Health literacy: educational brochure for pediatric patients with neurofibromatosis type 1

Author:

Souza Lucas Paulo de1ORCID,Zen Paulo Ricardo Gazzola1ORCID

Affiliation:

1. Universidade Federal de Ciências da Saúde de Porto Alegre

Abstract

Objective Develop a folder for caregivers of pediatric patients newly diagnosed with neurofibromatosis type 1 and for adolescents and young adults living with the disease. Methods Non-experimental descriptive study, using empirical action research. The process of creating the material occurred in three stages: identification of the problem; team discussion; and compilation of knowledge and production of the folder. Results The folder prepared presented basic information about the disease, with concepts and figures. It also warned the reader about searching for information on the internet, which may be inadequate, non-specific or without scientific evidence. Conclusion The use of health literacy as an education tool is reflected in decision-making about health and necessary medical care. The knowledge obtained from reading materials like this increases autonomy in relation to treatment and health decisions, as more reliable knowledge about the disease is acquired.

Funder

Coordenação de Aperfeiçoamento de Pessoal de Nível Superior

Publisher

Sociedade Brasileira de Enfermeiros Pediatras

Reference16 articles.

1. 1. Ferner RE, Huson SM, Thomas N, Moss C, Willshaw H, Evans DG, et al. Guidelines for the diagnosis and management of individuals with neurofibromatosis 1. J Med Genet. 2007;44(2):81-8.

2. 2. Friedman JM. Neurofibromatosis 1. In: Adam MP, Mirzaa GM, Pagon RA, Wallace SE, Bean LJH, Gripp KW et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington; 2023 [cited 2023 October 15]. Available from: https://www.ncbi.nlm.nih.gov/books/NBK1109

3. 3. Reis SC. Neurofibromatose e seus desafios [Trabalho de Conclusão de Curso – Graduação em Licenciatura em Ciências Biológicas]. Goiás: Instituto Federal Goiano; 2023 [citado em 2024 Mar 21]. Disponível em: https://repositorio.ifgoiano.edu.br/handle/prefix/3874

4. 4. World Health Organization (WHO). Health Promotion Glossary of Terms 2021. Geneve: WHO; 2021 [cited 2024 Mar 21]. Available from: https://www.who.int/publications/i/item/9789240038349

5. 5. Herdman TH, Kamitsuru S. Diagnósticos de enfermagem da NANDA-I: definições e classificação 2018-2020. 11ª ed. Porto Alegre: Artmed; 2018.

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