222 results on '"Robillard, Julie M."'
Search Results
2. Evaluating the role of social media in providing support for family caregivers of individuals with spinal cord injury
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Cathcart, Heather F., Mohammadi, Somayyeh, Erlander, Beth, Robillard, Julie M., and Miller, William C.
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- 2023
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3. Correction: Evaluating the role of social media in providing support for family caregivers of individuals with spinal cord injury
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Cathcart, Heather F., Mohammadi, Somayyeh, Erlander, Beth, Robillard, Julie M., and Miller, William C.
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- 2023
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4. Robot telepresence as a practical tool for responsible and open research in trustworthy autonomous systems
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Waterstone, Richard, Robillard, Julie M., and Prescott, Tony J.
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- 2022
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5. The impact of respite care from the perspectives and experiences of people with amyotrophic lateral sclerosis and their care partners: a qualitative study
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Wu, Julia M., Tam, Mallorie T., Buch, Kirsten, Khairati, Fouziah, Wilson, Laurissa, Bannerman, Elizabeth, Guerrero, Alexandra, Eisen, Andrew, Toyer, Wendy, Stevenson, Travis, and Robillard, Julie M.
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- 2022
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6. A Systematic Review of the Impacts of Media Mental Health Awareness Campaigns on Young People.
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Tam, Mallorie T., Wu, Julia M., Zhang, Cindy C., Pawliuk, Colleen, and Robillard, Julie M.
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MENTAL illness prevention ,SUICIDE prevention ,HEALTH literacy ,SOCIAL media ,MEDICAL information storage & retrieval systems ,MENTAL health ,RESEARCH funding ,HEALTH attitudes ,HEALTH ,HELP-seeking behavior ,INFORMATION resources ,ANXIETY ,MASS media ,SYSTEMATIC reviews ,MEDLINE ,HEALTH behavior ,HEALTH promotion ,PSYCHOLOGY information storage & retrieval systems ,SOCIAL stigma ,MENTAL depression - Abstract
Mental health issues are prevalent among young people. An estimated 10% of children and adolescents worldwide experience a mental disorder, yet most do not seek or receive care. Media mental health awareness campaigns, defined as marketing efforts to raise awareness of mental health issues through mass media, are an effort to address this concern. While previous research has evaluated the outcomes of specific media mental health awareness campaigns, there is limited data synthesizing their overall effects. This study addresses the knowledge gap by reviewing the existing literature on the impact of media mental health awareness campaigns on young people. A search was conducted on MEDLINE, EMBASE, PsychINFO, Web of Science, and Google Scholar for studies published between 2004 and 2022 with results specific to people aged 10 to 24. Out of 20,902 total studies identified and screened, 18 studies were included in the review. The following data were extracted from each study: characteristics and descriptions of the campaign, evaluation design and sampling, and summary of impact. The review identified evaluations of 15 campaigns from eight different countries. Outcome evaluation methods commonly comprised of surveys and quantitative data. The campaigns were generally associated with positive changes in the attitudes, beliefs, and intentions of young people (e.g., reduced stigma) and positive changes in behaviors (e.g., increased help-seeking behaviors). The inclusion of few studies in the review indicates a need for ongoing evaluations of media mental health awareness campaigns for young people to inform good practices in their development and distribution. [ABSTRACT FROM AUTHOR]
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- 2024
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7. Content Analysis of Frequency of Information About Developmental Dysplasia of the Hip on Twitter
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Kodali, Neha, Sidhu, Bernita V., So, Judy, Habib, Eva, Robillard, Julie M., Mulpuri, Kishore, and Schaeffer, Emily K.
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- 2021
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8. Socially Assistive Robots as Mental Health Interventions for Children: A Scoping Review
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Kabacińska, Katarzyna, Prescott, Tony J., and Robillard, Julie M.
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- 2021
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9. Are friends electric? The benefits and risks of human-robot relationships
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Prescott, Tony J. and Robillard, Julie M.
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- 2021
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10. Practical social media recommendations for dementia prevention researchers.
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Hrincu, Viorica, Roy, Katherine T., and Robillard, Julie M.
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SOCIAL media ,MISINFORMATION ,DELPHI method ,TELECONFERENCING ,RESEARCH personnel - Abstract
INTRODUCTION: Practical social media recommendations are needed to facilitate greater engagement in dementia prevention research. Alongside relevant experts, our aim was to develop a set of consensus recommendations that reflect the values and priorities of prospective participants to guide social media use. METHODS: We conducted a three‐round, modified Delphi consisting of three online surveys and three conferences calls. The diverse, international Delphi panel comprised 16 experts with lived (n = 10) and professional (n = 6) experiences. Consensus was defined a priori as ≥ 70% agreement. RESULTS: Twenty‐six items achieved consensus. Two items reached consensus in round 1: ethical considerations of closed social media groups (88%) and of social media users sharing prevention content with connections who are not on social media (79%). Nine items reached consensus in round 2, related to misinformation (79%), stigma (93%), and other key aspects of social media communication. After revisions, 15 items reached consensus in the final round. These items included: identifying when researchers ought to engage, managing closed social media groups, rankings of short form content, prioritizing lay summaries and multimedia resources, and rankings of preferred language. One item about the language of prevention for audiences living with dementia did not reach consensus. Final consensus items formed the new set of recommendations, which we organized into seven social media use cases. These use cases include setting up a social media page or community, handling online misinformation, actively challenging stigma, handling difficult online interactions, introducing new research to the public, help with study recruitment, and the language of prevention when writing posts. DISCUSSION: These consensus recommendations can help dementia prevention researchers harness social media use for the purposes of public engagement and uphold the norms and values specific to the dementia research and broader communities. Highlights: We created social media recommendations with research and community experts.Recommendations cover key ethical considerations for dementia prevention research.Areas include misinformation, stigma, information updates, and preferred language.Full consensus recommendations are organized into seven social media use cases. [ABSTRACT FROM AUTHOR]
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- 2024
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11. "Dementia Doesn't Mean That Life Doesn't Have More Wonderful Things Ahead": A Qualitative Study Evaluating a Canadian Dementia Support Services Program.
