Unknown stories: biographies of adults with primary lymphoedema
University of Southampton, School of Education,
Lymphoedema is a chronic, debilitating and disfiguring medical condition caused by lymphatic insufficiency. This insufficiency may be characterised as primary, when there is congenital or hereditary cause; or secondary, when the cause is related to trauma or illness. It can lead to extreme swelling, most usually in the limbs, and creates increased susceptibility to recurrent, and sometimes life-threatening, infection. Physical, psychological and social effects of the condition can have a significant impact on an individual’s life and their levels of participation. Lymphoedema has attracted a very small amount of research activity by comparison to other chronic conditions and almost all research has focused on the views of medical experts and relates to their management of the condition. What qualitative research that exists concerning the experience of living with lymphoedema has focused primarily on women who survive breast cancer. The voice of individuals with primary lymphoedema has not been heard.
This study investigated the life stories of eight people using an auto/biographical approach to illuminate their experiences of living with advanced and complicated primary lymphoedema. The specific aims of the study were to: record the stories of those who live with primary lymphoedema in order to better understand their lived experience; analyse those stories in the context of what is known about the condition and reflect on the management of lymphoedema; draw conclusions and make recommendations that might make a useful contribution to the lives of those who experience lymphoedema.
Each person took part in an interview with the researcher in which they were invited to talk about their lives. These interviews were transcribed and then reviewed by the participants. Narrative and biographical analysis was employed to explore the meaning in the data.
Findings reveal the extensive impact that primary lymphoedema has on individual lives depriving participants of relationships, employment, leisure and self esteem. Although each person provided a unique and individual point of view of their life, there were certain common themes that emerged. Participants spoke of their difficulty in finding a correct diagnosis and access to effective treatment; the importance of information and education and the challenges of daily self management.
Finally, recommendations are made to increase lymphoedema awareness amongst providers of healthcare and those who commission it; promote intensive and community-based treatment programmes; teach and monitor effective self-management techniques.
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