Integrating the Rare Disease Context into Medical Training Models
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Authors
Bruce-Lepage, Celine
Date
Type
thesis
Language
eng
Keyword
Rare Disease , Education , Medical Education , Prader Willi Syndrome
Alternative Title
Abstract
Patient centred care (PCC) and evidence-based medicine (EBM) are cornerstones in the education of primary care providers. While teaching these approaches are intended to improve patient care, EBM and PCC were not developed with rare disease (RD) in mind, and therefore the tenets of those models may not hold up as expected in the treatment of RD. In the RD context patients are often more informed about both the disease and illness experience (Babac et al., 2019); there are rarely guidelines to evaluate, and physicians often have very limited knowledge about the disease. This presents a new problem to the current notions of expertise and care. The purpose of this research is to obtain caregiver perspectives about RD healthcare management and how those perspectives can improve RD healthcare by better integrating the RD context into existing models used in medical training (i.e. PCC and EBM). This study used a Qualitative Descriptive Design (Sandelowski, 2000) and data was collected through twelve semi-structured interviews. The analysis and the results, represent a complex interrelated system where a parent must navigate, learn, and manage their way through to secure high quality care. The findings in this study could inform the overall system in RD healthcare.
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Queen's University's Thesis/Dissertation Non-Exclusive License for Deposit to QSpace and Library and Archives Canada
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Intellectual Property Guidelines at Queen's University
Copying and Preserving Your Thesis
This publication is made available by the authority of the copyright owner solely for the purpose of private study and research and may not be copied or reproduced except as permitted by the copyright laws without written authority from the copyright owner.
ProQuest PhD and Master's Theses International Dissemination Agreement
Intellectual Property Guidelines at Queen's University
Copying and Preserving Your Thesis
This publication is made available by the authority of the copyright owner solely for the purpose of private study and research and may not be copied or reproduced except as permitted by the copyright laws without written authority from the copyright owner.