Mesothelioma UK’s Gendered Experience of Mesothelioma (GEMS) report reveals striking differences between men’s and women’s experience of mesothelioma
Mesothelioma UK and Sheffield University have just last week published their Gendered Experience of Mesothelioma study. The study, launched in 2019, aimed to gain further insight into the experience and health/support needs of men and women living with mesothelioma. The similarities and differences between the experiences of men and women were examined with a view to identifying how best support those living with mesothelioma.
The report made eight key findings, namely:-
- the high risk occupation for men differed from the high risk occupation for women;
- that women of all ages and younger men lacked awareness of the dangers of asbestos exposure;
- that there were differences between the way men and women experienced the explanations and support provided at the time of their mesothelioma diagnosis;
- the differences between women and men’s roles within the family and society influenced how they coped with their diagnosis;
- there were no significant gender differences identified in treatment and care experience;
- that men and women had different ways of communicating with the professionals along their mesothelioma pathway;
- there were some differences between men and women in their preference for the type of support they desired;
- that family and social expectations of men and women influenced their willingness to pursue civil compensation.
The background to the study
Mesothelioma is an asbestos related cancer, and the UK has the highest incidence of mesothelioma in the world – a legacy of considerable asbestos imports in the 20th century.
The need for this report is demonstrated by the rates of mesothelioma in women having almost doubled since the early 1990s, with the rates for men increasing by around 50% over the same period.
There is some evidence to suggest that women may be more susceptible to developing mesothelioma as there is a steeper dose response curve in relation to asbestos exposure. However, women have also been shown to have a higher survival rate after a diagnosis of mesothelioma whereas in men mesothelioma is often more invasive and more metastasizing.
What the study has found
It is perhaps not surprising that the high risk occupations for men differed from those for women. Men were most frequently exposed to asbestos in construction related occupations such as builders, carpenters, electricians, engineers and plumbers where there was direct handling of asbestos.
For women exposure at work was most frequently linked to the working environment in general rather than direct handling of asbestos in occupations such as admin/clerical, factory, health, sales and teaching.
Information and support needed
All who support men and women following a mesothelioma diagnosis will welcome this report and the recommendations it makes. The research illustrates that when a full occupational history is taken from women there may well be exposure to asbestos through their own working environment – their exposure is not necessarily para-occupational as was originally thought.
Greater awareness of compensation cases that have succeeded for people who have never worked directly with asbestos is therefore helpful in raising awareness when women may not be aware their occupation was a risk factor. Furthermore, social awareness of where asbestos can be found is also recommended, as it will help to ensure that future generations are not inadvertently exposed to asbestos as a result of it being present in their workplace and inadequately managed.
Over the past few years in particular, treatment options for mesothelioma have dramatically increased. Information provided by charities such as Mesothelioma UK and by support groups is vital in reassuring patients that the care and treatment options have improved and widened dramatically.
The research also examined the support that is available following a diagnosis. Fewer women taking part in the study reported having a next of kin/or spouse/partner than men. The study recommended that support agencies should be more aware of this and address it within the package of care and support offered. Greater time for people who have a lower awareness of the dangers of exposure to asbestos may be necessary to understand their diagnosis and to come to terms with it. It is important that the diagnosis given in an understandable way and that healthcare professionals should be sensitive towards the lack of knowledge about the dangers of asbestos when providing a mesothelioma diagnosis.
The differing roles of men and women within the family and society influenced how they cope with a diagnosis of mesothelioma also. Help with traditional caregiving roles more often fulfilled by women and practical service providing roles more often fulfilled by men allowed them to continue fulfilling these roles which helped both men and women maintain their sense of identity.
Tailoring the support and information given can help people cope better so for example the age, occupation and living circumstances greatly influence how participants in the study coped with their diagnosis of mesothelioma.
Treatment and care
The study found no significant gender differences in treatment and care experiences following diagnosis. This suggests that treatment and care is patient focussed and tailored to meet individual needs.
The study also found men and women had different ways of communicating with professionals along their mesothelioma pathway. Patients’ needs, and wishes, do change over time and checking to make sure wishes have not changed is seen to be important.
Men and women did have slightly different preferences for the types of support they desired. Women more often expressed a preference for support where they have the opportunity to talk, be listened to and feel heard. However, men preferred practical support like the provisions of information, having meals cooked and having help with domestic tasks.
The move towards online communications since COVID-19 raised the possibility of additional opportunities to provide and evaluate support being provided in new and creative ways like discussion boards, smaller groups, single-sex groups and breakout rooms.
There was a real disparity between the levels of men and women who were intending to pursue civil compensation. 80% of men were intending to seek legal advice versus 60% of women. However there was a further disparity between those who actually sought advice, with 75% of men seeking advice with the first three years and only 51% of women.
This disparity, according to the report, may potentially be linked to men feeling a greater sense of responsibility for the financial security of their family. In addition, the fact that men were likely to have worked in high risk occupations was relevant. It does, of course, emphasize the importance of taking a full statement and appreciating the possibility of less obvious occupational exposure for women rather than simply assuming the exposure was para-occupational.
The study recommended that support groups, specialists and solicitors should explore the reasons why individuals are not seeking compensation and provide reassurance about the fear of the cost of pursuing compensation and the process being perceived as acrimonious. It was felt that the provision of case studies detailing the process and successes of civil claims could assist in this regard. Research as to why people choose to pursue compensation or not was also recommended.
We welcome this important research into the gender differences in the experience of mesothelioma diagnosis, treatment and support, and an individual’s experience of exposure to asbestos.
What seems clear is that greater awareness provides very much needed reassurance to individuals facing what they assume to be a bleak diagnosis with very limited treatment options available, and limited possibility of recovering civil compensation.
Even though the types of treatment available has improved in the last few years, much of this treatment is not available on the NHS other than through a clinical trial. Pursuing a compensation claim is one way of accessing bespoke medical treatment and greater awareness of this is most welcome.