Denise Haylen

PhD candidate

Living with Lymphangioleiomyomatosis: A life history project

Supervisors: Dr Murray Fisher and Dr Jo Patching

LAM is a rare, incurable, chronic condition characterised by progressive cystic lung disease affecting almost exclusively women, usually during their childbearing years. Prevalence is 3-5 per million people and can affect women of all races. Progress to respiratory failure can vary from two to more than twenty years. Treatment may involve the use of immunosuppressive medication, oxygen therapy and lung transplantation.

There is a paucity of literature on the experience of living with LAM and on the experience of living with a rare disease. It has been recognised also that objective medical tests do not necessarily reflect patients’ feelings about the impact of illness on their ability to carry out activities in their daily lives, and that there is a need to obtain patients’ subjective views to improve clinical outcomes and quality of life. This qualitative life history study aims to increase knowledge of women’s perceptions of the impact of LAM on their lives, improve understanding of how the rarity of the disease affects the illness experience, and identify needs of women with LAM. In this way the study will inform the clinical decision making of health professionals caring for women with LAM and may improve support for this group of individuals.

The life history method is being used to explore the experience of living with LAM over the life course for women in different contexts, from different cultural backgrounds, and at different stages of the life course and illness trajectory. This method documents LAM patients’ narratives of their lives throughout the onset and course of their disease in order to understand the meaning of the illness experience in different social contexts and across time. Data is being obtained from two semi-structured interviews and the medical record of each participant. Analysis, using Rosenthal’s (1993) method of narrative analysis, will include the life story as narrated by each participant, construction of the Biographical Account, the objective facts of the illness, and reconstruction of the Life History, in which each woman’s experiences will be reconstructed in chronological sequence representing her past perspective. Analysis will take place across cases.