Front Hum Neurosci
October 2024
Introduction: While the ethical significance of caregivers in neurological research has increasingly been recognized, the role of caregivers in brain-computer interface (BCI) research has received relatively less attention.
Objectives: This report investigates the extent to which caregivers are mentioned in publications describing implantable BCI (iBCI) research for individuals with motor dysfunction, communication impairment, and blindness.
Methods: The scoping review was conducted in June 2024 using the PubMed and Web of Science bibliographic databases.
Introduction: Deep brain stimulation (DBS) is approved under a humanitarian device exemption to manage treatment-resistant obsessive-compulsive disorder (TR-OCD) in adults. It is possible that DBS may be trialed or used clinically off-label in children and adolescents with TR-OCD in the future. DBS is already used to manage treatment-resistant childhood dystonia.
View Article and Find Full Text PDFThe ongoing debate within neuroethics concerning the degree to which neuromodulation such as deep brain stimulation (DBS) changes the personality, identity, and agency (PIA) of patients has paid relatively little attention to the perspectives of prospective patients. Even less attention has been given to pediatric populations. To understand patients' views about identity changes due to DBS in obsessive-compulsive disorder (OCD), the authors conducted and analyzed semistructured interviews with adolescent patients with OCD and their parents/caregivers.
View Article and Find Full Text PDFBackground: Personalized risk (PR) estimates may enhance clinical decision making and risk communication by providing individualized estimates of patient outcomes. We explored stakeholder attitudes toward the utility, acceptability, usefulness and best-practices for integrating PR estimates into patient education and decision making about Left Ventricular Assist Device (LVAD).
Methods And Results: As part of a 5-year multi-institutional AHRQ project, we conducted 40 interviews with stakeholders (physicians, nurse coordinators, patients, and caregivers), analyzed using Thematic Content Analysis.