Abstracts

Rationale: In the last decade, a number of eHealth tools have been developed to help with epilepsy self-management including educational programmes, smartphone applications, patient portals, and wearable devices. People with epilepsy (PWE) appear interested in using eHealth for epilepsy management, however uptake of eHealth thus far has been low. Deficits currently exist in understanding the factors influencing self-management behaviors and the provision of self-management information from healthcare providers (HCP). The aim of this study was to understand challenges faced by PWE, their caregivers, family members, and HCP in relation to epilepsy self-management and using eHealth.

Methods: Semi-structured interviews were performed by one PhD researcher (JB) using an interview guide, recorded, professionally transcribed and uploaded to NVivo 12 (QSR International, Melbourne, Australia). Participants were asked to describe and reflect upon their attitudes and behaviors surrounding epilepsy care, epilepsy self-management and eHealth tools. Braun & Clarke's reflexive thematic analysis was used to identify themes from reported experiences. Coding was performed by JB. Themes identified were mapped onto Michie et. al’s COM-B model of behavior to facilitate identification of future intervention functions to address challenges identified.

Results: Thirteen PWE, three caregivers, and nine HCPs participated in a semi-structured interview. Perceived challenges to epilepsy self-management and eHealth use from a HCP perspective included concerns about increased workload, lack of personnel and expertise in holistic aspects of chronic disease management, support for family members who provide care for PWE, lack of perceived willingness of PWE to engage in self-management and lack of perceived utility of currently available eHealth for self-management. From a PWE and carer perspective perceived challenges included memory and recall difficulties, lack of belief regarding the necessity for self-management, a lack of data integration across different platforms in currently available eHealth, eHealth being perceived as less personal than face to face interaction, and privacy concerns surrounding the use of healthcare data.

Conclusions: A number of challenges were identified from the perspectives of PWE, carers, and HCPs towards self-managing epilepsy through the use of eHealth tools. The challenges perceived as existing from PWE and carers centered around their reflective motivations and psychological capabilities. Challenges identified from the perspectives of HCPs involved environmental and social opportunities, in addition to reflective motivation and psychological capabilities. These results indicate that for eHealth to play a role in epilepsy self-management going forward, interventions must address the challenges, barriers and concerns identified by PWE, their caregivers and HCPs in this study.

Funding: Please list any funding that was received in support of this abstract.: This work has emanated from research supported in part by a research grant from Science Foundation Ireland (SFI) under grant number 16/RC/3948 and co-funded under the European Regional Development Fund and by FutureNeuro industry partners.