Post-traumatic Stress (PTS) is a psychiatric disorder resulting from the experience of a stressful or traumatic event. PTS is either the diagnostic entity known as post-traumatic stress disorder (PTSD) or PTSD-related symptomology known as PTSS . PTS symptoms are clustered into three categories: reexperiencing, avoidance, and hyperarousal . Reexperiencing can entail flashbacks of traumatic events, while avoidance of reminders of the stressor characterizes the avoidance dimension of symptomology. Finally, prominent anxiety and hypervigilance underly the hyperarousal dimension.
Symptoms of PTS can greatly vary, but can include:
Uncontrollable thoughts and memories related to the event
Organ transplantation can be considered a traumatic event for a child. PTS resulting from an organ transplantation could arise from many factors, including surgical procedures, repeated laboratory and imaging investigations, life-threatening incidents in care, and dependence on technology for organ function and survival .
How common is post-traumatic stress in pediatric organ transplant patients?
A 2021 study conducted at BC Children’s Hospital by Hind et al. investigated the effects of PTS on the life quality of 61 pediatric organ transplant recipients. The sample included 12 heart transplant recipients, 30 kidney transplant recipients, and 19 liver transplant recipients .
They found that a total of 52 patients (85.2%) reported at least one trauma symptom, and eight (13.1%) of these patients indicated symptoms that put them at significant risk of PTSD. They also observed that kidney recipients had higher overall trauma scores than other organ transplant patients, perhaps due to the extensive post-transplant care involved after kidney transplantation. Non-white patients reported significantly higher trauma scores, while females reported higher trauma scores than their male counterparts, though this result was not statistically significant. Spending more days in the hospital and being prescribed more medication were also associated with higher trauma scores .
How does post-traumatic stress affect the daily life of organ transplant patients?
Hind et al. also found that quality-of-life questionnaire scores were negatively correlated with trauma scores. This means that physical, emotional, social, academic, and psychosocial functioning decreased as trauma increased, leading to poorer quality of life. The results of this study indicate that PTS is a prevalent issue amongst pediatric organ transplant recipients and it can have detrimental effects on the daily functioning of patients post-transplant.
How does post-traumatic stress affect treatment?
Studies have shown that PTS in pediatric organ transplant recipients can impact treatment outcomes by causing post-transplant treatment nonadherence [1,3,4].
Why is treatment nonadherence significant to treatment outcomes?
Consider the example of a 19-year-old female, whose first transplant was lost due to nonadherence . The patient was granted a second organ transplant after stating that she would adhere to post-operative treatment. However, two days following her second surgery, she stopped taking her medications. When questioned, the patient revealed that she had been suffering for more than one year from recurrent intrusive thoughts about her liver disease, and recurrent dreams about her wait for the first transplant. She reported wanting to avoid any reminder of her illness, including even the sight of a nurse or medication. Healthcare practitioners applied Cognitive Behavioural Therapy in the form of gradual exposure to a hospital environment to this patient. Family intervention was also undertaken to increase her social support network. Following this treatment, the patient resumed taking her medications and continued doing so for more than a year after her second transplant.
This case study shows the profound impact PTS can have on medical care, and how addressing trauma symptoms can improve patient outcomes. Therefore, its findings reinforce that providing access to mental health resources is an imperative for this population considering their effects on the psychological and physical wellbeing of patients.
It is important to recognize that transplantation can be a traumatic experience from which patients and their families may develop PTS symptoms. Therefore, providing resources and support services for PTS before, during and after transplantation can help patient health outcomes as well as their overall quality of life. Treatment for PTS may vary, but collaboration between healthcare practitioners and psychologists, social workers, councilors, and other support personnel helping with psychosocial coping can enhance patient experience and facilitate the transplantation journey for patients and families alike.
1. Hind T, Lui S, Moon E, Broad K, Lang S, Schreiber RA, et al. Post-traumatic stress as a determinant of quality of life in pediatric solid-organ transplant recipients. Pediatr Transplant. 2021;25(4):e14005, https://doi.org/10.1111/petr.14005
2. Nash RP, Loiselle MM, Stahl JL, Conklin JL, Rose TL, Hutto A, et al. Post-Traumatic Stress Disorder and Post-Traumatic Growth following Kidney Transplantation. Kidney360. 2022 Sep 29;3(9):1590, https://doi.org/10.34067/KID.0008152021
3. Shemesh E, Lurie S, Stuber ML, Emre S, Patel Y, Vohra P, et al. A pilot study of posttraumatic stress and nonadherence in pediatric liver transplant recipients. Pediatrics. 2000 Feb;105(2):E29, https://doi.org/10.1542/peds.105.2.e29
4. Martin LR, Feig C, Maksoudian CR, Wysong K, Faasse K. A perspective on nonadherence to drug therapy: psychological barriers and strategies to overcome nonadherence. Patient Prefer Adherence. 2018 Aug 22;12:1527–35, https://doi.org/10.2147/PPA.S155971
Anna Riminchan was born in Bulgaria, where she spent her early childhood before immigrating to Canada with her family. Anna is currently working towards a Bachelor of Science Degree, majoring in Behavioural Neuroscience and minoring in Visual Arts at the University of British Columbia. In the meantime, she is contributing to advancing research in neuroscience, after which, she plans to pursue a degree in medicine. In her spare time, you can find Anna working on her latest art piece!
Dominating headlines since late 2022, the generative AI system ChatGPT, has rapidly become one of the most controversial and fastest-growing consumer applications in history . Capable of composing Shakespearean sonnets with hip-hop lyrics, drafting manuscripts with key points and strong counterarguments, or creating academic blogs worthy of publication, ChatGPT offers unrivalled potential to automize tasks and generate large bodies of text at lightning speed .
