Tracing Tomorrow: young people's preferences and values related to use of personal sensing to predict mental health, using a digital game methodology.

BACKGROUND: Use of personal sensing to predict mental health risk has sparked interest in adolescent psychiatry, offering a potential tool for targeted early intervention. OBJECTIVES: We investigated the preferences and values of UK adolescents with regard to use of digital sensing information, including social media and internet searching behaviour. We also investigated the impact of risk information on adolescents' self-understanding. METHODS: Following a Design Bioethics approach, we created and disseminated a purpose-built digital game (www.tracingtomorrow.org) that immersed the player-character in a fictional scenario in which they received a risk assessment for depression Data were collected through game choices across relevant scenarios, with decision-making supported through clickable information points. FINDINGS: The game was played by 7337 UK adolescents aged 16-18 years. Most participants were willing to personally communicate mental health risk information to their parents or best friend. The acceptability of school involvement in risk predictions based on digital traces was mixed, due mainly to privacy concerns. Most participants indicated that risk information could negatively impact their academic self-understanding. Participants overwhelmingly preferred individual face-to-face over digital options for support. CONCLUSIONS: The potential of digital phenotyping in supporting early intervention in mental health can only be fulfilled if data are collected, communicated and actioned in ways that are trustworthy, relevant and acceptable to young people. CLINICAL IMPLICATIONS: To minimise the risk of ethical harms in real-world applications of preventive psychiatric technologies, it is essential to investigate young people's values and preferences as part of design and implementation processes.

Online peer-led intervention to improve adolescent wellbeing during the COVID-19 pandemic: a randomised controlled trial.

BACKGROUND: The COVID-19 pandemic and associated lockdown measures have posed a major risk to young people's wellbeing, which might be ameliorated by peer-led programmes. Using a randomised controlled trial (ISRCTN registry, number ISRCTN77941736 https://doi.org/10.1186/ISRCTN77941736 ), we tested the short-term efficacy of an online peer-led intervention designed to equip young people with skills to support their mental health and wellbeing during the COVID-19 pandemic. METHODS: Through schools and social media ads, we recruited one hundred young people (aged 16-18) in the UK, focusing on areas with the highest incidence of COVID cases. In December 2020, participants were randomly allocated (1:1) to immediate 5 day Coping during COVID course (n = 49) or a wait-list (n = 51) through a survey software automated randomisation tool. Our primary outcome was self-reported mental wellbeing, and secondary outcomes included self-reported social connectedness, coping skills, sense of purpose, self-esteem, and self-compassion. We also collected qualitative reports of participants' perceived impact of the course and intentions to use what they have learnt from the course in their life moving forward. Assessments were completed at baseline, 1 week post randomisation (primary endpoint), and 2-weeks post-randomisation. RESULTS: Young people allocated to the peer-led intervention reported significantly greater wellbeing, social connectedness, coping skills, sense of purpose, self-esteem, and self-compassion 1 week and 2 weeks post-randomisation (medium-large effect sizes). Specific benefits to mental health, sense of purpose and connectedness were also emphasised in qualitative reports. CONCLUSIONS: An online, peer-led intervention targeting youth wellbeing during the context of the COVID-19 pandemic brought benefits across a range of outcomes, suggesting that structured programmes that incorporate peer-to-peer support can be a valuable approach to promote young people's wellbeing and foster psychological resources during a health crisis.

Emotional experiences and psychological well-being in 51 countries during the COVID-19 pandemic.

The COVID-19 pandemic presents challenges to psychological well-being, but how can we predict when people suffer or cope during sustained stress? Here, we test the prediction that specific types of momentary emotional experiences are differently linked to psychological well-being during the pandemic. Study 1 used survey data collected from 24,221 participants in 51 countries during the COVID-19 outbreak. We show that, across countries, well-being is linked to individuals' recent emotional experiences, including calm, hope, anxiety, loneliness, and sadness. Consistent results are found in two age, sex, and ethnicity-representative samples in the United Kingdom (n = 971) and the United States (n = 961) with preregistered analyses (Study 2). A prospective 30-day daily diary study conducted in the United Kingdom (n = 110) confirms the key role of these five emotions and demonstrates that emotional experiences precede changes in well-being (Study 3). Our findings highlight differential relationships between specific types of momentary emotional experiences and well-being and point to the cultivation of calm and hope as candidate routes for well-being interventions during periods of sustained stress. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

A collective autoethnography of coproduction in mental health research by academic researchers and young people in Brazil.

