers raising children with ASD in the Bedouin community, stemming from their socio-cultural context and the limited knowledge and support services that are available in the community for these children. This article concludes with recommendations on how to enhance professional sensitivity and provide more culturally tailored services for parents of children with ASD.

Improving peri-operative psychosocial interventions for children with autism spectrum disorder undergoing ENT procedures

2020 ◽  
Vol 134 (9) ◽  
pp. 838-844
Author(s):  
R Fahy ◽  
M Corbett ◽  
I Keogh
Keyword(s):  
Autism Spectrum Disorder ◽  
Special Needs ◽  
Children With Autism ◽  
Psychosocial Interventions ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Structured Interviews ◽  
Social Story ◽  
Staff Members ◽  
Clear Communication

AbstractObjectivesChildren with autism spectrum disorder face a broad range of communication and sensory challenges. Many of these children also have chronic ENT issues. This study aims to better understand these challenges and improve our services for children with autism spectrum disorder.MethodsQuestionnaires and semi-structured interviews were carried out with parents of children with autism spectrum disorder.ResultsThirty-four individuals participated, comprising 9 caregivers and 25 staff members. All parents recognised their critical roles in understanding their children's special needs and sensitivities. Parents and staff stressed the importance of a partnership role that inquired about unique needs, leading to environmental modifications for individual children.ConclusionThe importance of listening to and involving caregivers is a fundamental tenet; parents must be recognised as the experts. Uncertainty must be kept to a minimum, with clear communication in a structured, low-arousal environment for these children. We have listened to parents and staff, and developed a social story.

scholarly journals The Experience of Parents of Children with Autism Spectrum Disorder During the COVID-19 Pandemic: A Qualitative Analysis

2020 ◽  
Author(s):  
China Parenteau ◽  
Stephen Bent ◽  
Bushra Hossain ◽  
Yingtong Chen ◽  
Felicia Widjaja ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Structured Interviews ◽  
Social Situations ◽  
E Learning ◽  
Families With Children ◽  
Direct Feedback ◽  
Level 2

Abstract Families with children with autism spectrum disorder (ASD) face a unique set of challenges with the rise of the COVID-19 pandemic and shelter-in-place related to a diverse set of issues, including explaining COVID-19 and safety precautions in a comprehensible way, building structure in home for e-learning to take place, and guiding children back into social situations and the community. We sought to obtain direct feedback through semi-structured interviews from fifteen parents of children and adolescents from a non-public school for children with level 2 and 3 ASD to both develop an initial guide for families, teachers and clinicians caring for children with ASD and to create awareness in the community about the challenges presented by COVID-19 and shelter-in-place.

scholarly journals Informational support for families of children with autism spectrum disorder

2021 ◽  
Vol 42 ◽  
Author(s):  
Gisele Weissheimer ◽  
Verônica de Azevedo Mazza ◽  
Cibelly Aliny Siqueira Lima Freitas ◽  
Silvana Rodrigues da Silva
Keyword(s):  
Autism Spectrum Disorder ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Care Process ◽  
Informational Support ◽  
Sources Of Information ◽  
Structured Interviews ◽  
Categorical Analysis ◽  
Qualitative Data Analysis Software

ABSTRACT Objective: To identify the sources of informational support used by families of children with Autism Spectrum Disorder. Method: Qualitative and descriptive research carried out in three health institutions and three teaching institutions in Paraná, Ceará and Amapá. 55 family members participated who responded to semi-structured interviews, between September 2018 and 2019. Thematic categorical analysis and the resources of Qualitative Data Analysis Software were used. Results: Families find informational support from several sources, both formal and informal, such as the internet and other sources (books, Workshops, courses, television). Conclusion: Families use different sources of information, however, often incomplete and contradictory, which can generate a new demand on health professionals, in order to integrate access to information in the health care process, since they must be considering benefits and weaknesses that this represents for society.

