Supporting Mesothelioma Caregivers from Diagnosis through Bereavement

Background and Purpose: Individuals caring for a loved one with mesothelioma navigate a range of significant stressors from diagnosis through bereavement. The illness trajectory is marked by ongoing uncertainty, complex diagnosis and treatment options, and shifting roles as caregivers transition from acute caregiving to survivorship to bereavement. However, less is known about the support needs of caregivers in the illness trajectory. This paper aims to examine caregivers’ needs of support across phases of the disease. Better understanding how individuals cope across the disease process is critical for informing supportive interventions that promote resilience for caregivers and their loved ones.

Methods: Using a stress and coping framework, this presentation drew on data from the Mesothelioma Caregiver Study. We conducted a thematic analysis with a particular focus on support-related themes. This analysis examined how caregivers described and identified their needs and sources of support they used or hoped to have.

Results: Findings indicate that participants draw on three primary sources of support. First, practical caregiver support, such as meal deliveries, offers of assistance, and financial help, were used to reduce caregiver burden and role strain. Second, emotional and social support, such as support groups and regular check-ins from family and friends were used to aid the grieving process. Lastly, spiritual support, including prayer, conversations with priests, and offers of religious memorial services, helped caregivers find peace and comfort as they faced suffering and loss.

Conclusions and Implications: These findings contribute to the existing literature on caregiver support by considering the different phases of serious or incurable illness, such as mesothelioma, and inform the development of multilevel interventions to promote caregiver resilience.