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Caregivers in implantable brain-computer interface research: a scoping review.
Nicolai Wohns1, Natalie Dorfman1, Eran Klein1,2
1Department of Philosophy, University of Washington, Seattle, WA, United States.
Frontiers in Human Neuroscience
|November 15, 2024
Summary
Caregivers are mentioned in less than half of implantable brain-computer interface (iBCI) studies. Robust discussions of caregiver roles highlight their integral support for participants and research, guiding future iBCI study protocols.
Area of Science:
- Neuroscience
- Biomedical Engineering
- Rehabilitation Technology
Background:
- Ethical considerations for caregivers in neurological research are recognized.
- The specific role of caregivers in brain-computer interface (BCI) research requires further investigation.
- Caregiver involvement is crucial for individuals with motor dysfunction, communication impairment, and blindness using BCI.
Purpose of the Study:
- To investigate the extent to which caregivers are mentioned in implantable BCI (iBCI) research publications.
- To analyze the nature of caregiver involvement described in iBCI studies.
- To identify gaps in reporting caregiver roles in BCI research.
Main Methods:
- A scoping review was conducted in June 2024.
- PubMed and Web of Science databases were systematically searched for relevant articles.
- Quantitative and qualitative analysis of 78 selected iBCI studies was performed using caregiver-related search terms.
Main Results:
- Caregivers were mentioned in 34 (43.6%) of the 78 reviewed iBCI studies.
- Mentions included acknowledgements (64.7%), consent processes (17.6%), technical/procedural support (35.3%), and enhanced communication (26.5%).
- A significant portion of studies did not extensively detail caregiver contributions.
Conclusions:
- Caregiver involvement is underreported in a substantial number of iBCI studies.
- Detailed reporting of caregiver roles offers valuable insights into participant support and research success.
- Emphasizing caregiver roles in BCI research can inform the responsible development of future study protocols.

