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  1. Article ; Online: Extending patient-centred communication to non-speaking intellectually disabled persons.

    Peabody Smith, Ally / Feinsinger, Ashley

    Journal of medical ethics

    2024  

    Abstract: Patient-centred communication is widely regarded as a best practice in contemporary medical care, both in terms of maximising health outcomes and respecting persons. However, not all patients communicate in ways that are easily understood by clinicians ... ...

    Abstract Patient-centred communication is widely regarded as a best practice in contemporary medical care, both in terms of maximising health outcomes and respecting persons. However, not all patients communicate in ways that are easily understood by clinicians and other healthcare professionals. This is especially so for patients with non-speaking intellectual disabilities. We argue that assumptions about intellectual disability-including those in diagnostic criteria, providers' implicit attitudes and master narratives of disability-negatively affect communicative approaches towards intellectually disabled patients.
    Language English
    Publishing date 2024-02-19
    Publishing country England
    Document type Journal Article
    ZDB-ID 194927-5
    ISSN 1473-4257 ; 0306-6800
    ISSN (online) 1473-4257
    ISSN 0306-6800
    DOI 10.1136/jme-2023-109671
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    In stock of ZB MED Cologne/Königswinter

    Zs.A 1163: Show issues Location:
    Je nach Verfügbarkeit (siehe Angabe bei Bestand)
    bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular
    Jg. 1995 - 2021: Lesesall (1.OG)
    ab Jg. 2022: Lesesaal (EG)

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  2. Article ; Online: Two Practices to Improve Informed Consent for Intraoperative Brain Research.

    Peabody Smith, Ally / Pouratian, Nader / Feinsinger, Ashley

    Neurosurgery

    2023  Volume 92, Issue 5, Page(s) e97–e101

    Abstract: As the clinical applications of neurologically implanted devices increase, so do opportunities for intracranial investigations in human patients. In some of these studies, patients participate in research during their awake brain surgery, performing ... ...

    Abstract As the clinical applications of neurologically implanted devices increase, so do opportunities for intracranial investigations in human patients. In some of these studies, patients participate in research during their awake brain surgery, performing additional tasks without the prospect of personal therapeutic benefit. These intraoperative studies raise persistent ethical challenges because they are conducted during a clinical intervention, in a clinical space, and often by the treating clinician. Whether intraoperative research necessitates innovative informed consent methods has become a pressing conversation. Familiar worries about inadequate participant understanding and undue influence dominate these discussions, as do calls for increasing information retention (e.g., using methods such as "teach-back") and minimizing enrollment pressures (e.g., preventing surgeons from consenting their own patients). However, efforts have yet to inspire widespread consent practices that mirror the scope of ethical concern. Focusing on awake, intraoperative intracranial research, we identify 2 underappreciated problems in approaches to informed consent. The first is epistemic: Many practices do not fully consider when and under which conditions participants are adequately informed. The second is relational: Many practices do not fully consider the effects of trust between patient-participants and surgeon-researchers. In exploring these concerns, we also raise questions about whether additional steps beyond preoperative consent may improve the process because decisions at this time are decoupled from both the experiences and vulnerability of awake brain surgery. Motivated by these considerations, we propose 2 practices: first, requiring a third-party patient advocate in initial consent and second, requiring verbal intraoperative reconsent before initiating research.
    MeSH term(s) Humans ; Informed Consent ; Brain
    Language English
    Publishing date 2023-01-04
    Publishing country United States
    Document type Journal Article
    ZDB-ID 135446-2
    ISSN 1524-4040 ; 0148-396X
    ISSN (online) 1524-4040
    ISSN 0148-396X
    DOI 10.1227/neu.0000000000002336
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    In stock of ZB MED Cologne/Königswinter

    Zs.A 1424: Show issues Location:
    Je nach Verfügbarkeit (siehe Angabe bei Bestand)
    bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular
    Jg. 1995 - 2021: Lesesall (1.OG)
    ab Jg. 2022: Lesesaal (EG)
    Zs.MO 539: Show issues

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  3. Article ; Online: Disentangling Function from Benefit: Participant Perspectives from an Early Feasibility Trial for a Novel Visual Cortical Prosthesis.

    Levy, Lilyana / Ebadi, Hamasa / Peabody Smith, Ally / Taiclet, Lauren / Pouratian, Nader / Feinsinger, Ashley

    AJOB neuroscience

    2023  , Page(s) 1–19

    Abstract: Visual cortical prostheses (VCPs) have the potential to provide artificial vision for visually impaired persons. However, the nature and utility of this form of vision is not yet fully understood. Participants in the early feasibility trial for the Orion ...

    Abstract Visual cortical prostheses (VCPs) have the potential to provide artificial vision for visually impaired persons. However, the nature and utility of this form of vision is not yet fully understood. Participants in the early feasibility trial for the Orion VCP were interviewed to gain insight into their experiences using artificial vision, their motivations for participation, as well as their expectations and assessments of risks and benefits. Analyzed using principles of grounded theory and an interpretive description approach, these interviews yielded six themes, including: the irreducibility of benefit to device functionality, mixed expectations for short-term device functionality and long-term technological advancement of visual prostheses, and a broad range of risks, concerns, and fears related to trial participation. We argue that these narratives motivate a nuanced set of ethical considerations related to the complex relationship between functionality and benefit, the intersection of user experience with disability justice, and the import of expectations and indirect risks on consent.
    Language English
    Publishing date 2023-10-09
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2576262-X
    ISSN 2150-7759 ; 2150-7740
    ISSN (online) 2150-7759
    ISSN 2150-7740
    DOI 10.1080/21507740.2023.2257152
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    In stock of ZB MED Cologne/Königswinter

    Zs.A 6886: Show issues Location:
    Je nach Verfügbarkeit (siehe Angabe bei Bestand)
    bis Jg. 2021: Bestellungen von Artikeln über das Online-Bestellformular
    ab Jg. 2022: Lesesaal (EG)

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  4. Article ; Online: "They were already inside my head to begin with": Trust, Translational Misconception, and Intraoperative Brain Research.

    Peabody Smith, Ally / Taiclet, Lauren / Ebadi, Hamasa / Levy, Lilyana / Weber, Megan / Caruso, Eugene M / Pouratian, Nader / Feinsinger, Ashley

    AJOB empirical bioethics

    2022  Volume 14, Issue 2, Page(s) 111–124

    Abstract: Background: ...

    Abstract Background:
    MeSH term(s) Humans ; Informed Consent ; Trust ; Attitude ; Motivation ; Brain
    Language English
    Publishing date 2022-09-22
    Publishing country United States
    Document type Journal Article ; Research Support, N.I.H., Extramural
    ZDB-ID 2763190-4
    ISSN 2329-4523 ; 2329-4515
    ISSN (online) 2329-4523
    ISSN 2329-4515
    DOI 10.1080/23294515.2022.2123869
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    In stock of ZB MED Cologne/Königswinter

    Zs.A 6890: Show issues Location:
    Je nach Verfügbarkeit (siehe Angabe bei Bestand)
    bis Jg. 2021: Bestellungen von Artikeln über das Online-Bestellformular
    ab Jg. 2022: Lesesaal (EG)

    Order via subito

    This service is chargeable due to the Delivery terms set by subito. Orders including an article and supplementary material will be classified as separate orders. In these cases, fees will be demanded for each order.

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