Increasing numbers of Canadians, including children and adolescents, are being infected with Borrelia burgdorferi and contracting Lyme disease. In the present study, we provided a qualitative analysis of written correspondence produced by 23 parents of children and adolescents with Lyme disease. The goal of this study was to investigate how medical and psychological issues were highlighted by parents describing their family's Lyme disease experiences. The results suggest a series of four stages in these families where satisfactory treatment had not been obtained over months or years. The experiences of parents evolved from feelings of worry for the child to frustration with the lack of a helpful treatment, to mistrust of physicians' actions, and, in some case, to a rejection of the conventional health care system as a whole. Improved diagnostic testing and treatment guidelines, as well as family-centered practices of medical care were proposed as important features for improving the experiences of families living with Lyme disease.
Keywords: Lyme disease; Lyme disease in Canada; Lyme families; children and Lyme disease; children with complex medical conditions; parents as advocates.