The League: A person-centred approach to the development of social robotics for paediatric anxiety.

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.

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.

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.

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.

The impact of respite care from the perspectives and experiences of people with amyotrophic lateral sclerosis and their care partners: a qualitative study.

BACKGROUND: Respite care provides caregiving support to people with amyotrophic lateral sclerosis (ALS) and their care partners by providing the care partner with temporary relief from their caregiving duties. The aim of this study was to explore the impact of respite care through the perspectives and lived experiences of people with ALS and their care partners. METHODS: Thirty-one dyads (62 participants) of people with ALS and their care partners were assigned to either the control group or the respite care intervention. Respite care was provided in the form of home-based services. Semi-structured interviews were conducted with participants at baseline and after a six-month period to gather perspectives on ALS caregiving, perceptions of respite care, and the respite care experience. Interviews were transcribed and subjected to thematic analysis. RESULTS: Caregiving challenges specific to the care partner and the patient-care partnership relationship were identified. Overall, people with ALS and care partners responded positively to in-home respite care and reported improved relationship quality, more time for the care partner to pursue personal commitments or take a break, and improved emotional well-being for both the person with ALS and the care partner. Barriers and concerns were raised surrounding privacy and staff consistency. CONCLUSION: This study highlights respite care as a critical tool to alleviate caregiving challenges and support the needs of people with ALS and their care partners. Engagement with the ALS community and formal evaluations of respite care services should be prioritized in order to minimize barriers and best meet the needs of people with ALS and their care partners.

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.

Clinical research in dementia: A perspective on implementing innovation.

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.

Committee on High-quality Alzheimer's Disease Studies (CHADS) consensus report.

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.

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.

The Time Is Now: A FASTER Approach to Generate Research Evidence for Technology-Based Interventions in the Field of Disability and Rehabilitation.

Current approaches for generating high-quality research evidence for technology-based interventions in the field of disability and rehabilitation are inappropriate. Prevailing approaches often focus on randomized controlled trials as standard and apply clinical trial practices designed for pharmaceuticals; such approaches are unsuitable for technology-based interventions and are counterproductive to the goals of supporting people with disabilities and creating benefits for society. This communication is designed to: (1) advocate for the use of alternative approaches to generating evidence in the development and evaluation of technology-based interventions; (2) propose an alternative framework and guiding principles; and (3) stimulate action by multiple disciplines and sectors to discuss, adopt, and promote alternative approaches. Our Framework for Accelerated and Systematic Technology-based intervention development and Evaluation Research (FASTER) is informed by established innovation design processes, complex intervention development, evaluation, and implementation concepts as well as our collective experiences in technology-based interventions research and clinical rehabilitation practice. FASTER is intended to be meaningful, timely, and practical for researchers, technology developers, clinicians, and others who develop these interventions and seek evidence. We incorporate research methods and designs that better align with creating technology-based interventions and evidence for integration into practice. We propose future activities to improve the generation of research evidence, enable the selection of research methods and designs, and create standards for evidence evaluation to support rigor and applicability for technology-based interventions. With this communication we aim to improve and advance technology-based intervention integration from conception to use, thus responsibly accelerating innovation to have greater positive benefit for people and society.

A Global Survey of Patient and Caregiver Experiences Throughout Care for Developmental Dysplasia of the Hip.

