Patient experiences of virtual care across specialist neuroscience and psychiatry clinics related to the second wave of the COVID-19 pandemic in Calgary, Alberta.

Purpose: The emergence of the COVID-19 (SARS-CoV-2) pandemic has led to public health restrictions and a shift towards virtual care and telehealth. The aim of this study was to explore barriers and facilitators of virtual care from the perspective of neurological and psychiatric patients. Methods: One-on-one interviews were conducted remotely using telephone and online video teleconferencing. There was a total of 57 participants, and a thematic content analysis was conducted using NVivo software. Results: The two main themes were (1) virtual health service delivery and (2) virtual physician/patient interaction, with subthemes around how virtual care improved accessibility of care for patients and improved patient-centered care; how privacy and technical issues impact patients using virtual care; and the need for relationality and connection between health care providers and patients while using virtual care. Conclusions: This study showed that virtual care can increase accessibility and efficiency for patients and providers, indicating its potential for ongoing use in the delivery of clinical care. Virtual care was found to be an acceptable mode of healthcare delivery from the perspective of patients; however, there is a continued need for relationship-building between care providers and patients.

"If it helps someone, then I want to do it": Perspectives of persons living with dementia on research registry participation.

Registries are an important platform to which persons with dementia and other cognitive impairments can contribute to research studies. Registries also provide an opportunity for patients to stay informed about current studies. Engaging patients in registry development can increase sustainability of a registry and patient retention in clinical registries. We sought the perspective of persons with dementia and their accompanying family members about their registry participation experiences, barriers and facilitators to participation, and potential avenues for improvement of registry processes such as recruitment, data collection, and knowledge translation. Two semi-structured focus groups with persons with dementia and their family members (n = 18) were conducted and analyzed using thematic content analysis. Participants were recruited from an existing patient registry made up of patients currently being seen in a dementia assessment clinic. The main themes identified included altruistic motives with regards to registry participation; and access to and privacy of personal health information. As electronic health records are becoming more common, understanding barriers and facilitators from the perspectives of people with dementia is essential to inform the future development of cognitive condition-related registries. The results from our focus groups identified engagement strategies and solutions to overcome perceived barriers for individuals experiencing progressive cognitive decline to participate in longitudinal registry projects.

Mind the gap: Exploring information gaps for the development of an online resource hub for epilepsy and depression.

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.