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Tam, Mallorie T., Martin, Susanna, Yu Fei Jiang, Machado, Angela, and Robillard, Julie M.
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SUPPORT groups ,PATIENT education ,QUALITATIVE research ,ALZHEIMER'S disease ,HUMAN services programs ,RESEARCH funding ,EVALUATION of human services programs ,INTERVIEWING ,EXPERIENCE ,CAREGIVERS ,QUALITY of life ,DEMENTIA ,COMMUNITY-based social services ,DEMENTIA patients - Abstract
Background Community support programs can improve quality of life for people living with dementia and their care partners. Important to the successful implementation of such programs is close engagement with end-users to gain a better understanding of their needs. This study describes the perspectives of people living with dementia, care partners, and health-care providers on the First Link® dementia support program provided by the Alzheimer Society of British Columbia (ASBC). Methods Following a large-scale survey (N=1,164), semi-structured interviews were conducted with participants to explore in greater detail the different needs and themes that emerged from the first phase of the study. The interviews explored: 1) experiences with the program; 2) future planning; 3) meaning of independence; and 4) impact of the program on emotional and physical well-being. Results A total of 48 participants were interviewed in this study. Knowledge and education were key factors that helped participants manage the impact of dementia. Learning about dementia, the experiences of others, strategies on how to manage symptoms, what to plan for in the future, and how to access different services in the community, was tied to increased feelings of confidence and comfort, and decreased stress. Participants also provided suggestions for improvement of the First Link® dementia program such as further embedding the program into the patient journey, providing more services in remote areas, providing education for health-care providers, and increasing awareness of the program. Conclusion By emphasizing the lived experiences and needs of those living with dementia and their caregivers, this work will inform future research-based program evaluations globally and, in turn, improve the existing services to support people living with--and impacted by--dementia. [ABSTRACT FROM AUTHOR]
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- 2024
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12. Barriers and Facilitators to Effective Pain Management by Parents After Pediatric Outpatient Surgery
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Tam, Mallorie T., Wu, Julia M., Page, Patricia M., Lamb, Elizabeth A., Jordan, Isabel, Chambers, Christine T., and Robillard, Julie M.
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- 2020
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13. Availability, readability, and content of privacy policies and terms of agreements of mental health apps
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Robillard, Julie M., Feng, Tanya L., Sporn, Arlo B., Lai, Jen-Ai, Lo, Cody, Ta, Monica, and Nadler, Roland
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- 2019
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14. Personal value of Alzheimer's disease biomarker testing and result disclosure from the patient and care partner perspective.
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Patel, Khushbu J., Yang, David, Feldman, Howard H., Hsiung, Ging‐Yuek R., Nygaard, Haakon B., Best, John R., Dwosh, Emily, Robillard, Julie M., and DeMarco, Mari L.
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ALZHEIMER'S disease ,DISCLOSURE ,BIOMARKERS ,PATIENT care ,CEREBROSPINAL fluid - Abstract
INTRODUCTION: We described patients' and care partners' experiences with Alzheimer's disease (AD) cerebrospinal fluid (CSF) biomarker testing and result disclosure in routine care. METHODS: IMPACT‐AD BC is an observational study of clinic patients who underwent AD CSF biomarker testing as part of their routine medical care (n = 142). In the personal utility arm of the study, semi‐structured phone interviews were conducted with a subset of patients (n = 34), and separately with their care partners (n = 31). Post‐disclosure interviews were conducted ∼1 month and ∼6 months after biomarker result disclosure and investigated the patients' decision‐making process around testing, impact of receiving results, wellness and lifestyle changes, and future planning. RESULTS: A majority of patients (90%) rated their decision to undergo testing as "easy." Post‐disclosure, the majority (82%) reported overall positive feelings from having greater certainty and the ability to plan ahead, and results spurred them to adopt/continue healthy behaviors such as exercise (84%) and cognitive activities (54%). Care partners expressed relief from having more diagnostic certainty, increased appreciation of future caregiving responsibilities, and a desire to connect with support resources. DISCUSSION: Perspectives of persons with lived experience in dementia provide new insight into the value of biomarker testing and should be included as part of evidence‐guided considerations for pre‐test counseling and result disclosure. Moreover, study findings identify an interval when patients and care partners are highly receptive to positive lifestyle and medical interventions. [ABSTRACT FROM AUTHOR]
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- 2024
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15. Use of nonintrusive sensor-based information and communication technology for real-world evidence for clinical trials in dementia
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Teipel, Stefan, König, Alexandra, Hoey, Jesse, Kaye, Jeff, Krüger, Frank, Robillard, Julie M., Kirste, Thomas, and Babiloni, Claudio
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- 2018
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16. Ethical adoption: A new imperative in the development of technology for dementia
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Robillard, Julie M., Cleland, Ian, Hoey, Jesse, and Nugent, Chris
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- 2018
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17. Patient perspectives of the experience of a computerized cognitive assessment in a clinical setting
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Robillard, Julie M., Lai, Jen-Ai, Wu, Julia M., Feng, Tanya L., and Hayden, Sherri
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- 2018
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18. Digital technologies as biomarkers, clinical outcomes assessment, and recruitment tools in Alzheimer's disease clinical trials
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Gold, Michael, Amatniek, Joan, Carrillo, Maria C., Cedarbaum, Jesse M., Hendrix, James A., Miller, Bradley B., Robillard, Julie M., Rice, J. Jeremy, Soares, Holly, Tome, Maria B., Tarnanas, Ioannis, Vargas, Gabriel, Bain, Lisa J., and Czaja, Sara J.
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- 2018
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19. Investigating the concept of participant burden in aging technology research
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Kabacińska, Katarzyna, Sharma, Nicole, Kaye, Jeffrey, Mattek, Nora, Kuzeljevic, Boris, and Robillard, Julie M.
