Desenvolvimento e validação do protocolo de autocuidado em doença falciforme (Paut@-DF) para apoio educacional aos jovens pelo aplicativo móvel Globin

• Ano de defesa: 2019
• Autor(a) principal: Sonia Aparecida dos Santos Pereira
• Tipo de documento: Tese
• Tipo de acesso: Acesso aberto
• Idioma: por
• Instituição de defesa: Universidade Federal de Minas Gerais; UFMG
• Palavras-chave em Português: Doença Falciforme; Autocuidado; Protocolo; Jovem; Aplicativos Móveis; Autocuidado/métodos; Fatores Socioeconômicos; Anemia Falciforme; Enfermagem; Dissertaçoes Acadêmicas; Educação de Pacientes como Assunto; Autocuidado/psicologia; Protocolos
• Link de acesso: http://hdl.handle.net/1843/ENFC-BBTRGF

Objective: to elaborate and validate the PAUT@-DF self-care protocol for sickle cell disease and implement it in the Globin mobile application. Methods: observational, exploratory and descriptive study, with an applied research design, including four stages. First stage: includes two moments: 1- Integrative review regarding the mobile applications for sickle cell disease; 2- Content identification on self-care and preferences for the functionalities of the mobile application to be developed. Second stage: encompassed the construction, content validation and cultural adequation of the protocol. Third stage: comprised the development of the Globin application in the mobile system, web management and illustration. Fourth stage: assessment of the usability and utility. The usability was assessed in two iterations: 1- heuristic evaluation and ranking of the severity grade by specialists; 2- evaluation of the usability by the target public; The utility of the application was checked by means of a questionnaire, made by phone call to the target-public. Results: are presented regarding each stage. First Stage: the review was comprised by 12 articles published in the international literature. There were no Brazilian studies identified, despite the high occurrence of the disease, which points towards the need to develop mobile applications for the sickle cell disease. Regarding the self-care content and the applications functionality, 21 youngsters with age ranging from 13 to 24, contributed for the identification of the physical, emotional and social domains of self-care that were than related to the technological resources of the application being developed. The choice of the name Globin for the application was unanimous among the participants. Second stage: the protocol for self-care of the sickle cell disease named as Paut@-DF was comprised of 6 domains: 1st- first approaches (personal, clinical and self-care data); 2nd- Blogin (information particular to the disease during teenage years); 3rd- daily follow-up of the feelings (of neutrality, joy, sadness, anger, worry, confusion, rejection); 4th- daily follow-up (pain, exhaustion, fever and sleep); 5th- other situations (priapism, menstruation, hospitalizations and other difficulties); 6th- action plan (hidration, use of hydroxyurea and folic acid supplement medication). Variation of the IVC clarity and relevance means of the items assessed by the specialists and youngsters was between 0,9 and 1,0. Third stage: from the Paut@-DF, the Globin was structured in the following items: missions, follow-up, history, profile, schedule and game. The management module was structured to receive and process the user data from the application. Fourth stage: the heuristic evaluation of the Globin generated an average of 53,97 points. The ranking of the severity grade of the violated heuristics allowed interface adjustments. The usability assessment was made by eight youngsters and the mean obtained was of 90,3 points, which is considered an excellent usability. From the utility evaluation, three thematic categories emerged: 1) Knowledge source; 2) Support to comprehend the need to take care of oneself; 3) Improvement of the self-care habit. Conclusion: this study provides the Paut@-DF protocol with validated content, making it a management tool for the support to self-care practice by youngsters with sickle cell disease. The acquisition of new information and the refinement of knowledge about the sickle cell disease from the Paut@-DF implemented in the Globin mobile application were key so the youngsters could better comprehend the need of care, as well as improve the practice of self-care.