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What impact does written information about fatigue have on patients with autoimmune rheumatic diseases? Findings from a qualitative study

Lookup NU author(s): Ruth Hart, Professor Fai NgORCiD, Emerita Professor Julia Newton, Dr Katie Hackett, Dr Richard Lee, Benjamin Thompson

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This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


Abstract

Objectives Although fatigue is a common symptom for people with rheumatic diseases, limited support is available. This study explored the impact of written information about fatigue, focusing on a booklet, Fatigue and arthritis.Methods Thirteen patients with rheumatic disease and fatigue were recruited purposively from a rheumatology outpatient service. They were interviewed before and after receiving the fatigue booklet. Two patients, plus six professionals with relevant interests, participated in a focus group. Transcripts were analysed thematically and a descriptive summary was produced.Results Interviewees consistently reported that fatigue made life more challenging, and none had previously received any support to manage it. Reflecting on the booklet, most said that it had made a difference to how they thought about fatigue, and that this had been valuable. Around half also said that it had affected, or would affect, how they managed fatigue. No one reported any impact on fatigue itself. Comments from interviewees and focus group members alike suggested that the research process may have contributed to the changes in thought and behaviour reported. Its key contributions appear to have been: clarifying the booklet's relevance; prompting reflection on current management; and introducing accountability.Conclusions This study indicated that written information can make a difference to how people think about fatigue and may also prompt behaviour change. However, context appeared to be important: it seems likely that the research process played a part and that the impact of the booklet may have been less if read in isolation. Aspects of the research appearing to facilitate impact could be integrated into routine care, providing a pragmatic (relatively low-cost) response to an unmet need.


Publication metadata

Author(s): Hart RI, Ng WF, Newton JL, Hackett KL, Lee RP, Thompson B

Publication type: Article

Publication status: Published

Journal: Musculoskeletal Care

Year: 2017

Volume: 15

Issue: 3

Pages: 230-237

Print publication date: 01/09/2017

Online publication date: 18/11/2016

Acceptance date: 10/08/2016

Date deposited: 18/11/2016

ISSN (print): 1478-2189

ISSN (electronic): 1557-0681

Publisher: Wiley

URL: http://dx.doi.org/10.1002/msc.1164

DOI: 10.1002/msc.1164


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Funding

Funder referenceFunder name
20534
Arthritis Research UK

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