Genetic evaluation of children with autism spectrum disorders in developing and low-resource areas

Autism ◽  
2021 ◽  
pp. 136236132110555
Author(s):  
Amira T Masri ◽  
Arwa Nasir ◽  
Fatima Irshaid ◽  
Farah Alomari ◽  
Aya Irshaid ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Genetic Testing ◽  
Clinical Guidelines ◽  
Genetic Factors ◽  
Neurodevelopmental Disorder ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Convenience Sample ◽  
Low Resource

Autism spectrum disorder is a neurodevelopmental disorder in which genetic factors play key roles. Limited research has been conducted on genetic testing of children with autism spectrum disorder in low middle-income countries. This prospective cross-sectional study was conducted at the pediatric neurology clinics of three university hospitals in Jordan. Data were obtained from a convenience sample of parents of children with autism spectrum disorder who received care at these hospitals. Research personnel interviewed the parents and completed a questionnaire. A total of 274 parents were interviewed. A minority of children received chromosomal microarray (14.6%) or fragile X syndrome (4.4%) testing, as recommended by clinical guidelines. Karyotyping was performed in 103 (37.6%) patients, and whole-exome sequencing was performed in 9 (3.3%). The most common reason for not performing the recommended diagnostic investigations was that they were not ordered by the physician (185; 67.5%). The majority of children underwent non-genetic evaluations, including brain magnetic resonance imaging (222; 81.0%), electroencephalogram (221; 80.7%), and brain computed tomography scans (136; 49.6%). Only a minority of children with autism spectrum disorder in Jordan receive genetic workup, which may reflect a gap in physicians’ knowledge of clinical guidelines, as well as the availability and affordability of these tests. Lay abstract Autism is the most common neurodevelopmental disorder in children worldwide. Genetic factors play an important role in the risk of developing autism. Determining the genetic cause of autism is key to understanding the biological processes that lead to the clinical manifestations of autism, and can inform the management and even prevention of this condition. Establishing genetic causes of autism requires collection of genetic data on a global scale. Limited research on genetic testing for individuals with autism is available from developing countries in low-resource regions. In this study, we explored the types of investigations ordered for Jordanian children with autism by their physicians. A representative sample of parents of children with autism in Jordan was questioned about the studies that their children received. We found that the recommended genetic testing was only performed in a small number of children with autism. In contrast, most children in the sample received non-genetic testing, which is not routinely recommended. We also explored the sociocultural factors that may influence the decision to perform genetic testing in this population. We discuss our findings in light of the data available from other developing and developed countries.

scholarly journals Análisis del impacto de un programa deportivo en niños con Trastorno del Espectro del Autismo (Analysis of the impact of a sport program on children with Autism Spectrum Disorder)

Retos ◽  
2020 ◽  
pp. 98-105
Author(s):  
José María López Díaz ◽  
Ricardo Moreno Rodríguez ◽  
José Luis López Bastías
Keyword(s):  
Autism Spectrum Disorder ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Slight Reduction ◽  
Structured Interviews ◽  
Sports Activity ◽  
Monthly Basis ◽  
Dsm 5 ◽  
The Impact

A través de la presente investigación se plantea el objetivo de desarrollar un programa socio-deportivo para mejorar las habilidades motrices y las habilidades sociales de niños con trastorno del espectro del autismo, además de estudiar las repercusiones que tiene la práctica deportiva en niños con trastorno del espectro del autismo La actividad física y deportiva puede ser un pilar fundamental para lograr alcanzar un pleno desarrollo en los ámbitos personales y sociales. Para ello, se articula un programa socio-deportivo con una duración de ocho meses, en el que participan 15 niños con trastorno del espectro del autismo, divididos en tres grupos homogéneos y seleccionados a través de entrevistas semiestructuradas realizadas a su núcleo familiar, tomando como criterio de inclusión que tuvieran edades comprendidas entre los seis y los 12 años, además de tener un grado de apoyos necesarios uno o dos (según el DSM-5). El impacto del programa se evalúa a través de un sistema de rúbrica cumplimentado por dos observadores a lo largo de todas las sesiones. Los resultados obtenidos se obtienen a través de la comparación de las puntuaciones medias entre ambos observadores, estableciendo las puntuaciones medias de forma mensual y realizando la prueba de significación de Wilcoxon para muestras relacionadas. Los resultados muestran diferencias significativas entre dos momentos de medición. El primero, al inicio del programa, con la finalidad de establecer una línea base sobre la que comparar el segundo momento, al finalizar el programa. También se puede observar una tendencia de mejora a través del tiempo, con un leve estancamiento entre los meses de enero y febrero, y una leve reducción del rendimiento al finalizar el programa. Abstract. The objective of this research is to develop a social-sport program to improve motor skills and social skills of children with autism spectrum disorder, in addition to studying the repercussions that sports practice has on children with autism disorder. Physical and sports activity can be a fundamental pillar for achieving full development in personal and social fields. To this end, a social-sport program with a duration of eight months is developed, involving 15 children with autism spectrum disorder divided into three homogeneous groups and selected through semi-structured interviews conducted with their family nucleus. Inclusion criteria were being between the ages of six and 12 years old; having degree one or two of necessary support (according to the DSM-5). The impact of the program is evaluated through a rubric system completed by two observers throughout all the sessions. The results are obtained by means of comparison of mean scores between both observers, establishing the mean scores on a monthly basis and performing the Wilcoxon significance test for related samples. The results show significant differences between the two measurement times (the first, at the beginning of the program, in order to establish a baseline against which to compare the second time, at the end of the program). A tendency of improvement can also be observed over time, with a slight stagnation between the months of January and February, and a slight reduction in performance at the end of the program.

