Interrogating the promise of technology in epilepsy care: systematic, hermeneutic review

Abstract

Technology development is gathering pace in epilepsy with seizure detection devices promising to transform self‐care and service provision. However, such accounts often neglect the uncertainties, displacements and responsibilities that technology‐supported care generates. This review brings together a heterogeneous literature, identified through systematic searches in 8 databases and snowball searching, to interrogate how technology becomes positioned in epilepsy care. We took a hermeneutic approach in our analysis of the 206 included articles, which resulted in the development of a conceptual framework surfacing the underlying logics by which technology‐supported epilepsy care is organised. Each of these logics enacts different techno‐scientific futures and carries specific assumptions about how (often imagined) ‘users’ and their bodies become co‐constituted. Our review shows that studies in this area remain primarily deterministic and technology‐focused. Few draw phenomenological insights on lived experiences with epilepsy or use social theory to problematise the role of technology. We propose future directions for sociotechnical, theory‐driven studies of technology in epilepsy care and offer a framework transferable across other long‐term conditions.

Parental preferences for seizure detection devices: A discrete choice experiment

“…5 Most SDD studies have focused on technological aspects and placed less emphasis on the user's role in coshaping SDDs. 10 People with epilepsy and caregivers have expressed the importance of an accurate device, 5,11,12 but little is known about how they evaluate the balance between sensitivity and positive predictive value (PPV) while accounting for individual seizure frequency. Previous research among potential users showed that design aspects also matter.…”

Closed-Loop Neuromodulation and Self-Perception in Clinical Treatment of Refractory Epilepsy

“…Conceptual neuroethical concerns may require revisiting as newer closed-loop devices are developed that involve less direct human oversight and/or target other neural systems, such as systems for mood or behavioral control. Nonetheless, our research illustrates that the empirical search for such effects must be situated within the context of chronic illness (Gilbert et al 2019;Papoutsi et al 2021).…”

Patient experiences of resection versus responsive neurostimulation for drug-resistant epilepsy

“…Clinicians of varying experience and expertise may be unsure how best to counsel patients and caregivers, given the prognostic uncertainty and technical complexity of surgical interventions for epilepsy. Here, effective counseling may be bolstered by deep insight into in patient and caregiver perspectives during and after the surgical evaluation process [ 8 ]. However, we have limited data into patient and caregiver experiences during the surgical evaluation process [ 8 – 12 ].…”

“…Here, effective counseling may be bolstered by deep insight into in patient and caregiver perspectives during and after the surgical evaluation process [ 8 ]. However, we have limited data into patient and caregiver experiences during the surgical evaluation process [ 8 – 12 ].…”