The Lived Experience of Refractory Breathlessness

Abstract

Introduction: Refractory breathlessness is breathlessness at rest or on minimal exertion that persists chronically even with optimal treatment of the underlying cause. Despite its burden and prevalence globally, symptoms remain under-treated and under-researched and those affected struggle daily with the condition. Aim: The aim of the study was to gain a greater understanding of the lived experience of refractory breathlessness. Also, it was anticipated that a deeper insight into its impacts on daily activities would allow more effective occupational therapy interventions to be developed. Method: A qualitative phenomenological approach using NVivo software, with one-on-one, semi-structured interviews and themes established through thematic analysis. The study recruited consecutive patients until thematic saturation was reached. Participants were recruited from a Sydney-based outpatient Breathlessness Clinic at a palliative care hospital. Results: 6 participants were interviewed and 4 main themes identified. 1) Living on the Edge, referring to the extreme feeling of breathlessness experienced by patients; 2) Social Needs, 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. For each of the four themes, three to five subthemes were also identified through the analysis. Conclusion: Of the 4 themes identified in this study, number 3 and 4 may represent the best targets for occupational therapy interventions. Patients noted the importance of functional participation for improved engagement and quality of life. There is scope to develop specific interventions for self management and equipment prescription given lack of published literature in this area.