Shaw, S.T. and Vivekananda-Schmidt, P. orcid.org/0000-0003-1629-6574 (2017) Challenges to ethically managing Parkinson disease: an interview study of patient perspectives. Journal of Patient Experience, 4 (4). pp. 191-196. ISSN 2374-3735
Abstract
This study investigated the current ethical issues in relation to recognizing and managing Parkinson disease (PD) from the patient’s perspective.
Methods: Twelve patients living with PD who were from the medical school’s Patients as Educators program were recruited. Semistructured interviews were conducted to record patient experiences in order to identify potential ethical issues in relation to recognizing and managing PD. Thematic analysis was applied to the interview transcripts.
Results: Four key themes emerged from the interviews. These were information giving, coping, identity, and future medical treatment. These data indicate variable experiences in relation to communication between patient and health-care professional, better support for both planning end-of-life decisions and in coping with the disease’s impacts on their identity. Patients with PD also struggle with access to support services and support for main carer.
Implications: To ensure ethical practice in supporting patients with PD, these emerging themes need further investigation; and management guidelines relevant to PD must be informed by research in this area to ensure ethical care of patients with PD, their carers, and families.
Metadata
Item Type: | Article |
---|---|
Authors/Creators: |
|
Copyright, Publisher and Additional Information: | © The Author(s) 2017. This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 3.0 License (http://www.creativecommons.org/licenses/by-nc/3.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage). |
Keywords: | Parkinson disease; neurodegenerative disorders; ethics; patient perspectives |
Dates: |
|
Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > The Medical School (Sheffield) > Academic Unit of Medical Education (Sheffield) |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 19 Jul 2017 14:44 |
Last Modified: | 03 Aug 2023 11:49 |
Status: | Published |
Publisher: | SAGE Publications |
Refereed: | Yes |
Identification Number: | 10.1177/2374373517706836 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:119123 |