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Rigshospitalet - a part of Copenhagen University Hospital
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Being in a standstill-of-life: Women's experience of being diagnosed with systemic lupus erythematosus: A hermeneutic-phenomenological study

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  5. Mothers' informational needs when deciding to have their newborn infant vaccinated with BCG. A Mixed-methods design

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  1. Early life body size, growth and risks of systemic lupus erythematosus - A large Danish observational cohort study

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  2. Accrual of Atherosclerotic Vascular Events in a Multicenter Inception Systemic Lupus Erythematosus Cohort

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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.

Original languageEnglish
JournalScandinavian Journal of Caring Sciences
Volume32
Pages (from-to)654-662
Number of pages9
ISSN0283-9318
DOIs
Publication statusPublished - 2018

    Research areas

  • Advanced nursing practice, Chronic illness, Existence, Lived experience, Long-term care, Rheumatology

ID: 51602802