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

dc.contributor.authorWeissheimer, Gisele
dc.contributor.authorMazul Santana, Julia
dc.contributor.authorTrevisan Nóbrega Martins Ruthes, Victória Beatriz
dc.contributor.authorAzevedo Mazza, Verônica De
dc.date.accessioned2020-11-12T15:57:50Z
dc.date.available2020-11-12T15:57:50Z
dc.date.issued2020-07-13
dc.identifier.citationWeissheimer G, Santana JM, Ruthes VBTNM, Mazza VA. Necessary Information for the Families of Children with Autism Spectrum Disorder: An Integrative Review. Aquichan. 2020;20(2):e2028. DOI: https://doi.org/10.5294/aqui.2020.20.2.8es_CO
dc.identifier.issn1657-5997
dc.identifier.otherhttps://aquichan.unisabana.edu.co/index.php/aquichan/article/view/13377
dc.identifier.otherhttps://aquichan.unisabana.edu.co/index.php/aquichan/article/view/13377/6045
dc.identifier.urihttp://hdl.handle.net/10818/44219
dc.description18 páginases_CO
dc.description.abstractObjetivo: identificar las evidencias disponibles acerca de las informaciones necesarias para las familias de niños con desorden del espectro autista (DEA). Método: revisión integradora de la literatura, desde seis bases de datos con descriptores específicos para cada una. Se seleccionaron estudios publicados sobre el tema entre enero de 2014 y febrero de 2020, disponibles de forma integral y gratuita. Para síntesis y análisis de los datos, se llevó a cabo una categorización temática. Se incluyeron 41 artículos. Resultados: se obtuvieron dos categorías temáticas. En la primera, “necesidad de información”, se identificaron la falta de conocimiento de las familias acerca del DEA (tratamiento, cómo manejar la conducta de los niños en esta condición y perspectivas futuras), los derechos del niño con DEA y los recursos para el acceso a las informaciones. En la segunda categoría, “fuentes de soporte informacional accedidas por las familias”, se encontraron las fuentes informales (familiares, amigos, vecinos y padres de niños con DEA), formales (profesionales e instituciones), internet y otros recursos (libros, workshops, podcasts). Se evidenciaron aspectos positivos y negativos en el empleo de tales fuentes. Conclusiones: se encontró un patrón de informaciones requeridas por los familiares, así como de fuentes utilizadas para obtenerlas. Los hallazgos son relevantes para subsidiar la organización de fuentes de soporte informacional a las familias y a la comunidad.spa
dc.description.abstractObjective: To identify the available evidence on the necessary information for the families of children with Autism Spectrum Disor-der(ASD). Method: An integrative literature review carried out in sixdatabases with specific descriptors for each one. Studies published on the theme between January2014 and February2020 available in full and free of charge were selected. For synthesis and analysis of data, thematic categorization was performed. 41articles were included. Results: Twothematic 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 fu-ture 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.eng
dc.formatapplication/pdfes_CO
dc.language.isoenges_CO
dc.publisherUniversidad de La Sabanaes_CO
dc.relation.ispartofseriesAquichan. 2020;20(2):e2028
dc.rightsAttribution-NonCommercial-NoDerivatives 4.0 International*
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/*
dc.sourceinstname:Universidad de La Sabanaes_CO
dc.sourcereponame:Intellectum Repositorio Universidad de La Sabanaes_CO
dc.subject.otherDesorden del espectro autistaspa
dc.subject.otherAcceso a la informaciónspa
dc.subject.otherFamilia
dc.subject.otherApoyo socialspa
dc.titleNecessary Information for the Families of Children with Autism Spectrum Disorder: An Integrative Reviewes_CO
