A new report suggests that too many mesothelioma patients and their families may not be coping as well as they could be with the implications of their diagnosis.
Italian researchers in environmental health, occupational disease, and psychology conducted extensive interviews with 10 mesothelioma patients and 9 of their caregivers.
In a report in the journal Frontiers in Psychology, the team concluded that families with malignant mesothelioma are often more focused on their symptoms than on how their illness will impact their lives and that of their loved ones.
The Subjective Experience of Mesothelioma
Although several national and international reports have emphasized the importance of managing the psychological and social implications of a mesothelioma diagnosis, the Italian researchers say not enough has been done to truly understand what mesothelioma patients and their families are going through.
“Only a few studies have investigated the subjective experience of malignant mesothelioma patients and even less research has focused on the caregivers’ experience,” writes lead researcher Fanny Guglielmucci with the University of Turin.
Guglielmucci says the aim of the current study was to evaluate the “lived experience” of mesothelioma, an aggressive lung-related cancer with no known cure, including its impact on the mental health and wellbeing of both patients and caregivers.
Mesothelioma Symptoms a Recurrent “Theme” for Patients and Families
In their interviews with mesothelioma patients and caregivers, the Italian researchers identified four primary “themes”—subjects that came up again and again in their conversations.
These included 1) concerns about the physical symptoms of mesothelioma, 2) the fact that some of them lived near asbestos-contaminated sites, 3) the changes the mesothelioma diagnosis has caused in their relationships, and 4) worries about the future.
Of these, mesothelioma symptoms and their management took center stage, often overshadowing other equally pressing considerations.
Dr. Guglielmucci concludes, “Malignant mesothelioma patients and caregivers seem to be stuck in a concrete mental functioning focused on symptoms and they find it difficult to openly think and talk about the affective and emotional consequences of the diagnosis.”
Mesothelioma Treatment Brings Conflict
The researchers also found that families tended to experience conflict and communication difficulties in the period during which they were undergoing active mesothelioma treatment such as chemotherapy or radiotherapy.
Based on their results, the Italian team suggests that patients and families coping with malignant mesothelioma need more help from mental health professionals, social workers, and others who can support them on their cancer journey.
Many of the longest-living mesothelioma patients believe that maintaining a positive outlook and finding ways to support themselves emotionally have been keys to their survival. To learn more about the impact of attitude and lifestyle on mesothelioma outcomes, click here to request your free copy of “Surviving Mesothelioma”, the bestselling book by the world’s longest-living mesothelioma survivor.
Guglielmucci, F, et al, “”The Less I Think About It, the Better I Feel”: A Thematic Analysis of the Subjective Experience of Malignant Mesothelioma Patients and Their Caregivers”, February 20, 2018, Frontiers in Psychology