Understanding the Mesothelioma Journey from Diagnosis through Bereavement

TL;DR

This study explores the unique challenges faced by mesothelioma patients, caregivers, and bereaved individuals to develop targeted support interventions.

Contribution

The research introduces a novel community-engaged approach to understanding mesothelioma caregiving and bereavement through in-depth interviews and thematic analysis.

Findings

Mesothelioma caregiving is distinct from other cancers due to its unique characteristics.

Caregivers and patients often feel a lack of control due to limited treatment options.

Health-related social factors, like travel for expert care, significantly impact the experience.

Abstract

The Michigan State University School of Social Work (MSUSSW) and the Mesothelioma Applied Research Foundation (Meso Foundation) are collaborating on a federally funded four-year project to develop and test an online support intervention for those caring for a loved one with mesothelioma. This poster will present results from the first phase of this work within the context of a community-engaged research framework. Twenty-seven semi-structured interviews (5 patients, 12 caregivers, 10 bereaved) were conducted via Zoom between December 2024 and May 2025. Interview topics included the diagnosis, the treatment journey, the experience of providing care, decision making, planning for end of life, and caregiving and bereavement support. Interviews were recorded and transcribed. A codebook was created through an iterative process and each interview was coded in Dedoose by two team members with discrepancies and questions resolved by the full team. Initial thematic analysis identified three main findings. First the uniqueness of mesothelioma compared to other cancer experiences permeated all aspects of caregiving. Second, caregivers and patients experienced a lack of control. For example, limited treatment options meant there were really no treatment decisions to make. Third the impact of health-related social factors was heightened because of the unique aspects of mesothelioma (for example, the need to travel to receive care from experts). Based on these findings, the next phase of this research will include mapping the trajectory from diagnosis through bereavement to identify key time points for intervention and confirming these findings through focus group discussions.