A study published earlier this year found that mesothelioma patients and their caregivers have many unmet support needs.
Mesothelioma is a cancer that forms in the lining of organs like the lungs. It is caused by exposure to asbestos. Most patients with mesothelioma are elderly and male. Treatment for mesothelioma is difficult and the five-year survival rate is poor.
A mesothelioma diagnosis can be devastating for a family. Patients and their caregivers can experience hopelessness, blame, and psychological distress. They also face uncertainty around financial issues and medical concerns. The painful symptoms of mesothelioma are a huge source of stress, as well.
There is not much information currently available about the psychosocial support needs of people living with mesothelioma and their caregivers. Researchers from Australia conducted a review of 13 different studies to find out what these needs are.
Unmet Needs for Mesothelioma Patients and Caregivers
The researchers identified some areas where better psychosocial supports could be provided to mesothelioma patients and their caregivers.
One area is when patients receive their diagnosis. Getting a mesothelioma diagnosis takes a long time and can be a frustrating process. People often feel anger, anxiety, and disbelief. The researchers suggest that the diagnosis could be better if the delivery was clear and understandable. It would also help if it was customized to the patient.
Another area for improvement is in symptom management. Mesothelioma causes shortness of breath, fatigue, insomnia, and pain. Patients with mesothelioma might feel shame, guilt, and stigma. The burden of symptoms makes it hard for patients to manage their health.
Receiving and providing care is another area of difficulty for mesothelioma patients and caregivers. For patients, treatments like chemotherapy are painful. Caregivers can feel fatigue and helplessness. These challenges make it hard to build a good relationship with doctors.
Coping mechanisms for dealing with mesothelioma range from acceptance to “fighting”. Patients worry about their declining health. They also worry about how their illness will impact their family. Caregivers often turn to spirituality or religion to cope with these challenges. Emotional support and patient-centered treatment would help patients and caregivers improve their coping strategies.
The key findings from this important study highlight the need for improved diagnoses and better emotional supports. Patients and caregivers may also benefit from earlier access to palliative care. These are changes that could help mesothelioma patients and their families to better navigate this difficult disease.
Breen LJ, Huseini T, Same A, Peddle-McIntyre CJ, Lee YCG. Living with mesothelioma: A systematic review of patient and caregiver psychosocial support needs. Patient Educ Couns. 2022;105(7):1904-1916. doi:10.1016/j.pec.2022.02.017