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Author ORCID Identifier

https://orcid.org/0000-0002-3898-9884

AccessType

Open Access Dissertation

Document Type

dissertation

Degree Name

Doctor of Philosophy (PhD)

Degree Program

Education

Year Degree Awarded

2022

Month Degree Awarded

May

First Advisor

Linda Griffin

Second Advisor

Gretchen Rossman

Third Advisor

Daniel Gerber

Subject Categories

Community-Based Research | Immune System Diseases | Other Education | Other Immunology and Infectious Disease | Other Mental and Social Health | Other Public Health | Other Social and Behavioral Sciences | Other Sociology | Public Health Education and Promotion | Quantitative, Qualitative, Comparative, and Historical Methodologies | Virus Diseases

Abstract

This is a mixed methods investigation of how chronic Lyme disease, including Lyme-like diseases and co-infections, affects the quality of life of women who have chronic Lyme. Both quantitative and qualitative methods were used during three phases of research: a 91-question survey instrument followed by focus group discussions and written narratives. The research considered the socioeconomic impact on quality of life in five areas: obtaining a diagnosis, relationships and personal support systems, struggles with the medical system, the ability to work, and access to treatment. There were 500 responses to the survey, of which 373 were analyzed; 11 participants in the focus groups; and 22 written narratives. The data collected during the quantitative phase supported the design of the qualitative phases and added validity to the findings. The research demonstrated that chronic Lyme disease has a predominantly negative impact on women’s quality of life across all five domains. Among the consequences highlighted by the survey responses were difficulty obtaining a timely diagnosis (72% had multiple misdiagnoses before being diagnosed); stressed relationships (57% reported that family and friends do not understand the impact of the disease); difficulty securing appropriate treatment (86% indicated that primary physicians did not know numerous treatment options); adverse impact on professional lives (75% reported that Lyme interfered with their ability to work); and difficulty finding and paying for treatment (54% did not see a specialist due to affordability). Through collecting and analyzing the data, it also became increasingly apparent that the medical industry operates in a way that does not believe chronic Lyme disease exists. In both focus groups and narratives, most participants recounted experiences of repeatedly having their concerns and symptoms trivialized, dismissed, or disbelieved by health care providers; the combination of deteriorating health and gaslighting led to a sense of worthlessness, feelings of hopelessness, episodes of depression, and more. Financial stability and relationships suffered, sometimes with devastating impact. While my own struggle with chronic Lyme disease was the impetus for this study, the research findings demonstrate how pervasive and deep the challenges are, with consistently negative socioeconomic consequences for women’s quality of life.

DOI

https://doi.org/10.7275/28597619

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