A qualitative exploration of distress associated with episodic breathlessness in advanced lung cancer

Purpose: Breathlessness is a distressing symptom, particularly common in those with advanced lung cancer. Previous research has identified the symptom occurrence of episodic breathlessness, identifying average frequency, duration and severity of episodes, but has not explored the distress specifically associated with these episodes. This study explored the distress associated with episodic breathlessness for adults with advanced cancer and the relative impact of three elements; frequency, duration or severity. Methods: Semi-structured interviews were conducted with four participants with advanced lung cancer. Analysis adopted an interpretative phenomenological approach. Results: A complex relationship existed between distress caused by episodic breathlessness and its frequency, duration and severity for study participants. Episodic breathlessness had a significant impact on participant's perceptions of self and previous experience effected how distressed they were by their breathlessness. The emotional work created by the symptom was considerable for individuals. Conclusion: The study highlights the importance of recognizing symptoms as a combination of different experiences that may each cause different levels of distress. Initial evidence is provided that the emotional work involved for patients to self-manage each separate element of breathlessness should be considered in its treatment.