Brain-Computer Interface Technology Use Involving People with Disorders of Consciousness and Locked-in Syndrome: The Lived Experience of Families.

Brain computer interfaces (BCI) are systems that use electrodes to measure electroencephalography (EEG), which are translated into commands to operate computer-controlled devices or potential enable movement independent communication. BCI bypasses the normal neuromuscular communication pathways and may allow the user to communicate without movement, thereby providing an alternative communication channel for those with physical impairment that does not depend on neuromuscular control. Its use could be incorporated into rehabilitation programmes and daily life, thereby potentially improving the quality of life of the person and provide the much-needed communication channel desired by their family.
Objective:
To explore the lived experience of the family on the use of BCI technology on people with disorders of consciousness or locked-in syndrome to identify their needs.
Material & Methods:
Data collected using video diaries to capture the insights and experiences of families who have used BCIT.
Results:
Tentative themes from data obtained to date:
• Hopefulness
• Encouragement
• Connectedness
• Sense of loss
• Disappointment
• Disheartened
Conclusion:
It may to be too soon to draw accurate conclusions, However, early data suggests there are additional support needs for families whilst their loved ones are trialling BCIT in order that their emotional needs are attended in a person-centred manner. Emergent technologies yield great opportunities for enhancing human interaction, but also create a need for us to consider the wider impact and how their use must be supported in practice.