Edna Gonçalves

In a completely locked-in state (CLIS), often resulting from traumatic brain injury or neurodegenerative diseases like amyotrophic lateral sclerosis (ALS), patients lose voluntary muscle control, including eye movement, making communication impossible. Brain-computer interfaces (BCIs) offer hope for restoring communication, but achieving reliable communication with these patients remains a challenge. This study details the design, testing, and comparison of nine visuo-auditory P300-based BCIs (combining different visual and auditory stimuli and different visual layouts) with a CLIS patient over ten months. The aim was to evaluate the impact of these stimuli in achieving effective communication. While some interfaces showed promising progress, achieving up to 90% online accuracy in one session, replicating this success in subsequent sessions proved challenging, with the average online accuracy across all sessions being 56.4 ± 15.2%. The intertrial variability in EEG signals and the low discrimination between target and non-target events were the main challenge. Moreover, the lack of communication with the patient made BCI design a challenging blind trial-and-error process. Despite the inconsistency of the results, it was possible to infer that the combination of visual and auditory stimuli had a positive impact, and that there was an improvement over time.

Introduction: Palliative care continues to be misunderstood within the world of healthcare. Palliative care professionals are key agents for promoting a greater understanding of their field. This study aims to examine the messages, both implicit and explicit, that palliative care professionals transmit about themselves and their work within their teams and to other health professionals. Methods: Focused ethnographic secondary analysis, exploring the interactions of palliative care professionals as it happens at everyday work. An inductive thematic analysis was developed from 242 h of observation of the daily work practices of palliative care professionals, focusing on their interactions with others. The data was coded without predefined categories, and the analysis was performed independently by two researchers. Results: Palliative professionals communicate that they are part of an active team working in an organized manner. They value and feel proud of their work. Despite the intensity of their work, these professionals are always available to others, to whom they demonstrate a clear professional identity. They convey their expertise in alleviating suffering, respectful behavior and collaborative ability. Conclusion: Professionals, in their daily work, communicate through their messages the essence of palliative care. It is essential that palliative care professionals perceive themselves as potential influencers and explicitly transmit the reasons for their intervention. Otherwise, others will perpetuate the myths, misunderstandings, and lack of a positive reputation for palliative care.