Challenges faced by parents and families of children with Autism Spectrum Disorder enrolled in Municipal Early Childhood Education Centers in Cascavel, Paraná
DOI:
https://doi.org/10.33448/rsd-v13i7.46228Keywords:
Autism Spectrum Disorder; Family structure; Physiotherapy; Patient care team.Abstract
Autism Spectrum Disorder (ASD) has been understood as a developmental disorder that affects the basic brain mechanisms of sociability and communication at an early stage, generating uncertainty regarding its understanding, especially among parents and family members. Given the growing number of students with ASD, this study sought to understand the main difficulties faced by families of children on the autism spectrum enrolled in Municipal Early Childhood Education Centers (CMEIs), in order to provide practical guidance under the perspective of physiotherapy through an e-book to assist them in effective treatment strategies. The research instruments developed were based on the CARS2 – QPC questionnaire, specific for parents or caregivers of children with ASD. The questionnaires included objective questions in order to cover a wide range of relevant areas, including diagnosis and understanding of ASD, access to health services, emotional and financial impact, coping strategies, difficulties and limitations faced. The results indicate that the greatest difficulties faced by families are related to reconciling the demands of caring for an autistic child with other family or professional responsibilities and the difficulty of adapting children to new situations, environments or changes in routine. It is observed that most parents have a satisfactory understanding of the spectrum. However, families still face numerous challenges, highlighting the importance of constantly learning about autism so that they can provide the best support for their children.
References
Alves Bosa, C. (2001). As relações entre autismo, comportamento social e função executiva. Psicologia: Reflexão e Crítica, 14 (2) 281-287. https://www.scielo.br/j/prc/a/NNgZJzt3scm9TN8bGFSkKLt/?lang=pt&format=pdf.
American Psychiatric Association. (2014). American psychiatric association DSM-5 ®. https://www.institutopebioetica.com.br/documentos/manual-diagnostico-e-estatistico-de-transtornos-mentais-dsm-5.pdf.
Araújo, R. R. de, Silva, J. R. de S., & D’Antino, M. E. F. (2012). Breve discussão sobre o impacto de se ter um irmão com transtorno do espectro o autismo. Cadernos de Pós-Graduação Em Distúrbios Do Desenvolvimento, 12(1). https://editorarevistas.mackenzie.br/index.php/cpgdd/article/view/11186.
Assumpção Jr, F. B., & Pimentel, A. C. M. (2000). Autismo infantil. Revista Brasileira de Psiquiatria, 22(suppl 2), 37–39. https://doi.org/10.1590/s1516-44462000000600010.
Azevedo, A. & Gusmão, M. (2016). A importância da fisioterapia motora no acompanhamento de crianças autistas. Revista Eletrônica Atualiza Saúde, 2(2), 76 - 83. https://atualizarevista.com.br/wp-content/uploads/2022/05/a-importancia-da-fisioterapia-motora-no-acompanhamento-de-criancas-autistas-v-3-n-3.pdf.
Billstedt, E., Gillberg, I. C., & Gillberg, C. (2011). Aspects of quality of life in adults diagnosed with autism in childhood: a population-based study. Autism : the international journal of research and practice, 15(1), 7–20. https://doi.org/10.1177/1362361309346066.
Campelo, L. D., Lucena, J. A., Lima, C. N. de, Araújo, H. M. M. de, Viana, L. G. de O., Veloso, M. M. L., Correia, P. I. F. de B., & Muniz, L. F. (2009). Autismo: um estudo de habilidades comunicativas em crianças. Revista CEFAC, 11, 598–606. https://doi.org/10.1590/S1516-18462009000800008.
Costa, L. M. B. (2020). Autismo e suporte familiar: Relações afetivas estabelecidas entre crianças com autismo. Revista Científica Multidisciplinar Núcleo Do Conhecimento, 06(09), 25–44. https://www.nucleodoconhecimento.com.br/psicologia/autismo-e-suporte.
Estrela, C. (2018). Metodologia científica: ciência, ensino, pesquisa. Artes Médicas.