INTRODUCTION: Coproduction of mental health research and interventions involving researchers and young people is increasingly common. However, this model raises challenges, related, for instance, to communication, power and control. This paper narrates-from a collective first-person perspective-the lived experience of coproduction of a digital intervention by institutional researchers and young citizen researchers in Brazil. METHOD: This study employed a collaborative autoethnographic methodology, utilising autobiographical data such as meeting recordings, individual notes and collective guided reflections on the coproduction process. Our analysis focused on challenges and solutions that arose during the process. RESULTS: Throughout the project, we created formal and informal mechanisms for accountability, transparency and fair inclusion of multiple voices. We engaged in mutual capacity-building, invested in building interpersonal knowledge, and implemented practices to reduce overload and promote equitable participation. Through ongoing reflection and readjustment in response to challenges, we progressively embraced more democratic and egalitarian values. The collective care invested in the process fostered synergy, trust, and intergroup friendship. CONCLUSION: Our experience points to the value of creating a space for multiple research identities: the citizen young person and the institutional researcher, both of whom critically reflect on their roles in the research process. Our focus on coproduced care calls into question participation metaphors that represent the process via a single axis-young people-who linearly progress from minimal participation to full autonomy. Instead, our analysis highlights the importance of a social and caring bond that supports the radical co-production of innovative health solutions in contexts of vulnerability.

Agents of Change for Mental Health: A Survey of Young People's Aspirations for Participation Across Five Low- and Middle-Income Countries.

PURPOSE: Effective intervention, policy, and research in mental health and well-being (MHWB) require young people to be understood not only as beneficiaries, but also as active agents in codesigning and implementing initiatives. To identify pathways for young people's participation in promoting MHWB in low- and middle-income countries (LMICs), this study surveyed young people's aspirations for engagement, their spheres of influence, capacity building needs, and key barriers to participation. METHODS: Using U-Report, United Nations Children's Emergency Fund's social messaging tool and data collection platform, we distributed a short quantitative survey to a nonrepresentative, but large sample of young people aged 15-29 across five LMICs: Nigeria, Brazil, Jamaica, South Africa, and Burundi. RESULTS: A total of 42,689 young people responded, with representation from most or all provinces within each country. Participants' average age was 23.8 years (SD = 3.77). Young people's core aspirations were to join a mental health awareness project and to support their peers. Participants considered schools and community settings to be the most important spheres for engagement. Lack of information about mental health was the main perceived barrier to participation, and mental health classes the main training need. DISCUSSION: In many countries, MHWB is not taught or discussed in schools and youth-led mental health interventions are rare. Findings from this study reveal clear aspirations for participatory engagement to promote MHWB among young people in LMICs. To support meaningful participation, policymakers and youth service providers must ensure that young people have access to mental health literacy training and opportunities to raise awareness in schools or community settings.

Online peer support training to promote adolescents' emotional support skills, mental health and agency during COVID-19: Randomised controlled trial and qualitative evaluation.

Adolescents often look to their peers for emotional support, so it is critical that they are prepared to take on a supportive role, especially during a health crisis. Using a randomised controlled trial (ISRCTN99248812, 28/05/2020), we tested the short-term efficacy of an online training programme to equip young people with skills to support to their peers' mental wellbeing during the COVID-19 pandemic. In June 2020, one-hundred UK adolescents (aged 16-18) recruited through social media were randomly allocated (1:1) to immediate 5-day peer support training or a wait-list, via an independently generated allocation sequence. Primary outcomes were indicators of ability to help others (motivation, perceived skills, frequency of help provided, compassion to others and connectedness to peers). Secondary outcomes included emotional symptoms, mental wellbeing, and indicators of agency (civic engagement and self-efficacy). We also collected qualitative reports of participants' experience. Assessments were completed at baseline and 1 week post randomisation (primary endpoint), and up to 4 weeks post randomisation (training group only). The training increased support-giving skills, frequency of providing support, compassion and peer connectedness (medium-large-effect sizes), but not motivation to provide support, 1 week post randomisation, compared to controls. Gains in the training group were maintained 4 weeks post randomisation. Training also improved adolescents' mental health and agency, and qualitative reports revealed further positive outcomes including increased self-care and empowerment. Leveraging digital platforms that are familiar to young people, peer support training has the potential to enable adolescents to support their own and their peers' mental wellbeing during a health crisis.

Testing Design Bioethics Methods: Comparing a Digital Game with a Vignette Survey for Neuroethics Research with Young People.

