Letramento em saúde de cuidadores de crianças com transtorno do espectro autista: revisão de escopo
DOI:
https://doi.org/10.5902/2179769289909Palavras-chave:
Letramento em Saúde, Cuidadores, Transtorno de Espectro Autista, Cuidado da Criança, CriançaResumo
Objetivo: mapear a literatura relacionada às condições de letramento em saúde (LS) de cuidadores de crianças com transtorno do espectro autista (TEA). Método: revisão de escopo, realizada entre janeiro e fevereiro de 2024 e atualizada em agosto de 2025, em seis fontes de dados e literatura cinzenta. Os dados foram extraídos por meio de formulário adaptado da JBI e, em seguida, procedeu-se à análise descritiva das informações obtidas. O protocolo foi registrado no Open Science Framework. Resultados: das 741 publicações identificadas, quatro atenderam aos critérios de inclusão e compuseram a revisão. Cuidadores de crianças com TEA enfrentam fragilidades no acesso e na compreensão de informações de saúde, o que prejudica a tomada de decisões. Conclusão: o LS desses cuidadores permanece pouco explorado e investigá-los é fundamental para orientar intervenções que qualifiquem o cuidado infantil.
Downloads
Referências
Baio J, Wiggins L, Christensen DL, Maenner MJ, Daniels J, Warren Z, et al. Prevalence of autism spectrum disorder among children aged 8 years - autism and developmental disabilities monitoring network, 11 sites, United States, 2016. MMWR Surveill Summ. 2018 Apr 27;67(6):1-23. doi: 10.15585/mmwr.ss6706a1.
Hus Y, Segal O. Functional Communication Profiles of Children and Youth with Autism: A Roadmap to Therapeutic and Educational Interventions. Folia Phoniatrica et Logopaedica. 2020;73(3):205-21. doi: 10.1159/000510056.
Lee JD, Terol AK, Yoon CD, Meadan H. Parent-to-parent support among parents of children with autism: A review of the literature. Autism. 2024;28(2):263-75. doi: 10.1177/13623613221146444.
World Health Organization (WHO). Health promotion glossary of terms 2021. Geneva: WHO. 2021. Available from: https://www.who.int/publications/i/item/9789240038349.
Nutbeam D. Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. Health promotion international. 2000;15(3):259-67. doi: 10.1093/heapro/15.3.259.
Warreman EB, Lloyd SE, Nooteboom LA, Leenen PJ, Terry MB, Hoek HW, et al. Psychological, behavioural, and physical aspects of caregiver strain in autism-caregivers: a cohort study. EClinicalMedicine. 2023 Sep 20:64:102211. doi: 10.1016/j.eclinm.2023.102211.
Dababnah S, Kim I, Shaia WE. ‘I am so fearful for him’: a mixed-methods exploration of stress among caregivers of Black children with autism. Int J Dev Disabil. 2022;68(5):658-70. doi: 10.1080/20473869.2020.1870418.
Nevill T, Keeley J, Hunt S, Skoss R, Lindly O, Downs J, et al. Efficacy of health literacy interventions for caregivers of individuals with neurodevelopmental and chronic conditions: a rapid review. Children (Basel). 2024;12(1):9. doi: 10.3390/children12010009.
Zaidman EA, Scott KM, Hahn D, Bennett P, Caldwell PH. Impact of parental health literacy on the health outcomes of children with chronic disease globally: A systematic review. J Paediatr Child Health. 2023;59(1):12-31.
Grosvenor LP, Cohen RJ, Gordon NP, Massolo ML, Cerros HJ, Yoshida CK, et al. Barriers to healthcare for latinx autistic children and adolescents. J Autism Dev Disord. 2025;55(2):605-19. doi: 10.1007/s10803-023-06229-7.
Lindly OJ, Cabral J, Mohammed R, Garber I, Mistry KB, Kuhlthau KA. “I don’t do much without researching things myself”: A mixed methods study exploring the role of parent health literacy in autism services use for young children. J Autism Dev Disord. 2022;52(8):3598-611. doi: 10.1007/s10803-021-05240-0.