ChatGPT is a sophisticated language model that responds to user requests in ways that appear intuitive and conversational . The model is built upon swathes of information obtained from the internet, 300 million words to be precise . ChatGPT works by forming connections between data to reveal patterns of information that align with user prompts . As a language model, ChatGPT has the ability to remember threads of information, enabling users to ask follow-up or clarifying questions. It is this personalized interactive dialogue that elevates it above traditional search engine models.
Unsurprisingly, generative AI has amassed a strong army of followers eager to monopolise on its efficient functionalities: 100 million people conversed with the chatbot in January alone .
But what might the lure of working smarter, not harder mean in academia?
Perilous Publishing, Or Powerful Penmanship
No longer a whisper shared between hushed sororities, generative AI like ChatGPT has become a powerful force proudly employed by professors and pupils alike. However, despite its popularity, uptake is not unanimous. Academics are divided.
With the ability to generate work at the touch of a button, users risk being led down a perilous path towards plagiarism, and having their development stifled. The clear threat to academic integrity and original thought is sending many into a state of panic [6–8]. Editors of scientific journals are also having to wrestle with publishing ethics, as ChatGPT is increasingly being cited as a co-author .
But, despite its outward looking proficiency, the generative AI model has a number of particularly unnerving limitations. In the words of OpenAI, ChatGPT’s parent company, the software “will occasionally make up facts or ‘hallucinate’ outputs, [that] may be inaccurate, untruthful, and otherwise misleading” .
The rise of generative AI shines a spotlight on a troublesome issue in academia: the exchange of papers for grades. Whilst finished articles are necessary, when product triumphs over process, valuable lessons found in the process of writing can be overlooked.
“This technology [generative AI] … cuts into the university’s core purpose of cultivating a thoughtful and critically engaged citizenry. If we can now all access sophisticated and original writing with a simple prompt, why require students to write at all?” 
Responsively, in an attempt to stem the flow of plagiarism and untruth, and protect creative thinking, some academics have enforced outright bans of generative AI systems .
Academic integrity aside, ChatGPT’s capabilities are also undermined by moral and ethical concerns.
A recent Times Magazine exposé revealed that OpenAI outsources work to a firm in Kenya, whose staff are assigned the menial task of trawling through mountains of data, flagging harmful items to ensure that ChatGPT’s outputs are “safe for human consumption”. Data Enrichment Specialists earn less than $2/hour .
Moreover, generative AI propagates systemic biases by repurposing primarily westernised data in response to English-language prompts, created by tech-savvy users with easy access to IT. For some, the commercialization of more sophisticated platforms like ChatGPT Pro will also prove particularly exclusionary [10–13].
Embracing The Chatbot
However, vying in support of generative AI in academia, are those such as Associate Professor of Learning Enhancement at Edinburgh Napier University, Sam Illingworth, who state that it would be unrealistic and unrepresentative of future workplaces if students did not learn to use these technologies. Illingworth and others call for a shift from albeit valid concerns around insidious plagiarism (OpenAI’s own plagiarism detector tool is highly inaccurate, with a 26% success rate ) toward embracing the opportunities as a chance to reshape pedagogy .
Methods for teaching and assessment are having to be reexamined, with some suggesting that a return to traditional methods, such as impromptu oral exams, personal reflections or in-person written assignments, may prove effective against a proliferation of AI generated work [12,13].
Generative AI chatbots also have the potential to become a teacher’s best friend . Automating grading rubrics or assisting with lesson planning might offer a much-needed morale boost to a professional body whose expertise is being somewhat jeopardized by the emergent technology. And despite rumors of existential threat [15,16], generative AI, for now at least, poses no immediate risk of replacing human educators; empathy and creativity are among unique human qualities proving tricky to manufacture from binary code.
The Future Is Unknown
Much like other technologies that have emerged from Sisyphean cycles of innovation (think Casio graphing calculator or Mac OS), ChatGPT and fellow generative AI chatbots have the potential to transform the face of education .
As the AI arms race marches on at quickening pace, with companies delivering a daily bombardment of upgrades and functionalities, it is impossible to predict who, or what, might benefit or become a casualty to automation in academia. The story of AI in academia remains unwritten, but as the indelible mark left by ChatGPT suggests, it is certain to deliver a compelling narrative.
8. Boyle K. A reason for the moral panic re AI in academia: in work, we learn prioritization of tasks, which higher ed doesn’t prize. Speed is crucial in work— it’s discouraged in school. Tools that encourage speed are bad for some established industries. Take note of who screams loudly. https://t.co/ot8YHh7H7b [Internet]. Twitter. 2023 [cited 2023 Feb 6]. Available from: https://twitter.com/KTmBoyle/status/1619384367637471234
Tuesday, March 14, 2023 5:30 PM – 7:00 PM PDT Bill Reid Gallery of Northwest Coast Art 639 Hornby Street, Vancouver, BC, V6C 2G3 (map)
Everyone is welcome! This public in-person event is free, but tickets are required. Kindly RSVP here:https://ncbaw2023.eventbrite.ca Overview Research on Indigenous communities has historically been conducted using a one-sided approach, with researchers having little knowledge of Indigenous culture, minimal concerns surrounding community needs or desires, and without giving back to the community. In this lecture intended for people from all backgrounds and professions, Dr. Melissa L. Perreault will discuss how this is the time to give Indigenous communities a voice in research on brain and mental health that is guided ethically and culturally.
Melissa L. Perreault, PhD Dr. Melissa L. Perreault, PhD, is an Associate Professor and neuroscientist in the Department of Biomedical Sciences at the University of Guelph and a member of the College of New Scholars, Artists, and Scientists in the Royal Society of Canada. Dr. Perreault’s research is focused on the understanding of sex differences in the mechanisms that underly neuropsychiatric disorders, and on the identification of brain wave patterns that can be used as biomarkers to identify brain and mental health disorders.
