Educação alimentar e nutricional na Esclerose Lateral Amiotrófica (ELA): práticas de ensino e aprendizagem mediadas por tecnologia

Abstract

Amyotrophic lateral sclerosis (ALS) is a rare neuromuscular, multisystem disease characterized by motor neuron degeneration. Malnutrition reduces the quality of life and survival of affected patients. Family members, caregivers, and health professionals were selected with specific training or knowledge to perform their role with ALS patients. Therefore, health education is essential for promoting health, comfort, support, knowledge for prevention, and self-care of patients. The general objective of this thesis was to develop and evaluate a self-instructional educational path, mediated by technology, on food and nutrition in amyotrophic lateral sclerosis. To this end, five products were developed: 1) A scoping review protocol (article 1); 2) A scoping review (article 2); 3) An educational path on food and nutrition in ALS offered in the Virtual Learning Environment of the Unified Health System (AVASUS); 4) A data report on the educational path (article 3). 5) The article related to the educational intervention (article 4). Each product was developed according to the required methodological specificity. The scoping review protocol (article 1) was developed according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA ScR). The scoping review (article 2) also reached PRISMA ScR and used the following databases and virtual libraries: PubMed/MEDLINE, Excerpta Medica Database (Embase), Scopus, Web of Science, SciELO, and Google Scholar. Of a total of 189 records identified, 3 were included. Continuing, the educational track on food and nutrition in ALS was composed of four self-instructional courses in the format of Massive Open Online Courses (MOOCs), on “food and nutrition in ALS," “dietary modifications in ALS," “tube feeding in ALS,” and “specific nutritional guidelines in ALS”. The Data Report (article 3) was prepared to characterize the group of students' demographics and evaluate the educational path on food and nutrition in ALS. Article 4 was prepared to evaluate the effectiveness of the proposed educational intervention for health professionals, caregivers and patients with ALS who completed the educational path. Given the products developed, the protocol declared the importance of adequate planning for the elaboration of the scoping review. The studies selected for the scoping review identified and mapped the main strategies for food and nutrition educommunication applied to caregivers and patients with neurodegenerative diseases. The facilitating aspects and barriers in the development and implementation of the proposed educommunication actions were also detected. With the elaboration of the educational path on food and nutrition in ALS, it was possible to train and update the knowledge of health professionals, caregivers, and patients, enabling autonomy in the construction of knowledge. Therefore, the Data Report article was developed, which presents a descriptive study about the data that make up the educational path on food and nutrition in ALS, which showed scalability, given the high number of registrations, carried out in the five regions of Brazil and abroad. The educational intervention article can evaluate the effectiveness of the teaching-learning process of the educational path and present improvements in learning about food and nutrition in ALS among health professionals, caregivers, and patients.