Valderrama A, Courcy I, Weis-Heitner L, d'Arc BF. Les enjeux de littératie dans la communication aux parents du diagnostic de trouble du spectre de l’autisme chez l’enfant. Santé Mentale Qué. 2020;45(1):127-45. doi: 10.7202/1070244ar.
Brach C, Keller D, Hernandez LM, Baur C, Parker R, Dreyer B, et al. Ten attributes of health literate health care organizations. NAM perspectives. 2012.
Aromataris E, Lockwood C, Porritt K, Pilla B, Jordan Z, editors. JBI Manual for Evidence Synthesis. JBI; 2024 [cited 2025 oct 20] Available from: https://synthesismanual.jbi.global. https://doi.org/10.46658/JBIMES-24-01
Tricco AC, Lillie E, Zarin W, O'Brien KK, Colquhoun H, Levac D, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018;169(7):467-73. doi: 10.7326/M18-0850.
Shalihin SAS, Ilias K, Amin NA, Daud AZC, Alsabbah SAM. Mental health literacy survey among parents of children with autism spectrum condition: a preliminary study. J Health Transl Med (JUMMEC). 2023:71-8. doi: 10.22452/jummec.sp2023no2.8.
Sørensen K, Van den Broucke S, Fullam J, Doyle G, Pelikan J, Slonska Z, et al. Health literacy and public health: a systematic review and integration of definitions and models. BMC Public Health. 2012;12(1):80. doi: 10.1186/1471-2458-12-80.
American Educational Research Association (AERA); American Psychological Association (APA); National Council on Measurement in Education (NCME). Standards for educational and psychoogical testing. Lanham, MD: American Educational Research Association; 2014 [cited 2025 Oct 20]. Available from: https://www.acenet.edu/Pages/default.aspx.
Osborne RH, Cheng CC, Nolte S, Elmer S, Besancon S, Budhathoki SS, et al. Health literacy measurement: embracing diversity in a strengths-based approach to promote health and equity, and avoid epistemic injustice. BMJ Global Health. 2022;7(9):e009623.
Nutbeam D, Lloyd JE. Understanding and responding to health literacy as a social determinant of health. Annu Rev Public Health. 2021;42(1):159-73.
Cabellos-García AC, Castro-Sánchez E, Martínez-Sabater A, Díaz-Herrera MÁ, Ocaña-Ortiz A, Juárez-Vela R, et al. Relationship between determinants of health, equity, and dimensions of health literacy in patients with cardiovascular disease. Int J Environ Res Public Health. 2020;17(6):2082. doi: 10.3390/ijerph17062082.
Brega A, Barnard J, Mabachi N, Weiss B, DeWalt D, Brach C. Agency for Healthcare Research and Quality. AHRQ health literacy universal precautions toolkit. Rockville (MD); 2025 [cited 2025 Oct 20]. Available from: https://www.ahrq.gov/health-literacy/improve/precautions/index.html.
Bremer D, Klockmann I, Jaß L, Härter M, Von dem Knesebeck O, Lüdecke D. Which criteria characterize a health literate health care organization? - a scoping review on organizational health literacy. BMC Health Serv Res. 2021;21(1):664.
Jorm AF, Korten AE, Jacomb PA, Christensen H, Rodgers B, Pollitt P. “Mental health literacy”: a survey of the public's ability to recognise mental disorders and their beliefs about the effectiveness of treatment. Med J Aust. 1997;166(4):182-6. doi: 10.5694/j.1326-5377.1997.tb140071.x.
O’Connor M, Casey L. The Mental Health Literacy Scale (MHLS): A new scale-based measure of mental health literacy. Psychiatry Res. 2015;229(1-2):511-6. doi: 10.1016/j.psychres.2015.05.064.
Sturmer G, Corrêa ID, Miranda RL. A saúde mental de familiares de pessoas com TEA: uma análise bibliométrica (2001-2023). Rev Psicol Saúde. 2025;16(2):e16451929. doi: 10.20435/pssa.v16i1.2374.
Downloads
Publicado
Como Citar
Edição
Seção
Licença
Copyright (c) 2025 Revista de Enfermagem da UFSM
Este trabalho está licenciado sob uma licença Creative Commons Attribution 4.0 International License.
Este trabalho está licenciado sob uma Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.
