Impact of dissemination of information about autistic espectrum disorder
Keywords:
Dissemination of information, Access to information, Health information, Austism spectrum disorder, Information uses and usersAbstract
Several interventions may improve the lives and well-being of people with autism spectrum disorder. However, many decisions need to be informed and shared between healthcare professionals, families and people with this condition. This longitudinal quantitative study focused on analyzing the impact of disseminating eight informational contents about autism during a psychological consultation for 73 family members and caregivers of autistic children and adolescents, in the Northern Region of Brazil, for 10 weeks. The majority of participants were brown women with completed high school and an average income of at least three minimal wage salaries. Of the 584 evaluations given by the 73 participants regarding the eight informational contents, 583 (99.8%) indicate that the content received was understood well or very well. Furthermore, the majority of reviews expressed that the information received helped the participant to better understand autism (435, 74.6%) and that they will be better prepared to discuss autism with someone (361, 61.9%). Regarding the preferred communication channel to receive information, participants indicate WhatsApp (72.6%) and Instagram (46.6%). From the above, the dissemination of information about autism had a positive impact on the participants, adding to their desire to continue studying or learning about the topic.
References
ABOMELHA, Faris M.; ALDHALAAN, Hesham; GHAZIUDDIN, Mohammad; AL-TASSAN, Nada A.; AL-MUBARAK, Bashayer R. Autism and ADHD in the era of big data; an overview of digital resources for patient, genetic and clinical trials information. Genes, [s.l.], v. 13, n. 9, p. 1551, 2022. DOI https://doi.org/10.3390/genes13091551.
ALLEN-MEARES, Paula; MACDONALD, Megan; MCGEE, Kristin. Autism spectrum disorder updates–relevant information for early interventionists to consider. Frontiers in public health, [s.l.], v. 4, [s.n.], p. 236, 2016. DOI https://doi.org/10.3389/fpubh.2016.00236.
ALNEMARY, Fahad M.; ALNEMARY, Faisal M.; ALAMRI, Abdulrahman S.; ALAMRI, Yassar A. Characteristics of arabic websites with information on autism. Neurosciences Journal, [s.l.], v. 22, n. 2, p. 143-145, 2017. DOI 10.17712/nsj.2017.2.20160574.
AMERICAN PSYCHIATRIC ASSOCIATION. DSM-5: Manual diagnóstico e estatístico de transtornos mentais. Porto Alegre: Artmed Editora, 2014. 992 p.
ARASTOO, Sara; ABDULLAH, Maryam M.; YOUSSEF, Julie; GUO, Yuqing; SCHUCK, Sabrina E. B.; GOLDBERG, Wendy A.; DONNELLY, Joseph; LAKES, Kimberley D. The relative utility of concurrent sources of information for diagnosis of autism spectrum disorder in early childhood. Frontiers in Pediatrics, [s.l.], v. 8, [s.n.], p. 486, 2020. DOI https://doi.org/10.3389/fped.2020.00486.
BEN SAID, Mohamed; ROBEL, Laurence; GOLSE, Bernard; JAIS, Jean Philippe. Strengthening data confidentiality and integrity protection in the context of a multi-centric information system dedicated to autism spectrum disorder. In: GUNDLAPALLI, Adi V; JAULENT, Marie-Christine; ZHAO, Dongsheng. MEDINFO 2017: precision Healthcare through Informatics. [s.l.]: IOS Press, 2017. p. 1133-1137. DOI 10.3233/978-1-61499-830-3-1133.
BRUGHA, Traolach S.; MCMANUS, Sally; BANKART, John; SCOTT, Fiona; PURDON, Susan; SMITH, Jane; BEBBINGTON, Paul; JENKINS, Rachel; MELTZER, Howard. Epidemiology of autism spectrum disorders in adults in the community in England. Archives of General Psychiatry, [s.l.], v. 68, n. 5, p. 459-465, 2011. DOI 10.1001/archgenpsychiatry.2011.38.
BUCKLAND, Michael K. Information and society. Cambridge: MIT Press, 2017.
CHANG, Lenisa V. Information, education, and health behaviors: evidence from the MMR vaccine autism controversy. Health Economics, [s.l.], v. 27, n. 7, p. 1043-1062, 2018. DOI 10.1002/hec.3645.
