Centering the Lived Experience of Mesothelioma Caregivers to Develop an Online Support Intervention

Background and Purpose: Mesothelioma is a rare form of cancer caused by exposure to asbestos. There are roughly 2500 new cases diagnosed annually. Caring for a loved one with mesothelioma has unique challenges compared to other caregiving contexts: the seriousness of the illness, the limitations of a rare disease, and the legal implications. The prognosis is poor with median survival from diagnosis at 10 months. Establishing diagnosis can be difficult and effective treatment options are limited. Lastly, due to the exposure to asbestos, patients are often involved in lawsuits that continue after their death. These factors limit the utility of existing supports for caregivers; however, there is limited research in the United States focused specifically on mesothelioma caregivers. The Mesothelioma Caregiver Study addresses this gap by 1) describing and understanding the experience of mesothelioma caregivers in the United States and 2) developing and testing a social work facilitated online support intervention.

Methods: The study uses a community engaged framework and the NIH Stage Model conceptual framework for behavioral intervention development to develop and test a principle-driven intervention grounded in the experience of mesothelioma caregivers and bereaved. This paper reports on methods and overarching results from the first qualitative phase of the study. We conducted semi-structured interviews between December 2024 and May 2025 with 27 patients, caregivers, and bereaved. Participants were recruited through our community partner email database and social media as well as through connections with relevant staff at cancer centers and hospitals caring for mesothelioma patients. Interviews were conducted on Zoom, recorded, and transcribed. Multiple team members coded the data independently using Dedoose. We used reflexive thematic analysis to identify themes across interviews that reflect patterns of shared experiences.

Results: We identified three key phases of caregiving – acute caregiving at diagnosis and early treatment, survivorship as treatment continues, and bereavement when their loved one dies. Information was a key need at diagnosis with information, emotional, and financial support needed as treatment continues and at end-of-life. Health related social factors such as health and digital literacy, social networks, and the ability to travel for treatment from mesothelioma specialists differentiated participants experiences across the caregiving phases. In addition, the rarity of mesothelioma and the legal involvement increased the difficulties caregivers faced in accessing useful information and support, often putting them in the role of educating health professionals, making advocacy on behalf of the patient particularly important, and dealing with legal issues after their loved one dies.

Conclusions and Implications: This study is one of the first in the United States to focus on mesothelioma caregivers. While the phases of caregiving, overarching support needs, and the impact of health-related social factors align broadly with other caregiving contexts, the rarity, poor prognosis, and legal involvement of mesothelioma add to the stressors faced by these caregivers. Findings from this study highlight the importance of participant voices to ensure that we capture the nuance of their experiences when developing interventions, policies, and future research.