Denied Boarding in Health Care: A Critical Understanding of the Lived Experiences of Patients with Lyme Disease in Alberta

Patients with late-stage Lyme disease often express their feeling of being excluded from the benefits of Canada’s universal health care system. In Alberta, as elsewhere, patients struggle to access the health care system for diagnosis and treatment for late-stage Lyme disease. Little is known about the lived experiences of late-stage Lyme disease patients navigating Alberta’s health care system. This project gives patients with late-stage Lyme disease a voice to share their lived experience accessing health care within the provincial health authority in Alberta. No such study has been conducted within the Canadian context, and I hope to shed light on why doing so is imperative to help inform our publicly-funded health care system about the specific needs of patients with this diagnosis. The main objective of this study is to inform policy and practice that will optimize patient experience in trying to access health care. Through the critical examination of lived experiences of patients with diagnosed late-stage Lyme disease in Alberta, this research aims to provide a deeper understanding of the complex late-stage Lyme patient experience and how it is related to dominant medical policies and practices within an Alberta health care authority..Using hermeneutic philosophy and a modified version of Ricoeur’s theory of interpretation within a caring science paradigm, I explore meaning through an interpretive metaphor of a train journey to approach nine in-depth interviews with late-stage Lyme disease patients seeking access to care in Alberta. Using a critical social theory lens in my interpretation, I ask the question “What is the lived experience of patients diagnosed with late-stage Lyme disease in their attempts to access appropriate health care?” This qualitative study included participants iii from an Alberta-based General Internal Medicine Clinic who have been diagnosed and treated for late-stage Lyme disease by an Internist, experienced in diagnosing and treating Lyme disease. There are many public myths that surround late-stage Lyme disease, a contested diagnosis in present day discourse. Realizing that the reality of tomorrow can be formed based on the findings of today, I believe it’s necessary to contribute to the literature through a shared patient narrative that speaks the truth of lived experience. In my attempt to contribute to future historical resolution, I used a qualitative research methodology to help me reflect on a particular moment in time that represents truth for a group of marginalized patients. The findings of this research demonstrates how a sampling of patients with late-stage Lyme disease have faced barriers in communicating with health care professionals in Alberta, Canada, on their journey with this debilitating disease. Through a shared patient voice, I have identified ways in which this group of patients is blocked from access to appropriate health care despite their many attempts to do so within the healthcare system. I examine the political landscape of Lyme disease in Canada to identify sources of the barriers they face in communicating with health care professionals and posit some alternative approaches. Findings of this interpretive investigation offer insights into the traumatic journey experienced by late-stage Lyme disease patients in Alberta Health Services and provides suggestions for improved policy and practice initiatives that ensure inclusive health care for all Albertans.

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