CHEN, Lei-Shih; MIN, Jungkyung; ZHAO, Shixi; YEH, Yu-Chen; HUANG, Tse-Yang. Information needs in genetic testing: A needs assessment survey among Taiwanese parents of children with autism spectrum disorders. Autism, [s.l.], v. 23, n. 4, p. 902-909, 2019. DOI 10.1177/1362361318778903.
GALVÃO, Maria Cristiane Barbosa; CARMONA, Fabio; GRAD, Roland; PLUYE, Pierre; RICARTE, Ivan Luiz Marques. Disseminating health evidence summaries to increase evidence use in health care. Revista de Saúde Pública, [s.l.], v. 52, [s.n.], 2018. DOI 10.11606/S1518-8787.2018052000418.
GALVÃO, Maria Cristiane Barbosa; RICARTE, Ivan Luiz Marques; GRAD, Roland; PLUYE, Pierre. The Clinical Relevance of Information Index (CRII): assessing the relevance of health information to the clinical practice. Health Information and Libraries Journal, [s.l.], v. 30, n. 2, p. 110-120, 2013. DOI https://doi.org/10.1111/hir.12021.
GALVÃO, Maria Cristiane Barbosa; FABIÁN RAMÍREZ, Cesar Antonio; RICARTE, Ivan Luiz Marques. Tipologia de informação demandada sobre transtorno do espectro autista. In: ENCONTRO NACIONAL DE PESQUISA E PÓS-GRADUAÇÃO EM CIÊNCIA DA INFORMAÇÃO [ENANCIB], 24., 2024, Vitória. Anais […]. Vitória: ENANCIB, 2024. Disponível em: https://brapci.inf.br/v/342217. Acesso em: 3 abr. 2025.
GRAD, Roland; PLUYE, Pierre; REPCHINSKY, Carol A.; JOVAISAS, Barbara; MARLOW, Bernard; RICARTE, Ivan Luiz Marques; GALVÃO, Maria Cristiane Barbosa; SHULHA, Michael; BONAR, James de Gaspé. Physician assessments of the value of therapeutic information delivered via e-mail. Canadian Family Physician, [s.l.], v. 60, n.5, p. e258-e262, 2014. Disponível em: https://www.cfp.ca/content/60/5/e258.short. Acesso em: 6 jul. 2024.
GRANIKOV, Vera; GRAD, Roland; EL SHERIF, Reem; SHULHA, Michael; CHAPUT, Genevieve; DORAY, Genevieve; LAGARDE, François; ROCHETTE, Annie; TANG, David Li; PLUYE, Pierre. The Information Assessment Method: over 15 years of research evaluating the value of health information. Education for Information, [s.l.], v. 36, n. 1, p. 7-18, 2020. DOI https://doi.org/10.3233/EFI-19034.
HYMAN, Susan L. LEVY, Susan E.; MYERS, Scott M. Identification, evaluation, and management of children with autism spectrum disorder. Pediatrics, [s.l.], v. 145, n. 1, 2020. DOI 10.1542/peds.2019-3447.
JOBS, Elisabeth Nilsson; BÖLTE, Sven; FALCK-YTTER, Terje. Spotting signs of autism in 3-year-olds: comparing information from parents and preschool staff. Journal of Autism and Developmental Disorders, [s.l.], v. 49, [s.n.], p. 1232-1241, 2019. DOI 10.1007/s10803-018-3821-5.
JOHANNESSEN, Jarle; NAERLAND, Terje; HOPE, Sigrun; TORSKE, Tonje; KAALE, Anett; WIRGENES, Katrine V.; MALT, Eva; DJUROVIC, Srdjan; RIETSCHEL, Marcella; ANDREASSEN, Ole A. Attitudes among parents of persons with autism spectrum disorder towards information about genetic risk and future health. European Journal of Human Genetics, [s.l.], v. 30, n. 10, p. 1138-1146, 2022. DOI 10.1038/s41431-021-00966-y.
