Abstract
This thesis examines how families experience the introduction and use of brain–computer interface (BCI) technology with individuals with disorders of consciousness (DOC) or locked-in syndrome (LIS). Positioned at the intersection of neurotechnology, ethics, and person-centred care, it addresses a significant international gap: no previous research has explored families’ experiences during BCI use in this context. Guided by Gadamer’s hermeneutic philosophy (Gadamer 2013) and underpinned by the Person-Centred Practice Framework (McCormack and McCance 2021), the study adopts an interpretivist, relational, and ethically grounded approach.A multimodal, narrative-based methodology was employed. Purposive sampling recruited six family participants, who contributed 18 video diaries and three audio diaries. These narratives were analysed hermeneutically alongside automated facial expression analysis (Noldus FaceReader™ and EmoNet), enabling an integrated exploration of emotional and interpretive meaning. A deliberative workshop involving families and stakeholders supported collaborative interpretation and the co-generation of person-centred recommendations for practice, policy, education, and research.
Four core themes emerged: tension between the known and unknown, from unique sense of sorrow to hope, reconnection to person and personhood, and planning for the future/tacking action, with balance identified as an overarching integrative theme. These findings reveal caregiving as a dynamic process of relational adaptation, illustrating how families navigate uncertainty, sustain connection, and construct meaning within technologically mediated care.
Contributions to Knowledge
•Empirical: First real-time evidence of family experiences during BCI use in DOC/LIS care.
•Conceptual: Introduction of the Relational Adaptation in Technology-Mediated Care framework.
•Theoretical: Extension of hermeneutic and person-centred theory to technologically mediated encounters.
•Methodological: Advancement of a multimodal hermeneutic–narrative–emotional analytic approach.
•Practical: Guidance for clinicians, educators, and policymakers on ethical, relational, person-centred BCI implementation.
Overall, the study reframes BCI-mediated assessment and communication as relational and ethical encounters, affirming that care and understanding emerge through dialogue, presence, and shared humanity.
Thesis is embargoed until 31 March 2028
| Date of Award | Mar 2026 |
|---|---|
| Original language | English |
| Supervisor | Debbie Goode (Supervisor), Neal Cook (Supervisor) & Damien Coyle (Supervisor) |
Keywords
- person-centred care
- family caregiving
- hermeneutics
- narrative inquiry
- technology-mediated care
- relational adaptation
- neurotechnology ethics
- facial expression analysis
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