Challenges to Ethically Managing Parkinson Disease

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 co...
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Autor*in:	Shelagh T Shaw BSc (Hons), MSc [verfasserIn] Pirashanthie Vivekananda-Schmidt DPhil, C.Psychol, MEd, SFHEA [verfasserIn]

Format:	E-Artikel
Sprache:	Englisch

Erschienen:	2017

Übergeordnetes Werk:	In: Journal of Patient Experience - SAGE Publishing, 2016, 4(2017)
Übergeordnetes Werk:	volume:4 ; year:2017

Links:	Link aufrufen Link aufrufen Link aufrufen Journal toc Journal toc

DOI / URN:	10.1177/2374373517706836

Katalog-ID:	DOAJ035904313

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520			\|a 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.
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spelling	10.1177/2374373517706836 doi (DE-627)DOAJ035904313 (DE-599)DOAJ1550c8ba00734c8aab40523601b69ec3 DE-627 ger DE-627 rakwb eng R5-920 Shelagh T Shaw BSc (Hons), MSc verfasserin aut Challenges to Ethically Managing Parkinson Disease 2017 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier 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. Medicine (General) Pirashanthie Vivekananda-Schmidt DPhil, C.Psychol, MEd, SFHEA verfasserin aut In Journal of Patient Experience SAGE Publishing, 2016 4(2017) (DE-627)860138739 (DE-600)2857285-3 23743743 nnns volume:4 year:2017 https://doi.org/10.1177/2374373517706836 kostenfrei https://doaj.org/article/1550c8ba00734c8aab40523601b69ec3 kostenfrei https://doi.org/10.1177/2374373517706836 kostenfrei https://doaj.org/toc/2374-3743 Journal toc kostenfrei https://doaj.org/toc/2374-3735 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_374 GBV_ILN_602 GBV_ILN_2014 GBV_ILN_2034 GBV_ILN_2068 GBV_ILN_2704 GBV_ILN_2707 GBV_ILN_2890 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4242 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 4 2017
allfields_unstemmed	10.1177/2374373517706836 doi (DE-627)DOAJ035904313 (DE-599)DOAJ1550c8ba00734c8aab40523601b69ec3 DE-627 ger DE-627 rakwb eng R5-920 Shelagh T Shaw BSc (Hons), MSc verfasserin aut Challenges to Ethically Managing Parkinson Disease 2017 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier 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. Medicine (General) Pirashanthie Vivekananda-Schmidt DPhil, C.Psychol, MEd, SFHEA verfasserin aut In Journal of Patient Experience SAGE Publishing, 2016 4(2017) (DE-627)860138739 (DE-600)2857285-3 23743743 nnns volume:4 year:2017 https://doi.org/10.1177/2374373517706836 kostenfrei https://doaj.org/article/1550c8ba00734c8aab40523601b69ec3 kostenfrei https://doi.org/10.1177/2374373517706836 kostenfrei https://doaj.org/toc/2374-3743 Journal toc kostenfrei https://doaj.org/toc/2374-3735 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_374 GBV_ILN_602 GBV_ILN_2014 GBV_ILN_2034 GBV_ILN_2068 GBV_ILN_2704 GBV_ILN_2707 GBV_ILN_2890 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4242 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 4 2017
allfieldsGer	10.1177/2374373517706836 doi (DE-627)DOAJ035904313 (DE-599)DOAJ1550c8ba00734c8aab40523601b69ec3 DE-627 ger DE-627 rakwb eng R5-920 Shelagh T Shaw BSc (Hons), MSc verfasserin aut Challenges to Ethically Managing Parkinson Disease 2017 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier 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. Medicine (General) Pirashanthie Vivekananda-Schmidt DPhil, C.Psychol, MEd, SFHEA verfasserin aut In Journal of Patient Experience SAGE Publishing, 2016 4(2017) (DE-627)860138739 (DE-600)2857285-3 23743743 nnns volume:4 year:2017 https://doi.org/10.1177/2374373517706836 kostenfrei https://doaj.org/article/1550c8ba00734c8aab40523601b69ec3 kostenfrei https://doi.org/10.1177/2374373517706836 kostenfrei https://doaj.org/toc/2374-3743 Journal toc kostenfrei https://doaj.org/toc/2374-3735 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_374 GBV_ILN_602 GBV_ILN_2014 GBV_ILN_2034 GBV_ILN_2068 GBV_ILN_2704 GBV_ILN_2707 GBV_ILN_2890 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4242 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 4 2017
allfieldsSound	10.1177/2374373517706836 doi (DE-627)DOAJ035904313 (DE-599)DOAJ1550c8ba00734c8aab40523601b69ec3 DE-627 ger DE-627 rakwb eng R5-920 Shelagh T Shaw BSc (Hons), MSc verfasserin aut Challenges to Ethically Managing Parkinson Disease 2017 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier 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. Medicine (General) Pirashanthie Vivekananda-Schmidt DPhil, C.Psychol, MEd, SFHEA verfasserin aut In Journal of Patient Experience SAGE Publishing, 2016 4(2017) (DE-627)860138739 (DE-600)2857285-3 23743743 nnns volume:4 year:2017 https://doi.org/10.1177/2374373517706836 kostenfrei https://doaj.org/article/1550c8ba00734c8aab40523601b69ec3 kostenfrei https://doi.org/10.1177/2374373517706836 kostenfrei https://doaj.org/toc/2374-3743 Journal toc kostenfrei https://doaj.org/toc/2374-3735 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_374 GBV_ILN_602 GBV_ILN_2014 GBV_ILN_2034 GBV_ILN_2068 GBV_ILN_2704 GBV_ILN_2707 GBV_ILN_2890 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4242 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 4 2017
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title	Challenges to Ethically Managing Parkinson Disease
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title_sort	challenges to ethically managing parkinson disease
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title_auth	Challenges to Ethically Managing Parkinson Disease
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.
abstractGer	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.
abstract_unstemmed	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.
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