dc.title.alternativeInformación necesaria para las familias de niños con desorden del espectro autista: una revisión integradoraes_CO
dc.title.alternativeInformações necessárias às famílias de crianças com transtorno do espectro autista: uma revisão integrativaes_CO
dc.typearticlees_CO
dc.publisher.departmentDirección de Publicaciones
dc.type.hasVersionpublishedVersiones_CO
dc.rights.accessRightsopenAccesses_CO
dc.identifier.doihttps://doi.org/10.5294/aqui.2020.20.2.8
dcterms.referencesEds JB. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. MMWR Surveill. Summ. 2018;67(6):1-23. DOI: https://doi.org/10.15585/mmwr.ss6706a1eng
dcterms.referencesWuo AS. Education of people with autism spectrum disorders: State of knowledge in dissertations and theses in the Southern and Southeastern regions of Brazil (2008-2016). Saúde soc 2019;28(3):210-23. DOI: https://doi.org/10.1590/s0104-12902019170783eng
dcterms.referencesBeck RG. Estimativa do número de casos de Transtorno do Espectro Autista no Sul do Brasil [dissertação]. Tubarão-SC: Universidade do Sul de Santa Catariana; 2017. Disponível em: https://riuni.unisul.br/handle/12345/3659eng
dcterms.referencesOrganização Pan-Americana as Saúde — OPAS (Brasil). Folha informativa — Transtorno do espetro autista; 2017. Disponível em: https://www.paho.org/bra/index.php?Itemid=1098eng
dcterms.referencesAmerican Psychiatric Association. DSM-5: Manual diagnóstico e estatístico de transtornos mentais. Porto Alegre: Artmed Editora; 2014.eng
dcterms.referencesEbert M, Lorenzini E, Silva EF da. Mothers of children with autistic disorder: perceptions and trajectories. Rev Gaucha Enferm. 2015;36(1):49-55. DOI: https://doi.org/10.1590/1983-1447.2015.01.43623eng
dcterms.referencesZanatta EA, Menegazzo E, Guimarães AN, Ferraz L, Motta MGC. Families that live with child autism on a daily basis. RASD 2014;28(3):271-82. Disponível em: https://portalseer.ufba.br/index.php/enfermagem/article/view/10451/eng
dcterms.referencesCappe É, Poirier N. Les besoins exprimés par les parents d’enfants ayant un TSA : une étude exploratoire franco-québécoise. Ann Med-Psychol. 2016;174(8):63943. DOI: https://doi.org/10.1016/j.amp.2015.06.003fre
dcterms.referencesGilson CB, Bethune LK, Carter EW, Mcmillan ED. Informing and equipping parents of people with intellectual and developmental disabilities. Intellect Dev Disabil. 2017;55(5):347-60. DOI: https://doi.org/10.1352/1934-9556-55.5.347eng
dcterms.referencesHall CM, Culler ED, Frank-Webb A. Online Dissemination of Resources and Services for Parents of Children with Autism Spectrum Disorders (ASDs): A Systematic Review of Evidence. J Autism Dev Disord. 2016;3(4):273-85. DOI: http://dx.doi.org/10.1007/s40489-016-0083-zeng
dcterms.referencesEdwards AG, Brebner CM, McCormack PF, MacDougall CJ. From “parent” to “expert”: How parents of children with autism spectrum disorder make decisions about which intervention approaches to access. J Autism Dev Disord. 2018;48(6):2122-38. DOI: https://doi.org/10.1007/s10803-018-3473-5eng
dcterms.referencesMcintyre LL, Brown M. Examining the utilisation and usefulness of social support for mothers with young children with autism spectrum disorder. Am J Intellect Dev Disabil . 2016;43(1):93-101. DOI: https://doi.org/10.3109/13668250.2016.1262534eng
dcterms.referencesErcole FF, Melo LS de, Alcoforado CLGC. Integrative review versus systematic review. REME rev. min. enferm. 2014;18(1):9-12. DOI: http://doi.org/10.5935/1415-2762.20140001eng
dcterms.referencesGanong LH. Integrative reviews of nursing research. Res Nurs Health. 1987;10(1):1-11. DOI: https://doi.org/10.1002/nur.4770100103eng
