Significados do adoecer para pacientes com lúpus eritematoso sistêmico: revisão da literatura

Abstract

Systemic lupus erythematosus is an autoimmune disease that causes many psychological repercussions that have been studied through qualitative research. These are considered relevant, since they reveal the amplitude experienced by patients. Given this importance, this study aims to map the qualitative production in this theme, derived from studies of experiences of adult patients of both genders and that had used as a tool a semi-structured interview and/or field observations, and had made use of a sampling by a saturation criterion to determine the number of participants in each study. The survey was conducted in Pubmed, Lilacs, Psycinfo e Cochrane databases, searching productions in English and Portuguese idioms published between January 2005 and June 2012. The 19 revised papers that have dealt with patients in the acute phase of the disease showed themes that were categorized into eight topics that contemplated the experienced process at various stages, from the onset of the disease, extending through the knowledge of the diagnosis and the understanding of the manifestations of the disease, drug treatment and general care, evolution and prognosis. The collected papers also point to the difficulty of understanding, of the patients, on what consists the remission phase, revealing also that this is a clinical stage underexplored by psychological studies.

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

“…Regarding schooling, nine of them had less than eight years of study. They all presented cutaneous, articular and psychological manifestations related to the disease, the most common being: presence of joint pain (26); alopecia (21); easy tiredness (18); anxiety (15) and fatigue (14). The manifestations of the disease were varied and related to the diagnosis time, which ranged from four months to 30 years.…”

“…Lack of knowledge about these symptoms by those who live with the person with SLE results in frequent misunderstanding and even stigma of disdain. A review that investigated the meaning of illness due to SLE showed that fatigue is recurrently experienced and is present regardless of whether the disease is in an exacerbation or remission phase, negatively interfering in the daily activities 18 . In particular, the effect of these manifestations on the reduction of the ability to work and the maintenance of employment are highlighted, which was indicated by a study carried out in the United Kingdom with 393 individuals with SLE 19 .…”

“…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 .…”

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“…Treatments performed on patients with systemic lupus erythematousus require a multidisciplinary and multiprofessional approach. SLE must be accompanied by a rheumatologist and there is a need for frequent drug treatment in order to keep the disease inactive [3,15,16]. In this case report, the patient was using control medications with minimal dosage, as she had her SLE controlled, without major systemic involvement.…”

Síndrome de sobreposição de Lúpus Eritematoso Sistêmico e Líquen Plano Oral: relato de caso

“…O Lúpus Eritematoso (LE) é uma patologia inflamatória crônica, multissistêmica e é considerada o protótipo da doença autoimune. Sua etiologia não é totalmente esclarecida, entretanto estudos apontam agentes desencadeantes do LE como fatores genéticos, ambientais, emocionais e hormonais (Alves et al, 2015). Afeta principalmente mulheres jovens em idade reprodutiva e, em comparação com a população masculina, ocorre na proporção de nove mulheres para cada um homem (Ferreira Borba et al, 2008).…”