Life Stories of Parents with Autistic Children

Kocabıyık, Oya Onat; Fazlioğlu, Yeşim

doi:10.11114/jets.v6i3.2920

Cited by 8 publications

(8 citation statements)

References 23 publications

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“…This is in line with the existant literature in that siblings of children with autism react to their sisters or brothers with autism in different ways [25]. As with the reaction from siblings and consistent with literature, extended family members react to children with autism positively and favorably, negatively and unfavorably or indifferently(e.g., 19,20,24]. As with extended family reaction, community's reaction to children with autism and their parents seemed to be mixed, some positive and favorable (understanding and helpful), some negative and unfavorable (blameful and judgmental) and yet others ambivalent (having mixed feelings).…”

Section: Discussionmentioning

confidence: 99%

“…Handling the diagnosis of autism is one of the most di cult challenges for the whole family in general and for parents in particular though their reactions to it differ greatly [5]. The journey of the diagnosis of autism is not only a long but also it is an ambiguous process and thus presents unique challenges and stressors to the families of children with autism [10,20].…”

Section: Introductionmentioning

confidence: 99%

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Experiences and perceptions of parents raising children with autism

Walga¹,

Yohannes²

2023

Preprint

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Background The prevalence of autism spectrum disorder (ASD) in general and autism in particular is on raise globally and the need for evidence-based intervention and care for children with autism has grown, too. However, evidence on autism is scanty in developing countries including Ethiopia. With the aim to help fill the gap and paucity in research into the issue, the main purpose of this study is to explore, better understand, and document the experiences and perceptions of parents of children with autism. Methods Qualitative survey was used to collect data from a convenient sample of parents raising a child with autism. Twenty-one respondents completed the qualitative survey dispatched. Vast majority (about 80%) of the participants were mothers who were caring for their child with autism. Age of the participant parents ranged between 27 and 67 years (Mean Age = 44.00 years; Standard Deviation = 10.02 years). Ages of children with autism cared for ranged between 4 and 43 years (Mean Age = 15.00 years; Standard Deviation = 8.17 years). Findings The data collected were subjected to qualitative analysis that yielded several themes and subthemes including late diagnosis, parents’ reactions to diagnosis, sources of information during and after diagnosis, differing reactions to having a child with autism from siblings, extended family members and the larger community, attribution of autism to several causes by the community, lack of recognition and open discussion of autism and lack of appropriated public educational and health care services for children with autism and their parents. Conclusion The current research derived some themes and subthemes that revolve around the experiences and perceptions of parents raising children with autism. By so doing, it shed an important light on the situations of parents raising children with autism. Based on the findings of this research, some practical implications were drawn.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Experiences and perceptions of parents raising children with autism

Walga¹,

Yohannes²

2023

Preprint

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“…One of the families' perspectives is in relation to children's acceptance in society about issues related to work, employment, profession and their independence (36)(37) . They express expectations about the possibility of taking a higher education course (38) and having independence (39) .…”

Section: Information Demands From Families Of Children With Autism Sp...mentioning

confidence: 99%

Information demands from families of children with Autism Spectrum Disorder

et al. 2021

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Objective: to identify the information demands of families of children with Autism Spectrum Disorder. Method: this is a qualitative study conducted through semi-structured and audio-recorded interviews with 55 family members, in the states of Paraná, Ceará, and Macapá, between September 2018 and September 2019. Thematic category analysis and Qualitative Data Analysis Software resources were used for data organization. Results: it was identified that families need information regarding the characteristics of Autism Spectrum Disorder (definition, cause, possibility of cure, prognosis and the probability of having another child with Autism Spectrum Disorder); child’s routine and behavior; future rights and expectations. Final considerations: information demands are relevant to support professionals, health managers and other services in health care organization to support families of children with autism.

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“…Na subcategoria "a criança com TEA", identificaram-se necessidades de informações sobre como manejar e entender o comportamento do filho e o futuro da criança. Segundo os estudos 22,23,26,32,38, 43 e 55, os pais necessitam de conhecimento para compreender os comportamentos da criança com TEA e para li-dar com eles, gerenciar comportamentos agressivos, autolesivos, birras e estereotipias. Além disso, gostariam de saber sobre o desenvolvimento de habilidades sociais e sensoriais, como manejar as limitações da criança, como gerenciar a alimentação dela (22) e como auxiliar na sua integração social com a própria família e com outros indivíduos da sociedade.…”

Section: Necessidade De Informaçãounclassified

“…Em relação à subcategoria das "fontes informais", verificou-se que os pais obtinham informações de outros pais de crianças com TEA e de amigos em condições semelhantes (11,20,22,24,31,35,55). Famílias compartilhavam informações com o cônjuge e outros membros, tais como irmãos, tios, primos e os avós da criança (12,30,34,38), outros membros da rede pessoal, como vizinhos, amigos (32,33,37,38) e grupos de apoio ou associações (11,(28)(29)(30)52). Os avós têm um papel importante no compartilhamento de informações e no apoio aos pais de crianças com TEA (48).…”

Section: Fontes De Suporte Informacional Acessadas Pelas Famíliasunclassified

Necessary Information for the Families of Children with Autism Spectrum Disorder: An Integrative Review

et al. 2020

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Objective: To identify the available evidence on the necessary information for the families of children with Autism Spectrum Disorder (ASD). Method: An integrative literature review carried out in six databases with specific descriptors for each one. Studies published on the theme between January 2014 and February 2020 available in full and free of charge were selected. For synthesis and analysis of data, thematic categorization was performed. 41 articles were included. Results: Two thematic categories were obtained. In the first category (“need for information”), the families’ lack of knowledge about ASD (treatment, how to deal with the child’s behavior, and future perspectives), rights of the child with ASD, and resources to obtain information were identified. The second category (“information support sources accessed by the families”) comprised informal sources (family members, friends, neighbors, and parents of children with ASD), formal sources (professionals and institutions), the Internet, and other resources (books, workshops, podcasts). Positive and negative aspects were found in the use of these sources. Conclusions: A pattern of information requested by the family was verified, as well as sources used to obtain it. These data are relevant to support the organization of sources of informational support for the families and the community.

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Life Stories of Parents with Autistic Children

Cited by 8 publications

References 23 publications

Experiences and perceptions of parents raising children with autism

Experiences and perceptions of parents raising children with autism

Information demands from families of children with Autism Spectrum Disorder

Necessary Information for the Families of Children with Autism Spectrum Disorder: An Integrative Review

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