dcterms.referencesHutton B, Catalá-López F, Moher D. The PRISMA Extension Statement for Reporting of Systematic Reviews Incorporating Network Meta-analyses PRISMA-NMA. Med Clin. 2016. Available from: http://www.prisma-statement.org/Extensions/NetworkMetaAnalysis.aspxeng
dcterms.referencesBardin, L. Análise de conteúdo. 4. ed. Lisboa: Edições70; 2010.por
dcterms.referencesBlauth LK. Improving mental health in families with autistic children: Benefits of using video feedback in parent counselling sessions offered alongside music therapy. Health Psychol. 2017;5(2):138-50. DOI: https://doi.org/10.5114/hpr.2017.63558eng
dcterms.referencesCarlsson E, Miniscalco C, Kadesjö B, Laakso K. Negotiating knowledge: Parents’ experience of the neuropsychiatric diagnostic process for children with autism. Int J Lang Commun Disord. 2016;51(3):328-38. DOI: https://doi.org/ 10.1111/1460-6984.12210eng
dcterms.referencesChiu Y-N, Chou M-C, Lee J-C, Wong C-C, Chou W-J, Wu Y-Y, Chien Y-L et al. Determinants of maternal satisfaction with diagnosis disclosure of autism. J Formos Med Assoc. 2014;113(8):540-8. DOI: https://doi.org/10.1016/j.jfma.2012.07.040eng
dcterms.referencesCurtiss SL, Ebata AT. The nature of family meals: A new vision of families of children with autism. J Autism Dev Disord. 2019;49(2):441-52. DOI: https://doi.org/10.1007/s10803-018-3720-9eng
dcterms.referencesDerguy C, Michel G, M’bailara K, Roux S, Bouvard M. Assessing needs in parents of children with autism spectrum disorder: A crucial preliminary step to target relevant issues for support programs. Intellect Dev Disabil 2015;40(2):156-66. DOI: https://doi.org/10.3109/13668250.2015.1023707eng
dcterms.referencesDinora P, Bogenschutz M, Lynch K. Factors That May Influence Parent Treatment Decision Making for Young Children with Autism Spectrum Disorder. J Soc Work Disabil Rehabil. 2017;16(3-4):377-95. DOI: https://doi.org/10.1080/1536710X.2017.1392395eng
dcterms.referencesDinora P, Bogenschutz M. Narratives on the factors that influence family decision making for young children with autism spectrum disorder. J Early Interv. 2018;40(3):195-211. DOI: https://doi.org/10.1177/1053815118760313eng
dcterms.referencesFrame KN, Casey LB. Variables influencing parental treatment selection for children with autism spectrum disorder. Child. Youth Serv Rev., Elsevier. 2019;106:1-9. DOI: https://doi.org/10.1016/j.childyouth.2019.104464eng
dcterms.referencesFrye L. Fathers’ experience with autism spectrum disorder: Nursing implications. J Pediatr Health Care. 2016;30(5):453-63. DOI: https://doi.org/10.1016/j.pedhc.2015.10.012eng
dcterms.referencesGibson AN, Kaplan S, Vardell E. A survey of information source preferences of parents of individuals with Autism Spectrum Disorder. J Autism Dev Disord. 2017;47(7):2189-204. DOI: https://doi.org/10.1007/s10803-017-3127-zeng
dcterms.referencesGrant N, Rodger S, Hoffmann T. Intervention decision-making processes and information preferences of parents of children with autism spectrum disorders. Child Care Health Dev. 2016;42(1):125-34. DOI: https://doi.org/10.1111/cch.12296eng
dcterms.referencesHays A, Butauski M. Privacy, disability, and family: Exploring the privacy management behaviors of parents with a child with autism. West J Commun. 2018;82(3):376-91. DOI: https://doi.org/10.1080/10570314.2017.1398834eng
dcterms.referencesHennel S, Coates C, Symeonides C, Gulenc A, Smith L, Price AMH et al. Diagnosing autism: Contemporaneous surveys of parent needs and paediatric practice.J Paediatr Child Health. 2016;52(5):506-11. DOI: https://doi.org/10.1111/jpc.13157eng
dcterms.referencesHodgetts S, Zwaigenbaum L, Nicholas D, Profile and predictors of service needs for families of children with autism spectrum disorders. Autism. 2015;19(6):673-83. DOI: https://doi.org/10.1177/1362361314543531eng