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- 2020
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20. The Return of Biomarker Results in Research: Balancing Complexity, Precision, and Ethical Responsibility.
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Robillard, Julie M., Masellis, Mario, Martin, Susanna E., Khachaturian, Ara S., and Dixon, Roger A.
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ALZHEIMER'S disease , *HEALTH outcome assessment , *COMMUNICATION ethics , *BIOMARKERS , *HUMAN research subjects - Abstract
Recent research aimed at the discovery, integration, and communication of health outcome measures (or "biomarkers") in Alzheimer's disease has raised challenging questions related to whether, how and when results from these investigations should be disclosed to research participants. Reflecting the apparent heterogeneity of many neurodegenerative diseases, biomarker or other risk factor results are often probabilistic, interactive, multi-modal, and selective. Such characteristics make it very complex to summarize and communicate to clinicians, researchers, and research participants. Whereas the format and content of academic literature is well-managed by the peer-review process, reporting individualized results to participants involves complex, sensitive, and ethical considerations. This paper describes three key factors to consider in decisions about the return of results to research participants: complexity, precision, and responsibility. The paper also presents six practical recommendations for implementing meaningful and ethical communication with research participants. [ABSTRACT FROM AUTHOR]
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- 2024
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21. The League: A person‐centred approach to the development of social robotics for paediatric anxiety.
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Dosso, Jill A., Kailley, Jaya N., and Robillard, Julie M.
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SOCIAL support ,PATIENT participation ,PEDIATRICS ,PATIENT-centered care ,MENTAL health ,EXPERIENCE ,ROBOTICS ,HUMAN services programs ,RESEARCH funding ,ANXIETY ,SOCIAL skills ,EMOTION regulation ,MENTAL health services - Abstract
Background: Social robots are promising tools to improve the quality of life of children and youth living with anxiety and should be developed based on the priorities of end users. However, pathways to include young people in patient‐oriented research, particularly in the overlap between technology and mental health, have been historically limited. Objective: In this work, we describe engagement with experts with lived experiences of paediatric anxiety in a social robotics research programme. We report the experiences of patient advisors in a co‐creation process and identify considerations for other research groups looking to involve end users in technology development in the field of youth mental health. Design: We engaged individuals with a lived experience of paediatric anxiety (current, recent past, or from a parent perspective) using three different models over the course of three years. Two initial patient partners were involved during project development, eight were engaged as part of an advisory panel ('the League') during study development and data analysis and four contributed as ongoing collaborators in an advisory role. League members completed a preparticipation expectation survey and a postparticipation experience survey. Findings: Eight individuals from a range of anxiety‐related diagnostic groups participated in the League as patient partners. Members were teenagers (n = 3), young adults aged 22–26 years who had connected with a youth mental health service as children within the past eight years (n = 3) or parents of children presently living with anxiety (n = 2). Preferred methods of communication, expectations and reasons for participating were collected. The League provided specific and actionable feedback on the design of workshops on the topic of social robotics, which was implemented. They reported that their experiences were positive and fairly compensated, but communication and sustained engagement over time were challenges. Issues of ethics and language related to patient‐centred brain health technology research are discussed. Conclusions: There is an ethical imperative to meaningfully incorporate the voices of youth and young adults with psychiatric conditions in the development of devices intended to support their mental health and quality of life. Patient or Public Contribution: Six young people and two parents with lived experiences of paediatric anxiety participated in all stages of developing a research programme on social robotics to support paediatric mental health in a community context. They also provided input during the preparation of this manuscript. [ABSTRACT FROM AUTHOR]
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- 2024
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22. Technology in Dementia Education: An Ethical Imperative in a Digitized World.
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Martin, Susanna E., Tam, Mallorie T., and Robillard, Julie M.
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MORAL education ,TECHNOLOGY education ,CAREGIVERS ,ALZHEIMER'S disease ,INFORMATION sharing - Abstract
Technology can support the delivery of care and improve the lives of people living with dementia. However, despite a substantial body of evidence demonstrating the benefits and opportunities afforded by technology, gaps remain in how technology and technology ethics are addressed in dementia care education. Here we discuss disparities in current educational programming and highlight the ethical challenges arising from underdeveloped knowledge exchange about dementia care technology. We put forward that for technology to be ethically deployed and maximized to improve outcomes, it must be embedded into dementia education programs and made widely accessible to the caregiver community. [ABSTRACT FROM AUTHOR]
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- 2024
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23. What Does ChatGPT Know About Dementia? A Comparative Analysis of Information Quality.
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Dosso, Jill A., Kailley, Jaya N., and Robillard, Julie M.
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CHATGPT ,PHYSICIAN-patient relations ,DEMENTIA ,COMPARATIVE studies ,ALZHEIMER'S disease - Abstract
The quality of information about dementia retrieved using ChatGPT is unknown. Content was evaluated for length, readability, and quality using the QUEST, a validated tool, and compared against online material from three North American organizations. Both sources of information avoided conflicts of interest, supported the patient-physician relationship, and used a balanced tone. Official bodies but not ChatGPT referenced identifiable research and pointed to local resources. Users of ChatGPT are likely to encounter accurate but shallow information about dementia. Recommendations are made for information creators and providers who counsel patients around digital health practices. [ABSTRACT FROM AUTHOR]
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- 2024
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24. "A Safe Space for Sharing Feelings": Perspectives of Children with Lived Experiences of Anxiety on Social Robots.
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Dosso, Jill A., Kailley, Jaya N., Martin, Susanna E., and Robillard, Julie M.