BACKGROUND: Diagnosis and treatment for developmental dysplasia of the hip (DDH) varies greatly depending on condition severity, age at diagnosis, and professional opinion. Little is known about patient experiences across the globe. We aimed to characterize global patient and caregiver experiences during DDH care and to highlight patient-identified priorities. METHODS: We developed a cross-sectional survey in collaboration with 7 DDH outreach organizations. DDH patients and/or their caregivers (above 18 y old) were invited to complete an international online survey about their experiences. Participants were recruited through web media of all collaborating organizations. Data collection took place over 3 months. Descriptive statistics were used to analyze quantitative results. Qualitative content analysis was used to categorize open-ended responses. RESULTS: A total of 739 participants completed the survey, representing 638 (86.3%) parents/guardians of DDH patients, and 101 (13.7%) patients. Three hundred eighty-six (52.2%) participants received diagnosis by 3 months of age; mean age of diagnosis was 15.96 months (90% confidence interval=12.04, 19.91). Of 211 participants with family history of DDH, 68 (32.3%) did not receive DDH screening. Of 187 patients born breech, 82 (43.9%) did not receive DDH screening. In total, 36/94 (38.3%) participants with both family history and breech birth did not receive DDH screening. Most participants reported treatment (696/730, 95.3%), including bracing (n=461) surgery (n=364), and/or closed reduction (n=141). A total of 144 patients reported >1 surgery; 82 reported >3 surgeries. Participants reported a range of 1 to 400 visits to health care professionals for DDH care across 1 to 66 years. Lack of information and resources on treatment practicalities and timelines, along with emotional burden of diagnosis, were greatest challenges reported. CONCLUSION: Results demonstrate that DDH diagnosis and treatment can pose significant burden on patients and caregivers. Reliable public information is needed to support those affected. Global educational efforts are needed to raise awareness of DDH risk factors, signs, and symptoms among care providers, to increase awareness and improve identification, screening, and monitoring of at-risk children.

Evaluation Tools for Assistive Technologies: A Scoping Review.

OBJECTIVE: Assistive technologies (ATs) support independence and well-being in people with cognitive, perceptual, and physical limitations. Given the increasing availability and diversity of ATs, evaluating the usefulness of current and emerging ATs is crucial for informed comparison. We aimed to chart the landscape and development of AT evaluation tools (ETs; ATETs) across disparate fields in order to improve the process of AT evaluation and development. DATA SOURCES: We performed a scoping review of ATETs through database searching of MEDLINE, Embase, CINAHL, HaPI, PsycINFO, Cochrane Reviews, and Compendex as well as citation mining. STUDY SELECTION: Articles explicitly referencing ATETs were retained for screening. We included ETs if they were designed to specifically evaluate ATs. DATA EXTRACTION: We extracted 5 attributes of ATETs: AT category, construct evaluated, conceptual frameworks, type of end user input used for ATET development, and presence of validity testing. DATA SYNTHESIS: From screening 23,434 records, we included 159 ATETs. Specificity of tools ranged from single to general ATs across 40 AT categories. Satisfaction, functional performance, and usage were the most common constructs of 103 identified. We identified 34 conceptual frameworks across 53 ETs. Finally, 36% incorporated end user input and 80% showed validation testing. CONCLUSIONS: We characterized a wide range of AT categories with diverse approaches to their evaluation based on varied conceptual frameworks. Combining these frameworks in future ATETs may provide more holistic views of AT usefulness. ATET selection may be improved with guidelines for conceptually reconciling results of disparate ATETs. Future ATET development may benefit from more integrated approaches to end user engagement.

Investigating the concept of participant burden in aging technology research.

BACKGROUND: Research participation burden, despite being an integral concept in research ethics, is not well-conceptualized in the context of the use of technology in research. This knowledge gap is especially critical for the older adult population as new technology solutions are increasingly embedded in clinical trials for this demographic. Our objective was to investigate how older adults conceptualize participation burden in contact for research participation and research trials using technology. METHODS: We developed and conducted an Internet-based survey consisting of 22 multiple choice and Likert-scale type questions investigating older adults' preferred means and frequency of being contacted about research opportunities, their willingness to use specific kinds of technology and their concerns regarding technology use in clinical trials. We received a total of 273 completed surveys from eligible participants aged 50 or older. RESULTS: Older adults preferred to be contacted about research opportunities monthly, over email. Survey participants were least willing to use monitoring devices and their biggest concern was the security of the storage of information gathered by technology. This concern was positively correlated with age. Participants indicated a preference to use technology daily, in short sessions, preferably in a way that can be incorporated into their daily routine. CONCLUSIONS: Results from this work provide insights for the design of effective recruitment campaigns as well as technology interventions in clinical trials through minimizing the burden of research participation.

Technology and Dementia: The Future is Now.

