The Politics of Lupus: an ethnographic study of living with Lupus.

      Аннотация: This case study explores the narratives of four women with the chronic autoimmune disease known as lupus. The author used participant observation in his role as Community Occupational Therapist (and son) to gain access to a convenience sample of four women diagnosed with lupus. He asked them to keep written diaries about their day-to-day experiences of living with the illness. These diaries were later given to the author to read, study and analyse. Additionally, the author’s personal ethnography as a son was submitted as data for this study. This ethnographic writing centred on the life of one sole informant, his mother, who later died with the disease whilst in the care of paid health professionals. The findings and conclusions from this study will have implications for future research projects into the social impact of living with Lupus.

Ключевые слова: Politics, Ethnography, suffering, qualitative, lupus, Legislation, occupational therapy, death and dying