The systemic lúpus erythematosus and women's selfimage carrier / O lúpus eritematoso sistêmico e a autoimagem da mulher portadora / El lupus eritematoso sistémico y el portadora autoimagen de las mujeres

Abstract

Objetivo: identificar as alterações corporais percebidas pelas pacientes lúpicas; analisar a percepção que as pacientes têm de si mesmas diante dessas alterações e elencar as mudanças que essas alterações trouxeram para o seu cotidiano. Metodologia: estudo descritivo-exploratório e abordagem qualitativa, desenvolvido em um Hospital público, em Teresina - Piauí, com 10 pacientes, diagnosticadas com Lúpus Eritematoso Sistêmico, por meio de um roteiro de entrevista semiestruturada, entre 29 de junho e 04 de julho de 2012, após parecer favorável conforme protocolo nº 01849912.3.0000.5209. Resultados: após análise de conteúdo, formularam-se três categorias: Alterações corporais percebidas; O sentimento da mulher frente às alterações corporais; O reflexo das alterações corporais no cotidiano. Essas alterações influenciam nos aspectos emocionais das mulheres lúpicas, trazendo um sentimento de transformações, assim elas experimentam sensações diversas, como pensamentos otimistas, preocupações e medos, outras relatam que são acolhidas e amparadas pela família e sociedade. Conclusão: percebeu-se que a compreensão dos aspectos físicos, como: inchaço, manchas no rosto, queda de cabelo e psicológicos que envolvem a mulher com lúpus proporciona uma assistência satisfatória e qualificada, pois trazem consigo um cuidado mais holístico para essa clientela.

Duality of Living With Systemic Lupus Erythematosus: Fluctuating Between “Good Days” and “Bad Days”

“…Some participants in this study reported that alopecia is one of the most impacting skin manifestations because, according to them, its presence causes shame, sadness, isolation and prejudice. Similar results are highlighted in studies carried out in different parts of the world on the experience of living with SLE [9][10][11]20,22 . Impaired physical appearance, body shape, hair and skin, among others, often afflict female vanity, in addition to being a reason for discrimination and deprivation of leisure activities to avoid social exposure, which results in a great impact on the women's quality of life 11,18,23 .…”

“…Another manifestation arising from illness due to SLE and that negatively interferes in the daily life of sick people is the change in self-image, resulting from skin manifestations, such as skin blemishes, transient and permanent eruptions and alopecia. The literature shows that the negative impact of these manifestations is significantly greater on women, interfering with self-esteem and personal value [9][10][11]20 . However, sometimes, the individuals with SLE feel that these manifestations are not sufficiently valued by the health professionals, as they are related to physical appearance, according to a study carried out on the East coast of the USA 21 .…”

“…The physical and psychological manifestations and body restrictions resulting from SLE also have consequences for the professional life, especially when it is necessary to leave work activities, which, in turn, affects the economic condition of the people affected and, consequently, their quality of life 11,[22][23] . In these cases, the loss of professional stability is most of the times directly related to the manifestations of the disease, because the individuals are not always able to work and also because the need to be away from work to go to the routine medical check-ups and appointments is poorly understood by the employers.…”

“…However, there is still a need for studies that highlight how people living with SLE perceive their daily lives, since getting to know better the subjective face of this disease and understanding the way in which it materializes in the subject's historicity, as well as the anxieties, doubts and fears that accompany it, can positively influence the quality of the care provided by the health professionals. Thus, there is a need for Nursing care that contemplates this understanding, adding practical and technical care, as living with the symptoms and the sociocultural stereotype of the disease produces multiple implications that need to be considered 11 .…”

“…Furthermore, as it is a chronic disease, for comprehensive care to be realized, it is necessary to consider the psychosomatic dimension, since the stress and psychosocial distress factors, for example, can influence its triggering, evolution, worsening and possible control 11 . Thus, learning the reality experienced by people with SLE can support care planning that prevents or minimizes possible negative consequences for life and health and enhances care aimed at maintaining control of the disease.…”