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Open AccessArticle

Parenting When Children Have Lyme Disease: Fear, Frustration, Advocacy

1
Department of Psychology, Mount Allison University, Sackville, NB E4L 1C7 Canada
2
Department of Biology, Mount Allison University, Sackville, NB E4L 1G7 Canada
*
Author to whom correspondence should be addressed.
Healthcare 2019, 7(3), 95; https://doi.org/10.3390/healthcare7030095
Received: 30 June 2019 / Revised: 1 August 2019 / Accepted: 3 August 2019 / Published: 8 August 2019
(This article belongs to the Special Issue Lyme Disease and Related Tickborne Infections)
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. View Full-Text
Keywords: Lyme disease; children and Lyme disease; Lyme families; children with complex medical conditions; parents as advocates; Lyme disease in Canada Lyme disease; children and Lyme disease; Lyme families; children with complex medical conditions; parents as advocates; Lyme disease in Canada
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Gaudet, E.M.; Gould, O.N.; Lloyd, V. Parenting When Children Have Lyme Disease: Fear, Frustration, Advocacy. Healthcare 2019, 7, 95.

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