Bell Let’s Talk and Other Media Mental Health Campaigns – How Effective Are They for Young People?

Disclaimer: The following blog post involves mentions of suicide.

One in seven youth aged 10 to 19 experience a mental health issue – but many don’t seek or receive the care they need (1). Can media mental health campaigns help to bridge this gap?

What are media mental health campaigns?

Media mental health campaigns are marketing efforts to raise awareness of mental health issues using mass media channels like social media. These campaigns focus on topics such as suicide prevention, destigmatizing mental illness, and promoting mental health resources.

Given the widespread use of social media among young people (generally defined as people aged 10-24), these platforms can be leveraged to spread mental health information in a cost-effective and accessible way (2). It is no surprise to see a growing number of media mental health campaigns directed toward young people over the past few years. But how effective are these campaigns? Do they significantly impact the feelings and behaviours of young people toward mental health?

Despite their prevalence and popularity, there exists only a small number of empirical evaluations of how these campaigns affect young people.

Bell Let’s Talk: The largest mental health campaign in Canada

Consider Bell Let’s Talk – Canada’s most well-known media mental health campaign.

Founded in 2010 by Bell Canada, Bell Let’s Talk aims to destigmatize mental illness by encouraging dialogue about mental health on social media. For one day a year, the company donates $0.05 to mental health initiatives for every text or call on the Bell network, as well as every social media interaction with the campaign. To date, Bell Let’s Talk has raised over $139 million toward mental health initiatives and is the largest corporate initiative in Canada dedicated to mental health (3).

Despite its impressive reach and financial success, there have only been two empirical evaluations of Bell Let’s Talk’s impacts on young people.

Bell Let’s Talk and rates of access to mental health services in young people

In the first evaluation, Booth et al. were curious to see whether the Bell Let’s Talk campaign encouraged young people to use mental health services (4). They analyzed the monthly outpatient mental health visit rates of young people in Ontario between 2006 and 2015 and found that the 2012 Bell Let’s Talk campaign was associated with a temporary increase in mental health service use.

These findings are promising – however, it is possible that other events happening during this time also contributed to the change they observed.

Is Bell Let’s Talk effective for suicide prevention?

Another evaluation of Bell Let’s Talk studied whether the campaign was associated with changes in suicide rates (5). Cȏté et al. compared the suicide rate in Ontario before and during the campaign and found no significant difference in the rates, both among young people and the general population.

In the same study, the researchers analyzed suicide-related Twitter posts under the hashtag #BellLetsTalk. They found that these Tweets focused more on suicide being a societal problem, and less on promoting protective messages about coping and resilience – which have been associated with fewer suicides (6,7). Based on this, the researchers suggest that Bell Let’s Talk and similar campaigns should aim to promote more protective messaging around suicide on social media, which may be more effective for suicide prevention.

Further evaluation of media mental health campaigns is needed

These evaluations suggest that Bell Let’s Talk can positively affect young people but could benefit from promoting more protective messages online. Given the enormous reach, financial stakes, and potential influence of the campaign, two evaluations are insufficient to capture the overall effects of Bell Let’s Talk on young people across Canada. Further evaluations are necessary.

Research in this area must overcome significant obstacles. First, evaluations that rely on objective measures of behaviour fail to capture the unique experiences of individuals as they interact with the campaign. Conversely, evaluations that rely on self-reported data leave room for response bias. For instance, study participants may self-report more positive outcomes after seeing campaign media because they believe researchers expect to see these outcomes. Additionally, campaigns may significantly impact people’s attitudes and behaviours in the long-term in a way that is difficult to detect in evaluations that focus on short-term impact. Even then, these long-term changes in outcomes could be attributed to factors other than mental health campaigns, such as a general increase in access to mental health resources and mental health education.

Despite these challenges, more research evaluations in this area have emerged through the years to address this important knowledge gap. By studying trends in existing media mental health campaigns for young people, we can inform the design and implementation of more effective campaigns in the future, ensuring they will have a better impact on the health and well-being of young people.

