RADIO Meso (Receiving a diagnosis of mesothelioma) is a research project, funded by Mesothelioma UK and being carried out by researchers at the University of Sheffield. The project aims to identify ways to improve the patient and family carer experience of receiving a diagnosis of mesothelioma.
At the end of the project, the team will develop evidence-based recommendations for practice. The researchers carried out a focus group at the Mesothelioma UK Patient and Carer Day in October 2017.
Patients and family carers were asked to recall their experience of receiving a mesothelioma diagnosis and to tell the team ‘what went well?’ and ‘what could have been better?’. With this in mind, the team then contemplated what the ‘ideal’ way to receive a diagnosis would be.
All responses have been incredibly valuable and, after collating them the researchers were able to identify key themes. To summarise some of these, patients and family carers said they valued: prior warning that it could be bad news, time to ask questions once the news has sunk in and a point of contact during this difficult time.
Alongside this, participants overwhelmingly drew attention to and praised the important role of health care professionals, especially clinical nurse specialists.
Challenges that repeatedly arose across patient and family carer stories included the long and winding road to reach a diagnosis and difficulty accessing good quality, reliable information and local support.
Examples of communication styles and words and phrases that were helpful and unhelpful were also identified.
The researchers are very much looking forward to discussing these in more detail with patients and carers over the coming months and are hoping to produce recommendations for consultation early in 2018.