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.
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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Ikuenobe, P (2016). Good and Beautiful: A Moral-Aesthetic View of Personhood in African Communal Traditions. Essays in Philosophy17(1): 125-163.
Mkhize, N. (2006). Communal personhood and the principle of autonomy: the ethical challenges. CME, 24(1).
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.
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.
Tauri, Juan M. (2017). Research ethics, informed consent and the disempowerment of First Nation peoples. Research Ethics 14(3): 1-14.
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.
Join us forEthics 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.
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.
Join us forEthics 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.
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.
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.
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.
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.
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].
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 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.
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.
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!
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.
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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.
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.
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.
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.
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:
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.
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.
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.
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.
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.
Valera EM, Berenbaum H. Brain injury in battered women. J Consult Clin Psychol. 2003;71(4):797–804.
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.
What is the role of the persons with lived experience in research?
Researchers and research organizations in Canada are changing the way that they think about the role of persons with lived experience in research. There is a shift away from thinking about these groups as passive sources of data and towards meaningful collaboration with them at all stages of research (1). This can involve working collectively to set research priorities, select research designs, and interpret and share research findings. There are large potential benefits, even above and beyond the ethical imperative of “nothing about us without us”. Patient engagement in research can result in work that is better aligned with the actual goals of the population under study as well as improving study enrollment and decreasing participant drop-out (2). There are also potential benefits of the collaborative process for participants themselves. In one study, grandparents who acted as research advisors reported that the experience provided a sense of purpose and a feeling of connection (3). However, prioritizing a collaborative research approach does present unique challenges. It takes time and resources, there are a wide range of methodologies and large differences in how engagement is accomplished between research groups, and there is a potential for “tokenization”, which is the appearance of inclusiveness in the absence of true collaboration.
Incorporating patient engagement practices specifically in the technology research and development space has some unique additional challenges. Emerging technologies may not yet be ready for real-world deployment at the point of care, but engaging persons with lived experience in their early development is critical. It can be difficult to know how to ask participants the best way to study a set of devices that are still under development and part of a quickly-changing commercial landscape! For this reason, pathways to involve persons with lived experience in healthcare technology research are not yet well established.
The need to engage persons with lived experience in social robotics research
One example of a potential health technology that our group would like to study in a patient-centered way is social robotics. These interactive devices are intended to be effective social partners for a person. Their functions can include acting as a fun and entertaining companion, acting as a virtual assistant (e.g., setting up video calls, using the internet to answer questions), providing reminders to take medication, and monitoring the user for events like a fall, among other things. They are being trialled for applications like supporting children’s mental health, as supports for individuals for Autism Spectrum Disorder, and as companions for persons living with dementia (4-8). The COVID-19 pandemic is likely to further accelerate the adoption of social robotics as people seek to reduce live human contact without reducing social connectedness (9).
However, social robotics development priorities are largely driven by the market, engineering constraints, and the recommendations of healthcare experts, rather than by input from persons with lived experience (10). While technically advanced devices are coming to market and manufacturers are making strong claims about the usefulness of these objects, scientific evaluation of these claims is of poor quality and does not focus on the experiences and outcomes that are important to potential users and their families. Not including the voices of potential users can lead to the development of devices that ultimately fail to meet their needs.
Engagement at Neuroethics Canada: Lived Experience Expert Groups
Our research group is currently running a set of projects looking at robotic interventions for anxiety in children and teens. To engage members of these groups directly, we have developed a Lived Experience Expert Group (“LEEG” – we call this group our “League”) to advise on all aspects of our ongoing work on social robotics for children. The group includes a mix of children, teens, and parents/guardians with lived experiences of acute and chronic anxiety and a range of ages and diagnostic groups (e.g., social anxiety, generalized anxiety disorder). Involving young people themselves in patient experience research is critical as their reports on the quality of an interaction can differ from those of adults – even from their parents’ reports of the same event (11, 12). Involving an expert group, rather than a single token lived experience partner, tips the balance of our research team towards individuals with lived experience and away from researchers, as well as promoting a diversity of voices in the work. We are excited to work with the League to refine our research questions, design smart studies, and learn more about the experiences and priorities of young people living with anxiety.
This work is supported by BC Support Unit, the BC Children’s Hospital, and the Michael Smith Foundation for Health Research and is being done under the supervision of Dr. Julie Robillard, with team members Anna Riminchan, Jaya Kailley, Kat Kabacińska, and our generous persons with lived experience partners.
Robillard JK, Jordan I. Dialogue? Yes. Burden? No. Ethical challenges in engaging people with lived experience in health care research. Brainstorm, 32-35.
Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, Brito JP, Boehmer K, Hasan R, Firwana B, Erwin P. Patient engagement in research: a systematic review. BMC health services research. 2014 Dec;14(1):1-9.
Sheehan OC, Ritchie CS, Garrett SB, Harrison KL, Mickler A, AL EE, Garrigues SK, Leff B. Unanticipated Therapeutic Value of the Patient-Centered Outcomes Research Institute (PCORI) Stakeholder Engagement Project for Homebound Older Adults. Journal of the American Medical Directors Association. 2020 May 4;21(8):1172-3.
Costescu CA, David DO. Attitudes toward Using Social Robots in Psychotherapy. Transylvanian Journal of Psychology. 2014 Mar 1;15(1).
Dawe J, Sutherland C, Barco A, Broadbent E. Can social robots help children in healthcare contexts? A scoping review. BMJ paediatrics open. 2019;3(1).
Hung L, Liu C, Woldum E, Au-Yeung A, Berndt A, Wallsworth C, Horne N, Gregorio M, Mann J, Chaudhury H. The benefits of and barriers to using a social robot PARO in care settings: a scoping review. BMC geriatrics. 2019 Dec;19(1):1-0.
Kabacińska K, Prescott TJ, Robillard JM. Socially assistive robots as mental health interventions for children: a scoping review. International Journal of Social Robotics. 2021 Aug;13(5):919-35.
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.
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This blog post discusses some of the key findings from the article “The Impact of a Global Pandemic on People Living with Dementia and their Care Partners: Analysis of 417 Lived Experience Reports , paper here).
It is without question that the COVID-19 pandemic has greatly impacted our daily lives. From new health policies to months being on lockdown, we have had to adapt to the rapidly changing circumstances within the last year and a half. Remember when every day necessities were becoming scarce and the difficulty in trying to find a roll of toilet paper? More importantly, as the pandemic progressed, there were increased concerns surrounding available hospital beds and ventilators [1,2] and the allocation of resources including vaccines and therapies to combat the virus [2,3]. While the entire world has had a handful of shared experiences, some have been more vulnerable to the virus and the regulations set in place.
During the earlier days of the pandemic, we learned that older adults were at a higher risk of contracting the virus, especially those living in long-term care facilities, including people living with dementia. They were restricted from going out, attending regular health care services, receiving home support, or accessing community supports and social networks. Families and care partners also had difficulties in caring for their loved ones, as some were unable to physically visit them in a long-term care home. As this continues to be an unprecedented time, it is important to understand the experiences and needs of the dementia community.
What we did
With an ongoing collaboration with the Alzheimer Society of British Columbia, we at the Neuroscience, Engagement, and Smart Technology (NEST) Lab developed a survey to explore the lived experiences of people living with dementia and their care partners during the pandemic. In this survey, we touched on four different themes including (1) information and resource needs, (2) caring for someone living with dementia during the COVID-19 pandemic, (3) mental health and well-being needs, and (4) the use of technology for social connection during the pandemic. We distributed the survey between June and August 2020 and received 417 responses (395 care partners and 22 people living with dementia).
What we found
Information and resource needs
Figure 1 shows the locations from which our participants were receiving their information about COVID-19. With so many sources of information during the pandemic, our participants found that the information they accessed were helpful in terms of maintaining their own health (74% of care partners, 86% people living with dementia) and a period of social distancing (70%, 77%). They found that the information they accessed was either somewhat or very stressful (29%, 23%), neither stressful or reassuring (23%, 23%), or somewhat or very reassuring (48%, 54%). In terms of needs, care partners wished to have learned more about care options including long-term care and respite care, while people living with dementia wanted to learn more about self-care during the pandemic.
Figure 1. “Where have you been receiving information about the COVID-19 pandemic?”
Caring for someone living with dementia
The focus of this section in our survey was to identify the main concerns of care partners during the pandemic. While there was concern for every care partner scenario described in the survey, the five major concerns were having more responsibilities as a care partner, access to therapy and/or a vaccine for COVID-19 in the future, having the person they care for be infected with COVID-19, the person that they care for having difficulty understanding COVID-19 and the health regulations set in place, and having themselves be infected with COVID-19. Figure 2 presents other areas of concern for these care partners.
Figure 2. Care partner concerns.
Mental health and well-being
An increased period of social distancing and being on lockdown affected the mental health and well-being of those living with dementia and their care partners. People living with dementia were restricted in their home, not being able to go out to get groceries, attend regular health care services, or even access community supports. With this in mind, we uncovered that the pandemic had increased our participants’ stress overall (58%, 62%), and they had felt left out (63%, 81%), isolated (74%, 81%), and lacked companionship (70%, 76%). To manage this stress and maintain their well-being, participants said that they spent time talking to friends and family, walking around the neighbourhood, watching television, and engaged in household activities.
