Stigma around technology use by older adults

Canadians are living longer, healthier lives, resulting in a rapidly growing population of older adults. It is projected that the number of adults aged 65 and over in Canada will grow by 68% over the next two decades (1). One way to support the quality of life of this growing demographic is through technology. Assistive technologies (AT) such as blood pressure monitors (2), wheelchairs (3), and fall detectors (4) can promote the physical health of older adults. Social robots, AT that can interact with users (Figure 1), can assist older adults by improving mood (5), decreasing blood pressure (6), and reducing the need for analgesic and behavioural medication (7). Everyday information and communication technologies (EICT) – including mobile phones, computers, and email services – allow for regular communication with social contacts (3) and the ability to look up health information (8). Telemedicine provides a unique healthcare solution for older adults who face barriers to in-person care such as isolation, severe illness, and functional challenges (9).

Figure 1 – Social robots such as MiRo-E can interact with users. Adapted from MiRo-E University Research

Despite the known benefits of these technologies, there is a wide range of barriers to technology adoption by older adults. Such barriers include privacy concerns (10), inappropriate device design (11), and a lack of familiarity with technology (12). Another barrier is stigma around the use of technologies by older adults (5,10,13). Negative stereotypes of old age include increased dependency, disability, and disconnection from society (13,14). Furthermore, within technology research, ageing is often regarded as a ‘problem’ that technology may address (15). In this piece, I will summarize the literature on stigma around technology use by older adults and how we might address this issue.

Older adults often associate AT with negative stereotypes about ageing. For example, some older adults have stated that they are not ‘disabled’ or ‘old’ enough to require AT (16). In one research study, older adults who stated that they did not need AT recommended these devices for people who experience isolation, dependency, and disability (17). Some older adults feel that adopting AT signifies a loss of independence (4), and others experience feelings of embarrassment and incompetency when using AT (12). Furthermore, some older adults have expressed preference for items that are not necessarily ‘assistive’ or ‘medical’ in nature, such as an umbrella in place of a walking stick (2), a smartwatch with assistive features (4), or a shopping cart in place of a walker (16). On the other hand, EICT such as smartphones and computers are often regarded by older adults as a way to keep up with society, and thus older adults associate non-use of these technologies with negative ageing stereotypes (13). However, when learning to use EICT, many older adults experience embarrassment, anxiety, or fear of making mistakes (2,18). Some have reported feeling ‘older’ after encountering vision and haptic-related challenges while using EICT (13). Altogether, the literature shows that technologies often remind older adults of negative aspects of ageing. As a result, older adults are less likely to adopt these technologies.

Non-use of the technologies described above raises several issues, including a key neuroethical problem: decreased access to mental health benefits. For example, several online services that can improve mental health – such as telemedicine and tele-counselling services – are accessed through technologies such as smartphones and computers. Research has shown that interacting with social robot technologies can improve mood (5), and technologies such as smartphones allow people to stay in touch with one another (3), especially during the current COVID-19 pandemic where in-person contact is restricted. These are just a few mental health benefits that older adults who limit their use of technologies have reduced access to. As a result, there is a need to address key barriers to technology adoption, such as stigma.

One of the most important things we can do to address issues of stigma and non-use is to engage end-users in the process of device development. Older adults are often not consulted when technologies are being developed for them, leading to devices that are often misaligned with their needs and priorities (19). A study by Federici et al. found that the most common reason for device abandonment was an inappropriate device design (11). Incorporating ideas and feedback from older adults about device design, features, applications, affective considerations, and ethical concerns into the creation and implementation of technologies will likely result in devices that this population is more comfortable using.

Bio: Jaya Kailley is an Undergraduate Research Assistant under the supervision of Dr. Julie Robillard in the NEST Lab, and she is pursuing an Integrated Sciences degree in Behavioural Neuroscience and Physiology at the University of British Columbia. She currently supports research projects that aim to include end-users in the process of social robot development. Outside of work, Jaya enjoys playing the piano, reading, and spending time with her family and friends.