References:

1. Mental health of adolescents [Internet]. World Health Organization. 2021 [cited 2023 Mar 7]. Available from: https://www.who.int/news-room/fact-sheets/detail/adolescent-mental-health
2. Robinson J, Bailey E, Hetrick S, Paix S, O’Donnell M, Cox G, et al. Developing Social Media-Based Suicide Prevention Messages in Partnership With Young People: Exploratory Study. JMIR Ment Health. 2017 Oct 4;4(4):e40.
3. The positive impact of your efforts | Bell Let’s Talk [Internet]. [cited 2023 Mar 7]. Available from: https://letstalk.bell.ca/our-impact/
4. Booth RG, Allen BN, Bray Jenkyn KM, Li L, Shariff SZ. Youth Mental Health Services Utilization Rates After a Large-Scale Social Media Campaign: Population-Based Interrupted Time-Series Analysis. JMIR Ment Health. 2018 Apr 6;5(2):e27.
5. Côté D, Williams M, Zaheer R, Niederkrotenthaler T, Schaffer A, Sinyor M. Suicide-related Twitter Content in Response to a National Mental Health Awareness Campaign and the Association between the Campaign and Suicide Rates in Ontario. Can J Psychiatry. 2021 May;66(5):460–7.
6. Niederkrotenthaler T, Voracek M, Herberth A, Till B, Strauss M, Etzersdorfer E, et al. Role of media reports in completed and prevented suicide: Werther v. Papageno effects. Br J Psychiatry. 2010 Sep;197(3):234–43.
7. Sinyor M, Williams M, Zaheer R, Loureiro R, Pirkis J, Heisel MJ, et al. The association between Twitter content and suicide. Aust N Z J Psychiatry. 2021 Mar;55(3):268–76.

Cindy Zhang (she/her) is a research assistant at the NEST Lab under the supervision of Dr. Julie Robillard. She is an undergraduate student pursuing a Bachelor of Arts degree in Psychology at the University of British Columbia. At the lab, she currently supports research projects on the impact of social media on youth mental health and family communication.

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The Effects of Post-Traumatic Stress on Pediatric Organ Transplant Patients

What is post-traumatic stress?

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 [1]. PTS symptoms are clustered into three categories: reexperiencing, avoidance, and hyperarousal [2]. 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
• Bad dreams about the event
• Physical bodily reactions (e.g., sweating, beating heart, dizziness)
• Changes in mood
• Difficulty paying attention
• Feelings of fear, guilt, anger, and shame
• Sleep disturbances

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 [1].

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 [1].

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 [2].

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 [3]. 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.

References:

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!

Feeling welcomed: Creating space for Indigenous voices in brain and mental health research

Join us for the 2023 Brain Awareness Week Annual Neuroethics Distinguished Lecture featuring Dr. Melissa L. Perreault!

 

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.

Lessons from end-users: how young people select mobile mental health applications

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.

References

1. Adolescent mental health [Internet]. [cited 2022 Dec 16]. Available from: https://www.who.int/news-room/fact-sheets/detail/adolescent-mental-health
2. Anthes E. Mental health: There’s an app for that. Nature News. 2016 Apr 7;532(7597):20.
3. 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.
4. 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.

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Cross-Cultural Perspectives on Personhood: A Neuroethics Lens

Post by Anna Nuechterlein

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 [1]. Emmanuel Kant believed that personhood is defined by “capacity” and “rationality” – in other words, the ability to act according to human reason [2].

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 [7]. Many Indigenous communities also approach the self as communal and view decision-making and informed consent as largely collective processes [8]. 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 [9]. 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 [10].

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” [11], 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 [12] 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” [13]. 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 [11] 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.

