Living with lymphoedema—the perspective of cancer patients: a qualitative study

Abstract

Purpose: The aim of this study was to describe the lived experience of lymphoedema and the barriers faced by cancer sufferers receiving physiotherapy outpatient treatment. Methods: A qualitative, phenomenological study was performed. Purposeful sampling method was used. Data collection methods included unstructured and semi-structured interviews and researcher field notes. A thematic analysis was used. The study was conducted following the Consolidated Criteria for Reporting Qualitative Research guidelines. Results: Eleven patients (62.18 ± 10.14 years) (90.91% women) participated. One theme was identified with different subgroups. The main theme ‘Living a life with multiple barriers’—formed by the subthemes ‘Discovering physical and psychological barriers’, ‘Searching information’, ‘Building relationships’ and ‘Controlling expenses’—displays the daily difficulties they must face in areas such as work. The patients reported that lymphoedema is a constant emotional and physical challenge. They need to adapt their lives to their new situation, learning how to manage the lymphoedema. Conclusions: Patients considered lymphoedema as a clinical situation with multiple barriers and they found that it does alter their quality of life. These results can be applied in onco-haematology units to develop specific protocols for customers.