Short report: Evaluating the safety and usability of head-mounted virtual reality compared to monitor-displayed video for children with autism spectrum disorder

Autism ◽  
2020 ◽  
Vol 24 (7) ◽  
pp. 1924-1929 ◽  
Author(s):  
Mahan Malihi ◽  
Jenny Nguyen ◽  
Robyn E Cardy ◽  
Salina Eldon ◽  
Catharine Petta ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Virtual Reality ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Short Report ◽  
Negative Effects ◽  
Convenience Sample ◽  
Head Mounted Display ◽  
The Impact

Virtual reality provides a relatively inexpensive way to learn and repeatedly practice skills in personalized, controlled, and safe computer-generated settings. These systems are increasingly receiving attention as an innovative medium for delivering interventions to children with autism spectrum disorder. Although many virtual reality systems are commercially available and their use is increasing, little is known about the safety and usability of these systems for children with autism spectrum disorder. The aim of this study was a first step in addressing this gap. A convenience sample of 35 children with a diagnosis of autism spectrum disorder participated in an immersive head-mounted display virtual reality experience and a control condition (monitor-displayed video). Levels of anxiety and negative effects experienced were not significantly different between the two conditions. Participants reported significantly enhanced spatial presence (p = 0.003; d = 0.3) and naturalness (p = 0.002; d = 0.47) for the head-mounted display–virtual reality condition, and 74% of participants preferred using head-mounted display–virtual reality over monitor-displayed video. These findings provide preliminary evidence to support the safety and usability of head-mounted display–virtual reality for children with autism spectrum disorder. Future studies are needed to replicate the results in a larger sample, a range of virtual reality experiences, and in the context of long-term exposure. Lay abstract This study investigated the safety and usability of a virtual reality experience for children with autism spectrum disorder in a laboratory setting. In our study, the negative effects of head-mounted display–virtual reality were similar to monitor-displayed video watching. At the same time, the participants indicated that the head-mounted display–virtual reality experience provided improved realism and sense of presence. This study is a first step in understanding the impact of head-mounted display on children with autism spectrum disorder.

scholarly journals COVID-19 Related Challenges and Advice from Parents of Children with Autism Spectrum Disorder

2020 ◽  
Vol 2 ◽  
pp. 73-82
Author(s):  
China I. Parenteau ◽  
Stephen Bent ◽  
Bushra Hossain ◽  
Yingtong Chen ◽  
Felicia Widjaja ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Structured Interviews ◽  
Positive Coping ◽  
Children With Asd ◽  
Wide Range ◽  
Families With Children ◽  
And Behavior