References

1. Locke, J. (1997). An essay concerning human understanding. Harmondsworth, UK: Penguin Books.
2. Kant, I. (1948). Groundwork of the metaphysics of morals. In The moral law: Kant’s groundwork of the metaphysics of morals, ed. H. J. Paton, X–XX. London, UK: Hutchinson.
3. Harris, H. (1998). Should We Say that Personhood Is Relational? Scottish Journal of Theology, 51(2): 214-234. doi:10.1017/S0036930600050134
4. White FJ. (2013). Personhood: An essential characteristic of the human species. Linacre Q, 80(1), 74-97. doi: 10.1179/0024363912Z.00000000010.
5. Ikuenobe, P (2016). Good and Beautiful: A Moral-Aesthetic View of Personhood in African Communal Traditions. Essays in Philosophy 17(1): 125-163.
6. Mkhize, N. (2006). Communal personhood and the principle of autonomy: the ethical challenges. CME, 24(1).
7. Kamaara, E, Nderitu, D, Masese, E, Kiyiapi, L, Wawa, S, Oketch, D, Sigei J, Atwoli, L. (2022). Personhood, Privacy, and Spirituality: Neuroethics of digital mental health innovations for youth in Africa. International Neuroethics Society Annual Meeting, Montreal, Quebec, Canada.
8. Stevenson S, Beattie BL, Vedan R, Dwosh E, Bruce L, Illes J. (2013). Neuroethics, confidentiality, and a cultural imperative in early onset Alzheimer disease: a case study with a First Nation population. Philos Ethics Humanit Med, 16(8). doi: 10.1186/1747-5341-8-15.
9. Tauri, Juan M. (2017). Research ethics, informed consent and the disempowerment of First Nation peoples. Research Ethics 14(3): 1-14.
10. Blain-Moraes S, Racine E, Mashour GA. (2018). Consciousness and Personhood in Medical Care. Front Hum Neurosci, 2(12). doi: 10.3389/fnhum.2018.00306.
11. Salles, A., Herrera-Ferrá, K., & Cabrera, L. Y. (2018, December 18). Global Neuroethics and cultural diversity: Some challenges to consider. Neuronline. Retrieved November 15, 2022, from https://neuronline.sfn.org/professional-development/global-neuroethics-and-cultural-diversity-some-challenges-to-consider
12. Degnen, C. (2018). Cross-cultural perspectives on personhood and the life course. Palgrave Macmillan New York, 1–33. https://doi.org/10.1057/978-1-137-56642-3
13. Fleischacker, Samuel. “1. Limits of Universalism”. The Ethics of Culture, Ithaca, NY: Cornell University Press, 1994, pp. 1-20. https://doi.org/10.7591/9781501734595-002

Ethics in Environment & Democracy

Join us for Ethics in Environment & Democracy, the final installation of Ethics for UBC, a five-part speaker series that will explore the current landscape of ethics scholarship and education across the Vancouver and Okanagan campuses of our university.

May 25, 2022
4:00 PM – 5:15 PM PDT
Kindly RSVP to the event here: https://efubced.eventbrite.ca

In attending this interactive 75-min panel discussion, you will have the opportunity to learn about the current ethics-related endeavours taking place at UBC, pressing ethical issues that exist across a wide range of disciplines, and the ways in which you can become more involved.

This panel discussion will focus on ethics across a variety of disciplines, from animal welfare and ecophysiology, to democracy and ecofeminism.

Ethics in Health

Join us for Ethics in Health, the fourth installation of Ethics for UBC, a five-part speaker series that will explore the current landscape of ethics scholarship and education across the Vancouver and Okanagan campuses of our university.

April 27, 2022
12:00 PM – 1:15 PM PDT
Kindly RSVP to the event here: https://efubch.eventbrite.ca

In attending this interactive 75-min panel discussion, you will have the opportunity to learn about the current ethics-related endeavours taking place at UBC, pressing ethical issues that exist across a wide range of disciplines, and the ways in which you can become more involved.

This panel discussion will focus on ethics across a variety of disciplines, spanning kinesiology and the exercise sciences, neuroethics, and medicine.

Sharing Circle Methodology in Neuroethics

Post by Miles Schaffrick

Recently Quinn Boyle and Drs. Paul van Donkelaar and Judy Illes (1), who are affiliated with Neuroethics Canada, wrote about neuroethics methodology for the Encyclopedia of Behavioral Neuroscience. In this piece, they briefly discuss the use of sharing circles in neuroethics research. Here, I will attempt to deepen that overview by summarizing a few key sources that have described sharing circle methodologies, by exploring how this method can be utilized in research in a culturally safe way, and by uncovering future directions for use in neuroethics. I enter this topic as a non-Indigenous settler with experience participating in numerous sharing circles led by Indigenous Elders on topics of health and educational equity.

In response to concerns surrounding extractive research methodologies, and to recognize a need for the decolonization and Indigenization of many research projects, particularly those involving Indigenous peoples and communities, seminal Indigenous scholars such as Margaret Kovach (2) have asserted the “need to take back control of research so that it is relevant and useful” (p. 59). One way by which culturally-conscious scholars have attempted to utilize research methodology in a way that is relevant and useful is through the sharing circle method, a traditional practice used by Indigenous groups across the world (3,4). A cross-database search, absent a test for duplicate results, for the terms “sharing circle” and “talking circle” retrieved several hundred results, emphasizing the range of qualitative work that utilizes this methodological approach. Results revealed studies spanning the humanities, social sciences, and health sciences in a variety of disciplines. Sharing circle methodology is especially prominent in studies that attempt to gather and highlight the lived experiences of communities, groups, and study participants.

