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

• Published in: Aquichan Vol. 20; no. 2; pp. 1 - 18
• Main Authors: Weissheimer, Gisele, Santana, Julia Mazul, Ruthes, Victória Beatriz Trevisan Nóbrega Martins, Mazza, Verônica De Azevedo
• Format: Journal Article
• Language: English
• Published: Chia Universidad de La Sabana 13-07-2020
• Subjects: Autistic children; Behavior; Digital broadcasting; Families & family life; Internet; Literature reviews; NURSING; Podcasts; Researchers; Studies; United States > US; social support; família; criança; Autism Spectrum Disorder; niño; Transtorno do espectro autista; apoyo social; acceso a la información; access to information; family; acesso à informação; apoio social; familia; child; Desorden del espectro autista
• ISSN: 1657-5997; 2027-5374; 2027-5374
• DOI: 10.5294/aqui.2020.20.2.8

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.