With the rise of the COVID-19 pandemic and shelter-in-place, families with children with autism spectrum disorder (ASD) face a unique set of challenges related to a diverse set of issues. A qualitative study was conducted in the form of semi-structured interviews from fifteen parents of children and adolescents from a non-public school for children with ASD. Questions covered the following topic areas: general COVID-19 experiences and concerns, changes in the child’s mood and behavior, changes in parent mood and behavior, and coping/advice. Quotes and descriptions from the participants were reviewed and grouped into thematic areas. Findings showed that parents of children with ASD are facing a wide range of challenges, including explaining COVID-19 and safety precautions to their child in a comprehensible way, assisting with e-learning, and guiding their child back into social situations and the community. As children with ASD have difficulties with transitions, parents stated the importance of creating structure in the home by creating schedules and boundaries, while allowing for flexibility as to not over enforce the rigidity children with autism often face. Advice on coping with the additional stressors were also shared. Parents recommended finding time for themselves to reset, utilizing support systems, and reflecting on daily pleasures as positive coping mechanisms. This study aimed to both develop an initial guide for families, teachers and clinicians caring for children with ASD and to create awareness in the community about the challenges presented by COVID-19 and shelter-in-place.

How Taiwanese parents of children with autism spectrum disorder experience the process of obtaining a diagnosis: A descriptive phenomenological analysis

Autism ◽  
2017 ◽  
Vol 22 (4) ◽  
pp. 388-400 ◽  
Author(s):  
Kuo-Yu Chao ◽  
Hsueh-Ling Chang ◽  
Wei-Chih Chin ◽  
Hsin-Mei Li ◽  
Sue-Hsien Chen
Keyword(s):  
Autism Spectrum Disorder ◽  
Chinese Culture ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Phenomenological Analysis ◽  
Professional Services ◽  
Spectrum Disorder ◽  
Diagnostic Process ◽  
Structured Interviews ◽  
Parental Experience

An autism spectrum disorder can result in considerable stress and confusion for parents as they attempt to understand their child’s problems and obtain a diagnosis. Few studies have explored the parental experience in the context of Chinese culture. The purpose of this study was to understand the experiences of parents in Taiwan of children diagnosed with autism spectrum disorder. In total, 15 parents, 1 father and 14 mothers, were recruited by purposive sampling. This qualitative study used semi-structured interviews and descriptive phenomenological analysis. The findings indicated that parents of children diagnosed with autism spectrum disorder underwent five coping experiences during the diagnostic process: (1) uncertainty and difficulty understanding their child’s behaviour, which occurred during the pre-diagnosis phase; (2) obligation to obtain professional services; (3) anxious searching for a second opinion, which occurred during the diagnosis phase; (4) acceptance and fortitude and (5) further adjustment during the post-diagnosis phase. Our findings add to our understanding of how parents experience the diagnostic process, which could improve medical professionals’ counselling and support for parents at the stage of obtaining a diagnosis for their children.

Psychiatric care of children with autism spectrum disorder – What do their siblings think about it? A qualitative study

Autism ◽  
2017 ◽  
Vol 23 (2) ◽  
pp. 326-337 ◽  
Author(s):  
Jordan Sibeoni ◽  
Louise Chambon ◽  
Noel Pommepuy ◽  
Clementine Rappaport ◽  
Anne Revah-Levy
Keyword(s):  
Autism Spectrum Disorder ◽  
Data Analysis ◽  
Qualitative Study ◽  
Psychiatric Care ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Structured Interviews ◽  
Older Siblings

The expectations and role of families in the care of children with autism spectrum disorder are increasingly important. Nonetheless, no study has thus far explored the perspectives of siblings about the care received by a brother or sister with this disorder. The objective of this study was to fill this gap in the literature. This multicentre qualitative study took place in France, where we conducted semi-structured interviews with adolescents who were older siblings of children receiving care in a day hospital for an autism spectrum disorder. Data collection by purposive sampling continued until we reached ‘theoretical sufficiency’, and data analysis was thematic. The study included 20 participants: 13 sisters and 7 brothers. Four themes emerged in the data analysis: (1) the treatment targets, (2) the treatment’s perceived effectiveness, (3) the complex questions it raises and (4) the role of intrafamily relationships. Our results allowed us to report original aspects of the experience of siblings, in particular, their confusion with regard to the treatment, their difficulty in separating themselves from their parents’ discourse and their assertion of their role as caregivers for their younger brothers and sisters.

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