Fávero, M. Â. B., & Santos, M. A. dos. (2005). Autismo infantil e estresse familiar: uma revisão sistemática da literatura. Psicologia: Reflexão E Crítica, 18, 358–369. https://doi.org/10.1590/S0102-79722005000300010.
Ferreira, J. T. C., Mira, N. F., Carbonero, F. C., & Campos, D. (2016). Effects of physical therapy in autistic children: case series study. Cadernos de Pós-Graduação Em Distúrbios Do Desenvolvimento, 16(2), 24–32. https://doi.org/10.5935/1809-4139.20160004
Frare, A. B., Bizzotto, J. Q., Ribeiro, L. P., & Borges, N. M. (2020). Aspectos genéticos relacionados ao Transtorno do Espectro autista (TEA) / Genetic aspects related to Autistic Spectrum Disorder (TEA). Brazilian Journal of Development, 6(6), 38007–38022. https://doi.org/10.34117/bjdv6n6-372.
Freire, D. M.C. & Seize, M. M. (2023). O impacto do autismo na dinâmica familiar. Ciências da Saúde, Ciências Humanas. https://doi.org/ 10.5281/zenodo.7612702.
Gadia, C. A., Tuchman, R., & Rotta, N. T. (2004). Autismo e doenças invasivas de desenvolvimento. Jornal de Pediatria, 80(2), 83–94. https://doi.org/10.1590/S0021-75572004000300011.
Geschwind D. H. (2009). Advances in autism. Annual review of medicine, 60, 367–380. https://doi.org/10.1146/annurev.med.60.053107.121225.
Gupta, A. R., & State, M. W. (2006). Autismo: genética. Brazilian Journal of Psychiatry, 28, s29–s38. https://doi.org/10.1590/S1516-44462006000500005.
Hoefman, R., Payakachat, N., van Exel, J., Kuhlthau, K., Kovacs, E., Pyne, J., & Tilford, J. M. (2014). Caring for a child with autism spectrum disorder and parents' quality of life: application of the CarerQol. Journal of autism and developmental disorders, 44(8), 1933–1945. https://doi.org/10.1007/s10803-014-2066-1.
Kalvin, C. B., Jordan, R. P., Rowley, S. N., Weis, A., Wood, K. S., Wood, J. J., Ibrahim, K., & Sukhodolsky, D. G. (2021). Conducting CBT for Anxiety in Children with Autism Spectrum Disorder During COVID-19 Pandemic. Journal of autism and developmental disorders, 51(11), 4239–4247. https://doi.org/10.1007/s10803-020-04845-1.
Maenner, M. J., Shaw, K. A., Bakian, A. V., Bilder, D. A., Durkin, M. S., Esler, A., Furnier, S. M., Hallas, L., Hall-Lande, J., Hudson, A., Hughes, M. M., Patrick, M., Pierce, K., Poynter, J. N., Salinas, A., Shenouda, J., Vehorn, A., Warren, Z., Constantino, J. N., DiRienzo, M., & Cogswell, M. E. (2021). Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018. Morbidity and mortality weekly report. Surveillance summaries (Washington, D.C: 2002), 70(11), 1–16. https://doi.org/10.15585/mmwr.ss7011a1.
Marcião, L. G. de A. ., Costa, G. E. P. ., Lima, P. E. ., Silva, V. H. F. da ., Bezerra, A. B., Oliveira, A. C. C. ., Moura, L. F. de ., Cobalchini, A. R. P. ., Silva, M. L. T. da ., Sousa, D. G. de ., Rocha, I. A. da S. ., & Santos, R. N. dos . (2021). A importância da fisioterapia no atendimento de pessoas com Transtorno do Espectro Autista. Research, Society and Development, 10(5), e24410514952. https://doi.org/10.33448/rsd-v10i5.14952.
