Gender and the experiences of living with mesothelioma: A thematic analysis

Our plain-English summary of Gender and the experiences of living with mesothelioma: A thematic analysis, by S. Ejegi-Memeh, S. Robertson, B. Taylor, et al (European Journal of Oncology Nursing, 2021).

The study

• Authors: S. Ejegi-Memeh, S. Robertson, B. Taylor, L. Darlison, A. Tod
• Journal: European Journal of Oncology Nursing
• Published: 2021;52:101966
• Cited by: 8 articles, as counted by NIH iCite
• Read it: PubMed · Publisher

Abstract

Purpose: Mesothelioma is a terminal cancer caused by exposure to asbestos. As a cancer with a higher rate in men than women, women's experiences of living with mesothelioma are often underexplored. Furthermore, men's experiences are often taken for granted and therefore have remained underexplored. This paper considers men's and women's experiences across the mesothelioma pathway.

Methods: This qualitative study incorporated semi-structured interviews with 13 men and 11 women living with mesothelioma. Telephone interviews took place between July and December 2019, and were audio recorded, transcribed and anonymised. Thematic analysis was used to analyse the data.

Results: Three themes were developed in relation to the gendered experience of mesothelioma: familial responsibility and social perceptions; support preferences; and treatment and trials. Analysis suggests that men and women's sense of familial responsibility varied. Differences in priorities and motivations influenced approaches to seeking support, compensation and, making decisions around treatments and clinical trials.

Conclusions: The current study reports on how gender can influence the experience of living with mesothelioma. The findings indicate how the patients' role in their families and society can more broadly influence their experiences, choices and preferences. Nurses caring for mesothelioma patients need high quality research on which to base their practice. Recognition and an understanding of the underlyingfactors influencing patients' decision-making will enable nurses and other professionals to support their patients better.

Copyright © 2021 The Author(s). Published by Elsevier Ltd.. All rights reserved.

In plain English

This qualitative study looked at whether men and women experience living with mesothelioma differently. The researchers interviewed 13 men and 11 women with mesothelioma, most with pleural and some with peritoneal disease. Participants were recruited through Mesothelioma UK and asbestos support groups and interviewed by telephone between July and December 2019. The researchers then analysed the interviews for recurring themes. Several women described focusing on household tasks and on protecting their families' emotions. Several men stressed making sure their families would be financially secure, and they often gave this as a reason for seeking compensation. Talk of financial obligation was largely absent from most women's accounts. Some women were put off seeking compensation because it seemed confrontational. No woman interviewed had worked in an asbestos industry. Women tended to value emotional support, while men valued practical, informational or non-verbal support. When describing treatment decisions, men often used more decisive language and women took a more tentative approach. The authors concluded that cultural constructions of gender remain. They noted that the sample was small and that family carers' perspectives were not included.

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 telephone interviews, analysed with thematic analysis
• Who was studied: 24 people living with mesothelioma (11 women, 13 men), recruited by convenience sampling through Mesothelioma UK and Asbestos Support Groups, interviewed between July and December 2019 from across England and Scotland; ages 31 to 81; three women and two men had peritoneal mesothelioma, the rest pleural mesothelioma. Family members took part in four of the 24 interviews, but only the patients' data were analysed
• Exposure: Not a study of exposure; no fiber types or doses reported. The authors note that only men in the sample had prolonged occupational asbestos exposure, and no women had worked in asbestos industries
• Main results:
  • For several of the women interviewed, their role after diagnosis focused on domestic tasks, and several women showed a sense of responsibility for the emotions of their families
  • Among the men, a strong sense of financial obligation to family was often given as a motive for seeking compensation
  • For some women, the perceived confrontational nature of seeking compensation acted as a deterrent
  • Participants who had worked in an asbestos-related industry appeared to pursue a claim more willingly. For those in non-asbestos industries, advice from asbestos support groups and health professionals was key to learning about compensation and benefit rights
  • Women appeared to value emotional support most; for men, valued support from partners was often practical in nature
  • Obtaining information and learning new things motivated several of the men to attend support groups; women attended primarily to discuss experiences
  • When describing treatment decisions, men's accounts used more decisive language and women's accounts were more tentative
  • For several men, trial participation involved some loss of control because of randomisation and the possibility of receiving a placebo
  • No gender differences were identified in relationships with health care professionals and systems
• The authors' conclusion: The authors concluded that gendered differences may exist in the mesothelioma patient experience and that their study provides evidence that cultural constructions of gender remain
• Limitations the authors state:
  • The sample was small
  • The perspectives of family carers were not included
  • Greater diversity in participants' gender of partner and ethnic origin would have been advantageous

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, Clinical Trial.

Related studies

• Living with mesothelioma: A qualitative study of the experiences of male military veterans in the UK — S. Ejegi-Memeh, L. Darlison, et al. (2021)
• Malignant pleural mesothelioma patients' experience by gender: findings from a cross-sectional UK-national questionnaire — M. Senek, S. Robertson, et al. (2022)
• The psychosocial impact of living with mesothelioma: Experiences and needs of patients and their carers regarding supportive care — A. Prusak, J.M. van der Zwan, et al. (2021)
• 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)
• Living with mesothelioma: a systematic review of mental health and well-being impacts and interventions for patients and their informal carers — V. Sherborne, S. Ejegi-Memeh, et al. (2024)
• Communication of a mesothelioma diagnosis: developing recommendations to improve the patient experience — B.H. Taylor, C. Warnock, et al. (2019)

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