BACKGROUND: Technology has multiple potential applications to dementia from diagnosis and assessment to care delivery and supporting ageing in place. OBJECTIVES: To summarise key areas of technology development in dementia and identify future directions and implications. METHOD: Members of the US Alzheimer's Association Technology Professional Interest Area involved in delivering the annual pre-conference summarised existing knowledge on current and future technology developments in dementia. RESULTS: The main domains of technology development are as follows: (i) diagnosis, assessment and monitoring, (ii) maintenance of functioning, (iii) leisure and activity, (iv) caregiving and management. CONCLUSIONS: The pace of technology development requires urgent policy, funding and practice change, away from a narrow medical approach, to a holistic model that facilitates future risk reduction and prevention strategies, enables earlier detection and supports implementation at scale for a meaningful and fulfilling life with dementia.

The QUEST for quality online health information: validation of a short quantitative tool.

BACKGROUND: Online health information is unregulated and can be of highly variable quality. There is currently no singular quantitative tool that has undergone a validation process, can be used for a broad range of health information, and strikes a balance between ease of use, concision and comprehensiveness. To address this gap, we developed the QUality Evaluation Scoring Tool (QUEST). Here we report on the analysis of the reliability and validity of the QUEST in assessing the quality of online health information. METHODS: The QUEST and three existing tools designed to measure the quality of online health information were applied to two randomized samples of articles containing information about the treatment (n = 16) and prevention (n = 29) of Alzheimer disease as a sample health condition. Inter-rater reliability was assessed using a weighted Cohen's kappa (κ) for each item of the QUEST. To compare the quality scores generated by each pair of tools, convergent validity was measured using Kendall's tau (τ) ranked correlation. RESULTS: The QUEST demonstrated high levels of inter-rater reliability for the seven quality items included in the tool (κ ranging from 0.7387 to 1.0, P < .05). The tool was also found to demonstrate high convergent validity. For both treatment- and prevention-related articles, all six pairs of tests exhibited a strong correlation between the tools (τ ranging from 0.41 to 0.65, P < .05). CONCLUSIONS: Our findings support the QUEST as a reliable and valid tool to evaluate online articles about health. Results provide evidence that the QUEST integrates the strengths of existing tools and evaluates quality with equal efficacy using a concise, seven-item questionnaire. The QUEST can serve as a rapid, effective, and accessible method of appraising the quality of online health information for researchers and clinicians alike.

Ethical adoption: A new imperative in the development of technology for dementia.

INTRODUCTION: Technology interventions are showing promise to assist persons with dementia and their carers. However, low adoption rates for these technologies and ethical considerations have impeded the realization of their full potential. METHODS: Building on recent evidence and an iterative framework development process, we propose the concept of "ethical adoption": the deep integration of ethical principles into the design, development, deployment, and usage of technology. RESULTS: Ethical adoption is founded on five pillars, supported by empirical evidence: (1) inclusive participatory design; (2) emotional alignment; (3) adoption modelling; (4) ethical standards assessment; and (5) education and training. To close the gap between adoption research, ethics and practice, we propose a set of 18 practical recommendations based on these ethical adoption pillars. DISCUSSION: Through the implementation of these recommendations, researchers and technology developers alike will benefit from evidence-informed guidance to ensure their solution is adopted in a way that maximizes the benefits to people with dementia and their carers while minimizing possible harm.

Use of nonintrusive sensor-based information and communication technology for real-world evidence for clinical trials in dementia.

Cognitive function is an important end point of treatments in dementia clinical trials. Measuring cognitive function by standardized tests, however, is biased toward highly constrained environments (such as hospitals) in selected samples. Patient-powered real-world evidence using information and communication technology devices, including environmental and wearable sensors, may help to overcome these limitations. This position paper describes current and novel information and communication technology devices and algorithms to monitor behavior and function in people with prodromal and manifest stages of dementia continuously, and discusses clinical, technological, ethical, regulatory, and user-centered requirements for collecting real-world evidence in future randomized controlled trials. Challenges of data safety, quality, and privacy and regulatory requirements need to be addressed by future smart sensor technologies. When these requirements are satisfied, these technologies will provide access to truly user relevant outcomes and broader cohorts of participants than currently sampled in clinical trials.

Practical social media recommendations for dementia prevention researchers.

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.

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.