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Parenting When Children Have Lyme Disease: Fear, Frustration, Advocacy
Emilie M. Gaudet 1 , Odette N. Gould 1,*, Vett Lloyd 2
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; doi.org/10.3390/healthcare7030095
Abstract
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.
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.
Very good paper! When my physician expressed frustration of having to learn about Lyme disease from his patients in a webinar, the vague response was “Yes.” Canadian physicians that claim that U.S. labs are unreliable because they are for profit should be made to produce some peer-reviewed evidence of this from science and medical literature.
Physicians are not taught the variability of presenting clinical symptoms Lyme and tick-borne diseases can have [https://canlyme.com/lyme-basics/symptoms/] other than the much over-emphasized rash and facial palsy. That moves the flawed serology to the top of the hierarchy. The worst test is a false-negative one. Canadian physicians are not aware of October 2012 Health Canada Bulletin Vol. 22 Issue 4 …Limitations of Lyme testing. Kit. Cannot reliably be used to rule out Lyme disease.” http://www.hc-sc.gc.ca/dhp-mps/medeff/bulletin/carn-bcei_v22n4-eng.php. This is an ignored epidemic in Canada.