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SOCIAL robots ,SOCIAL anxiety ,PSYCHOLOGICAL distress ,ROBOT design & construction ,ACTIVITIES of daily living ,BREATHING exercises ,CHILD patients - Abstract
Social robots have the potential to support health and quality of life for children experiencing anxiety. We engaged families with lived experiences of pediatric anxiety in social robot development to explore desired design features, application areas, and emotion functionalities of social robots in anxiety care. We conducted 10 online co-creation workshops with (1) children with anxiety aged 7–13 (n = 24) with their family members (n = 20), and (2) youth with anxiety aged 14–18 (n = 12). Workshop participation included a validated robot expectations scale, anonymous polls, and discussion. Transcripts and text responses were subjected to content analysis. A lived experience expert group provided feedback throughout the research. Participants desired a pet-like robot with a soft texture, expressive eyes, and emotion detection to support activities of daily living. Specific anxiety-related applications included breathing exercises, managing distressing thoughts, and encouragement. Emotional alignment, the design of a robot's emotional display, and the emotional impacts of an interaction were discussed. Privacy and the replacement of human interaction were concerns. We identify pediatric anxiety-specific design features, applications, and affective considerations for existing and future social robots. Our findings highlight the need for customizability and robust emotional functionality in social robot technologies intended to support the health and care of children living with anxiety. [ABSTRACT FROM AUTHOR]
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- 2023
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25. Scientific and ethical features of English-language online tests for Alzheimer's disease
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Robillard, Julie M., Illes, Judy, Arcand, Marcel, Beattie, B. Lynn, Hayden, Sherri, Lawrence, Peter, McGrenere, Joanna, Reiner, Peter B., Wittenberg, Dana, and Jacova, Claudia
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- 2015
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26. “A Light Switch in the #Brain”: Optogenetics on Social Media
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Robillard, Julie M., Lo, Cody, Feng, Tanya L., and Hennessey, Craig A.
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- 2016
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27. Debate: Social media content moderation may do more harm than good for youth mental health.
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Zhang, Cindy C., Zaleski, Grayden, Kailley, Jaya N., Teng, Katelyn A., English, Mahala, Riminchan, Anna, and Robillard, Julie M.
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CENSORSHIP ,SOCIAL support ,SOCIAL media ,DEBATE ,MENTAL health ,HELP-seeking behavior ,HARM reduction ,HEALTH ,INFORMATION resources ,TEENAGERS' conduct of life ,GOVERNMENT policy ,PSYCHOLOGICAL adaptation ,MENTAL illness ,SOCIAL integration ,EATING disorders - Abstract
Most social media platforms censor and moderate content related to mental illness to protect users from harm, though this may be at the expense of potential positive outcomes for youth mental health. Current evidence does not offer strong support for the relationship between censoring mental health content and preventing harm. In fact, existing moderation strategies can perpetuate negative consequences for mental health by creating isolated and polarized communities where at‐risk youth remain exposed to harmful content, such as pro‐eating disorder communities that use lexical variants to evade censorship. Social media censorship of content related to mental illness can also silence positive discourse about mental health, create barriers to accessing online support and resources, and hinder research efforts on youth well‐being. Social media content about mental health can have important positive impacts on youth mental health by facilitating help‐seeking, depicting positive coping strategies, and promoting a sense of belonging for struggling youth, but these benefits are minimized under existing moderation and censorship practices. This article presents a call to action for evidence‐based social media policies and for practitioners to consider the clinical implications of social media engagement when connecting with young patients. [ABSTRACT FROM AUTHOR]
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- 2024
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28. "Functioning better is doing better": older adults' priorities for the evaluation of assistive technology.
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Kabacińska, Katarzyna, Vu, Kim, Tam, Mallorie, Edwards, Olivia, Miller, William C., and Robillard, Julie M.
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Despite the benefits of assistive technology (AT), barriers to technology adoption still exist and are uniquely affecting older populations. Improving technology adoption can be achieved by involving end-users in the development and evaluation process. However, existing AT evaluation tools rarely take into account older adults' experiences. The goal of this study was to fill this gap by determining which AT evaluation criteria are important for older adults. We conducted 4 nominal group meetings with 21 participants aged 50+ in Vancouver, Canada. In the meetings, participants generated AT evaluation criteria and organized them in the order of importance. The content from the meetings was analyzed using qualitative content analysis. Final rankings were collated to reveal which criteria were the most important across the groups. We found that promotion of independence, affordability, ease of use and ethics are the most important AT evaluation criteria for older adults. Some aspects of ATs that older adults value, such as reliability, are not featured in AT evaluation tools. This study provides insight into older adults' priorities for AT evaluation criteria, and concerns that older adults have about AT use. The findings are supplemented with a comprehensive analysis of the group discussions that contextualizes the criteria. [ABSTRACT FROM AUTHOR]
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- 2023
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29. The QUEST for quality online health information: validation of a short quantitative tool
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Robillard, Julie M., Jun, Jessica H., Lai, Jen-Ai, and Feng, Tanya L.
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- 2018
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30. Who is to blame? Medical hype in the media
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Robillard, Julie M.
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- 2017
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31. Fueling Hope: Stem Cells in Social Media
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Robillard, Julie M., Cabral, Emanuel, Hennessey, Craig, Kwon, Brian K., and Illes, Judy
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- 2015
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32. Designing Socially-Assistive Robots
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Prescott, Tony J. and Robillard, Julie M.
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ICCHP-AAATE 2022 Open Access Compendium "Assistive Technology, Accessibility and (e)Inclusion" Part II / Petz, Andrea ; Hoogerwerf, Evert-Jan ; Mavrou, Katerina, Seite 285-292, There is increasing interest in social robots as assistive technologies to support a wide range of potential user groups. Nevertheless, the widespread use of robots has been challenged in terms of their efficacy and benefits as well as the ethics of employing robots in social roles. For instance, it has been suggested that robots are incapable of being truly social and therefore that any use of social robots as assistive technology is intrinsically deceptive. This contribution addresses this controversy, building on a relational view of human-robot interaction, which asserts that sociality has less to do with the essential natures of the human and robot actors involved, and more to do with the patterns and consequences of their interaction. From this starting position we consider and explore four design principles for social robots and compare/contrast these with the view of design “transparency” that robots should behave to reveal their true machine nature.