Sharing circles (Figure 1), also referred to as talking circles, peacemaking circles, or healing circles, are conversationally-driven and hold space for storytelling (3). Moreover, sharing circles, as Tachine et al. (3) point out, are a cultural practice and research methodology familiar to the Māori people of New Zealand. Likewise, sharing circles, which Margaret Kovach (5) describes as being a space in which “the story breathes and the narrator regulates” (p. 99), are used by Indigenous groups in North America such as the Cree people of Canada. As such, the widespread use of and familiarity with sharing circles can make this method viable and culturally safe for research with Indigenous populations in a variety of contexts. That said, given the traditional value of this sharing circles to Indigenous communities worldwide, research that utilizes sharing circles is best led for and by Indigenous peoples.

Figure 1 Sharing circle. Adapted from Simon Fraser University News.

Sharing circles differ in several key ways from interviews and focus groups. As Tachine et al. (3) assert, there are three primary features of focus groups: data collection, discussion, and the instrumentality of the facilitator (3). In a focus group, the facilitator holds the power; they take the conversation where they wish. Moreover, focus groups are usually short in timespan, ranging from approximately 45 minutes to 1.5 hours (3). As Tachine et al. (3) point out, focus groups can silence individual voices, lead to nondisclosure of personal stories, and inhibit the generation of new narratives. On the contrary, Tachine et al. (3) describe sharing circles as a place where stories thrive through reverence to cultural practices and solidarity between participants. Moreover, in a sharing circle, all participants, including the facilitator, are seen as equal (6). In a sharing circle, the facilitator is known as a circle keeper and facilitates the community protocols (7). Protocols can include leading opening or closing ceremonies, and ensuring the space is safe (7).

Describing the sharing circle methodology by way of poetic narrative, education and social work scholar Fyre Jean Graveline (8)—who is of Métis (Cree) ancestry—outlines the basic guiding principles and requirements of sharing circles (Figure 1). First, sharing circles require explicit modeling and clear intentions (8 p. 365). Second, sharing circles should allow and guide participants to traditional Indigenous philosophies and practices (8 p. 365). Third, in keeping with Hart’s work, Graveline (8) argues that sharing circles should foster solidarity among participants in addition to individual reflexivity. Fourth, mirroring the observations of Tachine et al. (3), Graveline (8) points out the time requirements of sharing circles; a process not to be rushed.

Figure 2 Graveline’s guiding principles of sharing circles. From Graveline (8).

In sum, literature highlights that, more than just a space to share, sharing circles provide an environment for reflexive listening, cultural continuity, and community-building. For example, work by sociologist Steven Picou (4) found that talking circles provided an avenue for Alaskan Natives to mitigate the social impacts of the 1989 Exxon Valdez oil spill. In another study, Waddell et al. (9) utilized a sharing circle approach to better understand resources and barriers to mental wellness for Indigenous men. Similarly, a 2020 study by Baldwin et al. (10) utilized a talking circle approach to adapt, implement, and evaluate substance use interventions in three tribes within the United States. Likewise, a study by Greene et al. (11) gathered the experiences of Indigenous women living with HIV through a weekend retreat that culminated in a 3-hour sharing circle which was co-attended by an Elder who offered spiritual and emotional support.

As the above examples highlight, sharing circles can be a culturally relevant and culturally safe way by which to undertake research with Indigenous peoples and communities. In neuroethics research, this method could be utilized in a meaningful and intentional way in the place of focus groups or interviews to advance cultural safety in conversations surrounding neuroethics with Indigenous populations.

Bio: Miles Schaffrick (he/him) is a fourth-year undergraduate student in UBC’s Honours Political Science program as well as the Law & Society minor. Miles’ primary research interests lie in the rapidly developing field of health politics. As such, Miles’ research broadly examines how political actors and institutions influence topics of significance to health. As a settler of German and Austrian ancestry with a background and interest in Indigenous health, Miles supports Neuroethics Canada’s Indigenous research initiatives.

References

1. Boyle Q, van Donkelaar P, Illes J. Methods of Neuroethics. In: Della Sala S. (ed.) Encyclopedia of Behavioral Neuroscience, vol. 1. Elsevier; 2022. p. 240–245. https://dx.doi.org/10.1016/B978-0-12-819641-0.00122-5

2. Kovach M. Emerging from the margins: Indigenous methodologies. In Strega S, Brown L (eds.) Research as resistance: Revisiting critical, Indigenous, and anti-oppressive approaches. Toronto, Ontario, Canada: Canadian Scholar’s Press; 2015. p. 43–64

3. Tachine AR, Bird EY, Cabrera NL. (2016). Sharing circles: An Indigenous methodological approach for researching with groups of Indigenous Peoples. International Review of Qualitative Research. 2016;9: 277–295. Available from: https://www.jstor.org/stable/26372209 [Accessed 27th December 2021].

