“My eyes are open but sometimes I want to close them”: using interpretive phenomenological analysis to explore the lived experience of dyspnea and quality of life before and after lung-sparing surgery for pleural mesothelioma

Pleural Mesothelioma (PM) is a rare, incurable malignancy of the pleura. Lung-sparing surgery, considered investigational, aims to prolong survival and improve quality of life (QOL). Beyond the standard quantitative measures used to determine successful surgical outcomes, an understanding of an individual’s perception of the impact surgery has had on their symptom burden and QOL has not been reported in the literature. The primary aim of this study was to explore the lived experience of dyspnea and QOL before and after lung-sparing surgery. The philosophical approach to this study was grounded in hermeneutical phenomenology. Participants underwent in-depth semi-structured interviews before and 3–4 months post-surgery, analyzed through Interpretive Phenomenological analysis. The analysis identified Group Experiential Themes (GETs) before and after surgery: Psychological (mind supports body), Physiological (body fighting, enduring, and adapting), Social (others sharing and supporting), and Existential (facing an uncertain future). The emotional impact of PM is multidimensional, involving time, internal psychological struggles, and coping with the diagnosis. The physical impact disrupts normal routines and interactions, while social interactions influence the perception of the illness experience. Facing PM disrupts normal bodily routines and interactions with the world. This study provides qualitative evidence that perceptions of dyspnea and QOL significantly impact the patient experience before and after surgery. The enriched understanding of living with mesothelioma and enduring lung-sparing surgery comes from the patients’ voices, highlighting the continuum of dyspnea and QOL influenced by various factors. Healthcare teams must consider patients’ physical, emotional, social, and existential experiences beyond measurable outcomes.