The existential experience of everyday life with systemic lupus erythematosus

Janni Lisander Larsen; Elisabeth O C Hall; Søren Jacobsen; Regner Birkelund

doi:10.1111/jan.13525

The existential experience of everyday life with systemic lupus erythematosus

Janni Lisander Larsen, Elisabeth O C Hall, Søren Jacobsen, Regner Birkelund

Department of Clinical Medicine

4 Citations (Scopus)

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.

Original language	English
Journal	Journal of Advanced Nursing
Volume	74
Issue number	5
Pages (from-to)	1170-1179
Number of pages	10
ISSN	0309-2402
DOIs	https://doi.org/10.1111/jan.13525
Publication status	Published - May 2018

Keywords

Activities of Daily Living/psychology
Adult
Aged
Aged, 80 and over
Chronic Disease/psychology
Existentialism/psychology
Female
Hermeneutics
Humans
Lupus Erythematosus, Systemic/psychology
Male
Middle Aged
Quality of Life/psychology

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10.1111/jan.13525

Cite this

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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.",

keywords = "Activities of Daily Living/psychology, Adult, Aged, Aged, 80 and over, Chronic Disease/psychology, Existentialism/psychology, Female, Hermeneutics, Humans, Lupus Erythematosus, Systemic/psychology, Male, Middle Aged, Quality of Life/psychology",

author = "Larsen, {Janni Lisander} and Hall, {Elisabeth O C} and S{\o}ren Jacobsen and Regner Birkelund",

note = "{\textcopyright} 2018 John Wiley & Sons Ltd.",

year = "2018",

month = may,

doi = "10.1111/jan.13525",

language = "English",

volume = "74",

pages = "1170--1179",

journal = "Journal of Advanced Nursing",

issn = "0309-2402",

publisher = "Wiley-Blackwell",

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}

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

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.

KW - Activities of Daily Living/psychology

KW - Adult

KW - Aged

KW - Aged, 80 and over

KW - Chronic Disease/psychology

KW - Existentialism/psychology

KW - Female

KW - Hermeneutics

KW - Humans

KW - Lupus Erythematosus, Systemic/psychology

KW - Male

KW - Middle Aged

KW - Quality of Life/psychology

U2 - 10.1111/jan.13525

DO - 10.1111/jan.13525

M3 - Journal article

C2 - 29350776

SN - 0309-2402

VL - 74

SP - 1170

EP - 1179

JO - Journal of Advanced Nursing

JF - Journal of Advanced Nursing

IS - 5

ER -

The existential experience of everyday life with systemic lupus erythematosus

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