One of the Mesothelioma UK and Lung Cancer Nursing UK 2020 research grants awarded to Dr Matt Johnson, Macmillan Lead Cancer Nurse, based at Royal Brompton and Harefield Hospitals, has been investigating the experience of people who have been living with pleural mesothelioma for three years or more.
Dr Johnson is now looking to talk to patients and carers to gain an insight into their experiences.
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 primary carer
- Explore the long-term emotional impact of living with and 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 primary 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.
Patients and carers needed to take part in the study
The research team has now completed the initial interviews with people diagnosed with mesothelioma and their main carer. He is now looking for people to join two online focus groups being held in early November. He is aiming to have around five participants in each group.
Wednesday 3rd November 2 – 3:30pm. Carers of people who have lived with pleural mesothelioma for three or more years. Online meeting (via Google Meet)
Wednesday 10th November 2 – 3:30pm. People who have lived with pleural mesothelioma for three or more years. Online meeting (via Google Meet)
Participants should be:
- aged over 18 years
- diagnosed with pleural mesothelioma three or more years or a significant informal carer to a person diagnosed with pleural mesothelioma three or more years
- able to communicate fluently in verbal English
- preference will be given to people not previously interviewed as part of the study
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 firstname.lastname@example.org