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- 2022
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33. A blueprint for the next generation of ELSI research, training, and outreach in regenerative medicine
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Illes, Judy, Sipp, Douglas, Kleiderman, Erika, Benjaminy, Shelly, Isasi, Rosario, Lomax, Geoff, Master, Zubin, McCormick, Jennifer, Ogbogu, Ubaka, Ravitsky, Vardit, Robillard, Julie M., Rossi, Fabio, Wilson, Brenda, and Zarzeczny, Amy
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- 2017
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34. Hippocampal Long-Term Depression Mediates Acute Stress-Induced Spatial Memory Retrieval Impairment
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Wong, Tak Pan, Howland, John G., Robillard, Julie M., Ge, Yuan, Yu, Wayne, Titterness, Andrea K., Brebner, Karen, Liu, Lidong, Weinberg, Joanne, Christie, Brian R., Phillips, Anthony G., and Wang, Yu Tian
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- 2007
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35. Companion robots to mitigate loneliness among older adults: Perceptions of benefit and possible deception.
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Berridge, Clara, Zhou, Yuanjin, Robillard, Julie M., and Kaye, Jeffrey
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OLDER people ,LONELINESS ,DECEPTION ,ROBOTS ,PERCEIVED benefit - Abstract
Objective: Given growing interest in companion robots to mitigate loneliness, largescale studies are needed to understand peoples’ perspectives on the use of robots to combat loneliness and attendant ethical issues. This study examines opinions about artificial companion (AC) robots regarding deception with dementia and impact on loneliness. Methods: Data are from a survey of 825 members of the OHSU Research via Internet Technology and Experience cohort (response rate = 45%). Sixty percent (n = 496) of the age diverse sample (range = 25–88; M = 64; SD = 13.17) is over 64, allowing us to compare across age and consider current and future older adults. Ordinal logistic regressions examined relationships between age, health, and other sociodemographic characteristics and perceptions of impact on loneliness and comfort with deception. Results: Most participants (68.7%) did not think an AC robot would make them feel less lonely and felt somewhat-to-very uncomfortable (69.3%) with the idea of being allowed to believe that an artificial companion is human. In adjusted models, one additional year of age was associated with lower likelihood of perceived benefit of reducing loneliness [Odds Ratio (OR) = 0.98; (0.97–0.99), p = 0.003] and lower comfort with deception [OR = 0.99; (0.97–1.00), p = 0.044]. Being female was associated with lower likelihood of comfort with deception [OR = 0.68; (0.50–0.93), p = 0.014] and high confidence using computers with greater comfort [OR = 2.18; (1.42–3.38), p < 0.001]. Discussion: There was not strong support for AC robots to mitigate loneliness. Most participants were uncomfortable with this form of deception, indicating need for design solutions for those who want to avoid this possibility, as well as greater attentiveness to desirability and comfort across age and gender. [ABSTRACT FROM AUTHOR]
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- 2023
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36. Older adult perspectives on emotion and stigma in social robots.
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Dosso, Jill A., Kailley, Jaya N., Guerra, Gabriella K., and Robillard, Julie M.
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SOCIAL robots ,OLDER people ,SOCIAL stigma ,ASSISTIVE technology ,EMOTIONS - Abstract
Introduction: Social robot adoption by older adults and people living with dementia is limited by several barriers, including a lack of emotional alignment with social robots and perceptions of stigma around social robot use. The goal of this work was to address these barriers by engaging end-users in discussions on factors that could affect emotional connection to a social robot and considerations around using a social robot in public. Methods: We conducted seven 90-min online workshops with older adults with (n = 2) and without dementia (n = 25) and care partners (n = 17). Older adults with and without dementia were in their 50s - 80s, and care partners were in their 30s - 70s. Seven older adults, seven care partners, and one older adult with dementia indicated that they had used a robot before. Online workshops had 4-8 participants each, and began with video demonstrations of pet-like robot MiRo and tabletop robot T-Top, as well as a live demonstration of MiRo. Participants completed the Multi-Dimensional Robot Attitude Scale before the workshops and the Psychosocial Impact of Assistive Devices Scale and two Zoom polls during the workshops. The audio and chat responses from the workshops were transcribed verbatim and content analysis was performed on the transcripts. Results: Our analysis revealed three broad themes and 10 subthemes. In their discussions on features and applications, participants highlighted preferred forms of communication with a robot and ways in which a robot could support connection between people. For example, robots could improve the quality of communication between care partners and the person for whom they care. While many agreed that a social robot should match their level of emotion and interactivity, participants had different preferences for social robot emotional range and display features. Finally, participants discussed considerations around showing a robot to other people; several participants suggested that a robot could help raise awareness of ageing and dementia while others shared concerns about stigma and attracting negative attention from an audience. Discussion: Incorporating these findings into the design and implementation of social robots will result in devices that are better-suited to the needs of older adults, people living with dementia, and care partners. [ABSTRACT FROM AUTHOR]
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- 2023
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37. Dementia Research on Facebook and Twitter: Current Practice and Challenges.
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Hrincu, Viorica, An, Zijian, Joseph, Kenneth, Jiang, Yu Fei, and Robillard, Julie M.
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SENTIMENT analysis ,SOCIAL media ,DEMENTIA ,ALZHEIMER'S disease - Abstract
Background: Social media is a powerful tool for engaging diverse audiences in dementia research. However, there is little data summarizing current content exchange in this context.Objective: To inform ethical dementia research engagement on social media, we characterized current practices by analyzing public social media posts.Methods: We retrieved Facebook (2-year period, N = 7,896) and Twitter (1-year period, N = 9,323) posts containing dementia research-related keywords using manual and machine learning-based search strategies. We performed qualitative and quantitative content and sentiment analyses on random samples (10%) of the posts.Results: Top Facebook users were advocacy (45%) and health organizations (25%). On Twitter, academics/researchers were the largest user group. Prevention was the most frequently coded theme (Facebook 30%; Twitter 26%), followed by treatment (Facebook 15%; Twitter 18%). Diagnostics had the highest Facebook engagement. Sharing knowledge was the primary form of content exchange (Facebook 63%; Twitter 80%). Most shared journal articles were peer-reviewed and open access. Emotional tone was overall more positive on Facebook. Justice was a prominent ethics topic regarding inequalities related to identity and intersecting modes of marginalization in dementia research.Conclusion: The findings indicate the importance of social media as an engagement tool of current topics in health research and reveal areas of potential for increased engagement. These data can inform consensus-based best practices for ethical social media application in dementia research. [ABSTRACT FROM AUTHOR]- Published
- 2022
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38. Clinical research in dementia: A perspective on implementing innovation.
