Mind the gap: Exploring information gaps for the development of an online resource hub for epilepsy and depression
Abstract
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.
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Depressive symptoms and low mood, as measured by validated scales, have been reported as barriers for people to access and use web-based resources.
“Depressive symptoms [78] and low mood [79], as measured by validated scales, have been reported as barriers for people to access and use web-based resources.”
From Barriers to and facilitators of user engagement with digital mental health interventions: Systematic review (2021) · cites this paper as [78]
In 6 studies, concern about social avoidance (people using self-guided interventions instead of in-person clinic therapy or group sessions) was a barrier among both users and service providers.
“In 6 studies, a noted barrier among both users and service providers was a concern about social avoidance, that is, a concern that people might use self-guided interventions in lieu of coming into a clinic in person and engaging in therapy or group sessions [78,104,122,133,138,195].”
From Barriers to and facilitators of user engagement with digital mental health interventions: Systematic review (2021) · cites this paper as [78]
Usability issues formed a barrier to engaging with an intervention.
“Usability issues formed a barrier to engaging with an intervention [46,50, 78,84,148-150,157,159,170,224-228].”
From Barriers to and facilitators of user engagement with digital mental health interventions: Systematic review (2021) · cites this paper as [78]
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“Examples of usability issues were difficulty finding information in an intervention [78], a time-consuming process to log in to an intervention [159], and difficulty navigating within an intervention [150,157].”
BackgroundInfluential
- Authors
- Crooks, R. E., Bell, M., Patten, S. B., Wiebe, S., Holroyd-Leduc, J., Bulloch, A. G., Macrodimitris, S., Mackie, A., Sauro, K. M., Federico, P., & Jetté, N.
- Affiliations
- University of Calgary (CA)
- Corresponding author
- Jetté, Nathalie
- ORCID
- Venue
- Epilepsy & Behavior
- Publisher
- Elsevier BV
- Published
- 2017-05
- Volume
- 70
- Issue
- Pt A
- Pages
- 18-23
- ISSN
- 1525-5050 (ISSN-L)
- OpenAlex
- W2605895079
- Cited by
- 12
- References
- 25
- Citations by year
- 2025: 1 · 2024: 1 · 2023: 1 · 2021: 4 · 2020: 1 · 2019: 2 · 2018: 2
- FWCI
- 2.21
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Epilepsy & Behavior (publishedVersion, public-domain)
- PubMed (publishedVersion)
- Funders
- University of Calgary Hotchkiss Brain Institute (10011023)
- Mathison Centre for Mental Health Research and Education (10008421)
- Pfizer Canada (10008421)
- Hotchkiss Brain Institute Neuro (10011023)
- Mental Health Research Clinic Initiative
- Topics
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Health Sciences › Medicine › Psychiatry and Mental health › Epilepsy research and treatment
- Social Sciences › Psychology › Social Psychology › Mental Health Treatment and Access
- Keywords
- epilepsy, depression, online health resources, e-health, information gap, patient perspectives, stigma, social isolation, depression screening, family and friend support, access to resources
- MeSH terms
- Adult, Depression, Epilepsy, Female, Health Resources, Humans, Interview, Psychological, Male, Middle Aged, Motivation, Online Systems, Surveys and Questionnaires, Registries, Telemedicine, Health Information Exchange
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