References

  1. Infographic: Canada’s seniors population outlook: Uncharted territory | CIHI [Internet]. [cited 2022 Jun 16]. Available from: https://www.cihi.ca/en/infographic-canadas-seniors-population-outlook-uncharted-territory
  2. Chen K. Why do older people love and hate assistive technology? ‒ an emotional experience perspective. Ergonomics. 2020 Dec 1;63(12):1463–74.
  3. Tomšič M, Domajnko B, Zajc M. The use of assistive technologies after stroke is debunking the myths about the elderly. Topics in Stroke Rehabilitation. 2018 Jan 2;25(1):28–36.
  4. Caldeira C, Nurain N, Connelly K. “I hope I never need one”: Unpacking Stigma in Aging in Place Technology. In: CHI Conference on Human Factors in Computing Systems [Internet]. New Orleans LA USA: ACM; 2022 [cited 2022 Jun 10]. p. 1–12. Available from: https://dl.acm.org/doi/10.1145/3491102.3517586
  5. Hung L, Liu C, Woldum E, Au-Yeung A, Berndt A, Wallsworth C, et al. The benefits of and barriers to using a social robot PARO in care settings: a scoping review. BMC Geriatr. 2019 Aug 23;19(1):232.
  6. Robinson H, MacDonald B, Broadbent E. Physiological effects of a companion robot on blood pressure of older people in residential care facility: A pilot study. Australasian Journal on Ageing. 2015;34(1):27–32.
  7. Petersen S, Houston S, Qin H, Tague C, Studley J. The Utilization of Robotic Pets in Dementia Care. Journal of Alzheimer’s Disease. 2017 Jan 1;55(2):569–74.
  8. Vroman KG, Arthanat S, Lysack C. “Who over 65 is online?” Older adults’ dispositions toward information communication technology. Computers in Human Behavior. 2015 Feb 1;43:156–66.
  9. Frydman JL, Li W, Gelfman LP, Liu B. Telemedicine Uptake Among Older Adults During the COVID-19 Pandemic. Ann Intern Med. 2022 Jan;175(1):145–8.
  10. Pirzada P, Wilde A, Doherty GH, Harris-Birtill D. Ethics and acceptance of smart homes for older adults. Informatics for Health and Social Care. 2021 Jul 9;1–28.
  11. Federici S, Meloni F, Borsci S. The abandonment of assistive technology in Italy: A survey of users of the National Health Service. European journal of physical and rehabilitation medicine. 2016;52(4):516–26.
  12. Evans N, Boyd H, Harris N, Noonan K, Ingram T, Jarvis A, et al. The experience of using prompting technology from the perspective of people with Dementia and their primary carers. Aging & Mental Health. 2021 Aug 3;25(8):1433–41.
  13. Köttl H, Gallistl V, Rohner R, Ayalon L. “But at the age of 85? Forget it!”: Internalized ageism, a barrier to technology use. Journal of Aging Studies. 2021 Dec 1;59:100971.
  14. Dionigi RA. Stereotypes of Aging: Their Effects on the Health of Older Adults. Journal of Geriatrics. 2015 Nov 12;2015:1–9.
  15. Vines J, Pritchard G, Wright P, Olivier P, Brittain K. An Age-Old Problem: Examining the Discourses of Ageing in HCI and Strategies for Future Research. ACM Trans Comput-Hum Interact. 2015 Mar 4;22(1):1–27.
  16. Astell AJ, McGrath C, Dove E. ‘That’s for old so and so’s!’: does identity influence older adults’ technology adoption decisions? Ageing and Society. 2020 Jul;40(7):1550–76.
  17. Wu YH, Wrobel J, Cornuet M, Kerhervé H, Damnée S, Rigaud AS. Acceptance of an assistive robot in older adults: a mixed-method study of human–robot interaction over a 1-month period in the Living Lab setting. Clin Interv Aging. 2014 May 8;9:801–11.
  18. University of Massachusetts Lowell, McDonough CC. The Effect of Ageism on the Digital Divide Among Older Adults. GGM. 2016 Jun 16;2(1):1–7.
  19. Mannheim I, Schwartz E, Xi W, Buttigieg SC, McDonnell-Naughton M, Wouters EJM, et al. Inclusion of Older Adults in the Research and Design of Digital Technology. Int J Environ Res Public Health. 2019 Oct;16(19):3718.

