Cancer survivors' views of lymphoedema management.

BACKGROUND Many clinicians recognise the importance of the patient's role in treating and managing lymphoedema and that optimal outcomes depend on patients' compliance to treatment, or a prescribed daily lymphoedema care regimen. Such a widespread belief can be called a 'compliance paradigm'.

AIMS To ascertain whether breast cancer survivors with lymphoedema have the same concept of compliance as clinicians to characterise their experiences.

METHODS Using a descriptive phenomenological method, 34 participants were recruited and 102 interviews completed.

RESULTS The findings of the study reveal that, from the perspective of breast cancer survivors, managing lymphoedema is broader than compliance to treatment. The women actively structured their lives to make lymphoedema management feasible by incorporating it into a daily routine. The study offers an alternative insight into the compliance approach to lymphoedema management and it is important for researchers and clinicians to be aware that breast cancer survivors do not consider compliance to treatment as part of their daily lymphoedema care.

CONCLUSIONS In research and practice, it may be more appropriate to assess the presence or absence of breast cancer survivors' intentions, effective and ineffective strategies, and barriers to effective strategies.