Personal value of Alzheimer's disease biomarker testing and result disclosure from the patient and care partner perspective.

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.

A Systematic Review of the Impacts of Media Mental Health Awareness Campaigns on Young People.

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.

The Return of Biomarker Results in Research: Balancing Complexity, Precision, and Ethical Responsibility.

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.

Technology in Dementia Education: An Ethical Imperative in a Digitized World.

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.

Debate: Social media content moderation may do more harm than good for youth mental health.

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.

Short Communication: Lived experience perspectives on genetic testing for a rare eye disease.

This qualitative study explored the motivators and barriers for genetic testing for individuals with aniridia. Semi-structured interviews were conducted with 8 participants. The main findings highlighted the complex and interrelated factors involved in the decision-making process, including family planning, learning about the specific pathogenic variant of the disease and having access to genetic testing. Benefits and potential risks of genetic testing for aniridia were also discussed. For participants, gaining knowledge about their condition was perceived as a benefit, while administrative issues and concerns around privacy were identified as risks. Increased access to quality information about genetic testing and to the service and associated resources are needed to better support people living with aniridia.

What Does ChatGPT Know About Dementia? A Comparative Analysis of Information Quality.

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.

Evaluating the role of social media in providing support for family caregivers of individuals with spinal cord injury.

STUDY DESIGN: Quantitative study. OBJECTIVES: The study aimed to explore Family Caregivers of Individuals with Spinal Cord Injury (FC-SCI) social media use patterns, most frequently used platforms, importance of social media for receiving and providing support, and type of social support (i.e., social companionship, emotional support, informational support) that FC-SCI receive or provide online. SETTING: FC-SCI participants from Canada and USA. METHODS: FC-SCI responded to measures regarding the social media platforms they use to access support, the importance of each platform, and the types of online social support they access through social media. RESULTS: Sample consisted of 115 FC-SCI. Most caregivers were a partner or spouse of the individual with SCI (n = 110) and female (n = 111). Majority of FC-SCI spent 1-3 h daily on social media (n = 74), and Facebook was used predominantly (n = 108), followed by Instagram (n = 92), and YouTube (n = 66). For receiving or providing support, Facebook was ranked most important (60%), followed by Instagram (26%) and YouTube (17%). The mean differences and standard deviation were found for the types of social support: emotional support (25.93 ± 7.60), social companionship (23.85 ± 7.46), and informational support (27.24 ± 7.50). CONCLUSIONS: Using social media for informational support is desired by FC-SCI as it is easily accessible, and time-efficient. The prevalent use of social media for support by FC-SCI demonstrates that social media is a valued platform for support. The support benefits for the mental and physical health of caregivers should be further evaluated.

Companion robots to mitigate loneliness among older adults: Perceptions of benefit and possible deception.

Objective: Given growing interest in companion robots to mitigate loneliness, large-scale 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 socio-demographic 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.

"Functioning better is doing better": older adults' priorities for the evaluation of assistive technology.

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.

Social robotics for children: an investigation of manufacturers' claims.

As the market for commercial children's social robots grows, manufacturers' claims around the functionality and outcomes of their products have the potential to impact consumer purchasing decisions. In this work, we qualitatively and quantitatively assess the content and scientific support for claims about social robots for children made on manufacturers' websites. A sample of 21 robot websites was obtained using location-independent keyword searches on Google, Yahoo, and Bing from April to July 2021. All claims made on manufacturers' websites about robot functionality and outcomes (n = 653 statements) were subjected to content analysis, and the quality of evidence for these claims was evaluated using a validated quality evaluation tool. Social robot manufacturers made clear claims about the impact of their products in the areas of interaction, education, emotion, and adaptivity. Claims tended to focus on the child rather than the parent or other users. Robots were primarily described in the context of interactive, educational, and emotional uses, rather than being for health, safety, or security. The quality of the information used to support these claims was highly variable and at times potentially misleading. Many websites used language implying that robots had interior thoughts and experiences; for example, that they would love the child. This study provides insight into the content and quality of parent-facing manufacturer claims regarding commercial social robots for children.