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Boccardi, Marina, Handels, Ron, Gold, Michael, Grazia, Alice, Lutz, Michael W., Martin, Mike, Nosheny, Rachel, Robillard, Julie M., Weidner, Wendy, Alexandersson, Jan, Thyrian, Jochen René, Winblad, Bengt, Barbarino, Paola, Khachaturian, Ara S., and Teipel, Stefan
- Abstract
The increasing global prevalence of dementia demands concrete actions that are aimed strategically at optimizing processes that drive clinical innovation. The first step in this direction requires outlining hurdles in the transition from research to practice. The different parties needed to support translational processes have communication mismatches; methodological gaps hamper evidence‐based decision‐making; and data are insufficient to provide reliable estimates of long‐term health benefits and costs in decisional models. Pilot projects are tackling some of these gaps, but appropriate methods often still need to be devised or adapted to the dementia field. A consistent implementation perspective along the whole translational continuum, explicitly defined and shared among the relevant stakeholders, should overcome the "research‐versus‐adoption" dichotomy, and tackle the implementation cliff early on. Concrete next steps may consist of providing tools that support the effective participation of heterogeneous stakeholders and agreeing on a definition of clinical significance that facilitates the selection of proper outcome measures. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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39. Providing Accessible ReCreation Outdoors-User-Driven Research on Standards: Protocol for Mobile and Web-Based Interviews for Winter Assessments.
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Prescott, Mike, Gamache, Stéphanie, Mortenson, W. Ben, Best, Krista L., Grandisson, Marie, Mostafavi, Mir Abolfazl, Labbé, Delphine, Morales, Ernesto, Mahmood, Atiya, Borisoff, Jaimie, Sawatzky, Bonita, Miller, William C., Bulk, Laura Yvonne, Robillard, Julie M., and Routhier, François
- Subjects
MIXED methods research ,EXTREME weather ,NATIONAL parks & reserves ,HEALTH risk assessment ,RECREATION - Abstract
Background: Although there have been recent efforts to improve access to Canadian national parks, many remain not fully accessible to people with disabilities. Winter conditions, in particular, present challenges that limit their participation in outdoor activities. Objective: This study aimed to develop a novel method to assess park access during winter, which will inform recommendations for national park standards to meet the needs of all park visitors (regardless of ability) during winter conditions. Methods: A larger participatory mixed methods research project exploring park access was adapted. A 3-phase approach has already been proposed to achieve the study objectives. In the first phase, a scoping review of the existing accessibility standards will be conducted. In the second phase, objective audits of trails and features in 6 parks, 3 in western Canada and 3 in eastern Canada, will be conducted, as well as mobile interviews with 24 various participants in each region regarding their experiences of and recommendations for improving the park's accessibility. In the final phase, a Delphi participatory consensus development process will be used, based on the data gathered in the first 2 phases, to prioritize recommendations for standards. This paper will focus on the second phase of the study, specifically on whether the in-person winter mobile interviews (ie, walking and wheeling interviews) with people who have a wide range of disabilities while visiting 3 parks in 2 provinces were modified. Changes were made to accommodate the extreme winter weather conditions in Quebec while using safe and informative data collection methods. Results: In Quebec, one park, where winter conditions are safer, has been assessed in person (n=4). Web-based interviews were used to facilitate the assessment of other winter and summer conditions in two other parks (n=8). Winter and web-based interviews were completed in April 2022. Data are currently being collected and analyzed, and results will be completed by December 2022. Conclusions: We expect that adapting the protocol to gather further information on winter conditions and access to parks will provide high-quality and rich data to better inform park access standards. This participatory mixed methods research will inform the development of park standards that consider the accessibility needs of all people. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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- View/download PDF
40. Utilizing Social Media to Study Information-Seeking and Ethical Issues in Gene Therapy
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Robillard, Julie M, Whiteley, Louise, Johnson, Thomas Wade, Lim, Jonathan, Wasserman, Wyeth W, and Illes, Judy
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Computer applications to medicine. Medical informatics ,R858-859.7 ,Public aspects of medicine ,RA1-1270 - Abstract
BackgroundThe field of gene therapy is rapidly evolving, and while hopes of treating disorders of the central nervous system and ethical concerns have been articulated within the academic community, little is known about views and opinions of different stakeholder groups. ObjectiveTo address this gap, we utilized social media to investigate the kind of information public users are seeking about gene therapy and the hopes, concerns, and attitudes they express. MethodsWe conducted a content analysis of questions containing the keywords “gene therapy” from the Q&A site “Yahoo! Answers” for the 5-year period between 2006 and 2010. From the pool of questions retrieved (N=903), we identified those containing at least one theme related to ethics, environment, economics, law, or society (n=173) and then characterized the content of relevant answers (n=399) through emergent coding. ResultsThe results show that users seek a wide range of information regarding gene therapy, with requests for scientific information and ethical issues at the forefront of enquiry. The question sample reveals high expectations for gene therapy that range from cures for genetic and nongenetic diseases to pre- and postnatal enhancement of physiological attributes. Ethics questions are commonly expressed as fears about the impact of gene therapy on self and society. The answer sample echoes these concerns but further suggests that the acceptability of gene therapy varies depending on the specific application. ConclusionsOverall, the findings highlight the powerful role of social media as a rich resource for research into attitudes toward biomedicine and as a platform for knowledge exchange and public engagement for topics relating to health and disease.