4. Picou JS. The “talking circle” as sociological practice: Cultural transformation of chronic disaster impacts. Sociological Practice. 2000;2(2): 77–97. Available from: http://www.jstor.org/stable/43735710 [Accessed 27th December 2021].

5. Kovach M. Story as Indigenous methodology. In M. Kovach Indigenous methodologies: Characteristics, conversations, and contexts. University of Toronto Press; 2009. p. 94–108

6. Lavallée LF. Practical application of an Indigenous research framework and two qualitative Indigenous research methods: Sharing Circles and Anishnaabe symbol-based reflection. International Journal of Qualitative Methods. 2009;8(1): 21–40. Available from: https://doi.org/10.1177/160940690900800103 [Accessed 27th December 2021].

7. Carr T, Sedgewick JR, Roberts R, Groot G. The sharing circle method: Understanding Indigenous cancer stories. SAGE Research Methods Cases: Medicine and Health. 2020. Available from: https://dx.doi.org/10.4135/9781529711264 [Accessed 27th December 2021].

8. Graveline FJ. Circle as methodology: Enacting an Aboriginal paradigm. International Journal of Qualitative Studies in Education. 2000;13(4): 361–370. Available from: https://doi.org/10.1080/095183900413304 [Accessed 27th December 2021].

9. Waddell CM, de Jager MD, Gobeil J, Tacan F, Herron RV, Allan JA, et al. Healing journeys: Indigenous Men’s reflections on resources and barriers to mental wellness. Social Science & Medicine. 2021;270: 113696–8. Available from: https://doi.org/10.1016/j.socscimed.2021.113696 [Accessed 27th December 2021].

10. Baldwin JA, Lowe J, Brooks J, Charbonneau-Dahlen BK, Lawrence G, Johnson-Jennings M, et al. Formative research and cultural tailoring of a substance abuse prevention program for American Indian youth: Findings from the intertribal talking circle intervention. Health Promotion Practice. 2020;22(6): 778-785. Available from: https://doi.org/10.1177/1524839920918551 [Accessed 27th December 2021].

11. Greene S, O’Brien-Teengs D, Whitebird W, Ion A. How Positive Aboriginal Women (PAW) living with HIV talk about their mothering experiences with Child and Family 5 Services in Ontario. Journal of Public Child Welfare. 2014;8(5): 467-490. Available from: https://doi.org/10.1080/15548732.2014.948253 [Accessed 27th December 2021].

Social Robots: What Are They and How Can They Help Children?

Post by Anna Riminchan

Consumer demand for social robots is increasing, particularly in response to the reduced amounts of social contact children that are getting because of school closures (1). Isolation due to the COVID-19 pandemic has accelerated people’s need for social interaction. Social robots have the ability to listen, emote, and sustain a verbal, or non-verbal conversation with others without spreading disease, making them an increasingly relevant solution to today’s problems. However, it is important to balance the growing excitement for social robots with a careful examination of the ethical issues they raise.

Socially assistive robots are devices intended to provide companionship, education, and healthcare assistance for diverse populations. Current research centers around the use of social robots for ageing populations and children. Social robots’ child-specific uses include support during hospitalization (2,3), support for distress during medical procedures (4), mitigation of the effects of a short-term stressor (5), intervention to improve social skills in children with autism spectrum disorder (6,7), and enhancement of education in the classroom (8).

In order to qualify as a social robot, a device must possess three elements: sensors to detect information, a physical form with actuators to manipulate the environment, and an interface that is able to interact with humans on a social level (9). Social robots’ interactions with humans also follow four key rules; (1) social robots have a physical presence, (2) social robots can flexibly react to novel events, (3) social robots are equipped to realize complex goals, and (4) social robots are capable of social interaction with humans in pursuit of their goals (definition adapted from 10).

Today’s social robotics scene contains robots that are available for research purposes as well as some that are sold commercially to children around the world. The present article will present examples of both types of social robots currently being used.

