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“I have lost in every facet of my life”: the hidden burden of severe asthma

Juliet M. Foster, Vanessa M. McDonald, Michael Guo, Helen K. Reddel
European Respiratory Journal 2017 50: 1700765; DOI: 10.1183/13993003.00765-2017
Juliet M. Foster
1Clinical Management Group, Woolcock Institute of Medical Research, University of Sydney, Sydney, Australia
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  • For correspondence: j.m.foster@woolcock.org.au
Vanessa M. McDonald
2National Health and Medical Research Council Centre for Research Excellence in Severe Asthma, Newcastle, Australia
3Centre for Healthy Lungs and Hunter Medical Research Institute, University of Newcastle, Newcastle, Australia
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Michael Guo
4AustralAsian Severe Asthma Network, Woolcock Institute of Medical Research, University of Sydney, Sydney, Australia
5Cyclomedica Australia Pty Ltd, Kingsgrove, Australia
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Helen K. Reddel
1Clinical Management Group, Woolcock Institute of Medical Research, University of Sydney, Sydney, Australia
2National Health and Medical Research Council Centre for Research Excellence in Severe Asthma, Newcastle, Australia
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Abstract

People with severe asthma are thought to face a sizeable daily disease burden. This study aimed to explore the little-known life experiences of people living with severe asthma.

Adults with severe asthma were invited for telephone interview. Semistructured interviews were conducted until no new themes emerged. The 25 interviews were recorded, transcribed and analysed thematically.

Four themes emerged. 1) “The body as a hindrance”: severe asthma placed broad limits on life from daily chores to career, relationships and family life that left interviewees feeling emotionally distressed. 2) “Burden of treatment”: participants mostly accepted the need to take treatment, but were particularly concerned about side-effects of oral corticosteroids. 3) “Alone with asthma”: interviewees felt misunderstood and alone in their experience of breathlessness and frightening exacerbations; practical and emotional support needs were often lacking and the emotional distress of severe asthma was amplified in those with little support. 4) “Striving to adapt”: patients used both positive strategies (acquiring self-management skills) and less positive strategies (avoidance of physical exertion) in the process of adjustment to living with severe asthma.

Severe asthma imposes long-term, debilitating burdens and should be considered differently to milder disease. There is an urgent need to improve practical and emotional support services for patients and their carers.

Abstract

Severe asthma imposes long-term, debilitating burdens requiring additional support services for patients and carers http://ow.ly/grpE30db5FR

Footnotes

  • This article has supplementary material available from erj.ersjournals.com

  • Support statement: Funding for this study was provided by Asthma Australia, the national consumer organisation for people with asthma. Asthma Australia had no role in the design, conduct, analysis or interpretation of the study, nor did they see the manuscript before submission. Funding information for this article has been deposited with the Crossref Funder Registry.

  • Conflict of interest: Disclosures can be found alongside this article at erj.ersjournals.com

  • Received April 12, 2017.
  • Accepted June 21, 2017.
  • Copyright ©ERS 2017
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“I have lost in every facet of my life”: the hidden burden of severe asthma
Juliet M. Foster, Vanessa M. McDonald, Michael Guo, Helen K. Reddel
European Respiratory Journal Sep 2017, 50 (3) 1700765; DOI: 10.1183/13993003.00765-2017

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“I have lost in every facet of my life”: the hidden burden of severe asthma
Juliet M. Foster, Vanessa M. McDonald, Michael Guo, Helen K. Reddel
European Respiratory Journal Sep 2017, 50 (3) 1700765; DOI: 10.1183/13993003.00765-2017
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