BACKGROUND: Over the last decades, the neurosciences, behavioral sciences, and the social sciences have all seen a rapid development of innovative research methods. The field of bioethics, however, has trailed behind in methodological innovation. Despite the so-called "empirical turn" in bioethics, research methodology for project development, data collection and analysis, and dissemination has remained largely restricted to surveys, interviews, and research papers. We have previously argued for a "Design Bioethics" approach to empirical bioethics methodology, which develops purpose-built methods for investigation of bioethical concerns. In this paper we compare a research tool created using a design bioethics approach to a "methods-as-usual" approach in empirical bioethics. METHODS: Our study compared dimensions of engagement with a digital game we created, called "Tracing Tomorrow," to a standard vignette survey. The two tools investigated the same subject matter, digital phenotyping for mental health, in a sample of 301 UK adolescents. RESULTS: Participants who played the game reported a greater sense of presence, emotional engagement, cognitive absorption, and mental health ethics insight, compared to participants who completed the vignette survey. Perceived authenticity and curiosity/motivation to learn more was equivalent for both methods. CONCLUSION: The results of this study highlights the importance of purpose-built methodology for empirical bioethics research.

Data sharing in the age of predictive psychiatry: an adolescent perspective.

BACKGROUND: Advances in genetics and digital phenotyping in psychiatry have given rise to testing services targeting young people, which claim to predict psychiatric outcomes before difficulties emerge. These services raise several ethical challenges surrounding data sharing and information privacy. OBJECTIVES: This study aimed to investigate young people's interest in predictive testing for mental health challenges and their attitudes towards sharing biological, psychosocial and digital data for such purpose. METHODS: Eighty UK adolescents aged 16-18 years took part in a digital role-play where they played the role of clients of a fictional predictive psychiatry company and chose what sources of personal data they wished to provide for a risk assessment. After the role-play, participants reflected on their choices during a peer-led interview. FINDINGS: Participants saw multiple benefits in predictive testing services, but were highly selective with regard to the type of data they were willing to share. Largely due to privacy concerns, digital data sources such as social media or Google search history were less likely to be shared than psychosocial and biological data, including school grades and one's DNA. Participants were particularly reluctant to share social media data with schools (but less so with health systems). CONCLUSIONS: Emerging predictive psychiatric services are valued by young people; however, these services must consider privacy versus utility trade-offs from the perspective of different stakeholders, including adolescents. CLINICAL IMPLICATIONS: Respecting adolescents' need for transparency, privacy and choice in the age of digital phenotyping is critical to the responsible implementation of predictive psychiatric services.

How to build a game for empirical bioethics research: The case of 'Tracing Tomorrow'.

It is becoming increasingly clear that the field of empirical bioethics requires methodological innovations that can keep up with the scale and pace of contemporary research in health and medicine. With that in mind, we have recently argued for Design Bioethics-the use of purpose-built, engineered research tools that allow researchers to investigate moral decision-making in ways that are embodied and contextualized. In this paper, we outline the development, testing and implementation of a novel prototype tool in the Design Bioethics Workshop-with each step illustrated with collected data. Titled 'Tracing Tomorrow' (www.tracingtomorrow.org), the tool is a narrative game to investigate young people's values and preferences in the context of digital phenotyping for mental health. The process involved (1) Working with young people to discover, validate and define the morally relevant cases or problems, (2) Building and testing the game concept in collaboration with relevant groups and game developers, (3) Developing prototypes that were tested and iterated in partnership with groups of young people and game developers and (4) Disseminating the game to young people to collect data to investigate research questions. We argue that Design Bioethics yields tools that are relevant, representative and meaningful to target populations and provide improved data for bioethics analysis. PATIENT OR PUBLIC CONTRIBUTION: In planning and conducting this study, we consulted with young people from a diverse range of backgrounds, including the NeurOX Young People's Advisory Group, the What Lies Ahead Junior Researchers Team, Censuswide youth participants and young people from the Livity Youth Network.

Ethical issues in participatory arts methods for young people with adverse childhood experiences.