Towards emotionally aligned social robots for dementia: perspectives of care partners and persons with dementia.

BACKGROUND: Persons living with dementia and their care partners place a high value on aging in place and maintaining independence. Socially assistive robots - embodied characters or pets that provide companionship and aid through social interaction - are a promising tool to support these goals. There is a growing commercial market for these devices, with functions including medication reminders, conversation, pet-like behaviours, and even the collection of health data. While potential users generally report positive feelings towards social robots, persons with dementia have been under-included in design and development, leading to a disconnect between robot functions and the real-world needs and desires of end-users. Furthermore, a key element of social and emotional connectedness in human relationships is emotional alignment - a state where all partners have congruent emotional understandings of a situation. Strong emotional alignment between users and robots will be necessary for social robots to provide meaningful companionship, but a computational model of how to achieve this has been absent from the field. To this end, we propose and test Affect Control Theory (ACT) as a framework to improve emotional alignment between older adults and social robotics. METHOD: Using a Canadian online survey, we introduced respondents to three exemplar social robots with older adult-specific functionalities and evaluated their responses around features, emotions, and ethics using standardized and novel measures (n=171 older adults, n=28 care partners, and n=7 persons living with dementia). RESULT: Overall, participants responded positively to the robots. High priority uses included companionship, interaction, and safety. Reasoning around robot use was pragmatic; curiosity and entertainment were motivators to use, while a perceived lack of need and the mechanical appearance of the robots were detractors. Realistic, cute, and cuddly robots were preferred while artificial-looking, creepy, and toy-like robots were disliked. Most importantly, our evidence supported ACT as a viable model of human-robot emotional alignment. CONCLUSION: This work supports the development of emotionally sophisticated, evidence-based, and user-centered social robotics with older adult- and dementia-specific functionality.

Identifying Risk Factors, Patient-Reported Experience and Outcome Measures, and Data Capture Tools for an Individualized Pain Prediction Tool in Pediatrics: Focus Group Study.

BACKGROUND: The perioperative period is a data-rich environment with potential for innovation through digital health tools and predictive analytics to optimize patients' health with targeted prehabilitation. Although some risk factors for postoperative pain following pediatric surgery are already known, the systematic use of preoperative information to guide personalized interventions is not yet widespread in clinical practice. OBJECTIVE: Our long-term goal is to reduce the incidence of persistent postsurgical pain (PPSP) and long-term opioid use in children by developing personalized pain risk prediction models that can guide clinicians and families to identify targeted prehabilitation strategies. To develop such a system, our first objective was to identify risk factors, outcomes, and relevant experience measures, as well as data collection tools, for a future data collection and risk modeling study. METHODS: This study used a patient-oriented research methodology, leveraging parental/caregiver and clinician expertise. We conducted virtual focus groups with participants recruited at a tertiary pediatric hospital; each session lasted approximately 1 hour and was composed of clinicians or family members (people with lived surgical experience and parents of children who had recently undergone a procedure requiring general anesthesia) or both. Data were analyzed thematically to identify potential risk factors for pain, as well as relevant patient-reported experience and outcome measures (PREMs and PROMs, respectively) that can be used to evaluate the progress of postoperative recovery at home. This guidance was combined with a targeted literature review to select tools to collect risk factor and outcome information for implementation in a future study. RESULTS: In total, 22 participants (n=12, 55%, clinicians and n=10, 45%, family members) attended 10 focus group sessions; participants included 12 (55%) of 22 persons identifying as female, and 12 (55%) were under 50 years of age. Thematic analysis identified 5 key domains: (1) demographic risk factors, including both child and family characteristics; (2) psychosocial risk factors, including anxiety, depression, and medical phobias; (3) clinical risk factors, including length of hospital stay, procedure type, medications, and pre-existing conditions; (4) PREMs, including patient and family satisfaction with care; and (5) PROMs, including nausea and vomiting, functional recovery, and return to normal activities of daily living. Participants further suggested desirable functional requirements, including use of standardized and validated tools, and longitudinal data collection, as well as delivery modes, including electronic, parent proxy, and self-reporting, that can be used to capture these metrics, both in the hospital and following discharge. Established PREM/PROM questionnaires, pain-catastrophizing scales (PCSs), and substance use questionnaires for adolescents were subsequently selected for our proposed data collection platform. CONCLUSIONS: This study established 5 key data domains for identifying pain risk factors and evaluating postoperative recovery at home, as well as the functional requirements and delivery modes of selected tools with which to capture these metrics both in the hospital and after discharge. These tools have been implemented to generate data for the development of personalized pain risk prediction models.