The significance of non-pharmacological treatments for depression in people living with dementia

As part of my role in the Neuroscience, Engagement, and Smart Tech (NEST) Lab at Neuroethics Canada, I conducted a review of non-pharmacological interventions for mental health in people living with dementia. What are these non-pharmacological interventions, and why are researchers so interested in studying them?

Among the 50 million people worldwide with a diagnosis of dementia, roughly 32% (16 million) report symptoms of depression (1). Within this group, half will have received a formal diagnosis of major depressive disorder. You may already be familiar with pharmacological or drug-based interventions for depression (e.g., antidepressants). However, in recent years, there has been a push for non-pharmacological treatment alternatives for people living with dementia.

Non-pharmacological treatments are defined as any activity or care plan to reduce symptoms of a given ailment. These interventions are often adjustable to accommodate the needs of the recipients, something traditional drug interventions lack.

The issues surrounding pharmacological treatments for depression

Various studies highlight some of the drawbacks surrounding the drug interventions commonly used to treat major depressive disorder. The findings of a 2013 study revealed that 69% of older adults from a data sample of 2 million received a prescription psychotropic without a formal psychiatric diagnosis (2). In addition, many were found to not be receiving any type of mental health specialty care (2).

Figure 1 – Weichers et. al (2013). Percentage of mental health care utilizers and non–mental health care utilizers without a psychiatric diagnosis who filled a prescription for psychotropic medication in 2009, by age and drug class. AD, antidepressants; AP, antipsychotics; ANX, anxiolytics; STIM, stimulants; MS/AC, anticonvulsant mood stabilizers; and LITH, lithium.

These results come with caveats. Not being able to qualify for a diagnosis does not negate the existence of a medical need, nor does it address the social barriers individuals may face in obtaining a diagnosis. Experiencing symptoms can drastically impact a person’s physical health and overall quality of life (3). Symptoms are expressed in a multitude of ways (e.g., lethargy, insomnia, changes in appetite, feeling discouraged or unhappy) and in varying intensities (4). Depression manifests itself differently for each individual and depending on their given situation, clinical treatment may have been the best course of action.

Nevertheless, the study results suggest that the current implementation of clinical approaches to treating depression may not meet the desired standards of care (2). Also consider the high relapse rates of major depressive disorder in individuals exclusively using pharmacological therapies (5).

The efficacy of drug interventions for treating depression in people living with dementia has been challenged by various studies (6,7,8). Evidence indicates that antidepressants are associated with an increased risk of recurrent falls, whereas non-pharmacological care alternatives have the potential to be just as effective as drug treatments with fewer risks (6,7).

Certain psychological treatments can match the effectiveness of clinical approaches to mood disorders (4), and a few are somewhat more effective (6). Drug interventions alone can be an effective treatment method for many (5,6,7). However, we must also assess the ethical considerations surrounding limited catalogues of treatment options only optimal for a subset of individuals.

Thus, there is unexplored potential in the application of non-pharmacological interventions as both a supplement to drug treatments and as their own form of care.

Sociocultural and ethical considerations

The myriad of issues related to treatments for mental health in people living with dementia are complex. A discussion regarding healthcare disparities and the socioeconomic and cultural barriers to care could warrant a post of its own. Here, I will attempt to summarize a few.

