The experience of episodic breathlessness from the perspective of informal caregivers: a qualitative interview study

Episodic breathlessness is a common form of chronic breathlessness that is highly distressing for patients with diseases such as chronic obstructive pulmonary disease (COPD) and lung cancer in advanced stages. Little is known about the experiences of informal caregivers who care for patients with episodic breathlessness. The present study aims to explore and describe the experiences and coping strategies of informal caregivers who deal with this challenging condition. This is a qualitative study based on semi-structured in-depth interviews with informal caregivers of patients suffering from episodic breathlessness. The interviews were recorded, transcribed verbatim, and analyzed using Mayring's qualitative content analysis. Thirteen informal caregivers were interviewed. The results suggest that the distress patients often experience during episodic breathlessness causes concern and anxiety among most informal caregivers. Particularly stressful for them is their own helplessness and uncertainty, especially when episodic breathlessness occurs for the first time. Over time, all informal caregivers interviewed had developed strategies to cope with the patients' episodic breathlessness. These strategies can be divided into two categories: (I) strategies directed at the patient to provide appropriate support during episodic breathlessness, and (II) strategies aimed at coping with the caregiver's own emotional burden. Despite these strategies, the need for professional support for informal caregivers often remains unmet, especially during the initial onset of episodic breathlessness. Informal caregivers of patients with chronic breathlessness need support and advice on how to better cope with episodic breathlessness. Both patient and caregiver support need to be part of a comprehensive approach, e.g., as part of a breathlessness service.