Family and Professional Responses to BCIT Use
Research type
Research Study
Full title
Brain Computer Interface Technology Use Involving People with Disorders of Consciousness or Locked-in Syndrome: The Lived Experience of Families and the Impact of Person Centred Practice by the Interdisciplinary Team.
IRAS ID
272691
Contact name
Donna Brown
Contact email
Sponsor organisation
Ulster University
Duration of Study in the UK
4 years, 2 months, 0 days
Research summary
Research Summary:
A diagnosis of disorder of consciousness or locked-in syndrome has significant impact on the family; family members must not only come to terms with the diagnosis but also the realisation that their family member may require long term care. Despite the diagnosis, family members still have high hopes that they will eventually regain the ability to communicate with their relative. A brain computer interface (BCI) allows people to communicate without movement. BCI technology bypasses the communication pathways that usually uses nerves and muscles and may allow the user to communicate without movement, providing an alternative means of communication for those with physical impairment. By providing individuals with this alternative way of communicating it could have a significant impact on their quality of life, it may enable them to actively participate in decision-making regarding their care and may also provide a platform for them to communicate with their relatives. The purpose of this study is specifically to look at the human element of BCI technology i.e the lived of experience of the use of such technology for both the family and those involved in the person's care namely the interdisciplinary team.Lay summary of study results:
Please note we did not complete the MDT part due to the impact of COVID on clinical settings as we did not wish to burden the MDT, the data set for patients what challenging to obtain and we focused on this aspect as this was the most important element of the research.
This study explored how families experience the use of brain–computer interface (BCI) technology when their loved one is living with a disorder of consciousness or locked-in syndrome. Six family members took part in the research and shared their experiences through video and audio diaries over time. These personal accounts were analysed alongside computer-based analysis of facial expressions and discussions with families and stakeholders in a workshop.
Overall, the study showed that families experience a complex emotional journey when BCI technology is introduced. While the technology can offer hope for understanding or communication, it also brings uncertainty and emotional challenges.
Key findings
Four main themes emerged from the families’ experiences.
1. Living with uncertainty
Families described the experience as a constant tension between what is known and unknown about their loved one’s condition. The possibility that the person may have awareness created both hope and anxiety. Families often tried to interpret small changes in behaviour or responses and struggled with uncertainty about what the future might hold.
2. Moving from sorrow to hope
Participants described a profound sense of grief for the life their loved one had before the injury. However, the introduction of BCI technology sometimes created moments of hope and optimism. Families spoke about feeling proud of small achievements and motivated by the possibility that their loved one might still be able to communicate or respond in some way.
3. Reconnecting with the person
Many families described how the technology helped them feel closer to their loved one again. Even the possibility of awareness helped them recognise the person behind the injury and reaffirm their identity and personhood. This strengthened family relationships and reinforced the importance of treating the person with dignity and respect.
4. Planning for the future and taking action
As families learned more about their loved one’s condition, they began to think about how to support them going forward. Some described advocating for better care, seeking further rehabilitation opportunities, or considering how technology might support communication in the future. At the same time, families also worried about what might happen if access to technology stopped.Emotional experiences
Analysis of facial expressions in the video diaries showed that families often expressed mixed emotions, including sadness, concern, hope and determination. These emotional responses sometimes matched what participants said in their diaries and sometimes revealed feelings that were harder to express in words.
What the results show overall
The study highlights that caring for someone with a disorder of consciousness or locked-in syndrome is not only a medical experience but also a deeply relational and emotional one. The findings show that technologies such as BCI should not be viewed only as clinical tools but also as part of a wider process in which families seek meaning, connection and understanding.
Importantly, the results demonstrate the need for healthcare professionals to support families emotionally, communicate openly about uncertainty, and ensure that emerging technologies are introduced in a person-centred and ethically sensitive way.REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
21/YH/0173
Date of REC Opinion
23 Aug 2021
REC opinion
Favourable Opinion