When it comes to malignant mesothelioma, Australia has been hard hit. The country was once a major producer of asbestos, and as a result it has one of the highest rates of mesothelioma in the world, with roughly 650 new cases diagnosed each year. The disease has several unique characteristics that make it particularly challenging for those diagnosed with it, as well as those who are in their immediate circle. A recently conducted study examined the psychosocial experiences of mesothelioma patients, focusing on five major themes, and the researchers’ findings can serve as a helpful guide to those who are serving the community of mesothelioma patients all around the world.
The five conclusions that the mesothelioma researchers reached were as follows:
- The period when a patient is first diagnosed with malignant mesothelioma is particularly challenging
- The information that is available to the mesothelioma patient after they are diagnosed is a problem in terms of the timeliness of its delivery and its accuracy
- Patients diagnosed with mesothelioma exhibit a wide variety of coping mechanisms, ranging from antagonism to acceptance
- Caring for a mesothelioma patient is an extremely difficult job, both physically and emotionally
- Those providing care to mesothelioma patients need to be provided one-on-one support
The study was small, and involved just eight patients and six carers, some of whom were patient/carer pairs. The mean age of patients was 64, and the carer’s age was roughly the same. All agreed that their diagnosis came as a shock to them, and that the combination of the unexpected diagnosis with the poor prognosis contributed to their inability to cope well with their situation. They felt that being provided with too much information about the disease at the time of diagnosis was both overwhelming and inappropriate – they preferred to have access to the information that they could refer back to when they wanted to access it.
Another thing that mesothelioma patients and carers agreed on was the predominance of negativity in the information that they were given. They said that the focus on the disease’s poor prognosis led them to abandon educational material.
A good deal of the study was devoted to the extreme burden that mesothelioma caregivers face, and the importance of support from the community, from case workers, and from other caregivers. If you or somebody you love has mesothelioma and you need assistance for them or for yourself, the Patient Advocates at Mesothelioma.net can help. Contact us today at 1-800-692-8608.