Dr. Perreault is a citizen of the Métis Nation of Ontario, descended from the historic Métis Community of the Mattawa/Ottawa River. She has developed numerous Indigenous and equity, diversity, and inclusion initiatives at institutional, national, and international levels. As a member of the Indigenous Knowledge Holders Group for the Canadian Brain Research Strategy, she continues to strive towards inclusivity in neuroscience and Indigenous community research.
Brain Awareness Week Brain Awareness Week is the global campaign to foster public enthusiasm and support for brain science. Every March, partners host imaginative activities in their communities that share the wonders of the brain and the impact brain science has on our everyday lives.
The buildings and streets around us shape how we interact with the environment. How can we design cities that are equitable and accessible for people living with dementia?
The physical structures in which we live, work, and play constitute the built environment around us. Since we constantly interact with the built environment, architects must consider different needs and abilities in their designs to enable equitable access. This is called universal design, and it can be seen all around us.
Take, for example, a crosswalk. In the image below, the sidewalk slopes down to provide wheelchair access. There are also tactile bumps to signify a crossing for people using a long cane. The walking person signal provides clear instructions for those who cannot hear the traffic slowing. All these features represent design decisions made to increase the usability of the crosswalk.
Not Yet Universal
While designers have tried to create built environments that are universally accessible, they rarely consult people with lived experience of dementia in the design process. The result is cities and spaces that are confusing and inaccessible to those with dementia[1,3–5].
The City of Vancouver exemplifies this disconnect in what they specify as “accessible street design”. Despite claiming to use the principles of universal design, the city’s specifications mainly focus on physical disabilities and neglect considerations for dementia. Further, dementia research tends to focus on social interactions and personal connections. Designers are simply unaware of the needs of those living with dementia[4,7,8].
Work in the field of Environmental Gerontology – which considers the relationship between the environment, health, and aging – has made the issue clear: making the built environment more accessible can improve quality of life for people with dementia. How do we adapt our environments to better suit their needs?
Limited Work in Limited Spaces
To date, only a few small-scale research trials included people with dementia in the design process. One example is the Lepine-Versailles Garden in France, which took input from people living with dementia and their care partners. Dementia-specific features include clearly marked boundaries to the garden, and small enclosed spaces that help relieve anxiety and provide safety. These small spaces can provide a place for close, quiet social interactions, which become more relevant as dementia progresses and language skills diminish.
Environmental interventions are also present in the psychogeriatric environment. One hospital in the Netherlands built custom handrails to help people living with dementia navigate more easily. For example, they made one handrail of wood and played bird noises to help residents find the garden.
Handrail with a bird located near the garden. Nearby speakers played bird chirping sounds. Reproduced from Ludden et al. (2019).
However, these findings are very limited – they apply to specific environments that are not representative of most people’s experiences with dementia. A majority of people with dementia live in their home, and they routinely navigate their environment by taking walks on their own[3,5]. Increasingly, health research has emphasized the idea of ‘aging in place,’ suggesting that the number of people living at home with dementia will increase.
Design Principles for Dementia
So, what should dementia friendly environments actually look like? Mitchell and Burton studied the design principles that make environments accessible[3,5]. Based on these design principles, they developed design strategies to help people living with dementia flourish in the built environment. These include:
Small blocks laid out in an irregular grid with minimal crossroads and gently winding streets: this layout emphasises legibility, allowing people to identify where they need to go and avoid complicated crossroads.
Varied urban form and architecture, with landmarks and visual cues: this makes different parts of a neighbourhood more distinct from each other, which can help with wayfinding and orienting.
Mixed use buildings, including plenty of local services: this ensures people do not have to travel too far from their homes to access essential services (e.g., grocery store) and enables access without the need for driving or transiting.
These recommendations highlight the specific needs of people living with dementia that designers often overlook. For example, while cities designed on a grid are easy to navigate for most people, these grids are often repetitive and rely on numbered streets signs to navigate, making this design inaccessible to those with dementia.
From Ideas to Implementation: An Ethical Imperative
In summary, designers should prioritize the long-overlooked needs of people with dementia in their designs. Researchers have developed detailed recommendations for how to include dementia in universal design. Implementation is now the key.
With the global population aging, the number of people living with dementia is increasing. The focus on aging in place also means that many people will remain in their homes for longer and interact with the public environment (as opposed to specific dementia care facilities). It is therefore an ethical imperative that architects, city planners, and all other groups involved in the process of designing our built environment begin to consider the needs of people living with dementia.
Consulting people living with dementia during the design process is an opportunity to preserve their autonomy and dignity. This will require an overhaul of how we think about our built environment, and a shift towards truly universal design.
Sturge, J., Nordin, S., Sussana Patil, D., Jones, A., Légaré, F., Elf, M., & Meijering, L. (2021). Features of the social and built environment that contribute to the well-being of people with dementia who live at home: A scoping review. Health & Place, 67, 102483. https://doi.org/10.1016/j.healthplace.2020.102483
Mitchell, L., & Burton, E. (2010). Designing Dementia‐Friendly Neighbourhoods: Helping People with Dementia to Get Out and About. Journal of Integrated Care, 18(6), 11–18. https://doi.org/10.5042/jic.2010.0647
Ludden, G. D. S., van Rompay, T. J. L., Niedderer, K., & Tournier, I. (2019). Environmental design for dementia care—Towards more meaningful experiences through design. Maturitas, 128, 10–16. https://doi.org/10.1016/j.maturitas.2019.06.011
Van Steenwinkel, I., Van Audenhove, C., & Heylighen, A. (2019). Offering architects insights into experiences of living with dementia: A case study on orientation in space, time, and identity. Dementia, 18(2), 742–756. https://doi.org/10.1177/1471301217692905
Charras, K., Bébin, C., Laulier, V., Mabire, J.-B., & Aquino, J.-P. (2020). Designing dementia-friendly gardens: A workshop for landscape architects: Innovative Practice. Dementia, 19(7), 2504–2512. https://doi.org/10.1177/1471301218808609
Grayden Zaleski is a Directed Studies Student under the supervision of Dr. Julie Robillard in the NEST Lab. He is pursuing a Bachelor of Science degree with a major in Behavioural Neuroscience and a Computer Science minor. His research interests include human computer interaction, accessible technology, and the use of technology in healthcare to improve patient experience. He is currently working to engage healthcare providers and community members through an innovative online ‘Tweet Chat’! Additionally, he is contributing to the first empirical characterization of social media use in dementia research, which seeks to assess the benefits and harms of social media usage for research participation. In his spare time, you can find Grayden exploring Vancouver and playing simulation games.
