"Joining-the-dots" for systematic lupus erythematosus patients: personal perspectives of healthcare from a qualitative study

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"Joining-the-dots" for systematic lupus erythematosus patients: personal perspectives of healthcare from a qualitative study. / Hale, ED; Treharne, Gareth; Lyons, Antonia; Mole, S; Mitton, DL; Douglas, KMJ; Erb, Nicola; Norton, Y; Kitas, George.

In: Annals of the Rheumatic Diseases, Vol. 65, 01.05.2006, p. 585-589.

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@article{c4f9eeef720b487d9a005f84ad45e592,
title = "{"}Joining-the-dots{"} for systematic lupus erythematosus patients: personal perspectives of healthcare from a qualitative study",
abstract = "Objectives: To examine the perceptions of patients with systemic lupus erythematosus (SLE) about their health care provision in the United Kingdom. Methods: Semistructured interviews were conducted with 10 women aged 26 to 68 years who were diagnosed with SLE one to 12 years earlier. Interviews were audio recorded, transcribed verbatim, and analysed using interpretative phenomenological analysis to organise the themes of importance to participants. Results: Four themes emerged: diagnostic difficulties; understanding; communication; and integrated health care. Before diagnosis there was concern to appear legitimately ill and to have a label for the condition. After diagnosis participants still encountered health care professionals who were poorly informed about SLE. Family, friends, and employers did not understand the fluctuating nature of SLE, which often led to isolation. Participants felt that even health care professionals who specialised in SLE could not fully understand the psychosocial impact of the condition, and therefore did not provide information to meet those needs. Participants did not know which of the many health care professionals they had contact with to approach about their concerns. Lack of communication at an interdisciplinary level left them feeling that nobody was {"}joining the dots'' for their health care. Conclusions: Patients with SLE do not feel understood by health care providers or people close to them. Support from trained volunteers with SLE, as available at the open access lupus clinic in Dudley ( West Midlands, UK), would ensure more adequate information from someone with personal experience. Such services may improve communication and help minimise SLE patients' isolation.",
author = "ED Hale and Gareth Treharne and Antonia Lyons and S Mole and DL Mitton and KMJ Douglas and Nicola Erb and Y Norton and George Kitas",
year = "2006",
month = may
day = "1",
doi = "10.1136/ard.2005.037077",
language = "English",
volume = "65",
pages = "585--589",
journal = "Annals of the Rheumatic Diseases",
issn = "0003-4967",
publisher = "BMJ Publishing Group",

}

RIS

TY - JOUR

T1 - "Joining-the-dots" for systematic lupus erythematosus patients: personal perspectives of healthcare from a qualitative study

AU - Hale, ED

AU - Treharne, Gareth

AU - Lyons, Antonia

AU - Mole, S

AU - Mitton, DL

AU - Douglas, KMJ

AU - Erb, Nicola

AU - Norton, Y

AU - Kitas, George

PY - 2006/5/1

Y1 - 2006/5/1

N2 - Objectives: To examine the perceptions of patients with systemic lupus erythematosus (SLE) about their health care provision in the United Kingdom. Methods: Semistructured interviews were conducted with 10 women aged 26 to 68 years who were diagnosed with SLE one to 12 years earlier. Interviews were audio recorded, transcribed verbatim, and analysed using interpretative phenomenological analysis to organise the themes of importance to participants. Results: Four themes emerged: diagnostic difficulties; understanding; communication; and integrated health care. Before diagnosis there was concern to appear legitimately ill and to have a label for the condition. After diagnosis participants still encountered health care professionals who were poorly informed about SLE. Family, friends, and employers did not understand the fluctuating nature of SLE, which often led to isolation. Participants felt that even health care professionals who specialised in SLE could not fully understand the psychosocial impact of the condition, and therefore did not provide information to meet those needs. Participants did not know which of the many health care professionals they had contact with to approach about their concerns. Lack of communication at an interdisciplinary level left them feeling that nobody was "joining the dots'' for their health care. Conclusions: Patients with SLE do not feel understood by health care providers or people close to them. Support from trained volunteers with SLE, as available at the open access lupus clinic in Dudley ( West Midlands, UK), would ensure more adequate information from someone with personal experience. Such services may improve communication and help minimise SLE patients' isolation.

AB - Objectives: To examine the perceptions of patients with systemic lupus erythematosus (SLE) about their health care provision in the United Kingdom. Methods: Semistructured interviews were conducted with 10 women aged 26 to 68 years who were diagnosed with SLE one to 12 years earlier. Interviews were audio recorded, transcribed verbatim, and analysed using interpretative phenomenological analysis to organise the themes of importance to participants. Results: Four themes emerged: diagnostic difficulties; understanding; communication; and integrated health care. Before diagnosis there was concern to appear legitimately ill and to have a label for the condition. After diagnosis participants still encountered health care professionals who were poorly informed about SLE. Family, friends, and employers did not understand the fluctuating nature of SLE, which often led to isolation. Participants felt that even health care professionals who specialised in SLE could not fully understand the psychosocial impact of the condition, and therefore did not provide information to meet those needs. Participants did not know which of the many health care professionals they had contact with to approach about their concerns. Lack of communication at an interdisciplinary level left them feeling that nobody was "joining the dots'' for their health care. Conclusions: Patients with SLE do not feel understood by health care providers or people close to them. Support from trained volunteers with SLE, as available at the open access lupus clinic in Dudley ( West Midlands, UK), would ensure more adequate information from someone with personal experience. Such services may improve communication and help minimise SLE patients' isolation.

UR - http://www.scopus.com/inward/record.url?scp=33646252488&partnerID=8YFLogxK

U2 - 10.1136/ard.2005.037077

DO - 10.1136/ard.2005.037077

M3 - Article

C2 - 16219711

VL - 65

SP - 585

EP - 589

JO - Annals of the Rheumatic Diseases

JF - Annals of the Rheumatic Diseases

SN - 0003-4967

ER -