Exploring patient perception of success and benefit in self-management of breast cancer-related arm lymphoedema

PURPOSE: The aim of this study was to identify factors influencing patient perception of success and benefit with self-management of breast cancer-related lymphoedema (BCRL) and explore how patients decide whether their swollen limb has improved or deteriorated.

METHODS: This qualitative study used a Grounded Theory approach. Twenty-one women in the BCRL self-management phase participated in one in-depth interview exploring their experience and perspective on self-managing their BCRL.

FINDINGS: Seven enablers and blocks to self-management were identified: routine, recognising benefit of self-management and consequences of non-treatment, owning treatment, knowledge and understanding, problem-solving, time required for treatment and aesthetics of hosiery. Women determined treatment outcome by monitoring size, appearance, texture and internal sensations within the affected arm.

CONCLUSIONS: Women who participated in this study showed varying degrees of acceptance and adjustment to life with lymphoedema. This appears to directly impact their ability to self-manage lymphoedema. Lymphoedema practitioners and oncology nurses have a valuable role providing knowledge and support to patients transitioning to independent self-care. A better understanding of factors facilitating patients to become experts in their condition may improve longer term outcomes and reduce cost pressures on lymphoedema services.