LI, Ming; AMUTA, Ann; XU, Lei; DHAR, Shweta U.; TALWAR, Divya; JUNG, Eunju; CHEN, Lei-Shih. Autism genetic testing information needs among parents of affected children: a qualitative study. Patient education and counseling, [s.l.], v. 99, n. 6, p. 1011-1016, 2016. DOI 10.1016/j.pec.2015.12.023.
LONG, Kristin A.; GORDILLO, Monica; ORSMOND, Gael I. Improving the validity and generalizability of adult autism research through incorporating family and cultural contexts. Autism Adulthood, [s.l.], v. 1, n.3, p.177-184, 2020. DOI https://doi.org/10.1089/aut.2019.0061.
LORD, Catherine; ELSABBAGH, Mayada; BAIRD, Gillian; VEENSTRA-VANDERWEELE, Jeremy. Autism spectrum disorder. The Lancet, [s.l.], v. 392, n. 10146, p. 508-520, 2018. DOI 10.1016/S0140-6736(18)31129-2.
MORAU, Estelle; CARO Working Group. Labour epidural analgesia and autism: give the right information to mothers! Anaesthesia, Critical Care & Pain Medicine, [s.l.], v. 40, n. 1, p. 100779, 2021. DOI 10.1016/j.accpm.2020.11.002.
POP-JORDANOVA, Nada; ZORCEC, Tatjana. Does the m-chat-r give important information for the diagnosis of the autism spectrum disorder? Prilozi, [s.l.], v. 42, n. 1, p. 67-75, 2021. DOI https://doi.org/10.2478/prilozi-2021-0005.
PRYCHODCO, Robson Celestino; BITTENCOURT, Zelia Zilda Lourenço de Camargo. Redes sociais sobre transtorno do espectro autista no Facebook como suporte interpessoal: implicações nos processos de governança em saúde. Revista Eletrônica de Comunicação, Informação e Inovação em Saúde, Manguinhos, v. 13, n. 4, 2019. DOI https://doi.org/10.29397/reciis.v13i4.1670.
RIBEIRO, Natasha Coutinho Revoredo; LÜCK, Esther Hermes. A biblioterapia como recurso auxiliar no desenvolvimento de crianças com transtorno do espectro autista (TEA). Informação & Informação, Londrina, v. 26, n. 2, p. 231-255, 2021. DOI https://doi.org/10.5433/1981-8920.2021v26n2p231.
RIBEIRO, Natasha Coutinho Revoredo; MARTELETO, Regina Maria. Grupos de Familiares de Autistas na Reivindicação de Direitos. Tendências da Pesquisa Brasileira em Ciência da Informação, [s.l.], v. 16, p. 1-25, 2023. Disponível em: https://revistas.ancib.org/index.php/tpbci/article/view/605/556. Acesso em: 6 jul. 2024.
ROCHA, Marisa Lopes da; AGUIAR, Katia Faria de. Pesquisa-intervenção e a produção de novas análises. Psicologia Ciência e Profissão, [s.l.], v. 23, n. 4, p. 64-73, 2003. DOI https://doi.org/10.1590/S1414-98932003000400010.
SALOMONE, Erica et al. Use of early intervention for young children with autism spectrum disorder across Europe. Autism, [s.l.], v. 20, n. 2, p. 233-249, 2016. DOI https://doi.org/10.1177/1362361315577218.
SAM, Ann M.; COX, Ann W.; SAVAGE, Melissa N.; WATERS, Victoria; ODOM, Samuel L. Disseminating information on evidence-based practices for children and youth with autism spectrum disorder: AFIRM. Journal of Autism and Developmental Disorders, [s.l.], v. 50, p. 1931-1940, 2020. DOI 10.1007/s10803-019-03945-x.
SAMPAIO, Renata Kelly Oliveira; FARIAS, Gabriela Belmont de. Biblioteca escolar inclusiva: análise acerca do transtorno do espectro autista. Brazilian Journal of Information Science: research trends, Marilia, v. 14, n. 3, jul./set. 2020. DOI https://doi.org/10.36311/1940-1640.2020.v14n3.10302.
SANTOS, Marcos Pastana; DINIZ, Cládice Nóbile; FERNANDES, Edicléa Mascarenhas. Acessibilidade informacional para usuários com transtorno de espectro autista na biblioteca. Revista Brasileira de Biblioteconomia e Documentação, São Paulo, v. 13, p. 1863-1882, 2017. Disponível em: https://rbbd.febab.org.br/rbbd/article/view/906. Acesso em: 12 jun. 2024.