  • Stigma — There may be cultural stigma surrounding mental health and treatment (8,9). Individuals who inherit cultural values from their respective culture or community may not feel comfortable with western conventions of mental health. Thus, given how drug interventions are prescribed in Canada, pharmacological treatments may not be the most effective or accessible option.
  • Economic factors — Prescription drug costs contribute to the inaccessibility of treatment. Canada is the only developed country with a universal healthcare system that does not cover the cost of prescription drugs. Older adults without private health insurance may be left in a difficult position (10).
  • Location — Individuals living in rural or remote locations may face difficulty with filling their prescriptions over an extended period (11).

There are many more issues pertaining to the limitations of drug interventions in current healthcare models. Thus, there is value in exploring non-pharmacological treatment alternatives (6).

How non-pharmacological interventions for depression can be used

In recent years, there has been growing interest in social prescribing: the act of linking patients with non-drug interventions in their community (6). While non-profit organizations such as the Alzheimer’s Society of BC are unable to prescribe medication, they can provide low or no-cost services aiming to support mental health.

Implementing these non-pharmacological interventions can also be a quite simple. Some common, low-cost interventions that are easy to implement include:

  • Reminiscence therapy — Remembering or sharing details about the past or previous positive events, either alone or with a group. Reminiscence therapy can improve quality of life, cognitive functions, and lower depression (12).
  • Exercise — Exercising the body and the mind can reduce symptoms of depression and improve the overall quality of life (6).
  • Music therapy — Listening to music regularly with a music therapist can improve symptoms of depression (13).
  • Indoor Daylight Exposure —People living with dementia at a nursing home socialized with each other in an indoor setting with ample amounts of daylight each morning. Daylight exposure was found to significantly reduce symptoms of depression (14).

These interventions do not present as very psychological or medical in nature. By framing activities that may reduce symptoms of depression in an approachable, non-clinical manner, care providers could avoid the stigmas around treatment for mental health to encourage greater use of mental health services (15). However, this does not address the issues surrounding mental health perception and discourse. More research is needed to better understand how we can effectively tackle these stigmas.

Providing evidence-based, low-complexity care can also enable people living with dementia to form deeper bonds with their local community and create their own support network. The low cost of execution makes these interventions a great option for treating mild symptoms of depression.

Complex interventions that target more severe symptoms of depression and aim to create lasting effects also exist. These require a higher degree of training from providers and thus are more costly, but evidence highlights their value as potential treatment options (6, 16, 17, 18). Examples include:

  • Cognitive-behavioral therapy (CBT) — Breaking down existing negative cognitions and replacing them with more positive functionally adaptive ones (16) can reduce symptoms of both depression and anxiety (6, 17, 18).
  • Multidisciplinary care — A care plan developed in collaboration with multiple qualified healthcare providers can match the efficacy of drug treatments (6).

There are many other approaches: animal-assisted activities, psychotherapy, cognitive stimulation, and environmental modification, to name a few (6). Non-pharmacological interventions also have the advantage of being flexible and adjustable to one’s individual needs. For example, Shiatsu could be an interesting approach for people with dementia of East Asian descent.

  • Shiatsu — A holistic complementary practice that draws on the principles of traditional Chinese medicine. By applying pressure to certain pressure points, symptoms of depression were reduced when utilized in combination with exercise (19).
Figure 2 – a man performs Shiatsu therapy (left) with a focus on key acupressure points (right).
Credit: Shiatsu Tokyo School, 2021.

Many treatment options exist where traditional drug-based interventions are not appropriate. Individuals could develop a personalized care plan with careful guidance from a qualified medical professional.

There is still an important need for drug interventions. For a subset of the population, it remains quite effective (5,6).

The value in exploring various non-pharmacological treatments has much to do with the agency it gives the individual and how it makes mental health care more attainable to people of all socioeconomic and cultural backgrounds.

Looking to the future

Non-pharmacological interventions may reduce the burden of depressive symptoms in older adults with dementia. Within the next few decades, the global population will continue to age and the number of people living with dementia is expected to increase to 152.8 million cases by 2050 (20). Thus, the need for programs supporting the well-being of older (and younger!) adults with dementia is greater than ever.