CONTEXT: Participatory arts-based methods such as photovoice, drama and music have increasingly been used to engage young people who are exposed to psychosocial risks. These methods have the potential to empower youth and provide them with an accessible and welcoming environment to express and manage difficult feelings and experiences. These effects are, however, dependent on the way these methods are implemented and how potential ethical concerns are handled. OBJECTIVE: Using the current literature on arts-based health research as a foundation, this paper examines ethical issues emerging from participatory arts methods with young people with traumatic experiences. RESULTS: We present a typology covering relevant issues such as power, accessibility, communication, trust and ownership, across the domains of partnership working, project entry, participation and dissemination. Drawing on our extensive clinical and research experiences, existing research and novel in-practice examples, we offer guidance for ethical dilemmas that might arise at different phases of research. CONCLUSION: Adequate anticipation and consideration of ethical issues, together with the involvement of young people, will help ensure that arts methods are implemented in research and practice with young people in a fair, meaningful and empowering way. PATIENT OR PUBLIC CONTRIBUTION: The issues reviewed are largely based on the authors' experience conducting participatory research. Each of the projects referenced has its own systems for PPI including, variously, consultations with advisory groups, coproduction, youth ambassadors and mentor schemes. One of the coauthors, Josita Kavitha Thirumalai, is a young person trained in peer support and has provided extensive input across all stages.

Young people's moral attitudes and motivations towards direct-to-consumer genetic testing for inherited risk of Alzheimer disease.

PURPOSE: Since the U.S. Food and Drug Administration approved sales of genetic tests for late-onset Alzheimer's disease (LOAD) risk, a heated debate has arisen over whether these tests should indeed be offered online and direct-to-consumer (DTC). As this debate progresses, it is important to understand the ethical perspectives and motivations of young people, who are a key target group for DTC services. METHODS: Thirty-one grandchildren of people with LOAD, aged 16-26, were interviewed about their moral attitudes and motivations with regards to DTC genetic testing for LOAD. RESULTS: Even though most participants claimed that people should have the right to access these services, they also expressed concerns about potential distress in response to learning about risk, particularly for minors. About a third were interested in testing, primarily to gain self-knowledge regarding one's health; however, face-to-face services were vastly preferred over the online option. CONCLUSION: While DTC genetic companies often market their services as a "fun consumer product", DTC testing for LOAD was largely understood as a serious health screening procedure and a vulnerable moment in the lives of young people in Alzheimer's families. This points to the importance of appropriate standards of information and support to young people pre- and post-testing.

Design Bioethics: A Theoretical Framework and Argument for Innovation in Bioethics Research.

Empirical research in bioethics has developed rapidly over the past decade, but has largely eschewed the use of technology-driven methodologies. We propose "design bioethics" as an area of conjoined theoretical and methodological innovation in the field, working across bioethics, health sciences and human-centred technological design. We demonstrate the potential of digital tools, particularly purpose-built digital games, to align with theoretical frameworks in bioethics for empirical research, integrating context, narrative and embodiment in moral decision-making. Purpose-built digital tools can engender situated engagement with bioethical questions; can achieve such engagement at scale; and can access groups traditionally under-represented in bioethics research and theory. If developed and used with appropriate rigor, tools motivated by "design bioethics" could offer unique insights into new and familiar normative and empirical issues in the field.

Love and peace across generations: Biobehavioral systems and global partnerships.

Children's environments - especially relationships with caregivers - sculpt not only developing brains but also multiple bio-behavioral systems that influence long-term cognitive and socioemotional outcomes, including the ability to empathize with others and interact in prosocial and peaceful ways. This speaks to the importance of investing resources in effective and timely programs that work to enhance early childhood development (ECD) and, by extension, reach communities at-scale. Given the limited resources currently devoted to ECD services, and the devastating impact of COVID-19 on children and communities, there is a clear need to spur government leaders and policymakers to further invest in ECD and related issues including gender and racial equity. This essay offers concrete examples of scholarly paradigms and leadership efforts that focus on child development to build a peaceful, equitable, just, and sustainable world. As scholars and practitioners, we need to continue to design, implement, assess, and revise high-quality child development programs that generate much-needed evidence for policy and programmatic changes. We must also invest in global partnerships to foster the next generation of scholars, practitioners, and advocates dedicated to advance our understanding of the bio-behavioral systems that underlie love, sociality, and peace across generations. Especially where supported by structural interventions, ECD programs can help create more peaceful, just, and socially equitable societies.

Young people's advisory groups in health research: scoping review and mapping of practices.