dcterms.referencesHuus K, Olsson LM, Andersson EE, Granlund M, Augustine L. Perceived needs among parents of children with a mild intellectual disability in Sweden. Scand J Disabil Res. 2017;19(4):307-17. DOI: https://doi.org/10.1080/15017419.2016.1167773eng
dcterms.referencesKocabiyik OO, Fazlioğlu Y. Life Stories of Parents with Autistic Children.J Educ Train Stud. 2018;6(3):26-37. DOI: https://doi.org/10.11114/jets.v6i3.2920eng
dcterms.referencesLajonchere CM, Valente TW, Kreutzer C, Munsou A, Narayanan S, Kazemzadeh A et al. Strategies for disseminating information on biomedical research on autism to Hispanic parents. J Autism Dev Disord. 2016;46(3):1038-50. DOI: https://doi.org/10.1007/s10803-015-2649-5eng
dcterms.referencesLi M, Amuta A, Xu L, Dhar S, Talwar D, Jung E, Chen LS. Autism genetic testing information needs among parents of affected children: A qualitative study. Patient Educ Couns. 2016;99(6):1011-16. DOI: https://doi.org/10.1016/j.pec.2015.12.023eng
dcterms.referencesLiu Y, Fisher K. Engaging with disability services: experiences of families from Chinese backgrounds in Sydney. Aust Soc Work. 2017;70(4):441-52. DOI: https://doi.org/10.1080/0312407X.2017.1324885eng
dcterms.referencesLopez K, Magaña S, Xu Y, Guzman J. Mother’s Reaction to autism diagnosis: A qualitative analysis comparing Latino and white parents. J. Rehabil. 2018;84(1):41-50. Available from: https://search.proquest.com/openview/7a45da1b334b635ee838c4917b839179/1?pq-origsite=gscholar&cbl=37110eng
dcterms.referencesMereoiu M, Bland C, Dobbins N, Niemeyer JA. Exploring perspectives on child care with families of children with autism. Early Child Res Pract. 2015;17(1):1-28. Available from: https://www.researchgate.net/publication/284886923_Exploring_perspectives_on_child_care_with_families_of_children_with_autismeng
dcterms.referencesMolteni P, Maggiolini S. Parents’ perspectives towards the diagnosis of autism: An Italian case study research. JCFS. 2015;24(4):1088-96. DOI: https://doi.org/10.1007/s10826-014-9917-4eng
dcterms.referencesMoro GL, Jenaro RC, Solano SM. Miedos, esperanzas y reivindicaciones de padres de niños con TEA. Ediciones Universidad de Salamanca. 2015;46(4):7-24. DOI: https://doi.org/10.14201/scero2015464724spa
dcterms.referencesNtre V, Papanikolauo K, Triantafyllou K, Giannakopoulos, Kokkosi M, Kolaitis G. Psychosocial and Financial Needs, Burdens and Support, and Major Concerns among Greek Families with Children with Autism Spectrum Disorder (ASD). IJCS.2018;11(2):985-95. Available from: http://internationaljournalofcaringsciences.org/docs/40_ntre_original_10_2.pdfeng
dcterms.referencesPearson JN, Traficante AL, Denny LM, Malone K, Codd E. Meeting FACES: Preliminary findings from a community workshop for minority parents of children with autism in Central North Carolina. J Autism Dev Disord. 2020;50(1):1-11. DOI: https://doi.org/10.1007/s10803-019-04295-4eng
dcterms.referencesPejovic-Milovancevic M, Stankovic M, Mitkovic-Voncina M, Rudic N, Grujicic R, Herrare AS et al. Perceptions on support, challenges and needs among parents of children with autism: The Serbian experience. Psychiatr Danub. 2018;30(Suppl 6):354-54. Available from: https://pdfs.semanticscholar.org/beb3/26222a962cbd26f382b74a04f2a5c32b718b.pdfeng
dcterms.referencesPickard KE, Ingersoll BR. Quality versus quantity: The role of socioeconomic status on parent-reported service knowledge, service use, unmet service needs, and barriers to service use. Autism. 2016;20(1). DOI: https://doi.org/10.1177/1362361315569745eng
dcterms.referencesPickard K, Rowless S, Ingersoll B. Understanding the impact of adaptations to a parent-mediated intervention on parents’ ratings of perceived barriers, program attributes, and intent to use. Autism: Autism. 2019;23(2):338-49. DOI: https://doi.org/10.1177/1362361317744078eng