Technology and social connection
As many in-person activities were suspended and some transitioned to a virtual setting, we were interested in whether people living with dementia and their care partners were utilizing technology for social connection. Even though there were increased feelings of isolation and lack of companionship during the pandemic, our participants were able to socialize and connect with others through a cell phone/smartphone, on devices such as laptops and tablets, as well as home phones. However, only 19% of care partners and 36% of people living with dementia felt that using technology to connect with others felt the same as interacting with them in person. There is something to be said about the quality and impact of having in-person interactions and the impact it can have on one’s mental well-being.
Our survey took the opportunity during a challenging time to explore the real life experiences of people living with dementia and their families and care partners. With this, we were able to identify some actionable priorities for services such as those provided by the Alzheimer Society of B.C. to better support the dementia community during a pandemic. Since the publication of our results, the Alzheimer Society of B.C. already implemented some of the suggestions and findings in their service delivery. Moving forward, there will be plans to implement long-term changes to address the needs of this community and to better manage the care for older adults and people living with dementia.
The authors of this work were Mallorie Tam, Dr. Jill Dosso, and Dr. Julie Robillard. Special acknowledgement to the Alzheimer Society of B.C. for their support and collaboration on the project.
Emanuel EJ, Persad G, Upshur R, Thome B, Parker M, Glickman A, Zhang C, Boyle C, Smith M, Phillips JP (2020) Fair allocation of scarce medical resources in the time of Covid-19. N Engl J Med382, 2049–2055.
Smith EE, Couillard P, Fisk JD, Ismail Z, Montero-Odasso M, Robillard JM, Vedel I, Sivananthan S, Gauthier S (2020) Pandemic dementia scarce resource allocation. Can Geriatr J23, 216-218.
In April 2021, Neuralink released a video of Pager, a macaque monkey, playing a computer pong game with their brain . The N1 Link, a fully-implanted neural recording and data transmission device with 1024 electrodes, allowed Pager to play pong by using patterns of their neural activity to model the movements of a computer cursor . There are many ethical considerations associated with brain-computer interfaces and their use with animals, such as physical harm and psychological distress . Here, we will focus more generally on the ethical challenges of the brain-computer interfaces Neuralink is developing and the global attention that Pager has drawn to neuroethics.
Elon Musk founded Neuralink in 2016 with the mission of merging humanity with artificial intelligence. Neuralink aims to achieve this through designing and building wireless, implantable brain-computer interfaces to help improve treatments for neurological conditions such as Alzheimer’s disease and dementia . As shown by Pager’s ability to play a game using their mind only, Neuralink is quickly progressing closer to its goal of enhancing brain function by integrating artificial processing .
The ongoing development of neurotechnology is pulling some key neuroethics topics into the limelight . As Neuralink’s video of Pager gained popularity online, more and more individuals began expressing interest in the potential implications of neurotechnology . On social media platforms, people are engaging in neuroethics-related discussion threads , bringing increased attention and perspectives to topics often discussed in the field. Examples of topics include data privacy concerns, safety issues, and considerations around how brain technology may influence behaviour .
Renewed public interest in the ethical challenges of these technologies stresses the importance of ethical and socially responsible research and development . One key ethical consideration is the tradeoff between potential benefits and adverse effects of neural implant devices. As the use of neurotechnology may move from remediation to enhancement in the future, this risk-benefit calculation may become more complicated and must be further scrutinized .
The use of brain-computer interfaces also raises questions about who owns an individual’s brain data. Important issues include who has the right to write data to implanted devices and how developers can ensure privacy and security during the use of their devices . Whether or not BCIs can be developed to enhance what a person can achieve, there are already concerns around how social equity and access will continue to be impacted. Further developments will likely continue to exacerbate health inequalities, making these questions even more important to answer .
In the future, brain-computer interfaces may transform approaches to treating neurological conditions and even move to performance enhancement. It has been suggested that the success of these technologies may depend on multiple factors . These components may include the willingness of innovators to prioritize ethical innovation drawn from interdisciplinary expertise , and regulations and policies that prioritize individual and societal wellbeing.
Maynard A. D., Scragg M. The Ethical and Responsible Development and Application of Advanced Brain Machine Interfaces. Journal of Medical Internet Research 2019-10-31; 21(10): e16321. Accessed May 3, 2021.