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Invisible and intangible illness: a qualitative interview study of patients' experiences and understandings of conservatively managed end-stage kidney disease

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Invisible and intangible illness : a qualitative interview study of patients' experiences and understandings of conservatively managed end-stage kidney disease. / Bristowe, Katherine; Selman, Lucy E; Higginson, Irene J; Murtagh, Fliss E M.

In: Annals of Palliative Medicine, Vol. 8, No. 2, 01.04.2019, p. 121-129.

Research output: Contribution to journalArticle

Harvard

Bristowe, K, Selman, LE, Higginson, IJ & Murtagh, FEM 2019, 'Invisible and intangible illness: a qualitative interview study of patients' experiences and understandings of conservatively managed end-stage kidney disease', Annals of Palliative Medicine, vol. 8, no. 2, pp. 121-129. https://doi.org/10.21037/apm.2018.12.06

APA

Bristowe, K., Selman, L. E., Higginson, I. J., & Murtagh, F. E. M. (2019). Invisible and intangible illness: a qualitative interview study of patients' experiences and understandings of conservatively managed end-stage kidney disease. Annals of Palliative Medicine, 8(2), 121-129. https://doi.org/10.21037/apm.2018.12.06

Vancouver

Bristowe K, Selman LE, Higginson IJ, Murtagh FEM. Invisible and intangible illness: a qualitative interview study of patients' experiences and understandings of conservatively managed end-stage kidney disease. Annals of Palliative Medicine. 2019 Apr 1;8(2):121-129. https://doi.org/10.21037/apm.2018.12.06

Author

Bristowe, Katherine ; Selman, Lucy E ; Higginson, Irene J ; Murtagh, Fliss E M. / Invisible and intangible illness : a qualitative interview study of patients' experiences and understandings of conservatively managed end-stage kidney disease. In: Annals of Palliative Medicine. 2019 ; Vol. 8, No. 2. pp. 121-129.

Bibtex Download

@article{4e76d7787ec547eb9ec98558da2bbf1a,
title = "Invisible and intangible illness: a qualitative interview study of patients' experiences and understandings of conservatively managed end-stage kidney disease",
abstract = "BACKGROUND: Increasing numbers of older adults are living with kidney disease. For those with comorbidities, conservative management of end-stage kidney disease is a viable option: dialysis may afford limited or no survival benefit, and perceived burdens may outweigh benefits. Conservative management focuses on: maintaining remaining kidney function; symptom management; and quality of life. Common symptoms in conservatively managed kidney disease include: fatigue; anorexia; nausea and vomiting; pain and pruritis. Chronic disease is associated with biographical disruption and a loss of sense of self. Coping strategies are shaped by illness perceptions, but little is known of illness perceptions of people living with conservatively managed kidney disease. This study aimed to explore the experience, impact and understanding of conservatively managed end-stage kidney disease among older adults.METHODS: Secondary analysis of qualitative interviews analysed using thematic analysis. Twenty people with conservatively managed end-stage kidney disease were recruited from 3 UK renal units: median age was 82 (range, 69-95); 9 women, 11 men.RESULTS: Participants described the invisibility and intangibility of kidney disease, and challenges in attributing symptoms to the disease. They described a spectre-like presence, sapping their energy and holding them down. For some, it was hard to differentiate symptoms of the illness from characteristics of aging, resulting in challenges in illness attribution, and disconnectedness from the illness.CONCLUSIONS: Participants described challenges in attributing their symptoms to kidney disease which negatively impacted upon their wellbeing, and ability to accept an adjusted sense of self. Understanding these challenges is critical in the management conditions such as end-stage kidney disease where prognosis may be poor, and where an increase in symptom distress may suggest a marked deterioration in their condition, or a change in phase of illness. Clinical services need to recognize the illness experience (alongside more symptom led approaches), including the invisibility, intangibility, and disconnectedness, and address this through specific interventions focused on improving clinical assessment, communication and education, alongside peer and professional support.",
keywords = "Conservative care, End-stage kidney disease, Palliative care, Qualitative research",
author = "Katherine Bristowe and Selman, {Lucy E} and Higginson, {Irene J} and Murtagh, {Fliss E M}",
year = "2019",
month = apr,
day = "1",
doi = "10.21037/apm.2018.12.06",
language = "English",
volume = "8",
pages = "121--129",
journal = "Annals of Palliative Medicine",
issn = "2224-5820",
publisher = "AME Publishing Company",
number = "2",