This blog post discusses findings from a peer-reviewed article titled: “What criteria are young people using to select mobile mental health applications? A nominal group study” published in Digital Health (2022, paper here).
Mental health apps: more accessible mental health support
According to the World Health Organization, as many as one in seven children and teenagers aged 10-19 experience mental health disorders (1). Despite the prevalence of mental health issues in this group, access to professional diagnosis and treatment remains low. As a result, children and teenagers are turning to smartphone applications to support their mental wellbeing. When young people search for apps to support their mental health in general or to address a specific problem, such as anxiety, they are faced with an overwhelming number of options.
How to pick a mental health app?
The smartphone applications available on platforms such as Google Play or App Store are evaluated based on general user experience or satisfaction, usually on a 1 to 5-star rating scale. This system results in apps being suggested based on popularity, rather than the content of the app or its effectiveness in addressing mental health concerns. While some mental health interventions delivered by apps are developed based on evidence, most of the apps on the market are not supported by science. Additionally, there is no regulatory oversight to prevent apps from promoting potentially harmful interventions, making false claims, or mishandling user data (2,3). Based on a search from 2016, only 2.6% of apps make effectiveness claims that are supported in any way (4). The high number of available apps combined with only popularity-based rankings make it difficult to choose apps that are safe and effective.
Young people’s criteria for selecting mental health apps
Since selecting mental health support apps is challenging, the Neuroscience Engagement and Smart Tech (NEST) lab at Neuroethics Canada, in collaboration with Foundry BC, set out to develop a tool that would make it easier to select an app that is best suited to user’s circumstances. A tool that is helpful to young people has to align with their needs and priorities. Thus, we conducted a series of nominal group meetings to identify the criteria that are important to young people when they select mental health apps. The infographic below summarizes the criteria that emerged in discussions with 47 young people aged 15-25 in four towns in British Columbia, Canada. These criteria will inform the development of an app-selection tool that will combine end-user priorities with expert input.
The future of mental health support
As mental health apps continue to increase in popularity, so does the diversity and complexity of the features they offer. For example, some mobile applications offer access to healthcare professionals via video or chat but may also use AI chat bots to provide help or counselling. As we uncovered in the nominal groups, young people want the apps to provide links to community services that are available in their area and allow users to share the information that the apps collect with their health care team. As such, it is critically important to identify the priorities of end-users to guide the ethical usage of this innovative form of mental health support.
Anthes E. Mental health: There’s an app for that. Nature News. 2016 Apr 7;532(7597):20.
Robillard JM, Feng TL, Sporn AB, Lai JA, Lo C, Ta M, et al. Availability, readability, and content of privacy policies and terms of agreements of mental health apps. Internet Interventions. 2019 Sep 1;17:100243.
Larsen ME, Nicholas J, Christensen H. Quantifying App Store Dynamics: Longitudinal Tracking of Mental Health Apps. JMIR mHealth and uHealth. 2016 Aug 9;4(3):e6020.
Some areas of dementia research are relevant to healthy older adults, and social media can help spread the word. What should researchers and the public know about dementia research content on social media to support future brain health?
Dementia risk reduction is highly relevant for healthy adults. Addressing certain lifestyle factors may reduce future cases of dementia (1). Examples include education, performing physical activity, quitting smoking, preventing head injury, and stabilizing blood pressure.
Online exposure to this topic may encourage lifestyle changes but also promote much-needed dementia research participation for risk reduction. Some dementia researchers are turning to social media as a low-cost way to increase community awareness and research participation (2–5).
Appropriateness of social media in brain health research
Health-related content on social media is not without risk. Ethical concerns accompany the use of social media in research (6,7). Common concerns include privacy, confidentiality, informed consent, the spread of misinformation, and the protection of vulnerable groups.
Understanding how dementia research is typically presented online can inform social media use to improve public involvement. Currently, however, there is no thorough overview of the type of dementia research content users may encounter on social media.
To inform future ethical guidance of online brain health engagement, we investigated current uses of social media for dementia research.
We reviewed a sample of public dementia research posts on Facebook and Twitter (8). Our analysis included understanding the types of users posting about dementia research and the topics discussed.
Facebook users were mainly advocacy and health organizations rather than individuals. In contrast, Twitter users largely had academic or research backgrounds. This difference in user groups may explain the greater amount of academic content on Twitter, such as peer-reviewed research articles. Most research articles were open access and available to the public but may not be accessible for a wide range of literacy levels.
For both platforms, prevention and risk reduction were main areas of focus in dementia research. Posts with these topics appeared the most frequently and received a lot of attention in the form of likes, shares, and comments.
Other popular topics included dementia treatment and research related to the detection of dementia. Treatment posts primarily discussed the approval of aducanumab1 by the Food and Drug Administration (FDA), leading to much online debate. This may explain why, at the time, non-academic users had more interactions on dementia treatment tweets. The purpose behind most posts was to share dementia research information and knowledge.
