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The existential experience of everyday life with systemic lupus erythematosus

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@article{732c7ca066064680be04582003dadfbc,
title = "The existential experience of everyday life with systemic lupus erythematosus",
abstract = "AIM: To explore from the perspective of women the nature of basic existential conditions while living with systemic lupus erythematosus.BACKGROUND: Systemic lupus erythematosus has an unpredictable disease course and is documented to cause an existential rearrangement of life. The significance of changes in existential conditions and related experiences are unclear in the context of nursing and women with systemic lupus erythematosus.DESIGN: A qualitative design guided by Van Manen's hermeneutic-phenomenological methodology.METHOD: Individual in-depth interviews with 15 women diagnosed with systemic lupus erythematosus and of various ages, disease durations and severities were undertaken from September 2013 - October 2015. Data were analysed following van Manen's phenomenological approach and using drawing as an interpretive tool.FINDINGS: The main existential experience was interpreted as a person {"}moving with the waves of systemic lupus erythematosus{"} constituted by the themes {"}oscillating between presence and absence of systemic lupus erythematosus,{"} {"}recognizing space and bodily possibilities and limitations{"} and {"}being enriched through relationships and activities.{"} When systemic lupus erythematosus was flaring, well-being was threatened and a laborious time to escape the feeling of a setback-in-life persisted long after the disease was medically under control.CONCLUSION: Daily life with systemic lupus erythematosus is conditioned by a prominent need to be in existential motion, related to the absence and presence of systemic lupus erythematosus. The experience of a setback-in-life by illness might challenge well-being and indicates that periods of disease flares or disturbing symptoms are critical time points to provide support.",
author = "Larsen, {Janni Lisander} and Hall, {Elisabeth O C} and S{\o}ren Jacobsen and Regner Birkelund",
note = "Copenhagen Lupus and Vasculitis Clinic",
year = "2018",
month = "5",
doi = "10.1111/jan.13525",
language = "English",
volume = "74",
pages = "1170--1179",
journal = "Journal of Advanced Nursing",
issn = "0309-2402",
publisher = "Wiley-Blackwell Publishing Ltd",
number = "5",

}

RIS

TY - JOUR

T1 - The existential experience of everyday life with systemic lupus erythematosus

AU - Larsen, Janni Lisander

AU - Hall, Elisabeth O C

AU - Jacobsen, Søren

AU - Birkelund, Regner

N1 - Copenhagen Lupus and Vasculitis Clinic

PY - 2018/5

Y1 - 2018/5

N2 - AIM: To explore from the perspective of women the nature of basic existential conditions while living with systemic lupus erythematosus.BACKGROUND: Systemic lupus erythematosus has an unpredictable disease course and is documented to cause an existential rearrangement of life. The significance of changes in existential conditions and related experiences are unclear in the context of nursing and women with systemic lupus erythematosus.DESIGN: A qualitative design guided by Van Manen's hermeneutic-phenomenological methodology.METHOD: Individual in-depth interviews with 15 women diagnosed with systemic lupus erythematosus and of various ages, disease durations and severities were undertaken from September 2013 - October 2015. Data were analysed following van Manen's phenomenological approach and using drawing as an interpretive tool.FINDINGS: The main existential experience was interpreted as a person "moving with the waves of systemic lupus erythematosus" constituted by the themes "oscillating between presence and absence of systemic lupus erythematosus," "recognizing space and bodily possibilities and limitations" and "being enriched through relationships and activities." When systemic lupus erythematosus was flaring, well-being was threatened and a laborious time to escape the feeling of a setback-in-life persisted long after the disease was medically under control.CONCLUSION: Daily life with systemic lupus erythematosus is conditioned by a prominent need to be in existential motion, related to the absence and presence of systemic lupus erythematosus. The experience of a setback-in-life by illness might challenge well-being and indicates that periods of disease flares or disturbing symptoms are critical time points to provide support.

AB - AIM: To explore from the perspective of women the nature of basic existential conditions while living with systemic lupus erythematosus.BACKGROUND: Systemic lupus erythematosus has an unpredictable disease course and is documented to cause an existential rearrangement of life. The significance of changes in existential conditions and related experiences are unclear in the context of nursing and women with systemic lupus erythematosus.DESIGN: A qualitative design guided by Van Manen's hermeneutic-phenomenological methodology.METHOD: Individual in-depth interviews with 15 women diagnosed with systemic lupus erythematosus and of various ages, disease durations and severities were undertaken from September 2013 - October 2015. Data were analysed following van Manen's phenomenological approach and using drawing as an interpretive tool.FINDINGS: The main existential experience was interpreted as a person "moving with the waves of systemic lupus erythematosus" constituted by the themes "oscillating between presence and absence of systemic lupus erythematosus," "recognizing space and bodily possibilities and limitations" and "being enriched through relationships and activities." When systemic lupus erythematosus was flaring, well-being was threatened and a laborious time to escape the feeling of a setback-in-life persisted long after the disease was medically under control.CONCLUSION: Daily life with systemic lupus erythematosus is conditioned by a prominent need to be in existential motion, related to the absence and presence of systemic lupus erythematosus. The experience of a setback-in-life by illness might challenge well-being and indicates that periods of disease flares or disturbing symptoms are critical time points to provide support.

U2 - 10.1111/jan.13525

DO - 10.1111/jan.13525

M3 - Journal article

VL - 74

SP - 1170

EP - 1179

JO - Journal of Advanced Nursing

JF - Journal of Advanced Nursing

SN - 0309-2402

IS - 5

ER -

ID: 55218626