In neuroethics research, the way non-pharmacological interventions are received and their overall effectiveness can be studied to highlight healthcare disparities and bring insight into public discussions surrounding brain health and aging. This research may inform initiatives that aim to address the gap in services related to mental health in people living with dementia.

By deepening our understanding of how people living with dementia respond to non-pharmacological interventions, we can improve current treatment approaches and the standard of care. Every individual should have the option to receive the type of care that best suits their specific medical needs.

Special thanks to Dr. Julie Robillard and Viorica Hrincu from the NEST Lab for all their guidance and support in the last year!

Bio: Yu Fei Jiang is a 4th-year undergraduate student studying Behavioural Neuroscience at the University of British Columbia. Her research interests primarily lie in the interaction between technology use in patient care and neuroscience research. She’s also very passionate about science communication and sharing knowledge with others. Outside of work, Yu Fei enjoys all things nerdy; you’ll probably find her either reading books of wildly different genres or playing video games late into the night.


References

1. Goodarzi ZS, Mele BS, Roberts DJ, Holroyd-Leduc J. (2017). Depression Case Finding in Individuals with Dementia: A Systematic Review and Meta-Analysis. J Am Geriatric Society, 65, 937-48. Doi.org/10.1111/jgs.14713

2. Wiechers, I. R., Leslie, D. L., Rosenheck, R. A. (2013). Prescribing of psychotropic medications to patients without a psychiatric diagnosis. Psychiatric Services, 64(12), 1243–1248. https://doi.org/10.1176/appi.ps.201200557

3. Ruo, B., Rumsfeld, J. S., Hlatky, M. A., Liu, H., Browner, W. S., & Whooley, M. A. (2003). Depressive symptoms and health-related quality of life: the Heart and Soul Study. Jama, 290(2), 215-221.

4. Spitzer, R. L., Kroenke, K., Williams, J. B., Patient Health Questionnaire Primary Care Study Group, & Patient Health Questionnaire Primary Care Study Group. (1999). Validation and utility of a self-report version of PRIME-MD: the PHQ primary care study. Jama282(18), 1737-1744.

5. Beck, A. T., & Alford, B. A. (2009). Depression: Causes and treatment. University of Pennsylvania Press.

6. Watt J A, Goodarzi Z, Veroniki A A, Nincic V, Khan P A, Ghassemi M et al. (2021). Comparative efficacy of interventions for reducing symptoms of depression in people with dementia: systematic review and network meta-analysis BMJ; 372 :n532 doi:10.1136/bmj.n532

7. Marcum, Z. A., Perera, S., Thorpe, J. M., Switzer, G. E., Castle, N. G., Strotmeyer, E. S., Simonsick, E. M., Ayonayon, H. N., Phillips, C. L., Rubin, S., Zucker-Levin, A. R., Bauer, D. C., Shorr, R. I., Kang, Y., Gray, S. L., Hanlon, J. T., & Health ABC Study (2016). Antidepressant Use and Recurrent Falls in Community-Dwelling Older Adults: Findings From the Health ABC Study. The Annals of pharmacotherapy50(7), 525–533. https://doi.org/10.1177/1060028016644466

8. Ng, C. H. (1997). The stigma of mental illness in Asian cultures. Australian & New Zealand Journal of Psychiatry, 31(3), 382-390.

9. Ciftci, A., Jones, N., & Corrigan, P. W. (2013). Mental health stigma in the Muslim community. Journal of Muslim Mental Health, 7(1).

10. Morgan, S. G., & Boothe, K. (2016). Universal prescription drug coverage in Canada: Long-promised yet undelivered. Healthcare management forum, 29(6), 247–254. https://doi.org/10.1177/0840470416658907

11. Hippe, J., Maddalena, V., Heath, S., Jesso, B., McCahon, M., & Olson, K. (2014). Access to health services in Western Newfoundland, Canada: Issues, barriers and recommendations emerging from a community-engaged research project. Gateways: International Journal of Community Research and Engagement, 7(1), 67-84.

