Recent studies have shown that mesothelioma patients are displaying common themes of extreme distress. They are showing the need for increased support, but that does not mean patients are without hope. There are tools and resources patients and their families can use to manage or reduce these feelings.

At first, the thought of living with any type of cancer can be overwhelming. It is completely natural to experience feelings of fear, anxiety or even anger. Studies have found that patients diagnosed with mesothelioma are experiencing much higher rates of physical, emotional, psychological and social distress following diagnosis compared to patients with other forms of cancer.

Research Proves Mesothelioma Patients Experience Higher Rates of Distress

An Australian study performed in July of this year aimed to better understand the experiences of patients suffering from mesothelioma. Researchers had discussions with patients about their physical, psychological and social realities. Patients who participated were also asked to share information on their connection and the capacity of their caregivers.

Results from the 2018 study found five major themes. First that the time of diagnosis was a particularly difficult time for patients. Second, the accuracy of mesothelioma information was problematic.

Coping strategies were within a wide range, from denial to acceptance. The burden of caring for patients was significant and caregivers should receive one-on-one support.

A separate study conducted in 2012 showed similar results. Researchers performed face-to-face interviews with 10 patients within the first 3 months of their diagnosis. The study found that uncertainty and lack of control were the main causes of the increased emotional, physical and psychosocial distress.

Studies Conclude Challenges

Saying that mesothelioma patients and their caregivers face significant challenges is an understatement.

Researchers from both studies believe that patients are receiving insufficient psychosocial support. Support in the forms of mental health counseling, education, group support or spiritual support are lacking.

An early referral to palliative care may improve patients’ access to these types of support. This may reduce the intense emotions they are experiencing. Clear and reliable information surrounding the disease, delivered in a sensitive and timely manner, may also support patients and their caregivers in this difficult time.

Services to Support Mesothelioma Patients and their Loved Ones

As mesothelioma treatment and surgical teams exist, there are also health professionals who specialize in administering a range of mental and social services to patients and their families.

Mesothelioma patients are not receiving adequate emotional or social support, or psychosocial care. Below are a few examples of psychosocial support that mesothelioma patients and their families may need.

Mental Health Counselling

Counseling offers patients, family members or caregivers, an opportunity to sit down and talk with a non-biased professional about their feelings and concerns. Getting all your thoughts out in the open can be very relieving. It may also allow you to talk through things you may feel uncomfortable discussing with individuals who are more involved with the situation.

Mesothelioma Education

Getting a better understanding of available mesothelioma treatments, specialists or common medication side effects can reduce the fear of the unknown. You should feel comfortable asking your doctor any questions you may have about your prognosis. You can also learn more about various aspects of the disease on our website.

Mesothelioma Support Groups

Patients and their families can find comfort when they realize they are not alone in their fight. There are people who are facing similar struggles and pain. Mesothelioma support groups can give you an outlet to connect and share experiences. You can read more about the advantages of joining a support group here.

Being diagnosed with mesothelioma, or caring for a loved one who has been, is difficult. This does not mean individuals in this position should feel hopeless or accept these intense emotions as their new normal. Things will get better, you deserve to enjoy your life and there are tools and supports to help you do that.

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Sources
  1. International Journal of Palliative Nursing, “The Lived Experience of Patients with Pleural Mesothelioma.” Retrieved from: https://www.researchgate.net/publication/5438987_The_lived_experience_of_patients_with_pleural_mesothelioma. Accessed on August 13, 2018.
  2. Supportive Care in Canada, “ It Sort of Hit me Like a Baseball Bat Between the Eyes: A Qualitative Study of the Psychosocial Experiences of Mesothelioma Patients and Carers.” Retrieved from: https://link.springer.com/article/10.1007/s00520-018-4357-0. Accessed on August 13, 2018.
  3. American Cancer Society, “Understanding Psychosocial Support Services.” Retrieved from: https://www.cancer.org/treatment/treatments-and-side-effects/emotional-side-effects/understanding-psychosocial-support-services.html. Accessed on August 13, 2018.

Last modified: September 1, 2018