New study into the experience of living with mesothelioma for three or more years

One of the Mesothelioma UK and Lung Cancer Nursing UK 2020 research grants has been awarded to Dr Matthew Johnson, Macmillan Lead Cancer Nurse, based at Royal Brompton and Harefield Hospitals, who will be investigating the experience of people and their main carer who have been living with mesothelioma for three years or more. Existing studies have focused on people who have been diagnosed recently with mesothelioma, but there have been no studies that explore the experience of those who live with the diagnosis over a longer period.

The study aims to:

  • Gain detailed insight into the practical impact of living with, undergoing treatment for, and coping with symptoms of people with a long-term diagnosis of mesothelioma and their main carer.
  • Explore the long-term emotional impact of living with or caring for someone with mesothelioma.
  • Identify helpful and unhelpful communication during the initial diagnosis that has impacted on subsequent coping with the condition in the longer term.
  • Make recommendations on the support needs of people living with mesothelioma and their main carers.

It is hoped that the study can inform the care and support offered to people affected by mesothelioma and give valuable insight into the experiences of those whose survival proves much better than expected.

People diagnosed with mesothelioma and their carers needed to take part in the study
We are looking for people diagnosed with mesothelioma, along with their main carer, to take part in the study. This will involve being interviewed via video call or telephone call. Interviews can either be both person diagnosed with mesothelioma and carer together, or if you prefer, these can be arranged separately. If you do not have someone you identify as your main carer, you can still join the study on your own. Interviews will be undertaken by an experienced qualitative researcher and are expected to last about 60 minutes.

Participants should be:

  • diagnosed with pleural mesothelioma three or more years prior entering the study or
  • significant informal carer (wife, husband, daughter, son, or close friend) to the person diagnosed with pleural mesothelioma
  • aged over 18 years
  • able to verbally communicate fluently in English
  • able to give informed consent to participation

If you meet the criteria and would like to find out more about taking part in this study, please call the Mesothelioma UK information line on 0800 169 2409 or email

March 30, 2021

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