Experiences of Family Members of Children with Autism

Cláudia Maria Sousa De Carvalho ,Emilia Angela Lo Schiavo Sarisawa,Juliana Da Silva Borges,Fernanda Cláudia Miranda Amorim,Adélia Dalva Da Silva Oliveira,Juliana Macêdo Magalhães,Adriana Sávia De Souza Araújo,Islana Caminha Morais ,Maria Clara Araújo Oliveira ,Ana Eduarda Sousa De Carvalho

doi:10.2174/1874434602115010367

Cláudia Maria Sousa De Carvalho , Emilia Angela Lo Schiavo Sarisawa + Show 8 more

Open Access

https://doi.org/10.2174/1874434602115010367

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Abstract

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.

Highlights

Autism spectrum disorder is characterized by the change in the behavior-interaction-communication, with different levels of impairment
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 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 reflect on the quality of care of that individual

Summary

Introduction

Autism spectrum disorder is characterized by the change in the behavior-interaction-communication, with different levels of impairment. Known as Autism Spectrum Disorder (ASD), has its particularity in the important signs of changes in a child’s communication, interaction and behavior. As a result of behavioral, interaction and language deficits, children with ASD are highly dependent on parents and caregivers. Caregivers may experience feelings of anguish, fear of the unexpected happenings and even fear of judgment by third parties [2]. Social isolation stands out as a negative aspect, as families are deprived of social contacts and attending certain events and gatherings due to the unexpected behavior of the child and due to fear of judgment by third parties. It appears that the family faces daily struggles in caring care for the child, feelings of affection and dedication are significantly expressed [2]

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