BACKGROUND: Young people's advisory groups (YPAGs) for research are comprised of children or adolescents who work with researchers to shape different stages of the research process. Their involvement is expected to ensure studies better reflect the preferences and needs of targeted youth populations. However, despite their increasing use in health research, there is little systematic evidence on the methods and impacts associated with YPAGs. METHOD: To address this gap, we conducted a scoping review of YPAGs in youth-focused health studies. We systematically searched MEDLINE for empirical studies in populations between 12 years and 18 years of age published in 2019. If a potential YPAG was identified, authors were contacted for additional information about the activities and level of involvement of the YPAG. FINDINGS: Of all studies that collected primary data from persons aged 12-18 years, only 21 studies reported using youth advice during their research. This represents less than 1% of all published empirical child and adolescent studies. There was variation in the type of research activity undertaken by YPAGs and their level of involvement. Most studies involved YPAGs in co-production of research design and/or in dissemination activities. The majority of authors that responded were positive about the impact of YPAGs. INTERPRETATION: Recommendations for consistent reporting of YPAG involvement in empirical studies include reporting on the match between YPAG and study populations, frequency/format of meetings, and the nature and level of involvement.

Debate: Promoting capabilities for young people's agency in the COVID-19 outbreak.

The COVID-19 pandemic is having a pervasive effect on young people's mental health and well-being, giving rise to feelings of deep uncertainty and lack of control. Inspired by Amartya Sen's capabilities framework, we argue that building capacity and creating opportunities for community and civic engagement during this time will help young people gain agency and well-being. We highlight two key areas for participatory engagement: coproduction of research, and peer-led interventions. Providing capabilities for young people's agency not only builds personal resilience, but also strengthens the quality of our research, interventions and overall response to the global health crisis.

The role of oxytocin in the facial mimicry of affiliative vs. non-affiliative emotions.

The present paper builds upon a growing body of work documenting oxytocin's role in social functioning, to test whether this hormone facilitates spontaneous mimicry of others' emotional expressions. In a double-blind, randomized trial, adult Caucasian males (n = 145) received a nasal spray of either oxytocin or placebo before completing a facial mimicry task. Facial expressions were coded using automated face analysis. Oxytocin increased mimicry of facial features of sadness (lips and chin, but not areas around the eyes), an affiliative reaction that facilitates social bonding. Oxytocin also increased mimicry of happiness, but only for individuals who expressed low levels of happiness in response to neutral faces. Overall, participants did not reliably mimic expressions of fear and anger, echoing recent theoretical accounts of emotional mimicry as dependent on the social context. In sum, our findings suggest that oxytocin facilitates emotional mimicry in ways that are conducive to affiliation, pointing to a possible pathway through which oxytocin promotes social bonding.

Co-producing research with youth: The NeurOx young people's advisory group model.

CONTEXT: The 1989 UN Convention on the Rights of the Child states that children have the right to be heard in all matters affecting them. The Convention inspired a surge in research that investigates young people's perspectives on health and wellness-related concerns and that involves children as 'co-researchers'. Young people's advisory groups (YPAGs) are a widely used method to enable young people's involvement in all research stages, but there is a lack of academic literature to guide researchers on how to set up, run and evaluate the impact of such groups. OBJECTIVE: In this paper, we provide a step-by-step model, grounded in our own experience of setting up and coordinating the Oxford Neuroscience, Ethics and Society Young People's Advisory Group (NeurOx YPAG). This group supports studies at the intersection of ethics, mental health and novel technologies. Our model covers the following stages: deciding on the fit for co-production, recruiting participants, developing collective principles of work, running a meeting and evaluating impact. RESULTS: We emphasize that throughout this process, researchers should take a critical stance by reflecting on whether a co-production model fits their research scope and aims; ensuring (or aspiring to) representativeness within the group; valuing different kinds of expertise; and undertaking on-going evaluations on the impact of the group on both the young people and the research. CONCLUSION: Adopting a critical and reflective attitude can increase researchers' capacity to engage youth in democratic and inclusive ways, and to produce research outputs that are aligned with the target audience's needs and priorities.

Can Your Phone Be Your Therapist? Young People's Ethical Perspectives on the Use of Fully Automated Conversational Agents (Chatbots) in Mental Health Support.

Over the last decade, there has been an explosion of digital interventions that aim to either supplement or replace face-to-face mental health services. More recently, a number of automated conversational agents have also been made available, which respond to users in ways that mirror a real-life interaction. What are the social and ethical concerns that arise from these advances? In this article, we discuss, from a young person's perspective, the strengths and limitations of using chatbots in mental health support. We also outline what we consider to be minimum ethical standards for these platforms, including issues surrounding privacy and confidentiality, efficacy, and safety, and review three existing platforms (Woebot, Joy, and Wysa) according to our proposed framework. It is our hope that this article will stimulate ethical debate among app developers, practitioners, young people, and other stakeholders, and inspire ethically responsible practice in digital mental health.