On risk, responsibility, and stigma
The posts in our social media data emphasized individual prevention efforts, such as diet and exercise. However, topics also included social and environmental barriers that interfere with dementia risk reduction, care, treatment delivery, and other research areas.
As stated in one Facebook post, “[the] social determinants of health can significantly impact brain health disparities & the ability to access care.”
Barriers are unequally distributed across communities that vary by race, ethnicity, sex and gender, socioeconomic background, disability, and other aspects of identity.
Dementia researchers on social media should avoid using language that elicits stigma or equates brain health with personal responsibility (9). Society-wide initiatives that overcome barriers can potentially impact future population health on a broader scale positively and more effectively.
Practical social media guidance is needed for dementia research
A better understanding of the dementia research space on social media can inform future ethical guidelines. Dementia research engagement should incorporate the community’s values and perspectives on using social media for risk reduction.
1 The FDA approved aducanumab as a treatment for Alzheimer’s disease in June 2021. The decision was met with much controversy and ethical discussion. More information can be found here.
This work is supported by theAlzheimer’s Association Research Grant program (JMR), the Canadian Consortium on Neurodegeneration in Aging, AGE-WELL NCE Inc., a member of the Networks of Centres of Excellence program, and the University of British Columbia Four Year Doctoral Fellowship (VH).
Livingston G, Huntley J, Sommerlad A, Ames D, Ballard C, Banerjee S, et al. Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. The Lancet. 2020 Aug 8;396(10248):413–46.
Corey KL, McCurry MK, Sethares KA, Bourbonniere M, Hirschman KB, Meghani SH. Utilizing Internet-based recruitment and data collection to access different age groups of former family caregivers. Appl Nurs Res. 2018 Dec 1;44:82–7.
Isaacson RS, Seifan A, Haddox CL, Mureb M, Rahman A, Scheyer O, et al. Using social media to disseminate education about Alzheimer’s prevention & treatment: a pilot study on Alzheimer’s universe (www.AlzU.org). J Commun Healthc. 2018;11(2):106–13.
Friedman DB, Gibson A, Torres W, Irizarry J, Rodriguez J, Tang W, et al. Increasing Community Awareness About Alzheimer’s Disease in Puerto Rico Through Coffee Shop Education and Social Media. J Community Health. 2016 Oct;41(5):1006–12.
Stout SH, Babulal GM, Johnson AM, Williams MM, Roe CM. Recruitment of African American and Non-Hispanic White Older Adults for Alzheimer Disease Research Via Traditional and Social Media: a Case Study. J Cross-Cult Gerontol. 2020 Sep 1;35(3):329–39.
Bender JL, Cyr AB, Arbuckle L, Ferris LE. Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment. J Med Internet Res. 2017;19(4):e104.
Gelinas L, Pierce R, Winkler S, Cohen IG, Lynch HF, Bierer BE. Using Social Media as a Research Recruitment Tool: Ethical Issues and Recommendations. Am J Bioeth. 2017 Mar 4;17(3):3–14.
Hrincu V, An Z, Joseph K, Jiang YF, Robillard JM. Dementia Research on Facebook and Twitter: Current Practice and Challenges. J Alzheimers Dis. 2022 Jan 1; 1–13.
Lawless M, Augoustinos M, LeCouteur A. “Your Brain Matters”: Issues of Risk and Responsibility in Online Dementia Prevention Information. Qual Health Res. 2018 Aug 1;28(10):1539–51.
What is personhood? How is it viewed, described, and understood? Indeed, personhood is a complex and dynamic concept that varies across philosophical, political, legal, and cultural domains. In Western discourse, theories of personhood gained traction during the Age of Enlightenment. During this era, John Locke suggested that personal identity is synonymous with “psychological continuity”, grounded in consciousness and memory . Emmanuel Kant believed that personhood is defined by “capacity” and “rationality” – in other words, the ability to act according to human reason .
In recent history, the Western individualistic notion of what it means to be a person or hold personhood has been challenged. Feminist accounts of personhood suggest that cultural interactions, societal values, and interpersonal relations intimately shape personhood [3, 4]. Cross-cultural perspectives on personhood further highlight the fluid and adaptable nature of the term. Scholars such as Nhlanhla Mkhize and Polycarp Ikuenobe have written about communal personhood in the African context, recognizing that in many African societies, personhood is achieved and maintained by belonging to a community [5, 6].
Different conceptions of personhood raise unique, culturally-mediated neuroethics considerations for privacy, informed consent, and values, across social, research, and clinical contexts. For example, in societies where personhood is primarily viewed as communal, privacy may be less valued. As a result, Kenyan philosopher Eunice Kamaara cautions that African youth may be less inclined to consider significant privacy risks when sharing sensitive personal and community information . Many Indigenous communities also approach the self as communal and view decision-making and informed consent as largely collective processes . The implications for ethical research conduct are significant: Māorian criminologist Juan Tauri proposes that disregard of communal consent by research ethics boards disempowers Indigenous peoples and perpetuates colonial practices in research ethics . In Western culture, the limitations of current conceptions of personhood have come to fruition through inquiries into disorders of consciousness. Scholars such as Canadian biomedical engineer, Stefanie Blain-Moraes, have proposed that personhood, responsiveness, and consciousness are too often conceptually blended in Western medicine, thereby potentially diminishing personhood in individuals in minimally consciousness states .
