{"title":"Caregivers in implantable brain-computer interface research: a scoping review.","authors":"Nicolai Wohns, Natalie Dorfman, Eran Klein","doi":"10.3389/fnhum.2024.1490066","DOIUrl":null,"url":null,"abstract":"<p><strong>Introduction: </strong>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.</p><p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>The scoping review was conducted in June 2024 using the PubMed and Web of Science bibliographic databases. The articles were systematically searched using query terms for caregivers, family members, and guardians, and the results were quantitatively and qualitatively analyzed.</p><p><strong>Results: </strong>Our search yielded 315 unique studies, 78 of which were included in this scoping review. Thirty-four (43.6%) of the 78 articles mentioned the study participant's caregivers. We sorted these into 5 categories: Twenty-two (64.7%) of the 34 articles thanked caregivers in the acknowledgement section, 6 (17.6%) articles described the caregiver's role with regard to the consent process, 12 (35.3%) described the caregiver's role in the technical maintenance and upkeep of the BCI system or in other procedural aspects of the study, 9 (26.5%) discussed how the BCI enhanced participant communication and goal-directed behavior with the help of a caregiver, and 3 (8.8%) articles included general comments that did not fit into the other categories but still related to the importance of caregivers in the lives of the research participants.</p><p><strong>Discussion: </strong>Caregivers were mentioned in less than half of BCI studies in this review. The studies that offered more robust discussions of caregivers provide valuable insight into the integral role that caregivers play in supporting the study participants and the research process. Attention to the role of caregivers in successful BCI research studies can help guide the responsible development of future BCI study protocols.</p>","PeriodicalId":12536,"journal":{"name":"Frontiers in Human Neuroscience","volume":"18 ","pages":"1490066"},"PeriodicalIF":2.4000,"publicationDate":"2024-10-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11560881/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Frontiers in Human Neuroscience","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.3389/fnhum.2024.1490066","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/1/1 0:00:00","PubModel":"eCollection","JCR":"Q3","JCRName":"NEUROSCIENCES","Score":null,"Total":0}
引用次数: 0
Abstract
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. The articles were systematically searched using query terms for caregivers, family members, and guardians, and the results were quantitatively and qualitatively analyzed.
Results: Our search yielded 315 unique studies, 78 of which were included in this scoping review. Thirty-four (43.6%) of the 78 articles mentioned the study participant's caregivers. We sorted these into 5 categories: Twenty-two (64.7%) of the 34 articles thanked caregivers in the acknowledgement section, 6 (17.6%) articles described the caregiver's role with regard to the consent process, 12 (35.3%) described the caregiver's role in the technical maintenance and upkeep of the BCI system or in other procedural aspects of the study, 9 (26.5%) discussed how the BCI enhanced participant communication and goal-directed behavior with the help of a caregiver, and 3 (8.8%) articles included general comments that did not fit into the other categories but still related to the importance of caregivers in the lives of the research participants.
Discussion: Caregivers were mentioned in less than half of BCI studies in this review. The studies that offered more robust discussions of caregivers provide valuable insight into the integral role that caregivers play in supporting the study participants and the research process. Attention to the role of caregivers in successful BCI research studies can help guide the responsible development of future BCI study protocols.
期刊介绍:
Frontiers in Human Neuroscience is a first-tier electronic journal devoted to understanding the brain mechanisms supporting cognitive and social behavior in humans, and how these mechanisms might be altered in disease states. The last 25 years have seen an explosive growth in both the methods and the theoretical constructs available to study the human brain. Advances in electrophysiological, neuroimaging, neuropsychological, psychophysical, neuropharmacological and computational approaches have provided key insights into the mechanisms of a broad range of human behaviors in both health and disease. Work in human neuroscience ranges from the cognitive domain, including areas such as memory, attention, language and perception to the social domain, with this last subject addressing topics, such as interpersonal interactions, social discourse and emotional regulation. How these processes unfold during development, mature in adulthood and often decline in aging, and how they are altered in a host of developmental, neurological and psychiatric disorders, has become increasingly amenable to human neuroscience research approaches. Work in human neuroscience has influenced many areas of inquiry ranging from social and cognitive psychology to economics, law and public policy. Accordingly, our journal will provide a forum for human research spanning all areas of human cognitive, social, developmental and translational neuroscience using any research approach.