Mesothelioma Caregivers’ Experience of Grief and Loss from Diagnosis through Bereavement

Background and Purpose: Research on the lived experience of mesothelioma captures the psychosocial distress that arises from the illness but does not view this distress through the lens of grief and loss. The goal of this analysis is to identify what aspects of grief and loss are present in the journey of mesothelioma from diagnosis through bereavement?

Method: Using data from the Mesothelioma Caregiver Study, we completed a thematic analysis that was theoretically grounded in grief theories which are primarily derived from research on bereavement. While our focus was on grief responses to and losses related to the illness, not bereavement, grief from death and non-death losses are theoretically similar. Initial coding was done in Dedoose with fine grain analysis completed in Excel.

Results: We found three overarching themes: normal grief symptoms, identification of non-death losses, and variation in emotional responses based on caregiving stage. Aligned with bereavement literature we found normal grief symptoms throughout the caregiving stages including anger, numbness, helplessness, guilt, disbelief, and sadness; adjustment over time; finding a new normal because of the way that the diagnosis fundamentally changed their life, and engagement in meaning making. Losses included loss of relationship with the patient, the future, hope, identity, time, and enjoyable activities. Lastly, the diagnosis was marked by shock while the treatment stage was marked by anxiety.

Conclusions and Implications: The mesothelioma illness experience is marked by ambiguous and symbolic losses which are difficult to name. As such, the loss experienced during the course of illness is likely to be unrecognized and unsupported. The lack of focus on loss limits the effectiveness of existing support resources for mesothelioma caregivers and other serious illnesses; however, there remains a paucity of research in the United States specifically focused on this population. These supports are not just about preparation for death, which is protective for bereavement risk, but need to also focus on losses and grief experienced concurrently with the disease process.