}

RIS (suitable for import to EndNote) Download

TY - JOUR

T1 - Invisible and intangible illness

T2 - a qualitative interview study of patients' experiences and understandings of conservatively managed end-stage kidney disease

AU - Bristowe, Katherine

AU - Selman, Lucy E

AU - Higginson, Irene J

AU - Murtagh, Fliss E M

PY - 2019/4/1

Y1 - 2019/4/1

N2 - BACKGROUND: Increasing numbers of older adults are living with kidney disease. For those with comorbidities, conservative management of end-stage kidney disease is a viable option: dialysis may afford limited or no survival benefit, and perceived burdens may outweigh benefits. Conservative management focuses on: maintaining remaining kidney function; symptom management; and quality of life. Common symptoms in conservatively managed kidney disease include: fatigue; anorexia; nausea and vomiting; pain and pruritis. Chronic disease is associated with biographical disruption and a loss of sense of self. Coping strategies are shaped by illness perceptions, but little is known of illness perceptions of people living with conservatively managed kidney disease. This study aimed to explore the experience, impact and understanding of conservatively managed end-stage kidney disease among older adults.METHODS: Secondary analysis of qualitative interviews analysed using thematic analysis. Twenty people with conservatively managed end-stage kidney disease were recruited from 3 UK renal units: median age was 82 (range, 69-95); 9 women, 11 men.RESULTS: Participants described the invisibility and intangibility of kidney disease, and challenges in attributing symptoms to the disease. They described a spectre-like presence, sapping their energy and holding them down. For some, it was hard to differentiate symptoms of the illness from characteristics of aging, resulting in challenges in illness attribution, and disconnectedness from the illness.CONCLUSIONS: Participants described challenges in attributing their symptoms to kidney disease which negatively impacted upon their wellbeing, and ability to accept an adjusted sense of self. Understanding these challenges is critical in the management conditions such as end-stage kidney disease where prognosis may be poor, and where an increase in symptom distress may suggest a marked deterioration in their condition, or a change in phase of illness. Clinical services need to recognize the illness experience (alongside more symptom led approaches), including the invisibility, intangibility, and disconnectedness, and address this through specific interventions focused on improving clinical assessment, communication and education, alongside peer and professional support.

AB - BACKGROUND: Increasing numbers of older adults are living with kidney disease. For those with comorbidities, conservative management of end-stage kidney disease is a viable option: dialysis may afford limited or no survival benefit, and perceived burdens may outweigh benefits. Conservative management focuses on: maintaining remaining kidney function; symptom management; and quality of life. Common symptoms in conservatively managed kidney disease include: fatigue; anorexia; nausea and vomiting; pain and pruritis. Chronic disease is associated with biographical disruption and a loss of sense of self. Coping strategies are shaped by illness perceptions, but little is known of illness perceptions of people living with conservatively managed kidney disease. This study aimed to explore the experience, impact and understanding of conservatively managed end-stage kidney disease among older adults.METHODS: Secondary analysis of qualitative interviews analysed using thematic analysis. Twenty people with conservatively managed end-stage kidney disease were recruited from 3 UK renal units: median age was 82 (range, 69-95); 9 women, 11 men.RESULTS: Participants described the invisibility and intangibility of kidney disease, and challenges in attributing symptoms to the disease. They described a spectre-like presence, sapping their energy and holding them down. For some, it was hard to differentiate symptoms of the illness from characteristics of aging, resulting in challenges in illness attribution, and disconnectedness from the illness.CONCLUSIONS: Participants described challenges in attributing their symptoms to kidney disease which negatively impacted upon their wellbeing, and ability to accept an adjusted sense of self. Understanding these challenges is critical in the management conditions such as end-stage kidney disease where prognosis may be poor, and where an increase in symptom distress may suggest a marked deterioration in their condition, or a change in phase of illness. Clinical services need to recognize the illness experience (alongside more symptom led approaches), including the invisibility, intangibility, and disconnectedness, and address this through specific interventions focused on improving clinical assessment, communication and education, alongside peer and professional support.

KW - Conservative care

KW - End-stage kidney disease

KW - Palliative care

KW - Qualitative research

UR - http://www.scopus.com/inward/record.url?scp=85061121926&partnerID=8YFLogxK

U2 - 10.21037/apm.2018.12.06

DO - 10.21037/apm.2018.12.06

M3 - Article

C2 - 30691280

VL - 8

SP - 121

EP - 129

JO - Annals of Palliative Medicine

JF - Annals of Palliative Medicine

SN - 2224-5820

IS - 2

ER -

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