Online Support for Mesothelioma Survivors: What's Working Now
Remote support groups, including phone and Internet components, offer a unique way to help mesothelioma patients and caregivers – even when they’re not in session.
That’s the finding of a new study conducted by researchers at Columbia University, the Mesothelioma Applied Research Foundation, and Maimonides Medical Center in New York.
The researchers found that online and and telephone support as part of a closed group allowed participants to engage in healthy reflection between sessions and made it easier to cope with their malignant mesothelioma.
The Challenge of Surviving Mesothelioma
As the research team observed in Translational Lung Cancer Research, health-related quality of life tends to diminish for both mesothelioma patients and their caregivers almost as soon as they are diagnosed.
In addition to coping with the pain and fatigue of mesothelioma itself, mesothelioma patients also have to deal with the side effects of mesothelioma treatment such as surgery, radiation and chemotherapy. Couple those side effects with the stress of a major illness and it is not surprising that many mesothelioma patients decide not to continue with their cancer care.
But the new study finds that offering these patients remote support gives them a safe virtual space to vent their frustrations and share their burdens with others in a similar situation.
Supporting Mesothelioma Patients Remotely
One key to the success of the online/phone support group was that it was only open to people directly affected by mesothelioma. It was also guided by counselors.
Participants could call in and/or utilize the online component of the mesothelioma support group during weekly sessions for six weeks. Follow up information and session summaries were provided after the meetings.
Keys to Support Group Success
Active participation appeared to be another key to the success of these remote mesothelioma support groups. When surveyed afterward, mesothelioma patients who attended the group sessions regularly found them “very helpful.”. Those whose attendance was less regular had mixed feelings.
The researchers also found that having the online platform gave those working to survive mesothelioma a chance to reflect on their experience more deeply between sessions.
Columbia University researcher Gleneara Bates, MSW, concludes, “Active participation in a guided and closed support group allowed participants to share their experiences and concerns about their diagnoses comfortably, supporting transition beyond active-treatment.”
Source:
Bates, G, et al, “Approach to offering remote support to mesothelioma patients: the mesothelioma survivor project”, June 2016, Tralantoinal Lung Cancer Research, pp. 216-218