So, what is personhood? How is it viewed, described, and understood? Ultimately, there is no one right answer to this question. With the emergence of a “global neuroethics” , there is a cultural imperative to incorporate diverse worldviews of personhood into theoretical and practical applications of neuroethics. To advance the goals of neuroethics on an international landscape, a flexible approach that acknowledges and minimizes risks such as overstating cultural differences, deepening harmful stereotypes, and perpetuating the “west” versus “the rest” narrative  is imperative. Questions and issues relating to personhood must be addressed through a holistic and intersectional lens situated within relevant socio-cultural and socio-political contexts, recognizing the limitations of “ethical universalism” . As emphasized by neuroethicists Arleen Salles, Karen Herrer-Ferrá, and Laura Cabrera, “much conceptual and groundwork remains to be done to respectfully learn from different cultures and promote frameworks that advance the local and global goals of neuroethics”. Rethinking frameworks based on Western conceptions of self and personhood, nurturing international collaborations, centering local ways of knowing  and embracing humility are pivotal beginnings toward creating culturally relevant and appropriate frameworks for understanding personhood.
Author bio:Anna is a research assistant and project coordinator at Neuroethics Canada. She is interested in the junction where neuroscience, law, and policy meet, and will be pursuing a legal education at the University of Toronto in 2023. Outside of academia, she loves to read, paint, play guitar, and run (literally) around Vancouver.
Special thanks to Stefanie Blain-Moraes for sharing her insights on personhood and providing guidance for this blog.
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Can policy help social robots provide ethical, dignified, and beneficial care for older adults? This question has been the subject of ongoing ethical debate concerning the use of social robots in care homes.
Around the world, the expanding population of older adults is increasing the need for care resources, straining health and aged care providers (1). The COVID-19 pandemic has further highlighted the negative consequences of overpacked and understaffed healthcare institutions (2). As governments seek solutions to reduce pressure on care homes, the use of social robots as a potential tool has been suggested.
Already, social robots have been studied in the context of older adult care to provide companionship, exercise, cognitive therapy and help with daily tasks (3). Although these studies have shown predominantly positive effects, the majority have assessed social robots in short-term situations, have had small sample sizes, or lack diversity and may not be generalizable to all cultures (3).
Studies from North America with larger sample sizes and longer time periods are showing variable results, with some older adults experiencing declines in loneliness and increased interaction with other older adults (4). Populations of care home residents with dementia also show variation in responses, suggesting that one approach to delivering care with social robots does not fit all (5). However, it is important to note that the social robot used in both of these studies is the same model that has been in use since 2003 (6). The field of social robotics is rapidly expanding, with many new types and models of robots released with a greater focus on end-users in their development (7,8). Research with such models done in care home contexts with generalizable samples is limited (3). Although more research is needed, social robots developed with users are showing promising preliminary results and could be a viable future solution to promoting well-being in the elderly (9).
To this end, social robots are showing great promise as beneficial tools in care homes. They can assist caregivers in situations where they are tired, distracted, overwhelmed, or not feeling very well (5). Social robots can be used to empower older adults to be more independent and to aid aging at-home care (2).
However, key ethical challenges in the use of social robot care assistants include autonomy, privacy, dignity, and bias (2). Autonomy can be suppressed or overridden by a social robot if, for example, a user is prevented from climbing on a chair to reach something in an effort to prevent a fall. Although the user’s safety is maintained, their autonomy and dignity may be diminished by the robot. Furthermore, the social robot’s monitoring features and social interaction with the user require data storage and use, which could interfere with the user’s privacy.
Currently, legislation around privacy and consumer protection could form the basis of government-enforced policies around social robots. However, in AI, self-regulation through developers has typically been the norm (2). Criticism to this point can be made in that self-regulation does not sufficiently protect the rights and safety of vulnerable populations such as older adults, and that manufacturers primarily protect their own interests.
This is where Johnston suggests ethics by design can ensure that ethical values of dignity, respect for autonomy and benevolence can be programmed into the robot’s behavior such that it protects the interests of the elderly. Johnston continues that to determine the “moral code” programmed into social robots and to monitor the ethical use of such systems within care home contexts, the use of clinical ethics committees can be employed. Ethics committees can provide consultation services, help in creating care home policies and procedures regarding social robots, and aid to resolve emerging ethical dilemmas. To counteract ethical biases in design, it is important that ethics committees consider multi-stakeholder perspectives. Emphasizing the voices of end-users tailors social robot functionality to the populations it will serve, and aids in user acceptance of social robots (10).
Furthermore, policies must consider both the benefits and drawbacks of using social in care home contexts (1). Potential benefits could include increased efficiency, increased welfare, physiological and psychological benefits, and increased satisfaction (1). There are, however, interesting objections to the use of social robots including the possibility that relations with robots can potentially displace human contact, that these relations could be harmful, that robot care is undignified and disrespectful, and that social robots are deceptive (1). These are ethical considerations that must be carefully balanced in a holistic policy aimed to maximize benefits for end-users while mitigating potential downsides to social robot use.
Although we are not yet at the stage where social robots can be used in a large-scale fashion across care homes in North America, it is important to anticipate their future ethical ramifications. By discussing policy-regulated ethical considerations, we are taking strides towards the responsible development and use of social robots with the goal of minimizing their potential for harm and ensuring their benefits for human care.
Bio: Anna Riminchan was born in Bulgaria, where she spent her early childhood before immigrating to Canada with her family. Anna is currently working towards a Bachelor of Science Degree, majoring in Behavioural Neuroscience and minoring in Visual Arts at the University of British Columbia. In the meantime, she is contributing to advancing research in neuroscience, after which, she plans to pursue a degree in medicine. In her spare time, you can find Anna working on her latest art piece!
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Canadians are living longer, healthier lives, resulting in a rapidly growing population of older adults. It is projected that the number of adults aged 65 and over in Canada will grow by 68% over the next two decades (1). One way to support the quality of life of this growing demographic is through technology. Assistive technologies (AT) such as blood pressure monitors (2), wheelchairs (3), and fall detectors (4) can promote the physical health of older adults. Social robots, AT that can interact with users (Figure 1), can assist older adults by improving mood (5), decreasing blood pressure (6), and reducing the need for analgesic and behavioural medication (7). Everyday information and communication technologies (EICT) – including mobile phones, computers, and email services – allow for regular communication with social contacts (3) and the ability to look up health information (8). Telemedicine provides a unique healthcare solution for older adults who face barriers to in-person care such as isolation, severe illness, and functional challenges (9).