SCHELLY, David; GONZÁLEZ, Patricia Jiménez; SOLÍS, Pedro J. Barriers to an information effect on diagnostic disparities of autism spectrum disorder in young children. Health Services Research and Managerial Epidemiology, [s.l.], v. 6, [s.n.],2019. DOI 10.1177/2333392819853058.
SMITH, Caroline A.; PARTON, Chloe; KING, Marlee; GALLEGO, Gisselle. Parents’ experiences of information-seeking and decision-making regarding complementary medicine for children with autism spectrum disorder: a qualitative study. BMC Complementary Medicine and Therapies, [s.l.], v. 20, p. 1-13, 2020. DOI 10.1186/s12906-019-2805-0.
SOLOMON, Dasha; PANTALONE, David W.; FAJA, Susan. Autism and adult sex education: A literature review using the information–motivation–behavioral skills framework. Sexuality and Disability, [s.l.], v. 37, p. 339-351, 2019. DOI 10.1007/s11195-019-09591-6.
SOUTHBY, Kris; ROBINSON, Olivia. Information, advocacy and signposting as a low-level support for adults with high-functioning autism spectrum disorder: An example from the UK. Journal of Autism and Developmental Disorders, [s.l.], v. 48, p. 511-519, 2018. DOI 10.1007/s10803-017-3331-x.
SUHRHEINRICH, Jessica; NAHMIAS, Allison S.; YU, Yue; Melgarejo, Melina; SCHETTER, Patricia; HOLT, Tana C.; STAHMER, Aubyn C. Practice-driven research for statewide scale up: Implementation outcomes of the California Autism Professional Training and Information Network. Autism, [s.l.], v. 26, n. 3, p. 727-736, 2022. DOI https://doi.org/10.1177/13623613211068224.
THORSTEINSSON, Einar B.; DRAPER, Anja; LYKINS, Amy D. To vaccinate or not: the relative impact of attitudes toward autism spectrum disorders and the ability to interpret scientific information on vaccination decisions. International Journal of Environmental Research and Public Health, [s.l.], v. 17, n. 7, p. 2542, 2020. DOI 10.3390/ijerph17072542.
TOSCANO, Rafael Moura; BECKER, Valdecir. Mapeamento sistemático: sistemas audiovisuais para o ensino de crianças com o transtorno do espectro autista. Revista Eletrônica de Comunicação, Informação e Inovação em Saúde, Manguinhos, v. 13, n. 2, 2019. DOI https://doi.org/10.29397/reciis.v13i2.1487.
VALLE, Fernanda; SALDANHA, Gustavo da Silva. (Des)Informação em saúde: o autismo no espelho da classificação. In: ENCONTRO NACIONAL DE PESQUISA E PÓS-GRADUAÇÃO EM CIÊNCIA DA INFORMAÇÃO (ENANCIB), 20., 2019, Florianópolis. Anais […]. Florianópolis: ENANCIB, 2019. Disponível em: http://hdl.handle.net/20.500.11959/brapci/122500. Acesso em: 12 jun. 2024.
WALTER, Cátia Crivelenti de Figueiredo. Reflexões sobre o currículo funcional/natural e o PECS-Adaptado no processo de inclusão do aluno com autismo. Inclusão Social, [s.l.], v. 10, n. 2, 2017. Disponível em: http://hdl.handle.net/20.500.11959/brapci/72558. Acesso em: 12 jun. 2024.
WEISSHEIMER, Gisele; MAZZA, Verônica de Azevedo; SANTANA, Julia Mazul; RUTHES, Victoria B. T. N. M.; FREITAS, Cibelly Aliny Siqueira. Information demands from families of children with autism spectrum disorder. Revista Brasileira de Enfermagem, [s.l.], v. 74, n. 5, 2021. DOI https://doi.org/10.1590/0034-7167-2020-0642.
Published
Issue
Section
License
Copyright (c) 2025 Perspectivas em Ciência da Informação
This work is licensed under a Creative Commons Attribution 4.0 International License.