Providing Accessible ReCreation Outdoors-User-Driven Research on Standards: Protocol for Mobile and Web-Based Interviews for Winter Assessments.

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. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38715.

Dementia Research on Facebook and Twitter: Current Practice and Challenges.

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.

User perspectives on emotionally aligned social robots for older adults and persons living with dementia.

Introduction: Socially assistive robots are devices designed to aid users through social interaction and companionship. Social robotics promise to support cognitive health and aging in place for older adults with and without dementia, as well as their care partners. However, while new and more advanced social robots are entering the commercial market, there are still major barriers to their adoption, including a lack of emotional alignment between users and their robots. Affect Control Theory (ACT) is a framework that allows for the computational modeling of emotional alignment between two partners. Methods: We conducted a Canadian online survey capturing attitudes, emotions, and perspectives surrounding pet-like robots among older adults (n = 171), care partners (n = 28), and persons living with dementia (n = 7). Results: We demonstrate the potential of ACT to model the emotional relationship between older adult users and three exemplar robots. We also capture a rich description of participants' robot attitudes through the lens of the Technology Acceptance Model, as well as the most important ethical concerns around social robot use. Conclusions: Findings from this work will support the development of emotionally aligned, user-centered robots for older adults, care partners, and people living with dementia.

What criteria are young people using to select mobile mental health applications? A nominal group study.

Objective: The popularity of smartphone technology provides a unique opportunity to make mental health support widely accessible, especially among young people. Despite the promising results of some mobile mental health support applications, the overwhelming number of available applications (apps) on the market makes it difficult to make a choice that will be safe and effective. Currently, widely available tools are either developed by experts, without end user input or are solely based on usability rankings. Thus, it remains unclear what aspects of mental health apps are important for young people. The purpose of this study was to determine what criteria young adults use when they select mental health applications and what is the relative importance of these criteria to inform the development of a user-driven app-rating platform. Methods: We conducted 4 group sessions with 47 youth and young adults aged 15-25 in British Columbia, Canada using a modified nominal group technique. This method allows for establishing the relative importance of criteria in a structured group discussion. We recorded, transcribed and analysed the resulting data using qualitative content analysis and quantitative methods. Results: Criteria that are the most important to young adults when selecting mental health apps include accessibility, security and grounding in scientific evidence. We identified specific aspects of the discussed criteria which were ranked in the order of importance. Conclusion: Consulting end users about their priorities when evaluating mental health apps ensures that their values and priorities are incorporated into future app-rating platforms, alongside expert opinions. The present study also outlines the common contexts in which apps are used as well as their desirable features to inform mental health app development.

Community and Provider Evaluation of a Canadian Dementia Support Services Program.

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.

Pain management communication between parents and nurses after pediatric outpatient surgery.

PURPOSE: The purpose of this study was to explore parent-nurse pain management communication during a child's discharge process following pediatric outpatient surgery. DESIGN AND METHODS: 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. RESULTS: 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. CONCLUSIONS: Several strengths of the nurse communication approach were identified, and parent questions highlighted a need for greater understanding around pain medication. PRACTICE IMPLICATIONS: These findings will help guide effective pain management communication and care for young patients and their families.