From diagnosis to complications: experiences of those who live with systemic lupus erythematosus

• Autor(a) principal: Souza,Rebeca Rosa de
• Data de Publicação: 2022
• Outros Autores: Marcon,Sonia Silva, Teston,Elen Ferraz, Barreto,Mayckel da Silva, Reis,Pamela dos, Cecilio,Hellen Pollyanna Mantelo, Marquete,Verônica Francisqueti, Ferreira,Patricia Chatalov
• Tipo de documento: Artigo
• Idioma: eng
• Título da fonte: Revista Brasileira de Enfermagem (Online)
• Texto Completo: http://old.scielo.br/scielo.php?script=sci_arttext&pid=S0034-71672022000500160
• topic: Lupus Erythematosus; Systemic; Diagnosis; Complications; Life Change Events; Autoimmune Diseases

ABSTRACT Objective: To understand how people with lupus experience the diagnosis and how they deal with complications arising from the disease. Method: Qualitative study, whose data were collected between February and July 2019, through semi-structured interviews with 26 individuals and submitted to content analysis. Results: Three categories emerged that show illness from lupus as a difficult experience, permeated by sadness, fear and suffering, which, in addition to being linked to society’s lack of knowledge about the disease, negatively impacts the lives of those who experience it. Furthermore, they show that the time of living with the disease favors the development of self-care strategies and greater therapeutic adherence and, consequently, longer periods of disease remission. Considerations: More disclosure about the disease and its implications in the daily lives of those affected is essential, culminating in greater understanding of family, friends and colleagues and improvements in health care and quality of life for these people.