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Assessing health beliefs of women diagnosed and at-risk for Fabry disease

Geroe, Katherine (2014) Assessing health beliefs of women diagnosed and at-risk for Fabry disease. Master's Thesis, University of Pittsburgh. (Unpublished)

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Abstract

Previous published literature examining the impact of Fabry disease on female heterozygotes has suggested that women with this disease have a unique clinical relationship with the healthcare system and engage in Fabry disease medical management in a manner different from their male counterparts. The past history of labeling these women as carriers for the disease and asymptomatic has been proposed as one barrier to females’ participation in evaluation and monitoring for Fabry disease. However, the health beliefs unique to females with Fabry disease have not been thoroughly addressed in the literature. We attempted to examine this issue in more detail utilizing the Health Belief Model, a conceptual framework to assess perceived susceptibility to and severity of a disease, perceived benefit of engaging in a health behavior, and perceived barriers to performing this behavior. This study, part two of a larger three part project, examines the health beliefs of 44 adult females diagnosed with Fabry disease from across the United States through the means of a concurrent demographic survey and written, multiple choice and open-ended health belief questionnaire. Themes emerging from analysis of part one of the larger three part project, aimed at describing the health beliefs of ten females through qualitative thematic analysis, informed the design of the health belief questionnaire utilized in this study. This study characterizes the health beliefs of a larger population of adult females diagnosed with Fabry disease than previously assessed in part one of the study, specifically assessing the perceived severity, perceived susceptibility, and perceived benefits of and barriers to treatment, evaluation, and monitoring, and identifies strategies to address identified barriers, modifying variables, and cues to action to improve communication between healthcare providers and their female patients. Strategies developed to identify and address these barriers may be applied to other populations of females diagnosed with genetic conditions in which poor compliance for recommended evaluations and monitoring have been documented, providing a broader application and public health significance to the findings of this study.


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Details

Item Type: University of Pittsburgh ETD
Status: Unpublished
Creators/Authors:
CreatorsEmailPitt UsernameORCID
Geroe, Katherinekcgeroe11@gmail.com
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Thesis AdvisorLong, Katiekatie.long@chp.edu
Committee MemberGettig, Elizabethbgettig@pitt.eduBGETTIG
Committee MemberGrubs, Robinrgrubs@pitt.eduRGRUBS
Committee MemberShaffer, John Rjrs51@pitt.edu, john.r.shaffer@gmail.comJRS51
Committee MemberArnold, Georgiannegeorgianne.arnold@chp.edu
Date: 27 June 2014
Date Type: Publication
Defense Date: 11 April 2014
Approval Date: 27 June 2014
Submission Date: 7 April 2014
Access Restriction: No restriction; Release the ETD for access worldwide immediately.
Number of Pages: 155
Institution: University of Pittsburgh
Schools and Programs: Graduate School of Public Health > Genetic Counseling
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: Fabry disease, health beliefs, health belief model
Date Deposited: 27 Jun 2014 21:29
Last Modified: 15 Nov 2016 14:18
URI: http://d-scholarship.pitt.edu/id/eprint/21041

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