‘Not being able to breathe is the end of the world’: a descriptive qualitative study of breathlessness experiences of individuals with heart failure in Turkey

Abstract

Abstract Funding Acknowledgements Type of funding sources: None. Background Breathlessness is a distressing symptom that is intimately associated with progressively worse heart failure, whether it be in the hospital or community setting. It affects the physical and emotional state of people with heart failure; acute breathlessness episodes are a particular source of stress and anxiety. People tend to initially manage their breathlessness experiences that affect their daily lives in their own way. These self-management strategies differ according to the individuals affected by their characteristics. Cultural values and beliefs shape people's attitudes and behaviours through perceiving and managing symptoms. However, there is no data on the breathlessness experiences and self-management methods of individuals in Turkish culture. Aim To explore (1) individuals’ self-reported breathlessness experiences in heart failure: (2) their breathlessness management strategies based on their previous breathlessness relief motivations: and (3) factors related to their breathlessness experience and self-management strategies. Methods A descriptive qualitative study using semi-structured interviews exploring participants’ breathlessness experiences and self-management strategies. 20 adults with heart failure (11 women and 9 men; median age 56.5 years; age ranges 18-83; median heart failure duration 6.5 years) were recruited in Turkey. Face-to-face (n=11), telephone (n=6) and email (n=3) interviews were conducted, audio-recorded (except for email), transcribed verbatim in Turkish and translated into English. The Symptom Management Conceptual Model (Dodd et al. 2001) provided framework for this study. Braun and Clarke’s (2022) reflective thematic analysis was used to frame the study data. Results Three interconnected themes were identified: (1) Breathlessness experiences, (2) Breathlessness self-management, and (3) Outcomes - reducing breathlessness (Figure 1). These themes highlighted that relieving breathlessness was linked with how breathlessness was experienced and managed. Participants reported their emotional perspectives were influential in their breathlessness, and they tried to cope with it to manage their breathlessness. In particular, the continuity of the self-management strategy was related to the motivation of individuals and their success in breathlessness management. Some factors (person, health/illness, and environment) related to breathlessness experiences and self-management were identified. Conclusion The experience and management of breathlessness vary by individual factors and their effects. To improve motivation for continuing self-management strategies and minimise negative consequences of breathlessness, individual assessment is essential to heart failure management. Current healthcare systems should be oriented to person-led care-based management strategies. This includes individuals' self-assessment and understanding of their skills and self-management strategies regarding their symptoms.Figure 1:Identified themes