Perspectives on Accessing Mental Health Supports for Youth Living With Post-Traumatic Stress Symptoms After a Solid Organ Transplant.

Background: Many children and adolescents who undergo solid organ transplants (SOT) develop post-traumatic stress (PTS) symptoms. Despite its prevalence and strong association with long-term impairments in quality of life, PTS is often overlooked as a major co-morbidity in many transplant programs. To address this unmet need, the purpose of this study was to explore the factors that impede or facilitate awareness of PTS, access to resources, and readiness to engage with mental health services.

The quantified baby: real-world use of infant sleep monitoring technologies and its impact on parent mental health and medical decision-making.

Background: Managing sleep is a challenging experience in early parenthood, and infant sleep problems are associated with negative outcomes within the family. A large market of devices to monitor infants' real-time health information during sleep has emerged, including smart cameras, under-mattress sensors and wearable devices. The impacts of these products on maternal and parental mental health and medical decision-making are poorly understood.

Development of a Multimedia Electronic Consent Platform for Biobanking and Research Utilizing Opinions from Children, Teens, and Adults.

Ethical research recruitment relies on effective informed consent. We sought feedback and acceptance from users regarding an interactive, multimedia, electronic consent (e-consent) platform for recruitment of research participants to the BC Children's Hospital BioBank (BCCHB). We aimed to enhance user experience when considering research participation and documenting consent decisions through the modality of an e-consent.

Brain health PRO/Santé cerveau PRO: The development of a web-based program for dementia literacy and risk factor reduction.

Background: Online educational programs focused on ways to improve brain health could increase participant literacy, empowerment, and engagement in activities that support personal brain health, potentially reducing dementia risk.

Objectives: Our goal was to develop an evidence-based online educational program with a focus on risk and protective factors for dementia. Here we present the rationale and features of the program and include results from a pilot study that assessed usability and acceptability.

Designing user-centered policy for social robotics: policy analysis and consultation with the aging and dementia community.

Purpose: Social robots are a promising assistive technology to support older adults in home and healthcare environments. Engaging end-users in all stages of social robot research, development, and deployment is critical to adoption. However, the voices of end-users are missing from policies about social robots.

Use of lecanemab and donanemab in the Canadian healthcare system: Evidence, challenges, and areas for future research.

Lecanemab and donanemab are monoclonal antibody therapies that remove amyloid-beta from the brain. They are the first therapies that alter a fundamental mechanism, amyloid-beta deposition, in Alzheimer disease (AD). To inform Canadian decisions on approval and use of these drugs, the Canadian Consortium on Neurodegeneration in Aging commissioned Work Groups to review evidence on the efficacy and safety of these new therapies, as well as their projected impacts on Canadian dementia systems of care.

Towards a critical posthumanist perspective on participatory design.

Participatory design places a strong emphasis on human agency, user perspectives and democratic ideals of inclusivity and empowerment, and is therefore often associated with humanist principles and values. In contrast, critical posthumanism questions key humanist assumptions about the centred and singular nature of the 'human condition'. Instead, posthumanism points to the evolving and diverse lived experiences of people and how these are transformed by (and are transforming of) culture, environment and technology.

"That's me at my best": perspectives of older adults on involvement in technology research.

Creating assistive technology for older adults requires a deep understanding of their needs, values and preferences. Human-centred approaches can be used to engage older adults in technology research to help ensure that end solutions are ethically aligned, relevant and responsive to their priorities. However, the value of cocreation is not universally acknowledged.

Parental Perspectives on Pediatric Surgical Recovery: Narrative Analysis of Free-Text Comments From a Postoperative Survey.

Background: Qualitative experience data can inform health care providers how to best support families during pediatric postoperative recovery. Patient experience data can also provide actionable information to guide health care quality improvement; positive feedback can confirm the efficacy of current practices and systems, while negative comments can identify areas for improvement.

Objective: This study aimed to understand families' perspectives regarding their children's surgical recovery using qualitative patient experience data (free-text comments) from a prospective cohort study conducted within a larger study developing a postoperative-outcome risk stratification model.

Impact of a national dementia research consortium: The Canadian Consortium on Neurodegeneration in Aging (CCNA).

The Canadian Consortium on Neurodegeneration in Aging (CCNA) was created by the Canadian federal government through its health research funding agency, the Canadian Institutes for Health Research (CIHR), in 2014, as a response to the G7 initiative to fight dementia. Two five-year funding cycles (2014-2019; 2019-2024) have occurred following peer review, and a third cycle (Phase 3) has just begun. A unique construct was mandated, consisting of 20 national teams in Phase I and 19 teams in Phase II (with research topics spanning from basic to clinical science to health resource systems) along with cross-cutting programs to support them.

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 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.

"Dementia Doesn't Mean That Life Doesn't Have More Wonderful Things Ahead": A Qualitative Study Evaluating a Canadian Dementia Support Services Program.

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).

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 ( = 142). In the personal utility arm of the study, semi-structured phone interviews were conducted with a subset of patients ( = 34), and separately with their care partners ( = 31).

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.

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.

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.

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.

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.

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.

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.

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%).