University Hospital Federation: Bridging Research Efforts Against the Silence of Dyspnea

The BREATH University Hospital Federation (FHU)—Research Efforts to Combat the Invisibility of Dyspnea—aims to better understand and combat the mechanisms that render persistent dyspnea socially, clinically, and scientifically invisible. Defined as a distressing or disruptive sensation during breathing, dyspnea is one of the most debilitating symptoms of many chronic diseases. When it becomes persistent, it significantly impairs quality of life, limits daily activities, contributes to anxiety, and can lead to significant psychological and existential distress.

Despite its major impact, dyspnea remains underrecognized in healthcare pathways and in society. This lack of visibility results in clinical underestimation, under-treatment of patients, and a limited number of dedicated therapeutic trials. It also contributes to a lack of recognition of the suffering experienced by those affected.

To address this challenge, the FHU BREATH is developing a transdisciplinary approach that brings together respiratory medicine, palliative care, neuroscience, psychology, sociology, and artistic practices. Its goal is to improve the recognition of persistent dyspnea and promote more equitable access to treatments by taking into account its biological, psychological, and social dimensions.

The sociological research integrated into the project analyzes dyspnea as a “social ordeal of breathing.” Although usually invisible, breathing constitutes a bodily infrastructure essential to social life. With dyspnea, this obvious fact disappears: breathing becomes a constant effort that can lead to a life-altering disruption marked by limited activities, dependence on medical devices, and changes in social and family relationships.

However, this experience is not always socially recognized. In certain chronic respiratory diseases, particularly COPD, shortness of breath may be trivialized or attributed to individual responsibility related to smoking. Patients may then face forms of stigma that reinforce their isolation and their tendency to downplay their difficulties. The project is based on the hypothesis that the invisibility of dyspnea results from tensions between subjective experience and medical objectification, between bodily vulnerability and social norms of performance, as well as between recognition and stigmatization.

The BREATH FHU is structured around five complementary work packages (WPs). WP1 aims to improve the visibility of dyspnea in clinical practice by strengthening communication between patients and healthcare professionals and by promoting greater consideration of patients’ lived experiences. WP2 develops new therapeutic trials—both pharmacological and non-pharmacological—targeting both dyspnea and its psychological consequences. WP3 studies the effects of dyspnea on healthcare providers and family caregivers, as well as the mechanisms of empathy associated with this experience. WP4 analyzes the sociological dimensions of invisibility, particularly the mechanisms of stigmatization, social inequalities, and cultural barriers that influence the recognition of dyspnea. Finally, WP5 explores innovative approaches at the intersection of neuroscience, respiratory physiology, and art, particularly through interventions that foster empathy and raise awareness of the experience of breathing.

Through this integrated approach, BREATH aims to shed light on a form of suffering that is still too often overlooked, improve patient care, and promote greater social and scientific recognition of persistent dyspnea.