Huggable

Huggable is a blue and green, bear-shaped social robot created by MIT Media Lab in collaboration with Boston Children’s Hospital. An image of Huggable from MIT Media Lab’s website is shown. Its goal is to bridge the socio-emotional gap between child and parent stress and human resource supply in pediatric hospitals. Huggable wants to close this gap with its ability to “mitigate stress, anxiety, and pain in pediatric patients by engaging them in playful interactions”, as advertised on its website. It is meant to enhance social interactions between children and their teachers or healthcare providers through its fun communication abilities.

Research with Huggable also touched on the importance of the physical embodiment aspect of social robot interaction. An experiment was performed with children to compare the effects of the Huggable robot to a virtual character on a screen and a regular plush teddy bear. They showed that children are “more eager to emotionally connect with and be physically activated by a robot than a virtual character”(11). This is one of the first studies in 2012 to demonstrate the potential of social robots as opposed to other types of pediatric interventions.

Moxie

In terms of commercially available robots, Moxie is one of the newest social robots on the market. A picture of Moxie from the Embodied Inc’s website is included. Her teal colour, and animatronic face, as well as her teardrop-shaped head, give her a unique, yet modern look. According to the manufacturer’s website, Moxie is designed to “help autistic children learn the necessary social skills they need to thrive in the world and to provide them with understanding and engaging company.” Moxie is about 1500$ with a 40$ a monthly subscription after the first year of adoption. A highly expressive social robot, with an emotive electronic face, Moxie is designed to have large eyes, to promote eye contact in children. She presents the child with weekly missions to encourage learning and exploration of different topics related to human experiences, ideas, and life skills like kindness, empathy, and friendship. Guided meditations and breathing exercises can help children regulate their emotions and develop their self-expression in a positive way. The manufacturer’s website claims that children can read to Moxie to build confidence in their verbal ability and increase comprehension. Unstructured play can also help promote creativity and self-reflection. The website includes a page entitled “ The Science Behind Moxie”, which supports some claims made by manufacturers on Moxie’s abilities with other social robot studies. However, the only formal data available on Moxie’s effectiveness comes from a short, preliminary study done by the manufacturers, featuring a very small sample size. Although more research is needed on her effects on children, Moxie is a promising social robot for at-home use!

Researchers and manufacturers alike are continuing to acknowledge the growing potential of social robots for child wellbeing. With possible benefits like decreasing distress during hospitalization (2,3,4), enhancing interactions with others (6,7), and helping to promote healthy emotional regulation in response to stress (5), social robots have a unique set of capabilities to enhance children’s lives. However, more research is needed to establish the effectiveness of specific commercial social robots before manufacturers can soundly claim the benefits of well-researched robots as pertaining to their own product. Furthermore, the security of sensitive information a user shares with a social robot is currently evolving as consumers become more aware of ethical issues surrounding data privacy. Concerns about data security and sharing are being addressed by some, but not all social robot manufacturers. Of those which address data privacy, many statements are brief, and do not offer the consumer enough to make a fully informed, consenting decision on sharing their personal information. This information comes from an analysis performed in our yet unpublished paper, which addresses the greatly variable quality of claims made by social robot manufacturers. Although social robots show great potential for enhancing child well-being, further consideration of ethical issues, as well as re-evaluation of the quality of claims made by manufacturers is needed to enhance consumer’s experiences.

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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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References

1. Jargon J. Pandemic Tantrums? Enter the Robot Playmate for Kids [Internet]. WSJ. [cited 2021 Nov 10]. Available from: https://www.wsj.com/articles/pandemic-tantrums-enter-the-robot-playmate-for-kids-11596542401

2. Farrier CE, Pearson JD, Beran TN. Children’s fear and pain during medical procedures: A quality improvement study with a humanoid robot. Canadian Journal of Nursing Research. 2020 Dec;52(4):328-34.

3. Okita SY. Self–Other’s Perspective Taking: The use of therapeutic robot companions as social agents for reducing pain and anxiety in pediatric patients. Cyberpsychology, Behavior, and Social Networking. 2013 Jun 1;16(6):436-41.

4. Trost MJ, Ford AR, Kysh L, Gold JI, Matarić M. Socially assistive robots for helping pediatric distress and pain: a review of current evidence and recommendations for future research and practice. The Clinical journal of pain. 2019 May;35(5):451.

5. Crossman MK, Kazdin AE, Kitt ER. The influence of a socially assistive robot on mood, anxiety, and arousal in children. Professional Psychology: Research and Practice. 2018 Feb;49(1):48.

6. Diehl JJ, Schmitt LM, Villano M, Crowell CR. The clinical use of robots for individuals with autism spectrum disorders: A critical review. Research in autism spectrum disorders. 2012 Jan 1;6(1):249-62.

