Meanings of the sickening process for patients with systemic lupus erythematosus: a review of the literature

Alves, Vera Lúcia Pereira; Carniel, Andreia Queiroz; Costallat, Lílian Tereza Lavras; Turato, Egberto Ribeiro

doi:10.1016/j.rbre.2014.08.010

Cited by 3 publications

(8 citation statements)

References 21 publications

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“…The diagnostic phase of SLE is an ambiguous and existential critical time for the patient. Research suggests that the patient needs a caring relation during the diagnostic phase, so anxiety, distress and despair might diminish . However, knowledge of the overall meaning of the existential dimension is often inconclusive, which may explain why awareness is difficult to attain for both healthcare providers and the patients themselves.…”

Section: Discussionmentioning

confidence: 99%

“…Despite this, the way in which the diagnosis is delivered may affect patients’ future life and lack of validation for perceived symptoms may influence life beyond any physical stabilisation of the disease . The complexity of the physical symptoms and the unpredictable course situates the patient in an uncertain health condition which in the initial phase of illness is difficult to comprehend . Receiving a SLE diagnosis is thus demanding and poses a fundamental change of life.…”

Section: Introductionmentioning

confidence: 99%

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Being in a standstill‐of‐life: women's experience of being diagnosed with systemic lupus erythematosus: a hermeneutic‐phenomenological study

Larsen

Hall

Jacobsen

et al. 2017

Scandinavian Caring Sciences

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Systemic lupus erythematosus (SLE) is a highly unpredictable and potentially lethal disease which ultimately challenges identity, future and the meaning of life. In a caring context, the experience of good health is perceived to be a balance between biomedical health and the existential experience of having a good life. This balance is jeopardised in the face of severe chronic illness and leads to extensive suffering if not handled carefully. Research suggests that patients suffering from severe chronic illness need support on an existential level, but also emphasises that, given its elusive nature, caring for the existential dimension is difficult to manage. This paper explores the experience of being diagnosed with SLE as an existential phenomenon. Through repeated phenomenological and hermeneutic interviews with 15 women conducted from 2013 to 2015, data concerning the diagnostic phase of SLE were analysed using Van Manen's phenomenology of practice. The essence was found to be a standstill in life comprehended through three inter-related themes: standing in a swirl of events, standing on uneven ground and standing at a turning point with oneself and others. The paper elucidates how existential life phenomena are lived, during the course of being diagnosed. In conclusion, it provides an ethical awareness of how a standstill in life is lived and of the patients' existential transition during the diagnostic phase. A holistic approach is recommended in caring for patients with SLE.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Being in a standstill‐of‐life: women's experience of being diagnosed with systemic lupus erythematosus: a hermeneutic‐phenomenological study

Larsen

Hall

Jacobsen

et al. 2017

Scandinavian Caring Sciences

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“…Incidence rates range from approximately 1 to 10 per 100,000 person-years, whereas prevalence is between 20 and 70 per 100,000 person-years (4,5). Moreover, SLE incidence has been reported as being higher in young women and in African Americans than in other demographics (1,6,7). Some time prior to a diagnosis of SLE, a number of seemingly disconnected symptoms may be reported, such as fatigue, weight loss and unexplained fevers.…”

Section: Introductionmentioning

confidence: 99%

“…Incidence rates range from approximately 1 to 10 per 100,000 person-years, whereas prevalence is between 20 and 70 per 100,000 person-years (4,5). Moreover, SLE incidence has been reported as being higher in young women and in African American individuals than in other demographic populations (1,6,7).…”

Section: Introductionmentioning

confidence: 99%

Patient Experiences of Systemic Lupus Erythematosus: Findings From a Systematic Review, Meta‐Summary, and Meta‐Synthesis

Petrocchi

Visintini

Marchi³

et al. 2022

Arthritis Care & Research

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Objective: To explore the experience of patients with systemic lupus erythematosus (SLE).Methods: A systematic review of qualitative studies published in English in the past 10 years and identified through the PubMed, CINAHL, Scopus and Web of Science databases was performed following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The methodological quality of each included study was assessed using the Critical Appraisal Screening Programme tool. Study findings were then subjected to a metasummary and meta-synthesis. Results:Twenty-six studies with a good overall methodological quality have been included, documenting the experience of 565 adult patients (95% women). A total of 17 codes emerged, summarising the life experience of SLE patients; the most and least frequent codes in the meta-summary were 'Feeling not as I usually do' (69.2%) and 'Having wishes' (7.7%), respectively. The codes were then categorised into five main themes, summarising the experience of living with SLE: (1) 'Experiencing waves of emotions due to the unpredictable nature of the

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“…However, together with organ involvement or the potential risk of more serious development, the overall consequences for life, living, work and economy ultimately challenge multiple dimensions in life and perceived future (Gordon et al., ; Mazzoni, Cicognani, & Prati, ). In addition, patients' lives with SLE are reported being trivialized, distrusted and misunderstood by family, friends and professionals, thus intensifying the restricted conditions these patients are already faced with (Alves, Carniel, Costallat, & Turato, ; Hale, Treharne, Norton, et al., ; Mendelson, ). Since SLE predominantly affects women, nurses working in rheumatologic healthcare contexts with SLE patients will typically encounter female patients.…”

Section: Introductionmentioning

confidence: 99%

The existential experience of everyday life with systemic lupus erythematosus

Larsen

Hall

Jacobsen

et al. 2018

Journal of Advanced Nursing

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Meanings of the sickening process for patients with systemic lupus erythematosus: a review of the literature

Cited by 3 publications

References 21 publications

Being in a standstill‐of‐life: women's experience of being diagnosed with systemic lupus erythematosus: a hermeneutic‐phenomenological study

Being in a standstill‐of‐life: women's experience of being diagnosed with systemic lupus erythematosus: a hermeneutic‐phenomenological study

Patient Experiences of Systemic Lupus Erythematosus: Findings From a Systematic Review, Meta‐Summary, and Meta‐Synthesis

The existential experience of everyday life with systemic lupus erythematosus

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