BTOG 2021 | Findings of the Gendered Experiences of Mesothelioma Study

So, we decided to go with the gendered experiences of mesothelioma study because from speaking to solicitors, so legal professionals, healthcare professionals, and also patients, we sort of saw that there were differences in men and women’s experiences that weren’t really being reflected in the literature, but we wanted to kind of test out those assumptions and find out if that was really happening. So, we really wanted to make a contribution to the literature around the gendered experiences. And for that reason, we included both men and women, because we wanted to be able to make a bit of a comparison between those experiences and see where the differences and also the similarities were.

So one of the key findings around diagnosis, because what we found was quite a few women, and also some of the younger men that we interviewed had never heard of mesothelioma. They couldn’t say it, they never heard of it. They never heard of asbestos-related diseases or anything like that. Pretty much like me before I started research in this area. I didn’t know about the dangers of asbestos.

So, two key things about that, about that lack of knowledge before diagnosis, is that it takes that person a lot longer to understand their diagnosis, and we saw this in the quantitative data, in that when women were asked, “Did you feel that your diagnosis was given in an understandable way?” More women said no, actually, because they needed more time, they needed more kind of background to it. It’s like, “Hang on a minute. So, somebody was working in that environment with this material that I’ve never heard of, and now I’ve got this terminal cancer?”

So, I think more time to kind of process that diagnosis and the information that is required might be different to some of the men who we interviewed who had worked in environments where there was a lot of asbestos, they had friends who died from asbestos-related diseases. So, there was a sense of inevitability. It was like, “Finally, it’s got me.” That’s a quote from the military study that we did. Somebody said that when they got diagnosed, it was like, “Okay, well it’s finally got me.” That sense of inevitability.

And so, their needs, if you like, of diagnosis are also different, you know, because they’re thinking, “Right, I’ve got this, I’m going to die.” Whereas treatment has moved on and the care that’s provided has moved on. We’ve got specialist nurses now, which are dedicated to mesothelioma and they know where all the treatment centers are, where the best treatment is in the country and where the best trials are, y’know. So, things have moved on, so those men who really are thinking, “This is it,” when they find out they’ve got mesothelioma, also need support, but just in a different way to somebody who might never have heard of mesothelioma.