Chronic illness, reproductive health and moral work: women’s experiences of epilepsy

Background: The impact of chronic illness on families has long been noted in the literature but in such studies families appear as ready-formed entities. This exploratory qualitative study addresses the largely unacknowledged work involved in the production of families and the maintenance of reproductive health by women with epilepsy, a condition whose symptoms and treatment hold serious implications for all aspects of reproductive health. Methods: Qualitative in-depth interviews were conducted with a sample of 15 women aged 20-40 diagnosed with epilepsy and recruited from across the UK. The women had a range of neurological symptoms and hence different diagnostic categories; most had been diagnosed during childhood or adolescence. Ten women had at least one child. Results: Women’s experiences of health care services for key phases of reproduction are explored. While some women reported that they had received good health care others reported that they were given inadequate information and that advice was offered too late to enable them to take appropriate action. Discussion: Management of both epilepsy and reproductive health involves work with a significant moral dimension, accomplishment of which is contingent on appropriate and timely advice from health care practitioners.