Despite the known benefits of these technologies, there is a wide range of barriers to technology adoption by older adults. Such barriers include privacy concerns (10), inappropriate device design (11), and a lack of familiarity with technology (12). Another barrier is stigma around the use of technologies by older adults (5,10,13). Negative stereotypes of old age include increased dependency, disability, and disconnection from society (13,14). Furthermore, within technology research, ageing is often regarded as a ‘problem’ that technology may address (15). In this piece, I will summarize the literature on stigma around technology use by older adults and how we might address this issue.
Older adults often associate AT with negative stereotypes about ageing. For example, some older adults have stated that they are not ‘disabled’ or ‘old’ enough to require AT (16). In one research study, older adults who stated that they did not need AT recommended these devices for people who experience isolation, dependency, and disability (17). Some older adults feel that adopting AT signifies a loss of independence (4), and others experience feelings of embarrassment and incompetency when using AT (12). Furthermore, some older adults have expressed preference for items that are not necessarily ‘assistive’ or ‘medical’ in nature, such as an umbrella in place of a walking stick (2), a smartwatch with assistive features (4), or a shopping cart in place of a walker (16). On the other hand, EICT such as smartphones and computers are often regarded by older adults as a way to keep up with society, and thus older adults associate non-use of these technologies with negative ageing stereotypes (13). However, when learning to use EICT, many older adults experience embarrassment, anxiety, or fear of making mistakes (2,18). Some have reported feeling ‘older’ after encountering vision and haptic-related challenges while using EICT (13). Altogether, the literature shows that technologies often remind older adults of negative aspects of ageing. As a result, older adults are less likely to adopt these technologies.
Non-use of the technologies described above raises several issues, including a key neuroethical problem: decreased access to mental health benefits. For example, several online services that can improve mental health – such as telemedicine and tele-counselling services – are accessed through technologies such as smartphones and computers. Research has shown that interacting with social robot technologies can improve mood (5), and technologies such as smartphones allow people to stay in touch with one another (3), especially during the current COVID-19 pandemic where in-person contact is restricted. These are just a few mental health benefits that older adults who limit their use of technologies have reduced access to. As a result, there is a need to address key barriers to technology adoption, such as stigma.
One of the most important things we can do to address issues of stigma and non-use is to engage end-users in the process of device development. Older adults are often not consulted when technologies are being developed for them, leading to devices that are often misaligned with their needs and priorities (19). A study by Federici et al. found that the most common reason for device abandonment was an inappropriate device design (11). Incorporating ideas and feedback from older adults about device design, features, applications, affective considerations, and ethical concerns into the creation and implementation of technologies will likely result in devices that this population is more comfortable using.
Bio: Jaya Kailley is an Undergraduate Research Assistant under the supervision of Dr. Julie Robillard in the NEST Lab, and she is pursuing an Integrated Sciences degree in Behavioural Neuroscience and Physiology at the University of British Columbia. She currently supports research projects that aim to include end-users in the process of social robot development. Outside of work, Jaya enjoys playing the piano, reading, and spending time with her family and friends.
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Evans N, Boyd H, Harris N, Noonan K, Ingram T, Jarvis A, et al. The experience of using prompting technology from the perspective of people with Dementia and their primary carers. Aging & Mental Health. 2021 Aug 3;25(8):1433–41.
Köttl H, Gallistl V, Rohner R, Ayalon L. “But at the age of 85? Forget it!”: Internalized ageism, a barrier to technology use. Journal of Aging Studies. 2021 Dec 1;59:100971.
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Astell AJ, McGrath C, Dove E. ‘That’s for old so and so’s!’: does identity influence older adults’ technology adoption decisions? Ageing and Society. 2020 Jul;40(7):1550–76.
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As part of my role in the Neuroscience, Engagement, and Smart Tech (NEST) Lab at Neuroethics Canada, I conducted a review of non-pharmacological interventions for mental health in people living with dementia. What are these non-pharmacological interventions, and why are researchers so interested in studying them?
Among the 50 million people worldwide with a diagnosis of dementia, roughly 32% (16 million) report symptoms of depression (1). Within this group, half will have received a formal diagnosis of major depressive disorder. You may already be familiar with pharmacological or drug-based interventions for depression (e.g., antidepressants). However, in recent years, there has been a push for non-pharmacological treatment alternatives for people living with dementia.
Non-pharmacological treatments are defined as any activity or care plan to reduce symptoms of a given ailment. These interventions are often adjustable to accommodate the needs of the recipients, something traditional drug interventions lack.
The issues surrounding pharmacological treatments for depression
Various studies highlight some of the drawbacks surrounding the drug interventions commonly used to treat major depressive disorder. The findings of a 2013 study revealed that 69% of older adults from a data sample of 2 million received a prescription psychotropic without a formal psychiatric diagnosis (2). In addition, many were found to not be receiving any type of mental health specialty care (2).
These results come with caveats. Not being able to qualify for a diagnosis does not negate the existence of a medical need, nor does it address the social barriers individuals may face in obtaining a diagnosis. Experiencing symptoms can drastically impact a person’s physical health and overall quality of life (3). Symptoms are expressed in a multitude of ways (e.g., lethargy, insomnia, changes in appetite, feeling discouraged or unhappy) and in varying intensities (4). Depression manifests itself differently for each individual and depending on their given situation, clinical treatment may have been the best course of action.
Nevertheless, the study results suggest that the current implementation of clinical approaches to treating depression may not meet the desired standards of care (2). Also consider the high relapse rates of major depressive disorder in individuals exclusively using pharmacological therapies (5).