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- 2013
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41. Exercising Our Brains: How Physical Activity Impacts Synaptic Plasticity in the Dentate Gyrus
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Christie, Brian R., Eadie, Brennan D., Kannangara, Timal S., Robillard, Julie M., Shin, James, and Titterness, Andrea K.
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- 2008
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42. Pain management communication between parents and nurses after pediatric outpatient surgery.
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Wu, Julia M., Tam, Mallorie T., Page, Patricia M., Lamb, Elizabeth A., Jordan, Isabel, Chambers, Christine T., and Robillard, Julie M.
- Abstract
The purpose of this study was to explore parent-nurse pain management communication during a child's discharge process following pediatric outpatient surgery. Thirty-two clinical encounters at discharge between parents (N = 40) and nurses (N = 25) at BC Children's Hospital were audio recorded and transcribed verbatim. Content analysis was applied on the audio recordings and corresponding transcripts using MAXQDA qualitative research software and Microsoft Excel. Overall, nurses delivered pain management instructions at an average sixth grade readability level and frequently used communication elements of reassurance, optimism, and question-asking. Less consistent communication elements included open-ended questions, interruptions, and promotion of parental decision-making. Parents most frequently asked one to five questions, with pain medication being the most inquired topic. Several strengths of the nurse communication approach were identified, and parent questions highlighted a need for greater understanding around pain medication. These findings will help guide effective pain management communication and care for young patients and their families. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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43. User perspectives on emotionally aligned social robots for older adults and persons living with dementia.
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Dosso, Jill A, Bandari, Ela, Malhotra, Aarti, Guerra, Gabriella K, Hoey, Jesse, Michaud, François, Prescott, Tony J, and Robillard, Julie M
- Published
- 2022
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44. Committee on High‐quality Alzheimer's Disease Studies (CHADS) consensus report.
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Jicha, Greg A., Abner, Erin L., Arnold, Steven E., Carrillo, Maria C., Dodge, Hiroko H., Edland, Steven D., Fargo, Keith N., Feldman, Howard H., Goldstein, Larry B., Hendrix, James, Peters, Ruth, Robillard, Julie M., Schneider, Lon S., Titiner, Jodi R., and Weber, Christopher J.
- Abstract
Background: Consensus guidance for the development and identification of high‐quality Alzheimer's disease clinical trials is needed for protocol development and conduct of clinical trials. Methods: An ad hoc consensus committee was convened in conjunction with the Alzheimer's Association to develop consensus recommendations. Results: Consensus was readily reached for the need to provide scientific justification, registration of trials, institutional review board oversight, conflict of interest disclosure, funding source disclosure, defined trial population, recruitment resources, definition of the intervention, specification of trial duration, appropriate payment for participant engagement, risk‐benefit disclosure as part of the consent process, and the requirement to disseminate and/or publish trial results even if the study is negative. Conclusions: This consensus guidance should prove useful for the protocol development and conduct of clinical trials, and may further provide a platform for the development of education materials that may help guide appropriate clinical trial participation decisions for potential trial participants and the general public. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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45. Community and Provider Evaluation of a Canadian Dementia Support Services Program.
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Tam, Mallorie T., Dosso, Jill A., and Robillard, Julie M.
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WELL-being ,SOCIAL support ,EVALUATION of human services programs ,MENTAL health ,SURVEYS ,DEMENTIA ,COMMUNITY-based social services ,PSYCHOLOGY of caregivers - Abstract
Background Community programs and services dedicated to support those living with dementia and care partners can improve their quality of life. In close collaboration with the Alzheimer Society of British Columbia, we evaluated the First Link® dementia support services, aiming to identify key strengths and areas of improvements to inform the services offered. Methods A survey instrument was developed and distributed to people living with dementia, care partners, and health-care providers. Results A total of 1,123 surveys were analyzed. Overall, respondents were satisfied with First Link dementia support services. Key strengths of the program included providing information and education for their clients to learn more about dementia and other resources in the community. Areas for improvement that were identified as part of this evaluation included additional supports for participants' mental health and well-being in terms of reducing stress, burden and isolation. Findings uncovered discrepancies in the way people living with dementia, care partners, and health-care providers view the effectiveness of the First Link dementia support services. Conclusion An evaluation of programs and services for people living with dementia and their care partners can provide valuable insights about their experiences which can ensure that their needs are addressed. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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46. What criteria are young people using to select mobile mental health applications? A nominal group study.
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Kabacińska, Katarzyna, McLeod, Kaleigh, MacKenzie, Annika, Vu, Kim, Cianfrone, Michelle, Tugwell, Andrew, and Robillard, Julie M
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- 2022
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47. Providing Accessible Recreation Outdoors--User-Driven Research on Standards (PARCOURS): Protocol for a Multiphase Study.
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Prescott, Mike, Routhier, François, Labbé, Delphine, Grandisson, Marie, Mahmood, Atiya, Morales, Ernesto, Best, Krista L., Mostafavi, Mir Abolfazl, Borisoff, Jaimie, Gamache, Stéphanie, Sawatzky, Bonita, Miller, William C., Bulk, Laura Yvonne, Robillard, Julie M., Jenkins, Hailey-Thomas, Seetharaman, Kishore, and Mortenson, W. Ben
- Subjects
RECREATION ,NATIONAL parks & reserves ,DELPHI method ,PEOPLE with disabilities ,FEDERAL laws - Abstract
Background: Canada's national parks are world-renowned. However, despite recent attempts to improve access, many are not accessible to people with disabilities. With the advent of provincial and federal legislation, standards are being developed to assist with the design and management of parks. Objective: The overarching objective of this study is to inform accessibility standards for federal parks that meet the needs of all park visitors, regardless of ability. The specific objectives of this study are to identify park accessibility standards that exist internationally, identify the accessibility challenges that people with disabilities face in park environments, and prioritize and recommend accessibility standards for national parks. Methods: A 3-phase approach will be used to achieve the study objectives. In the first phase, a scoping review of the existing accessibility standards will be conducted. The second phase will include objective audits of trails and features in 6 parks, 3 in western Canada and 3 in eastern Canada, as well as mobile interviews with 24 diverse participants in each region regarding their experiences of and recommendations for improving the park's accessibility. In the final phase, a Delphi participatory consensus development process will be used, based on the data gathered in the first 2 phases, to prioritize recommendations for standards. Results: We expect to find gaps in existing standards that do not account for the diverse range of accessibility requirements that people with disabilities have for visiting parks. We also expect to find that existing standards, on their own, may not be enough to ensure equitable access to all the experiences and amenities that parks have to offer. Development of subsequent guidelines and best practices may be necessary to address complex scenarios for which standards may not be the best approach to ensuring accessibility. Conclusions: The participatory and mixed methods approaches used in this study will provide rich insights for developing accessible park standards that consider the diverse needs of people with disabilities. The findings will also support the development or enhancement of park standards at all levels of government. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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48. Identifying Risk Factors, Patient-Reported Experience and Outcome Measures, and Data Capture Tools for an Individualized Pain Prediction Tool in Pediatrics: Focus Group Study.
