scholarly journals Experiences of family members of children diagnosed with autism spectrum disorder

2021 ◽  
Vol 42 ◽  
Author(s):  
Juliana Macêdo Magalhães ◽  
Thalia Alves Rodrigues ◽  
Marly Marques Rêgo Neta ◽  
Carolinne Kilcia Carvalho Sena Damasceno ◽  
Kayo Henrique Jardel Feitosa Sousa ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Autistic Disorder ◽  
Family Members ◽  
Family Care ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Need For Care ◽  
Structured Interviews ◽  
Emotional Aspects

ABSTRACT Objective: To describe, in the mothers’ perception, the experiences lived by families in the care of children with autism spectrum disorder. Method: Qualitative study, carried out with 20 mothers of children diagnosed with autistic disorder accompanied by an institution in Teresina-Piauí, Brazil. Semi-structured interviews were conducted between February and March 2019 and subjected to content analysis. Results: Five central ideas related to the stages experienced by family members after the diagnosis were identified, ranging from denial to acceptance. Family members and caregivers experience feelings of sadness and mourning for the discovery of the impossibility of curing the syndrome, revealing the need for care for this family. The search for help and adaptations of the routine are constant experiences. Conclusion: Caring for children who live with autistic disorder involves learning ranging from structural to emotional aspects, such as dealing with limitations and impossibility of cure, pointing out to the need for family care.

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 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.

scholarly journals A Comparison between Suzuki Method and Traditional Piano Method on Children with Autism Spectrum Disorder: Case Study

2020 ◽  
Vol 5 (1) ◽  
Keyword(s):  
Autism Spectrum Disorder ◽  
Autistic Disorder ◽  
Teaching Methods ◽  
Music Performance ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Future Research ◽  
Suzuki Method ◽  
Piano Teaching

Autism Spectrum Disorder is a neurological disorder that has a growing diagnostic rate among children. Children with ASD first show signs during infancy or childhood, and the progression varies greatly between individuals. An increasing number of parents decide to engage their children in artistic development, with piano being a popular choice. Though observational studies have noted the heightened sensitivity to sound and enhanced recall abilities of children with autism when learning instruments, there is little consensus on which piano teaching method is the most effective in developing musical skills. The goal of this study is to assess the effects of two piano-instruction methods on an autistic child’s music performance, which is assessed by categories, including tone quality, technique, interpretation and artistry. This paper presents the case of a 9-year-old child diagnosed with autistic disorder living in New Jersey. The Suzuki method and the traditional method are utilized to improve the piano abilities of this child. The different results in piano performance following the application of the two teaching methods in a three-year-period (2017/1-2019/12) may suggest the modality of different teaching methods on this child. This study may lay the groundwork for future research on selective piano teaching techniques for children with autistic disorder.

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.

scholarly journals Making a brochure about coronavirus disease ( COVID ‐19) for children with autism spectrum disorder and their family members

2020 ◽  
Vol 74 (9) ◽  
pp. 498-499
Author(s):  
Kentaro Kawabe ◽  
Rie Hosokawa ◽  
Kiwamu Nakachi ◽  
Ayumi Yoshino ◽  
Fumie Horiuchi ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Family Members ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder

A preliminary study of care coordination services within a specialized outpatient setting for youth with autism spectrum disorder

2019 ◽  
Vol 22 (3-4) ◽  
pp. 109-116 ◽  
Author(s):  
Vini Singh ◽  
Melanie Pinkett-Davis ◽  
Luther G. Kalb ◽  
Gazi Azad ◽  
Jason Neely ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Care Coordination ◽  
Unmet Need ◽  
Children With Autism ◽  
The United States ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Need For Care ◽  
Structured Care ◽  
Behavioral Services

Introduction Parents of children with autism spectrum disorder often experience high levels of stress and challenges when organizing medical and behavioral services for their child. Care coordination could alleviate these challenges, however little is known about the effectiveness of this service. This study examined the need, feasibility, and acceptability of a care coordination program. Methods Families of 176 children with autism, seen at a multidisciplinary autism clinic in the United States, participated in a prospective observational study. Families received a three-month structured care coordination program and completed pre- and post-program questionnaires that probed parents’ beliefs about the need and acceptability of the program through structured and open-ended questions. Results Most (≥90%) parents reported both a need for care coordination and satisfaction with the program. Qualitative themes identified valuable aspects and ways to improve the program. Discussion Parents raising a child with autism spectrum disorder experience an unmet need for care coordination. When provided, parents’ demonstrated high uptake of service and high levels of satisfaction with the program.

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.

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