Schedule:
Saturday, January 23, 2027
Golden Gate 7 (Hilton San Francisco Union Square)
* noted as presenting author
Jen Hirsch, MSW,
Doctoral Candidate, Michigan State University, East Lansing, MI
Julie White, BSN, RN, OCN, Director of Patient Services, Mesothelioma Applied Research Foundation, DC
Melissa Culligan, PhD, RN, Director, Thoracic Surgery Research; Co-Director, Temple Health Mesothelioma and Pleural Disease Program, Temple University Hospital, PA
Amanda Woodward, PhD, Professor, Michigan State University, MI
Xuehan Zhang, MSW, Doctoral student, Michigan State University, East Lansing, MI
Maria Towe, MPH, Community Advisory Board, Mesothelioma Applied Research Foundation, DC
Claudine Benmar, BA, Community Advisory Board, Mesothelioma Applied Research Foundation, DC
Brian Lepacek, MDiv, CAE, Executive Director, Mesothelioma Applied Research Foundation, DC
Background and Purpose: Interactions with the health care system impact the emotional experience of an illness for patients and caregivers as well as the bereavement process for loved ones after the patient dies. Healthcare professionals can provide support for coping with the illness experience or make it more difficult depending on their engagement, coordination, and expertise. Mesothelioma is a serious illness as well as being a rare disease with a legal component. These additional layers complicate this population’s needs and treatment from healthcare providers and systems. Our research seeks to identify what is unique to the mesothelioma healthcare experience and what can be learned about general healthcare needs of people with serious illness from this population.
Methods: This analysis focuses on the experience of healthcare encounters by people living with mesothelioma using data from the Mesothelioma Caregiving Study. Reflexive thematic analysis was sensitized using research in the experience of healthcare among patients with serious illness and their caregivers. Initial coding was completed in Dedoose and more fine grain coding was completed in excel. Codes were thematized using systems theory to separate the healthcare experience into broad and specific components.
Results: Three areas of findings were identified. First, the mesothelioma specific experience of healthcare was marked by a lack of knowledge and expertise. Second, there were three areas of general healthcare experiences that were worsened because of unique mesothelioma aspects. These were (1) the need for support around processing information, (2) a lack of coordination of care, and (3) not being treated as a person. Lastly, aligned with other serious illness experiences, mesothelioma patients and family members identified the need for whole person care; information and communication; and rapport and relationships with doctors.
Conclusions and Implications: Receiving the diagnosis of a serious illness, and mesothelioma in particular, is a life-changing experience. It is marked by numerous interactions with the healthcare system as well as the legal system. While some mesothelioma healthcare needs are related to this specialty area, all healthcare providers need better awareness of the specific needs of mesothelioma patients to provide better care for this population.
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