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Wood, Michael D., West, Nicholas C., Sreepada, Rama S., Loftsgard, Kent C., Petersen, Luba, Robillard, Julie M., Page, Patricia, Ridgway, Randa, Chadha, Neil K., Portales-Casamar, Elodie, and Görges, Matthias
- Published
- 2022
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49. CAN‐THUMBS UP: Recruitment in the Virtual Era.
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Nygaard, Haakon B., Slack, Penelope, Feldman, Howard H., Chertkow, Howard, Belleville, Sylvie, Montero‐Odasso, Manuel, Anderson, Nicole D., Bennett, Daniel, Borrie, Michael, Chan, Senny, Jarrett, Pamela, Lee, Ashley, Lupo, Jody‐Lynn, Matthews, Genevieve, McGibbon, Chris A, Revta, Carolyn, Robillard, Julie M., Shadyab, Alexandre, and Shajan, Sheetal
- Abstract
Background: The Brain Health Support Program (BHSP) of the CAN‐Thumbs Up Study is an online, interactive educational intervention designed to increase dementia literacy, self‐efficacy and address modifiable lifestyle risk factors. Recruiting for a virtual study presented both opportunities and challenges. This included the need to attract participants through means beyond referrals from medical clinics, as well as opportunities to reach geographically diverse Canadian population less feasible with in‐person evaluations. Methods: A comprehensive recruitment strategy for a virtual environment was implemented. A central website provided any interested candidate with study information, and a link to register and provide basic demographic information via a secure form. Potential participants were directed to the website via traditional recruitment through CCNA specialty clinics or existing cohorts, through geotargeting mailing to specific target populations throughout Canada, social medial advertising, partner organizations, and a coordinated National press release. Results: The study had an 8‐month open recruitment window. During this time 964 participants agreed to be contacted through our online portal. Of these, 18‐81 were consented to enroll in the study per month. A total of 7,569 geotargeted postcards were sent, with 153 individuals agreeing to be contacted for the study (2%). Social media advertising generated 974 clicks, with 6.8% subsequently agreeing to be contacted for more information. The majority of participants enrolled in the study came from existing clinical cohorts, CCNA clinical sites, and partner organizations. The recruitment cohort was from a diverse geographical location, 45% urban, 35% suburban, and 20% rural. Overall, the target cohort of 350 subjects was successfully enrolled by the end of the recruitment period. Conclusion: Recruitment for the BHSP intervention demonstrates the value of relatively underutilized clinical trials recruitment strategies, such as geotargeted mailing, and social media advertising. We also show the value of a centralized web site for initial screening of interested participants. While traditional recruitment methods still directed the majority of participants to the recruitment website, geotargeted mailing, social advertising, partner organizations, and earned media can all be scaled up, and will likely play a major role in future recruitments efforts in the broader CAN‐Thumbs Up Study. [ABSTRACT FROM AUTHOR]
- Published
- 2023
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50. Ethical social media use for dementia prevention research: Perspectives of research professionals and community members.
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Hrincu, Viorica, Zaleski, Grayden, and Robillard, Julie M.
- Abstract
Background: Ethical social media use underpins effective online engagement for dementia prevention research. Current social media guidelines are broad and lack empirical justification reflecting the values and priorities of the dementia community. By engaging professional and community experts, we seek to identify the ethical parameters of using social media for dementia prevention research. Method: We conducted semi‐structured, qualitative interviews with professional experts working in dementia research (n = 15; e.g., researchers, coordinators) and experts by experience (n = 14; e.g., persons with lived experience). Experts were from Canada, the USA, the UK, and South America. Discussions were analyzed using thematic qualitative analysis methods. Result: Professional experts revealed a dearth of ethical guidelines when using social media for research engagement, relying on informal sources of guidance to supplement ethics board approval. Areas identified as needing more attention included privacy concerns, handling instances of misinformation and self‐disclosure, the constraints of prescribed language, and moderating public reactions to posts. Experts by experience appreciated the educational benefits of social media for learning about healthy aging. They valued accessible resources but expressed uncertainty on distinguishing between facts and misinformation. Factors enhancing trust of social media content included transparent presentation, traceable sources, relationship‐building, and partnering with community organizations. Having a family history of dementia was a key motivator for engaging on social media. The negative consequences of diminished online privacy, such as stigma or being targeted for predatory practices, were a major ethical concern. Both groups discussed factors that dampen social media's theoretical reach to diverse publics, such as existing inequalities permeating digital access (i.e., age, socioeconomic, literacy, English fluency, urban/rural) and past violations undermining trust. Nevertheless, participants cited social media's wide reach as a societal benefit to improve research participation and awareness of dementia prevention. They acknowledged that younger aging populations have more digital fluency and may benefit more from social media research engagement. Conclusion: Research professionals and community members identified ethical and contextual factors surrounding the use of social media for dementia prevention, and a need for more guidance. The next project phase will use these data to inform the creation of consensus‐based guidelines for brain health research. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
- View/download PDF
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