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Mind the gap: Exploring information gaps for the development of an online resource hub for epilepsy and depression
Rachel E Crooks1, Meaghan Bell1, Scott B Patten2
1Department of Clinical Neurosciences, Cumming School of Medicine, University of Calgary, Room 1195, Foothills Hospital, 1403-29 Street NW, Calgary, Alberta T2N 2T9, Canada; Hotchkiss Brain Institute, Cumming School of Medicine, University of Calgary, Health Research Innovation Centre, Room 1A10, 3330 Hospital Drive NW, Calgary, Alberta T2N 4N1, Canada.
Purpose:
Depression is common in epilepsy, and is often under-detected and under-treated. The motivation to create a depression eHub for persons with epilepsy is to connect them to the best available online resources to effectively manage their depression. The study sought to: 1) identify facilitators and barriers to accessing resources related to management of epilepsy and/or depression and 2) discuss gaps in available resources (free and in the public domain) and 3) identify suggestions for future content.
Methods:
Semi-structured interviews were conducted with ten patients with epilepsy and a history of depression. Using inductive analysis, two team members engaged in a process of textual open-coding utilizing a conventional content analysis approach whereby content was conceptually clustered based on the research questions. A phenomenological framework was applied to describe the phenomenon of online health resource access and utilization from the perspective of people with epilepsy.
Results:
Facilitators to the use of online resources included information credibility, thoughtful organization, and accessibility of resources. Barriers included difficulties finding and piecing together information from many different sites. Patients reported difficulty having the motivation to seek out resources while depressed, which was compounded by feelings of stigma, social isolation, and lack of control. Gaps in resources included a lack of information about living with epilepsy day-to-day and resources for family and friends. Suggested content included information to raise awareness about epilepsy and depression; questionnaires to screen for symptoms of depression; stories of other patients with epilepsy and depression via video or moderated forums; current research and news; local community resources; and tools and strategies to manage depression in epilepsy.
Conclusions:
There is a gap in accessible resources for patients with epilepsy and depression as well as barriers that include epilepsy-related restrictions, depression-related impairments, lack of awareness, and stigmatization. These results should be used to guide the development of e-Health resources for patients with epilepsy.