Voices from the shadows: living with lymphedema

Abstract

Background: Breast cancer survivors with lymphedema face a lifetime of stressful physical and emotional symptoms and challenging self-care demands. An in-depth understanding of the perceptions and feelings surrounding life with lymphedema is critical to developing effective supportive care approaches.

Objective: The objective of the study was to explore perceptions and feelings related to lymphedema in breast cancer survivors.

Method: The expressive writings of 39 individuals were evaluated for this descriptive qualitative study. Data were analyzed using conventional content analysis.

Results: Qualitative analyses produced 4 major themes: (1) marginalization and minimization, (2) multiplying losses, (3) yearning to return to normal, and (4) uplifting resources. Subthemes for each major theme were also identified.

Conclusion: The lymphedema experiences of breast cancer survivors reveal perceptions of marginalization from healthcare providers who are not well informed about lymphedema management and minimizing its impact. Multiple distressing losses confront these patients on a daily basis, including body image disturbances, loss of functionality and control over time, permanent uncertainty, and adverse effects on relationships. The daily challenges of lymphedema often result in cumulative frustration and resentment that contribute to failure to perform self-care. Normalcy has been lost, never to return. These women find solace, encouragement, and hope to meet the challenges of lymphedema through support from others and their spiritual beliefs.

Implications for practice: Healthcare providers need greater awareness of the physical and psychosocial effects of lymphedema in breast cancer survivors. Nurses have unique opportunities to serve as advocates for reducing perceived marginalization and promoting effective self-care and other activities that promote psychological well-being and reduce physical deterioration.