12. Lök, N., Bademli, K., & Selçuk‐Tosun, A. (2019). The effect of reminiscence therapy on cognitive functions, depression, and quality of life in Alzheimer patients: Randomized controlled trial. International journal of geriatric psychiatry, 34(1), 47-53.

13. Li, H. C., Wang, H. H., Lu, C. Y., Chen, T. B., Lin, Y. H., & Lee, I. (2019). The effect of music therapy on reducing depression in people with dementia: A systematic review and meta-analysis. Geriatric Nursing, 40(5), 510-516.

14. Konis, K., Mack, W. J., & Schneider, E. L. (2018). Pilot study to examine the effects of indoor daylight exposure on depression and other neuropsychiatric symptoms in people living with dementia in long-term care communities. Clinical interventions in aging, 13, 1071.

15. Corrigan, P. (2004). How stigma interferes with mental health care. American psychologist59(7), 614.

16. Taylor, F. G., & Marshall, W. L. (1977). Experimental analysis of a cognitive-behavioral therapy for depression. Cognitive Therapy and Research, 1(1), 59-72.

17. García-Alberca, J. M. (2017). Cognitive-behavioral treatment for depressed patients with Alzheimer’s disease. An open trial. Archives of gerontology and geriatrics, 71, 1-8.

18. Tay, K. W., Subramaniam, P., & Oei, T. P. (2019). Cognitive behavioural therapy can be effective in treating anxiety and depression in persons with dementia: a systematic review. Psychogeriatrics, 19(3), 264-275.

19. Lanza, G., Centonze, S. S., Destro, G., Vella, V., Bellomo, M., Pennisi, M., … & Ciavardelli, D. (2018). Shiatsu as an adjuvant therapy for depression in patients with Alzheimer’s disease: A pilot study. Complementary therapies in medicine, 38, 74-78.

20. Nichols, Emma, et al. (2022). Estimation of the Global Prevalence of Dementia in 2019 and Forecasted Prevalence in 2050: An Analysis for the Global Burden of Disease Study 2019. The Lancet Public Health. 7(2):105–25.

Seizing Hope: High Tech Journeys in Pediatric Epilepsy

Please join us for the world premiere of Seizing Hope: High Tech Journeys in Pediatric Epilepsy!

5:00 PM – 6:15 PM PDT
Wednesday, July 6, 2022
VIFF Centre, 1181 Seymour St., Vancouver, BC V6B 3M7
RSVP to the event here: https://seizinghopefilmvan.eventbrite.ca

Can new technology bring hope to children who have drug-resistant epilepsy?

More than 500,000 children in Canada and the USA have epilepsy. About a third of those children continue to have seizures despite taking anti-seizure medications, also known as pediatric drug resistant epilepsy (DRE). Surgery may be one option for them, but what if there is another option that is less invasive or more effective? What if new technology can bring hope to children who have DRE?

EVENT TIMELINE
4:15PM Doors open
5:00PM Screening starts
5:45PM Panel and Audience Q&A
6:15PM Public event ends

MODERATOR:
Judy Illes, CM, PhD, FRSC, FCAHS

Professor and UBC Distinguished Scholar in Neuroethics
Director, Neuroethics Canada
University of British Columbia

PANELISTS:
Patrick J. McDonald MD, MHSc, FRCSC

Associate Professor and Head, Section of Neurosurgery
Section Head, Neurosurgery, Shared Health Manitoba
Department of Surgery
University of Manitoba

Johann Roduit, PhD
Science Communicator, Producer, and Founding Partner of Conexkt

Please note that seating is general admission and is first-come, first-served. Tickets obtained through registration at Eventbrite do not guarantee guests a seat at the theatre. Theatre is overbooked to ensure a full house.


