It is easy to understand that mesothelioma victims and their families experience a rollercoaster of emotions, but a recently published study by researchers in the United Kingdom has provided a window into the profound and unique sense of loss, grief, anxiety and isolation that they feel.
Mesothelioma Study Examines Impact on Patients and Caregivers Alike
The study, published in the journal PsychoOncology, was conducted by researchers at the University of Sheffield. The group reviewed nearly four decades of mesothelioma patient and caregiver profiles to reach the conclusion that while mesothelioma patients experience the same emotional issues as others diagnosed with cancer, they carry additional emotional burdens based on several unique aspects of the disease.
One of the most impactful aspects of mesothelioma is the fact that it is diagnosed in such a small number of people. The disease’s rarity makes people feel that they are entirely alone, and the same is true for those who are caring for them and trying to support them. With fewer than 3,000 patients diagnosed in the United States each year, mesothelioma patients feel that they are entirely alone, with nobody to talk to who can understand what they’re experiencing. This sense of isolation exacerbates the dark emotions that accompany the terminal diagnosis.
Rarity of Mesothelioma Makes Research a Challenge
The rarity of mesothelioma is emotionally hard on patients and their caregivers, and also makes research a challenge. This is particularly true for studies of the disease’s psychological effects, which tend to be secondary to those focused on the disease’s development, progression and treatment. In this case, study author Virginia Sherborne and her colleagues needed to look as far back as 1981 to gather a statistically significant sample of patients, and even that deep dive yielded less than two dozen articles.
What she concluded was that both mesothelioma patients and their caregivers were concerned with three major issues:
- Time, specifically related to short survival, the speed of the cancer’s progression, and trying to fit in the appointments and treatments needed along with time with family.
- Negativity, specifically in the face of a disease with no cure and with so few able to understand the disease.
- Insufficient communication from medical professionals
She wrote, “Though limited, the evidence indicates that mesothelioma, with its high symptom-burden, incurability, rarity and asbestos-related causation, leads to complex and inter-relating psychological effects on patients and carers. The sparse literature gives a partial picture and demonstrates an urgent need for more nuanced research. Studies exploring the experiences of specific groups are recommended, with particular attention required to carers.”
If you or someone you love has been diagnosed with malignant mesothelioma, the Patient Advocates at Mesothelioma.net can provide invaluable support. Contact us today at 1-800-692-8608.