Mesothelioma patients are no strangers to feelings of hopelessness, loneliness and isolation, but their caregivers are equally prone to these negative emotional side effects of the disease, a new study shows.
The study, published in the August 2013 issue of Neuropsychiatric Disease and Treatment,provides a detailed look at the emotional experiences of first-degree mesothelioma caregivers. The researchers also noted specific personality traits and societal trends that make caregivers more prone to these feelings of malaise.
Disappointment, Lack of Trust Shared by Patients, Caregivers
Repeated disappointment, often leading to a lack of trust, was one of the most common complaints from patients and caregivers.
Surprisingly, much of this disenchantment stemmed from the origins of the disease itself. Because most patients became ill at their place of employment, they (and their families) had to cope with the frustration that company executives neglected implementing protective measures, despite knowledge that asbestos could cause serious health problems.
Caregivers often experience these feelings as well, as they watch their loved ones battle a disease that was entirely preventable.
Legal battles also contribute to these feelings of disillusionment and distrust. Lawyers for powerful asbestos companies often drag trials out for as long as possible, knowing those patients are facing a shortened life expectancy. That maneuvering can make patients and their caregivers feel even more taken advantage of during this emotionally exhausting time. It also reinforces caregivers’ beliefs that goals cannot be reached, and that problems cannot be solved.
Distrust Breeds Cynicism
Former caregiver, Lorraine Kember, discusses the importance of emotional support.
Researchers found that over time, this growing distrust likely put caregivers in a cynical frame of mind. Caregivers often felt as though others were being insincere when they attempted to be helpful; they also struggled to accept offers of assistance, the study showed. As a result, those struggles made caregivers more prone to burnout, and the negative emotional side effects that accompany that exhaustion.
However, the study notes that this cynicism was most common among caregivers with a naturally pessimistic outlook on life. Those caregivers tended to feel as though people, in general, are always looking out for their own interests, rather than the interests of others. Caregivers who disagreed with this statement were less likely to report increasing distrust of other helpers, although the majority of caregivers in the study reported lower opinions of others.
Interference with Healthy Functioning
Like most mental complications, these emotional challenges weren't completely limited in scope. Mesothelioma patients and their caregivers reported worse physical functioning than their healthy counterparts. Both groups reported a higher overall sense of physical debilitation, difficulty concentrating and inability to recall specific memories.
While patients were somewhat likely to deal with these issues during treatment, caregivers received less professional guidance or none at all. Despite reporting higher levels of personal distress than patients, caregivers felt less informed and supported throughout the process. Because their struggles went largely unaddressed, many patients felt their fears, including anxiety that they, too, would develop mesothelioma, interfered with their daily lives.
Despite the disheartening nature of this study, it re-emphasizes the positive benefits of emotional support.
Mental health professionals are becoming increasingly aware of these challenges and better equipped to help families deal with them. These support systems, whether virtual or real, are a crucial and free way for patients and their loved ones to cope with the realities of their mesothelioma diagnosis.