How people construct their experience of living with secondary lymphoedema in the context of their everyday lives in Australia

The purpose of this work was to explore how men and women construct their experiences living with lymphoedema following treatment for any cancer in the context of everyday life.

The design and conduct of this qualitative study was guided by Charmaz’ social constructivist grounded theory. To collect data, focus groups and telephone interviews were conducted. Audiotapes were transcribed verbatim and imported into NVivo8 to organize data and codes. Data were analyzed using key grounded theory principles of constant comparison, data saturation, and initial, focused, and theoretical coding.

Participants were 3 men and 26 women who had developed upper- or lower-limb lymphoedema following cancer treatment. Three conceptual categories were developed during data analysis and were labeled “accidental journey,” “altered normalcy,” and “ebb and flow of control.” “Altered normalcy” reflects the physical and psychosocial consequences of lymphoedema and its relationship to everyday life. “Accidental journey” explains the participants’ experiences with the health care system, including the prevention, treatment, and management of their lymphoedema. “Ebb and flow of control” draws upon a range of individual and social elements that influenced the participants’ perceived control over lymphoedema. These conceptual categories were interrelated and contributed to the core category of “sense of self,” which describes their perceptions of their identity and roles.

Results highlight the need for greater clinical and public awareness of lymphoedema as a chronic condition requiring prevention and treatment, and one that has far-reaching effects on physical and psychosocial well-being as well as overall quality of life.