Living with lymphedema: a qualitative study of women's perspectives on prevention and management following breast cancer-related treatment

Abstract

A phenomenological research method was used to investigate the experience of lymphedema in 13 women following breast cancer-related treatment. The women, ranging in age from 45 to 82, living on the east coast of Canada, had lymphedema of the upper extremity for at least one year, and had no evidence of active cancer disease. Semi-structured interviews were used to examine the physical and psychosocial suffering that women with lymphedema experienced. The lack of appropriate pre-intervention education and post-intervention support by health care professionals as well as the lack of effective protocols to prevent lymphedema combined to intensify the suffering. Data analysis incorporated van Manen's (1990) six research activities which give human science its vigor. These non-sequential steps assisted in identifying five major themes: 1) Constancy; 2) Yearning for Normalcy; 3) Continually Searching; 4) Emotional Impact; and 5) Abandonment. The prevailing thread or essence salient to all five themes in this study is denoted as Existential Aloneness as each participant expressed a sense of isolation, of being on their own, of being set adrift to discover what they could about lymphedema, in the best way that they could. Nursing implications and recommendations for change are highlighted.