7. Pennisi P, Tonacci A, Tartarisco G, Billeci L, Ruta L, Gangemi S, Pioggia G. Autism and social robotics: A systematic review. Autism Research. 2016 Feb;9(2):165-83.

8. Belpaeme T, Kennedy J, Ramachandran A, Scassellati B, Tanaka F. Social robots for education: A review. Science robotics. 2018 Aug 15;3(21).

9. del Moral S, Pardo D, Angulo C. Social robot paradigms: An overview. In International Work-Conference on Artificial Neural Networks 2009 Jun 10 (pp. 773-780). Springer, Berlin, Heidelberg.

10. Duffy BR, Rooney C, O’Hare GM, O’Donoghue R. What is a social robot? In10th Irish Conference on Artificial Intelligence & Cognitive Science, University College Cork, Ireland, 1-3 September, 1999. 1999 Sep 1.

11. Jeong S, Breazeal C, Logan D, Weinstock P. Huggable: the Impact of Embodiment on Promoting Socio-Emotional Interactions for Young Pediatric Inpatients. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems 2018 Apr;21:1-13.

12. Project Overview ‹ Huggable: A social robot for pediatric care [Internet]. MIT Media Lab. [cited 2021 Nov 29]. Available from: https://www.media.mit.edu/projects/huggable-a-social-robot-for-pediatric-care/overview/

13. Embodied Moxie [Internet]. Embodied, Inc. [cited 2021 Nov 29]. Available from: https://embodied.com/

Neuroethical challenges of screening for brain injury in women who have experienced intimate partner violence

One in three women will experience intimate partner violence (IPV) in their lifetime. Up to 92% of these women will also suffer a brain injury (BI) at the hands of a partner (1,2). To put this in a Canadian perspective, for every 1 NHL player that suffers a concussion, 5,500 Canadian women suffer the same injury due to IPV. It is with these statistics in mind that research teams such as the SOAR project (Supporting Survivors of Abuse and Brain Injury through Research) have been assembled to better understand, characterize, and manage the urgent crisis that is intimate partner violence-related brain injury (IPV-BI).

A major pillar of scientific and clinical interest in IPV-BI research is designing and implementing BI screening tools specific to IPV. Although research teams approach this topic with the intent of better understanding IPV-BI, improving BI diagnostic science, and designing intervention strategies tailored to IPV-BI, careful consideration must be taken to ensure that providing BI screening information will not harm patients in other areas of their lives. To justify any health screening, two criterion must be met: 1) the presence of sufficient risk of a positive result (in other words, the likelihood of a positive result must be deemed significant); and 2) the availability of an evidence-based validated treatment or intervention in the event of a positive result (3–5). Despite these concerns, when limiting perspective to a healthcare silo, the benefits of screening for IPV-BI seem to outweigh the concerns. However, the impacts of screening for IPV-BI outside of the healthcare context must also be considered. Through applying an intersectional lens, which considers the intersection of social categories such as race, gender, class, and other characteristics of marginalization, we recognize the wide-ranging experiences of survivors of IPV and acknowledge we have a responsibility to ensure BI information in other contexts does no harm. Specific to women who have experienced IPV-BI, the legal implications of BI screening information are of particular concern. 

My master’s thesis examined the ethico-legal considerations of screening for BI in women who have experienced IPV. The concerns surrounding screening for IPV-BI arise from a history of mental health information, such as depression, anxiety, or post-traumatic stress disorder (PTSD) being weaponized against women in family law proceedings. Not only does this imply BI will be similarly weaponized, but that disorders often diagnosed alongside BI – depression, anxiety, and PTSD – will almost certainly be used in an attempt to prove a woman is unfit to parent. To examine this issue, lawyers were interviewed to elicit their knowledge of IPV, BI, and IPV-BI, as well as the role each may play in Canadian family courts.

Lawyers provided significant insight into how IPV-BI may impact the outcome of parenting disputes in Canadian family law. The major findings can be separated into three themes: (1) education; (2) capacity; (3) causation. 

(1) Education

It was clear through the interviews that there is a limited understanding of both IPV and IPV-BI by the legal profession. Despite all participants reporting they have had cases which involved IPV, most reported no formal education on IPV and its complexities or how it should factor into parenting disputes. It is therefore unsurprising that IPV is often dismissed within family law as irrelevant, and foreshadows lawyers being similarly ill-equipped to support clients who have sustained IPV-BI.

