Post-breast cancer lymphedema: understanding women's knowledge of their condition

To investigate chronic condition representations and treatment choices among women with post-breast cancer lymphedema (LE) to understand their receipt and use of accurate medical information.

Qualitative, template analysis.

Midsized midwestern city and surrounding rural areas.

18 Caucasian women aged 37-87 years (mean = 58.8 years) with LE.

Telephone and face-to-face interviews, lasting 45-60 minutes, were conducted by research students and graduate nursing students. Interviews were audiotaped, professionally transcribed, and verified for transcription accuracy. Self-regulation theory as a template was applied to (a) understand participants' use of health information to cope with LE and (b) evaluate the accuracy of participants' health information that may have influenced participants' abilities to make appropriate prevention or treatment choices.

Participants' illness representations and coping strategies.

Participants were aware of the fundamental cause of their LE--breast cancer treatment. They also were conscious of other causes of symptom onset. These causes are supported by existing empirical evidence. Participants' treatment choices were consistent (e.g., use of compression treatment, massage, elevation, pumps, therapists and therapy centers, and positive attitude and faith) and inconsistent (e.g., effectiveness of exercise and medication in management of LE) with empirical evidence.

Future research and practice should target the role of exercise as a cause of LE and as a treatment option, investigate allergic reactions as a possible catalyst of LE symptoms, work to improve diagnosis of LE and patient education, and examine the effectiveness of medications as a treatment method.

Review of LE risk factors in the postoperative period and continued assessment and education are vital to a comprehensive approach to post-breast cancer LE care.