"Concealing the evidence" : the imporatnce of appearance concerns for patients with systemic lupus erythematosus

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"Concealing the evidence" : the imporatnce of appearance concerns for patients with systemic lupus erythematosus. / Hale, ED; Treharne, Gareth; Norton, Y; Lyons, Antonia; Douglas, KMJ; Erb, Nicola; Kitas, George.

In: Lupus, Vol. 15, No. 8, 01.08.2006, p. 532-540.

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@article{e56831e25faf4206be1f4a5281df6327,
title = "{"}Concealing the evidence{"} : the imporatnce of appearance concerns for patients with systemic lupus erythematosus",
abstract = "Outwardly visible signs associated with systemic lupus erythematosus (SLE) can include facial rashes, alopecia and weight gain. We sought to understand the concerns of SLE patients about their appearance and the recognition of this by healthcare professionals. Semi-structured interviews were carried out with 10 women aged 26-68 years diagnosed with SLE for one to 12 years. Data were analysed with Interpretative Phenomenological Analysis (IPA); this seeks to describe and provide understanding of people's experience of a phenomenon by studying in-depth a small number from a relatively homogeneous group (women with SLE in the present study). Analysis revealed three themes concerning appearance issues. Participants described public self-consciousness after the onset of SLE. Cosmetics and clothing were used skilfully to appear 'normal', hide the 'self' and assert control but could increase feelings of difference and isolation. Self-imposed isolation was also described and may relate to depression. The understanding of family, friends, colleagues and healthcare providers was also important. Awareness of the psychosocial concerns of SLE patients with life-changing skin disease may enable multidisciplinary healthcare teams to offer a more sensitive, practical service. The physical and emotional needs of SLE patients need to be ascertained and appropriate educational and psychological services are required.",
keywords = "appearance, systemic lupus erythematosus, self-consciousness, Interpretative Phenomenological Analysis, qualitative",
author = "ED Hale and Gareth Treharne and Y Norton and Antonia Lyons and KMJ Douglas and Nicola Erb and George Kitas",
year = "2006",
month = aug,
day = "1",
doi = "10.1191/0961203306lu2310xx",
language = "English",
volume = "15",
pages = "532--540",
journal = "Lupus",
issn = "0961-2033",
publisher = "SAGE Publications",
number = "8",

}

RIS

TY - JOUR

T1 - "Concealing the evidence" : the imporatnce of appearance concerns for patients with systemic lupus erythematosus

AU - Hale, ED

AU - Treharne, Gareth

AU - Norton, Y

AU - Lyons, Antonia

AU - Douglas, KMJ

AU - Erb, Nicola

AU - Kitas, George

PY - 2006/8/1

Y1 - 2006/8/1

N2 - Outwardly visible signs associated with systemic lupus erythematosus (SLE) can include facial rashes, alopecia and weight gain. We sought to understand the concerns of SLE patients about their appearance and the recognition of this by healthcare professionals. Semi-structured interviews were carried out with 10 women aged 26-68 years diagnosed with SLE for one to 12 years. Data were analysed with Interpretative Phenomenological Analysis (IPA); this seeks to describe and provide understanding of people's experience of a phenomenon by studying in-depth a small number from a relatively homogeneous group (women with SLE in the present study). Analysis revealed three themes concerning appearance issues. Participants described public self-consciousness after the onset of SLE. Cosmetics and clothing were used skilfully to appear 'normal', hide the 'self' and assert control but could increase feelings of difference and isolation. Self-imposed isolation was also described and may relate to depression. The understanding of family, friends, colleagues and healthcare providers was also important. Awareness of the psychosocial concerns of SLE patients with life-changing skin disease may enable multidisciplinary healthcare teams to offer a more sensitive, practical service. The physical and emotional needs of SLE patients need to be ascertained and appropriate educational and psychological services are required.

AB - Outwardly visible signs associated with systemic lupus erythematosus (SLE) can include facial rashes, alopecia and weight gain. We sought to understand the concerns of SLE patients about their appearance and the recognition of this by healthcare professionals. Semi-structured interviews were carried out with 10 women aged 26-68 years diagnosed with SLE for one to 12 years. Data were analysed with Interpretative Phenomenological Analysis (IPA); this seeks to describe and provide understanding of people's experience of a phenomenon by studying in-depth a small number from a relatively homogeneous group (women with SLE in the present study). Analysis revealed three themes concerning appearance issues. Participants described public self-consciousness after the onset of SLE. Cosmetics and clothing were used skilfully to appear 'normal', hide the 'self' and assert control but could increase feelings of difference and isolation. Self-imposed isolation was also described and may relate to depression. The understanding of family, friends, colleagues and healthcare providers was also important. Awareness of the psychosocial concerns of SLE patients with life-changing skin disease may enable multidisciplinary healthcare teams to offer a more sensitive, practical service. The physical and emotional needs of SLE patients need to be ascertained and appropriate educational and psychological services are required.

KW - appearance

KW - systemic lupus erythematosus

KW - self-consciousness

KW - Interpretative Phenomenological Analysis

KW - qualitative

UR - http://www.scopus.com/inward/record.url?scp=33747881707&partnerID=8YFLogxK

U2 - 10.1191/0961203306lu2310xx

DO - 10.1191/0961203306lu2310xx

M3 - Article

C2 - 16942007

VL - 15

SP - 532

EP - 540

JO - Lupus

JF - Lupus

SN - 0961-2033

IS - 8

ER -