dcterms.referencesPreece D, Symeou L, Stosic J, Troshanska J, Mavrou K, Theodorou E. Accessing parental perspectives to inform the development of parent training in autism in south-eastern Europe. Eur J Spec Needs Educ. 2016;32(2):252-69. DOI: https://doi.org/10.1080/08856257.2016.1223399eng
dcterms.referencesPrendeville P, Kinsella W. The role of grandparents in supporting families of children with autism spectrum disorders: A family systems approach. J Autism Dev Disord. 2019;49:738-49. DOI: https://doi.org/10.1007/s10803-018-3753-0eng
dcterms.referencesRivard M, Lépine A, Mercier C, Morin M. Quality determinants of services for parents of young children with autism spectrum disorders. IJCYF. 2015;24(8):2388-97. DOI: https://doi.org/10.1007/s10826-014-0041-2eng
dcterms.referencesRivard M, Millau M, Magnan C, Mello C, Boulé M. Snakes and ladders: Barriers and facilitators experienced by immigrant families when accessing an autism spectrum disorder diagnosis. J Dev Phys Disabil. 2019;31:519-39. DOI: https://doi.org/10.1007/s10882-018-9653-6eng
dcterms.referencesRoffeei SHM, Abdullah N, Basar SKR. Seeking social support on Facebook for children with Autism Spectrum Disorders (ASDseng
dcterms.referencesInt J Med Inform. 2015;84(5):375-85. DOI: https://doi.org/10.1016/j.ijmedinf.2015.01.015eng
dcterms.referencesRyan C, Quinlan E. Whoever shouts the loudest: Listening to parents of children with disabilities. J Appl Res Intellect Disabil. 2018;31:1-12. DOI: https://doi.org/10.1111/jar.12354eng
dcterms.referencesTait K, Hu FFA, Sweller N, Wang W. Understanding Hong Kong Chinese families’ experiences of an autism/ASD diagnosis. J Autism Dev Disord. 2016;46(4):1164-83. DOI: https://doi.org/10.1007/s10803-015-2650-zeng
dcterms.referencesTekinarslan İÇ. Autism Spectrum Disorder: Experiences of Mothers before and after their children’s diagnosis and implications for early special education services. J Educ Train Stud. 2018;6(12):68-81. DOI: https://doi.org/10.11114/jets.v6i12.3692eng
dcterms.referencesWallace LR. The impact of family autism camp on families and individuals with ASD. Qual Rep 2016;21(8):1441-53. Available from: https://nsuworks.nova.edu/cgi/viewcontent.cgi?referer=https://scholar.google.com.br/&httpsredir=1&article=2410&context=tqr/eng
dcterms.referencesZajicek-Farber ML, Lotrecchiano GR, Long TM, Farber JM. Parental perceptions of family centered care in medical homes of children with neurodevelopmental disabilities. JMCH. 2015;19(8):1744-55. DOI: https://doi.org/10.1007/s10995-015-1688-zeng
dcterms.referencesZakirova-Engstrand R, Roll-Pettersson L, Westling-Allodi M, Hirvikoski T. Needs of Grandparents of Preschool-Aged Children with ASD in Sweden. J Autism Dev Disord. 2020;50:1941-57. DOI: https://doi.org/10.1007/s10803-019-03946-weng
dcterms.referencesRogers SL, Dawson G, Vismara LA. TEA. Compreender e agir. Lisboa: Editora Lidel; 2015.eng
dcterms.referencesRogers SL, Dawson G, Vismara LA. TEA. Compreender e agir. Lisboa: Editora Lidel; 2015.eng
dcterms.referencesMapelli LD, Baribieri MC, Castro GVDZB, Bonelli MA et al. Child with autistic spectrum disorder: Care from the family. Esc Anna Nery. 2018; 22(4):e20180116. DOI: https://doi.org/10.1590/2177-9465-EAN-2018-0116eng
dcterms.referencesSchroeder WK. Leveraging Social Media in #FamilyNursing Practice. J Fam Nurs. 2017;23(1):55-72. DOI: https://doi.org/10.1177/1074840716684228eng
dcterms.referencesSchroeder WK. Leveraging Social Media in #FamilyNursing Practice. J Fam Nurs. 2017;23(1):55-72. DOI: https://doi.org/10.1177/1074840716684228eng
dc.identifier.eissn2027-5374


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