O uso da comunicação visual na investigação dos papéis ocupacionais de pacientes com esclerose lateral amiotrófica
Data
2024-11-27
Autores
Gonçalves, Laís Pelka Barrios 
Orientadores
Favero, Francis Meire
Tipo
Dissertação de mestrado
Título da Revista
ISSN da Revista
Título de Volume
Resumo
Introdução: A Esclerose Lateral Amiotrófica é uma doença de ordem neurodegnerativa, podendo descontinuar o paciente de suas atividades, assim avaliar o papel ocupacional do indivíduo permite identificar se existe o desejo da retomada de suas funções, visando sempre a qualidade de vida. Objetivo: Investigar o desempenho dos papéis ocupacionais de pacientes com Esclerose Lateral Amiotrófica a partir do uso da comunicação visual. Método: Esse estudo tratase de uma pesquisa observacional transversal, de amostra por conveniência, aprovado no Comitê de ética da Universidade Federal de São Paulo sob CEP/UNIFESP: 0385/2024. Foram avaliados 3 pacientes com diagnóstico de ELA com escalas cognitiva ALSCBSBR e funcional ALFSRSR, também foi utilizado a LIPO para investigar os papéis ocupacionais. Todas as avaliações foram ajustadas para serem respondidas de maneira online utilizando os formulários do Google com o uso do movimento ocular na fase tardia da doença. Resultados: Os pacientes pontuaram nas escalas ALSBSBr entre 13 18 pontos, ALSFRSR de 314 e a LIPO apresentou padrão de desempenho contínuo em 4 dos papéis ocupacionais listados: trabalhador 33%; cuidador 67%; amigo 67%; membro de família 67%. Padrão de ruptura apenas no presente dos papéis de trabalhador 67%; amigo 33%; membro de família 33%; passatempo amador 33%, porém todos com perspectiva de serem retomados no futuro. Conclusões: Podemos concluir que apesar dos pacientes com ELA apresentarem uma disfunção motora importante o seu o cognitivo está preservado, e que foi verificado a extrema vontade da retomada dos seus papéis ocupacionais, com isso podemos considerar que esses indivíduos possam de alguma forma contribuir e retornar aos seus vínculos sociais.
Introduction: Amyotrophic Lateral Sclerosis is a neurodegenerative disease that can discontinue the patient from their activities. Thus, evaluating the individual's occupational role allows identifying whether there is a desire to resume their functions, always aiming at quality of life. Objective: To investigate the performance of occupational roles of patients with Amyotrophic Lateral Sclerosis through the use of visual communication. Method: This study is a crosssectional observational research, with a convenience sample, approved by the Ethics Committee of the Federal University of São Paulo under Opinion 6.960.720. 3 patients were evaluated with the ALSCBSBR cognitive and ALFSRSR functional scales. LIPO was also used to investigate occupational roles. All assessments were adjusted to be answered online using Google forms with the use of eye movement in the late phase of the disease. Results: Patients scored between 13 and 18 points on the ALSBSBr scale, and 314 on the ALSFRSR scale. LIPO showed a continuous performance pattern in four of the listed occupational roles: worker 33%; caregiver 67%; friend 67%; and family member 67%. The pattern of disruption was only present in the roles of worker 67%; friend 33%; family member 33%; and hobbyist 33%, but all of them had the prospect of being resumed in the future. Conclusions: We can conclude that although ALS patients have significant motor dysfunction, their cognitive function is preserved, and that an extreme desire to resume their occupational roles was observed. Therefore, we can consider that these individuals can somehow contribute and return to their social ties.
Introduction: Amyotrophic Lateral Sclerosis is a neurodegenerative disease that can discontinue the patient from their activities. Thus, evaluating the individual's occupational role allows identifying whether there is a desire to resume their functions, always aiming at quality of life. Objective: To investigate the performance of occupational roles of patients with Amyotrophic Lateral Sclerosis through the use of visual communication. Method: This study is a crosssectional observational research, with a convenience sample, approved by the Ethics Committee of the Federal University of São Paulo under Opinion 6.960.720. 3 patients were evaluated with the ALSCBSBR cognitive and ALFSRSR functional scales. LIPO was also used to investigate occupational roles. All assessments were adjusted to be answered online using Google forms with the use of eye movement in the late phase of the disease. Results: Patients scored between 13 and 18 points on the ALSBSBr scale, and 314 on the ALSFRSR scale. LIPO showed a continuous performance pattern in four of the listed occupational roles: worker 33%; caregiver 67%; friend 67%; and family member 67%. The pattern of disruption was only present in the roles of worker 67%; friend 33%; family member 33%; and hobbyist 33%, but all of them had the prospect of being resumed in the future. Conclusions: We can conclude that although ALS patients have significant motor dysfunction, their cognitive function is preserved, and that an extreme desire to resume their occupational roles was observed. Therefore, we can consider that these individuals can somehow contribute and return to their social ties.
Descrição
Citação
GONÇALVES, Laís Pelka Barrios. O uso da comunicação visual na investigação dos papéis ocupacionais de pacientes com esclerose lateral amiotrófica. 2024. 94 f. Dissertação (Mestrado Profissional em Tecnologia, Gestão e Saúde Ocular) - Escola Paulista de Medicina, Universidade Federal de São Paulo (UNIFESP), São Paulo, 2024.