Mendonça, F. S. et al. (2015). Desenvolvimento da Criança e do Adolescente: Evidências Científicas e Considerações Teóricas-Práticas: As principais alterações sensório-motoras e a abordagem fisioterapêutica no transtorno do espectro autista. In: Editora Científica, Desenvolvimento da Criança e do Adolescente: Evidências Científicas e Considerações Teóricas-Práticas. São Paulo, SP: Editora Científica.
Miele, Fernanda Gonçalves, & Amato, Cibelle Albuquerque de la Higuera. (2016). Transtono do espectro autista: qualidade de vida e estresse em cuidadores e/ou familiares - revisão de literatura. Cadernos de Pós-Graduação em Distúrbios do Desenvolvimento, 16(2), 89-102. https://doi.org/10.5935/1809-4139.20160010.
OMS (2020). Autism spectrum disorders. Organização Mundial da Saúde. Disponível em. https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders.
Pinto, R. N. M., Torquato, I. M. B., Collet, N., Reichert, A. P. da S., Souza Neto, V. L. de, & Saraiva, A. M. (2016). Autismo infantil: impacto do diagnóstico e repercussões nas relações familiares. Revista Gaúcha de Enfermagem, 37(3). https://doi.org/10.1590/1983-1447.2016.03.61572.
Radonovich, K. J., Fournier, K. A., & Hass, C. J. (2013). Relationship between postural control and restricted, repetitive behaviors in autism spectrum disorders. Frontiers in Integrative Neuroscience, 7. https://doi.org/10.3389/fnint.2013.00028.
Rocha, C. da S., & Raimundo, R. J. de S. (2024). O Papel do Fisioterapeuta em Crianças com Espectro do Autismo - TEA. Revista JRG De Estudos Acadêmicos, 7(14), e141120. https://doi.org/10.55892/jrg.v7i14.1120
Rutter M. L. (2011). Progress in understanding autism: 2007-2010. Journal of autism and developmental disorders, 41(4), 395–404. https://doi.org/10.1007/s10803-011-1184-2.
Rylaarsdam, L. & Guemez-Gamboa, A. (2019). Genetic Causes and Modifiers of Autism Spectrum Disorder. Frontiers in Cellular Neuroscience, 13:385. doi: 10.3389/fncel.2019.00385.
Santos, Gislainne Thaice da Silva, Mascarenhas, Millena Santana, & Oliveira, Erik Cunha de. (2021). A contribuição da fisioterapia no desenvolvimento motor de crianças com transtorno do espectro autista. Cadernos de Pós-Graduação em Distúrbios do Desenvolvimento, 21(1), 129-143. https://doi.org/10.5935/cadernosdisturbios.v21n1p129-143.
Santos, R. K. dos, & Vieira, A. M. E. C. da S. (2017). Transtorno do espectro do autismo (TEA): do reconhecimento à inclusão no âmbito educacional. Revista Includere, 3(1). https://periodicos.ufersa.edu.br/includere/article/view/7413.
Serafim, A., Costa, C. R. L. de M. ., Vieira, L., & Soares, C. L. R. . (2023). Incidence of cranial asymmetry in children with a diagnosis or in investigation of Autism Spectrum Disorder (TEA) . Research, Society and Development, 12(4), e14812441122. https://doi.org/10.33448/rsd-v12i4.41122.
Soares, N. S., Baum, R. A., & Frick, K. D. (2015). Improving developmental-behavioral pediatric care workfow. Journal of Developmental & Behavioral Pediatrics, 36(1), 45-52. https://doi.org/10.1097/DBP.0000000000000113.
Volkmar, F. R., & McPartland, J. C. (2014). From Kanner to DSM-5: autism as an evolving diagnostic concept. Annual review of clinical psychology, 10, 193–212. https://doi.org/10.1146/annurev-clinpsy-032813-153710.
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2024 Valéria Secco Carissimi; Cláudia Rejane Lima de Macedo Costa; Helenara Salvati Bertolossi Moreira; Carmen Lucia Rondon Soares
This work is licensed under a Creative Commons Attribution 4.0 International License.
Authors who publish with this journal agree to the following terms:
1) Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution License that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.
2) Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.
3) Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work.
