Stories from Wives and Caregivers of People with Mesothelioma

A new Australian study looked at people who took care of mesothelioma patients.  The study found that caretakers needed different types of support.

Mesothelioma is a cancer caused by exposure to asbestos. Patients with mesothelioma, and their caregivers, are known to have some of the highest unmet needs of all cancer populations.

Researchers talked to fourteen caregivers recruited from the Asbestos Diseases Foundation of Australia (ADFA). Of those interviewed, 13 were wives, and one was a daughter. Seven were retired at the time of the patients’ mesothelioma diagnosis, and 4 stopped work to provide care.

Researchers used the feedback to assess best practices for follow-up care for mesothelioma. They now plan to share these best practices with clinicians across the country to improve palliative care for all mesothelioma patient caregivers.

Holding onto Hope and Making Meaningful Memories

Researchers found three main themes in caregiver stories. First, caregivers of people with mesothelioma hoped for more information about the disease. Initially, caregivers had minimal knowledge of mesothelioma and wanted more information about managing the disease. Some caregivers were not aware of the terminal nature of the disease. And many were not ready for the dying process and what that meant practically.

Second, caregivers tried to focus on the importance of ‘meaning-making’ in a difficult situation. Finding meaning made the patient and caregiver more positive in their reflections. And together, they could create more meaningful life memories in the time they had left.

The last theme was related to coping with loss and reflections on care. Caregivers highlighted the importance of having hope and ‘doing something’ to help the patient. They also sought help and support from family and external sources. Hope was important for caregivers of patients with mesothelioma. For some, it was a hope for longer life. And for others, it was a hope for the patient not to suffer.

For almost all caregivers, care of the patient was made difficult by challenges in navigating the health system.

One common theme was that a lack of information caused challenges for caregivers. Malignant pleural mesothelioma has a high symptom burden. This often means a significant dependence on caregivers. And it contributes to the challenging experience for patients and their caregivers.

Caregivers expressed both practical and psychological distress created by a lack of information. And a late referral to palliative care and avoidance of death discussions were also reported to leave caregivers unprepared.

Finding A Better Way

Mesothelioma patients, and their caregivers, are known to have some of the highest unmet needs of all cancer populations.

This study identified significant challenges for caregivers of people with mesothelioma. Researchers concluded that early engagement with palliative care might positively impact patients and their caregivers.

Better integrated care involving improved access to palliative care may relieve caregivers of some of their caring burden and reduce their unmet needs.

Source:

Lee, Jessica T., Dipti L. Mittal, Anne Warby, Steven Kao, Haryana M. Dhillon, and Janette L. Vardy. “Dying of mesothelioma: A qualitative exploration of caregiver experiences.” European Journal of Cancer Care (2022): e13627. https://onlinelibrary.wiley.com/doi/full/10.1111/ecc.13627