Living with mesothelioma: A qualitative study of the experiences of male military veterans in the UK

Our plain-English summary of Living with mesothelioma: A qualitative study of the experiences of male military veterans in the UK, by S. Ejegi-Memeh, L. Darlison, A. Moylan, et al (European Journal of Oncology Nursing, 2021).

The study

• Authors: S. Ejegi-Memeh, L. Darlison, A. Moylan, A. Tod, V. Sherborne, C. Warnock, B.H. Taylor
• Journal: European Journal of Oncology Nursing
• Published: 2021;50:101889
• Cited by: 4 articles, as counted by NIH iCite
• Read it: PubMed · Publisher

Abstract

Purpose: The UK has the highest incidence of mesothelioma in the world. Evidence in the United States suggests that mesothelioma may disproportionately affect military veterans. However, there has been no investigation of the experience of UK veterans living with mesothelioma. The Military Mesothelioma Experience Study (MiMES) aimed to understand the experience and health/support needs of British Armed Forces personnel/veterans with mesothelioma.

Methods: Semi-structured interviews were conducted with 13 veterans living with mesothelioma, and nine family members of veterans living with mesothelioma. Participants were recruited via charities and asbestos support groups. Data were analysed using thematic analysis.

Results: Participants' experiences are presented using three themes, i) exposure to asbestos and awareness of asbestos related diseases, ii) using military strategies to cope with mesothelioma and iii) preferences for information and support. MiMES indicates that the nature and range of UK military veterans' asbestos exposure is varied and not limited to high risk occupations. Participants' knowledge of asbestos and experience of mesothelioma influenced their experiences of diagnosis. Participants had coping strategies influenced by their military experiences. Assistance in navigating health and military systems was considered beneficial, especially if support was provided by professionals with knowledge or experience of the military. Attributes which may inhibit veterans from seeking professional support are discussed.

Conclusion: MiMES provides insight into how UK military veterans experience and cope with mesothelioma. Key implications focus on the role that Mesothelioma Nurse Specialists, Asbestos Support Groups and veterans groups play in providing acceptable support for UK veterans.

Copyright © 2020 The Author(s). Published by Elsevier Ltd.. All rights reserved.

In plain English

This qualitative interview study, the Military Mesothelioma Experience Study (MiMES), looked at how UK military veterans lived with mesothelioma. Between December 2018 and September 2019, researchers interviewed 13 veterans with mesothelioma, all men, from the Navy, Army and Royal Air Force, and nine family members of veterans. Participants were recruited through the charity Mesothelioma UK and Asbestos Support Groups. Suspected sources of asbestos exposure varied. Several veterans had not worked directly with asbestos but remembered living or working in buildings that contained it, in the UK and abroad. Those who served in Northern Ireland thought bombed buildings could have been a source. For two veterans the suspected source was civilian work, and for one it was unknown. Many reacted to diagnosis with resignation rather than shock. Nearly all described an action-focused way of coping that they linked to military service, and pride in independence kept some from seeking support. Participants found the NHS harder to navigate than military systems and described mesothelioma nurse specialists as essential. The authors concluded that veterans with mesothelioma have specific challenges and care needs. They noted the small sample and that no women veterans were recruited.

We wrote this plain-English summary from the full article with the help of AI, and a second AI model checked each sentence against the article. It is not the authors' wording; the abstract and the article are their own account.

What the study did and found

• Design: Qualitative study using semi-structured interviews, analysed with thematic analysis
• Who was studied: 13 UK military veterans living with mesothelioma, all men, aged 61 to 89, who had served in the Navy, Army or RAF. Also 9 family members of veterans with mesothelioma, aged 36 to 74, including wives, a daughter, a son, a widow and widowers. All were recruited via Mesothelioma UK and Asbestos Support Groups and interviewed between December 2018 and September 2019. Time since diagnosis ranged from three weeks to four years.
• Exposure: Suspected asbestos exposure as recalled by participants. Sources included removing asbestos from ships, insulating ships, military accommodation, Nissen huts, rotor brakes in planes, living and working in bombed or disused buildings, and, for two veterans, civilian work. No fiber types or doses were reported.
• Main results:
  • Suspected sources of exposure varied widely across the veterans. Table 3 lists military service as the suspected source for 10 of the 13 veterans, civilian work for 2, and an unknown source for 1.
  • Several veterans had not worked directly with asbestos but recalled living and working in environments where it was present. Veterans who served in Northern Ireland thought bombed buildings could be a source.
  • Most participants had not known the risk of asbestos at the time. For many, the reaction to diagnosis was resignation more than shock.
  • An action-focused, problem-solving response to diagnosis appeared in nearly all accounts, and participants linked it to their time in the Armed Forces.
  • A desire to be independent kept some participants from seeking support.
  • Participants described the NHS as less efficient and harder to navigate than military systems, though several veterans were frustrated by the limited support from military organisations.
  • Many participants described Mesothelioma Nurse Specialists as essential in helping veterans get timely care and support.
  • All participants preferred clear and honest delivery of information.
• The authors' conclusion: The authors concluded that veterans with mesothelioma face specific challenges and care needs, and that these may also apply to veterans with other cancers.
• Limitations the authors state:
  • The sample was small because mesothelioma is relatively rare.
  • No women veterans were recruited. The limitations section says no women were recruited at all, but women family members were interviewed (Table 2), so this applies to the veteran participants.
  • All interviews were done by female researchers without a military background, giving an 'outsider' perspective. The authors suggested this may also have helped data collection.

Topics

The National Library of Medicine indexes this study under subjects our site covers: Mesothelioma.

Medical terms in this study, explained in our Lexicon: Mesothelioma, Asbestos Exposure.

Related studies

• Association of Agricultural, Occupational, and Military Inhalants With Autoantibodies and Disease Features in US Veterans With Rheumatoid Arthritis — A.V. Ebel, G. Lutt, et al. (2021)
• A principal factor analysis to characterize agricultural exposures among Nebraska veterans — L. Weissenburger-Moser, J. Meza, et al. (2017)
• Asbestos plaques in a typical Veteran's hospital population — J.A. Miller, J.V. Zurlo (1996)
• Living beyond expectations: a qualitative study into the experience of long-term survivors with pleural mesothelioma and their carers — M. Johnson, P. Allmark, et al. (2022)
• Asbestos exposure and mesothelioma mortality among atomic veterans — J.E. Till, H.L. Beck, et al. (2022)
• Gender and the experiences of living with mesothelioma: A thematic analysis — S. Ejegi-Memeh, S. Robertson, et al. (2021)

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