The efficacy of drug interventions for treating depression in people living with dementia has been challenged by various studies (6,7,8). Evidence indicates that antidepressants are associated with an increased risk of recurrent falls, whereas non-pharmacological care alternatives have the potential to be just as effective as drug treatments with fewer risks (6,7).
Certain psychological treatments can match the effectiveness of clinical approaches to mood disorders (4), and a few are somewhat more effective (6). Drug interventions alone can be an effective treatment method for many (5,6,7). However, we must also assess the ethical considerations surrounding limited catalogues of treatment options only optimal for a subset of individuals.
Thus, there is unexplored potential in the application of non-pharmacological interventions as both a supplement to drug treatments and as their own form of care.
Sociocultural and ethical considerations
The myriad of issues related to treatments for mental health in people living with dementia are complex. A discussion regarding healthcare disparities and the socioeconomic and cultural barriers to care could warrant a post of its own. Here, I will attempt to summarize a few.
Stigma — There may be cultural stigma surrounding mental health and treatment (8,9). Individuals who inherit cultural values from their respective culture or community may not feel comfortable with western conventions of mental health. Thus, given how drug interventions are prescribed in Canada, pharmacological treatments may not be the most effective or accessible option.
Economic factors — Prescription drug costs contribute to the inaccessibility of treatment. Canada is the only developed country with a universal healthcare system that does not cover the cost of prescription drugs. Older adults without private health insurance may be left in a difficult position (10).
Location — Individuals living in rural or remote locations may face difficulty with filling their prescriptions over an extended period (11).
There are many more issues pertaining to the limitations of drug interventions in current healthcare models. Thus, there is value in exploring non-pharmacological treatment alternatives (6).
How non-pharmacological interventions for depression can be used
In recent years, there has been growing interest in social prescribing: the act of linking patients with non-drug interventions in their community (6). While non-profit organizations such as the Alzheimer’s Society of BC are unable to prescribe medication, they can provide low or no-cost services aiming to support mental health.
Implementing these non-pharmacological interventions can also be a quite simple. Some common, low-cost interventions that are easy to implement include:
Reminiscence therapy — Remembering or sharing details about the past or previous positive events, either alone or with a group. Reminiscence therapy can improve quality of life, cognitive functions, and lower depression (12).
Exercise — Exercising the body and the mind can reduce symptoms of depression and improve the overall quality of life (6).
Music therapy — Listening to music regularly with a music therapist can improve symptoms of depression (13).
Indoor Daylight Exposure —People living with dementia at a nursing home socialized with each other in an indoor setting with ample amounts of daylight each morning. Daylight exposure was found to significantly reduce symptoms of depression (14).
These interventions do not present as very psychological or medical in nature. By framing activities that may reduce symptoms of depression in an approachable, non-clinical manner, care providers could avoid the stigmas around treatment for mental health to encourage greater use of mental health services (15). However, this does not address the issues surrounding mental health perception and discourse. More research is needed to better understand how we can effectively tackle these stigmas.
Providing evidence-based, low-complexity care can also enable people living with dementia to form deeper bonds with their local community and create their own support network. The low cost of execution makes these interventions a great option for treating mild symptoms of depression.
Complex interventions that target more severe symptoms of depression and aim to create lasting effects also exist. These require a higher degree of training from providers and thus are more costly, but evidence highlights their value as potential treatment options (6, 16, 17, 18). Examples include:
Cognitive-behavioral therapy (CBT) — Breaking down existing negative cognitions and replacing them with more positive functionally adaptive ones (16) can reduce symptoms of both depression and anxiety (6, 17, 18).
Multidisciplinary care — A care plan developed in collaboration with multiple qualified healthcare providers can match the efficacy of drug treatments (6).
There are many other approaches: animal-assisted activities, psychotherapy, cognitive stimulation, and environmental modification, to name a few (6). Non-pharmacological interventions also have the advantage of being flexible and adjustable to one’s individual needs. For example, Shiatsu could be an interesting approach for people with dementia of East Asian descent.
Shiatsu — A holistic complementary practice that draws on the principles of traditional Chinese medicine. By applying pressure to certain pressure points, symptoms of depression were reduced when utilized in combination with exercise (19).
Many treatment options exist where traditional drug-based interventions are not appropriate. Individuals could develop a personalized care plan with careful guidance from a qualified medical professional.
There is still an important need for drug interventions. For a subset of the population, it remains quite effective (5,6).
The value in exploring various non-pharmacological treatments has much to do with the agency it gives the individual and how it makes mental health care more attainable to people of all socioeconomic and cultural backgrounds.
Looking to the future
Non-pharmacological interventions may reduce the burden of depressive symptoms in older adults with dementia. Within the next few decades, the global population will continue to age and the number of people living with dementia is expected to increase to 152.8 million cases by 2050 (20). Thus, the need for programs supporting the well-being of older (and younger!) adults with dementia is greater than ever.
In neuroethics research, the way non-pharmacological interventions are received and their overall effectiveness can be studied to highlight healthcare disparities and bring insight into public discussions surrounding brain health and aging. This research may inform initiatives that aim to address the gap in services related to mental health in people living with dementia.
By deepening our understanding of how people living with dementia respond to non-pharmacological interventions, we can improve current treatment approaches and the standard of care. Every individual should have the option to receive the type of care that best suits their specific medical needs.
Special thanks to Dr. Julie Robillard and Viorica Hrincu from the NEST Lab for all their guidance and support in the last year!
Bio: Yu Fei Jiang is a 4th-year undergraduate student studying Behavioural Neuroscience at the University of British Columbia. Her research interests primarily lie in the interaction between technology use in patient care and neuroscience research. She’s also very passionate about science communication and sharing knowledge with others. Outside of work, Yu Fei enjoys all things nerdy; you’ll probably find her either reading books of wildly different genres or playing video games late into the night.
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