(2) Capacity

Capacity, here, refers to either a woman’s ability to give and receive legal instructions because of any deficits caused by the BI, or more importantly, the woman’s capacity to parent. Every participant stated that they would expect the opposing lawyer to use IPV-BI as a means to challenge a woman’s ability to parent. Interestingly, participants also said they would do the exact same thing if they were representing the alleged abuser, despite acknowledging how absurd that may sound. This mirrors the historical instances in family law where stigmatized health disorders such as depression were used to minimize a woman’s parenting capacity.

(3) Causation

Lastly, lawyers emphasized that it would be difficult to prove that IPV caused the BI if there was no physical evidence. Unfortunately, this is often difficult for women and lawyers to provide in situations involving IPV. In the absence of physical evidence showing IPV or IPV-BI, this becomes a situation of hearsay. In these cases, women are either not believed, their experiences of violence are minimized, or the courts acknowledge that the IPV exists but dismiss it as marital conflict and deem it irrelevant to the parenting dispute. Courts may also rely on a physician’s testimony to discuss the implications of BI on tasks relevant to parenting (such as memory). However, not all physicians are well informed on the complexities of IPV-BI. It is therefore difficult for women and their lawyers to find suitable experts who can speak to both IPV and BI appropriately without causing undue harm to women through the testimony of BI and its effects.

Should we continue to screen?

Ultimately, these themes show that IPV-BI does leave women legally vulnerable due to a lack of legal precedent (it has never been seen before), inadequate education surrounding IPV and IPV-BI for legal professionals, and the difficulty in proving causation. It is important to emphasize that the BI is not the problem. Rather, it is inserting it into a legal system that is ill-equipped to appropriately address IPV-BI and which continues to suffer from the influences of sexism and racism. Although I have highlighted issues with screening for IPV-BI, I am not advocating for the cessation of this important practice; however, screening should implement the following recommendations to ensure equitable and ethical care:

1. Expert allyship: Organizations such as SOAR should have physicians in their team who are well versed in IPV-BI and eager to advocate for women in court. 
2. Trauma-informed legal team: Connecting women to trauma-informed legal professionals ensures women feel supported and both women and their counsel are well-prepared to address IPV and IPV-BI in parenting disputes.
3. Assessment of parenting capacity: Incorporate an assessment of the patient’s capacity to parent into the screening tool. This may help counteract any allegations immediately, avoiding additional assessments and mitigating the impact these claims may have on the outcome.
4. Transparent informed consent: It is important that patients know that this information will likely be submitted in a parenting dispute by their spouse’s counsel. Informed consent will ensure patients can adequately prepare with their legal team. 

Without implementation of these recommendations, IPV-BI has the potential to become another avenue for the perpetuation of violence post-separation – a common occurrence in outcomes of parenting disputes in Canada. These recommendations call for scientists and clinicians alike to broaden their conception of ethics and contextualize their research within the reality of their participants’ and patients’ lives.  

Although current statistics show heterosexual women experience the most severe physical IPV conducive to causing BI, it is important to note that IPV in all of its forms (physical, psychological, sexual, financial, coercive control) and IPV-BI is not exclusive to heterosexual relationships or to people identifying as women. Future research surrounding IPV-BI, IPV-BI screening, and their intersection with law should be expanded to explore the phenomenon with other relationships and identities along the sexuality and gender spectrums.

References

1. World Health Organization, Department of Reproductive Health and Research, London School of Hygiene and Tropical Medicine, South African Medical Research Council. Global and regional estimates of violence against women. WHO. World Health Organization; 2014. 
2. Valera EM, Berenbaum H. Brain injury in battered women. J Consult Clin Psychol. 2003;71(4):797–804. 
3. Arora N, Hjalmarsson C, Lang E, Boyle A, Atkinson P. We should routinely screen for domestic violence (intimate partner violence) in the emergency department. Can J Emerg Med. 2019;21(6):701–5. 
4. McLaughlin KD. Ethical considerations for clinicians treating victims and perpetrators of intimate partner violence. Ethics Behav [Internet]. 2017;27(1):43–52. Available from: http://dx.doi.org/10.1080/10508422.2016.1185012
5. Palmer VJ, Yelland JS, Taft AJ. Ethical complexities of screening for depression and intimate partner violence (IPV) in intervention studies. BMC Public Health. 2011;11(5). 

Acknowledgements to Dr. Paul van Donkelaar, Dr. Judy Illes, Dr. Deana Simonetto, and the entire SOAR team for their leadership, support, and contributions to this work.