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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.
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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.
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Ansiedade , Qualidade de Vida , Robótica , Humanos , Adolescente , Masculino , Feminino , Criança , Adulto , Adulto Jovem , Assistência Centrada no PacienteRESUMO
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.
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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 â¼1 month and â¼6 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.
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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.
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Conhecimentos, Atitudes e Prática em Saúde , Promoção da Saúde , Meios de Comunicação de Massa , Humanos , Adolescente , Promoção da Saúde/métodos , Saúde Mental , Criança , Adulto Jovem , Transtornos MentaisRESUMO
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.
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Doença de Alzheimer , Humanos , Doença de Alzheimer/diagnóstico , BiomarcadoresRESUMO
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.
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Cuidadores , Demência , Humanos , Tecnologia , Demência/terapiaRESUMO
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.
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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.
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Transtornos da Alimentação e da Ingestão de Alimentos , Mídias Sociais , Humanos , Adolescente , Saúde Mental , Capacidades de Enfrentamento , PolíticasRESUMO
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.
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Cafeína , Demência , Humanos , Saúde Digital , Relações Médico-Paciente , Demência/diagnósticoRESUMO
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.
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Mídias Sociais , Traumatismos da Medula Espinal , Humanos , Feminino , Cuidadores/psicologia , Traumatismos da Medula Espinal/psicologia , Relações Interpessoais , Apoio SocialRESUMO
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.
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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.
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Tecnologia Assistiva , Humanos , Idoso , Reprodutibilidade dos Testes , CanadáRESUMO
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.
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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.
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Demência , Robótica , Tecnologia Assistiva , Humanos , Idoso , Vida Independente , Cuidadores/psicologia , Interação Social , CanadáRESUMO
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.
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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.
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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, Nâ=â7,896) and Twitter (1-year period, Nâ=â9,323) 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.
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Demência , Mídias Sociais , Humanos , Demência/terapiaRESUMO
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.