The lived experience of patients with pleural mesothelioma

Our plain-English summary of The lived experience of patients with pleural mesothelioma, by N. Hughes, A. Arber (International Journal of Palliative Nursing, 2008).

The study

• Authors: N. Hughes, A. Arber
• Journal: International Journal of Palliative Nursing
• Published: 2008;14(2):66-71
• Type of article: Review
• Cited by: 37 articles, as counted by NIH iCite
• Read it: PubMed · Publisher

Abstract

This paper reports on a research study of five patients diagnosed with mesothelioma. The study used a phenomenological approach to explore patients' lived experience using in-depth interviews. The findings identify that patients have many unmet psychosocial and emotional needs and that there was a lack of information provided to patients about specialist supportive and palliative care services. A number of the patients found specialist supportive care by chance rather than by referral. In addition, patients were involved in complex medico-legal matters in relation to asbestos exposure, and this was an additional burden for them and their spouse or carer. A feeling of social isolation was also reported and a number of patients would welcome the opportunity to meet with other people in the same situation as themselves. In conclusion, there is a lack of attention to the emotional needs of this group of patients, which means that supportive care resources are not being accessed in a timely and flexible manner.

In plain English

This small qualitative study explored what living with mesothelioma meant to patients. The authors interviewed five patients, four men and one woman aged 54 to 76 and all at an advanced stage, who came to a local Macmillan nursing service in the UK. A partner or spouse was present at each interview. Patients and carers described frustration at losing work and normal activities. A number of patients said they felt socially isolated, and many patients wanted to share their experiences with others who had the same illness. Four patients found specialist palliative care by chance; the only professional referral was for pain management. Patients and carers differed in how they viewed claiming compensation, and only one patient was able to establish a link between occupational exposure and his condition. The authors concluded that support services were not communicated clearly enough, so patients and carers had to find them themselves, and that carers should be assessed in their own right. They noted that the sample was small and that participants could not check the findings because of death and terminal illness.

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 interview study (hermeneutic phenomenology) using unstructured in-depth interviews, analysed with Colaizzi's procedural steps. The journal heading reads 'Review', but the article reports an original interview study.
• Who was studied: Five patients with mesothelioma (four male, one female, aged 54 to 76, all at an advanced stage), recruited over ten months from those using a local Macmillan nursing service. The study aimed to recruit eight. Interviews took place at home with a partner or spouse present. Calendar dates are not given.
• Exposure: Asbestos exposure was not studied as a measured exposure. No fiber types or jobs are reported for the participants. The authors state that only one patient could establish a link between occupational exposure and his condition.
• Main results:
  • Most patients said the interview was the first time they had told their story.
  • All patients and carers experienced frustration from the physical effects of the disease, in particular not being able to work and losing the sense of identity work brings.
  • A number of patients reported feeling socially isolated.
  • Many patients wanted to share their experiences with other people in the same situation.
  • Four of the five patients found specialist palliative care services by chance. The one direct referral was for pain management, not supportive care.
  • Patients and carers differed in how they viewed the compensation process. Many patients could not provide proof of exposure, which caused anger and distress for them and their families.
  • Patients said they may have been given information about available support but did not take it in because of shock and the amount of information given.
  • One carer described how her relationship with her husband had been affected, including the loss of sexual intimacy because of his breathlessness.
• The authors' conclusion: The authors concluded that the availability of support services was not communicated clearly enough to patients and carers, who had to find these services themselves. They also concluded that carers should be assessed in their own right, with time allocated to them separately from the patient.
• Limitations the authors state:
  • The sample was small, so how far the findings apply to others is limited.
  • Participants came from a specialist community cancer and palliative care centre, not a hospice or hospital setting.
  • Participants could not check the findings (respondent validation) because of death and terminal illness in the sample.

Topics

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

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

Related studies

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• Experiences of healthcare professionals with support for mesothelioma patients and their relatives: Identified gaps and improvements for care — A.R. Frissen, S. Burgers, et al. (2021)
• Asbestos fibre burden in the lungs of patients with mesothelioma who lived near asbestos-cement factories — P.G. Barbieri, D. Mirabelli, et al. (2012)
• Malignant peritoneal mesothelioma in a boar who lived in Calabria (Italy): Wild animal as sentinel system of human health — E. Colombino, S. Capella, et al. (2019)
• Asbestos Burden in Lungs of Subjects Deceased From Mesothelioma Who Lived in Proximity to an Asbestos Factory: A Topographic Post-Mortem SEM-EDS Study — S.D. Visonà, M. Untalan, et al. (2025)
• A survey of patient and caregiver experience with malignant pleural mesothelioma — A. Warby, H.M. Dhillon, et al. (2019)

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