The lived experience of refractory breathlessness for people living in the community

Refractory breathlessness occurs at rest or on minimal exertion and persists chronically despite optimal treatment of the underlying cause. The burden and prevalence of breathlessness is high, yet symptoms remain under-treated and those affected struggle daily with the condition. This study aims to gain a greater understanding of the lived experience of refractory breathlessness and its effect on daily activities. Participants were recruited from a Sydney-based outpatient breathlessness clinic. An exploratory qualitative approach was undertaken with individual, semi-structured interviews, using NVivo software to conduct thematic analysis. The study recruited consecutive patients until thematic saturation was reached. Six participants were interviewed and four main themes identified. 1. Living on the edge, referring to the extreme feeling of breathlessness experienced by patients; 2. Social meanings of breathlessness, describing the significance of social support; 3. Reduced to the basics, referring to the effect breathlessness has on basic daily tasks; and 4. Sources of security, which describes the measures participants take to protect themselves from their own breathlessness. Participants noted the importance of functional participation for improved engagement and quality of life. There is scope to develop specific interventions and occupational therapy services incorporating self-management and equipment prescription for people with dyspnoea