Experiences of Family Members of Children with Autism

Author:

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

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.

Publisher

Bentham Science Publishers Ltd.

Subject

General Nursing

Reference15 articles.

1. DE SÃO DP. PAUL–right of people with autism. 1st ed. São Paulo. 2011.

2. Zanatta EA, Menegazzo E, Guimarães AN, Ferraz L, Motta MD. Daily life of families living with childhood autism. Bahian Nursing Magazine‏ 2014; 28 (3)

3. Brazil. Ministry of Health. Department of programmatic and strategic actions. Rehabilitation care guidelines for people with autism spectrum disorder (ASD)- Technical manual. Brasília, DF: MS 2014. Available from: https://bvsms.saude.gov.br/bvs/publicacoes/diretrizes_atencao_reabilitacao_pessoa_autismo.pdf

4. Bardin L. Content Analysis. São Paulo: Editions 70 2011.

5. Arik RM, Parada CMGL, Tonete VLP, Sleutjes FCM. Perceptions and expectations of pregnant women about the type of birth. Rev Bras Enferm 2019; 72 (Suppl. 3) : 41-9.

同舟云学术

1.学者识别学者识别

2.学术分析学术分析

3.人才评估人才评估

"同舟云学术"是以全球学者为主线,采集、加工和组织学术论文而形成的新型学术文献查询和分析系统,可以对全球学者进行文献检索和人才价值评估。用户可以通过关注某些学科领域的顶尖人物而持续追踪该领域的学科进展和研究前沿。经过近期的数据扩容,当前同舟云学术共收录了国内外主流学术期刊6万余种,收集的期刊论文及会议论文总量共计约1.5亿篇,并以每天添加12000余篇中外论文的速度递增。我们也可以为用户提供个性化、定制化的学者数据。欢迎来电咨询!咨询电话:010-8811{复制后删除}0370

www.globalauthorid.com

TOP

Copyright © 2019-2024 北京同舟云网络信息技术有限公司
京公网安备11010802033243号  京ICP备18003416号-3