ABOUT SEIZING HOPE
Families with children suffering from pediatric drug resistant epilepsy (DRE) face complex realities. In a world guided by the promises of technology, the goal of Seizing Hope is to raise awareness about the options offered by different technologies specifically for the brain in complement or as an alternative to treatment with medication. As the directors and producers of this mini-documentary, we want to empower and improve decision-making by exploring values and priorities through the lens of the families and doctors who care for them. We compiled the stories of four families with children who have pediatric DRE to shed light on their hope, trust, and empowerment journey.

The views and research presented in this documentary represent a multi-year neuroethics project funded by the National Institute of Mental Health of the USA National Institutes of Health, BRAIN Initiative.

CREDITS
Neuroethics Canada UBC, with funding from the NIH/NIMH BRAIN Initiative (#RF1MH117805-01) in association with Conexkt Innovation Studio And Cassiar Film CO. present Seizing Hope.
Featuring the Bagg, Chartrand, Thompson, and Cowin families.
Executive Producers Dr. Judy Illes and Dr. Patrick J. McDonald.
Produced by Dr. Johann Roduit. Directed by Adam Wormald.

Learn more at https://www.seizinghopefilm.com/

Brain wellness, genomic justice, and Indigenous communities: Supporting wellness and self-determination

COMMUNITY CONVERSATIONS

Thursday, June 9, 2022
4:00 PM – 5:30 PM PDT
Please register here for the Zoom details: https://ccbwic.eventbrite.ca

Join us for a conversation about supporting Indigenous peoples’ wellness and self-determination in the areas of genomics and brain wellness. Hear perspectives from Krystal Tsosie, co-founder of the first U.S. Indigenous-led biobank, and from members of a working group that convened this past fall to explore the meanings of brain wellness in an Indigenous health context. Our conversation will span topics including research and data sovereignty, intersections between genomic ethics and neuroethics, and uplifting community voices and perspectives. Come ready to learn and consider how our positionalities, lived experiences and cultures can impact the way we think and reason about ethics.

Panelists:
Krystal Tsosie, MPH, MA
Navajo Nation
PhD candidate, Genomics and Health Disparities
Vanderbilt University

Bryce Mercredi
Métis Nation
Elder

Cornelia (Nel) Wieman, MD, MSc, FRCPC
Anishinaabe (Little Grand Rapids First Nation)
Deputy Chief Medical Officer, First Nations Health Authority

Malcolm King, PhD, FCAHS
Mississaugas of the Credit First Nation
Professor, Community Health and Epidemiology
College of Medicine, University of Saskatchewan

Sekani Dakelth
Nak’azdli Nation
Community member and activist

Moderated by:
Louise Harding, BSc

MSc Student, School of Population and Public Health
Neuroethics Canada, University of British Columbia

We are grateful to the UBC W. Maurice Young Centre for Applied Ethics for providing funding for this event.

What’s new in spinal cord repair?

COMMUNITY CONVERSATIONS

Tuesday, June 7, 2022
4:00 PM – 5:30 PM PDT
Please register here for the Zoom details: www.ccmtg.eventbrite.ca

Come join us for an interactive conversation with experts to discuss the latest in different approaches to spinal cord repair!

PANELISTS:
Andrea Townson, MD, FRCPC
Medical Co-Chair, Regional Rehab Program, VCHA
Clinical Professor
Department of Medicine, University of British Columbia

John Madden, PhD, PEng
Director, Advanced Materials and Process Engineering Laboratory
Professor
Department of Electrical & Computer Engineering, University of British Columbia

Karim Fouad, PhD
Co-Director and Editor, Open Data Commons-SCI
Professor and Canada Research Chair for Spinal Cord Injury
Department of Physical Therapy and Neuroscience and Mental Health Institute, University of Alberta

MODERATED BY:
Judy Illes, CM, PhD
Director, Neuroethics Canada
Professor and Distinguished University Scholar, UBC Distinguished Professor in Neuroethics
Department of Medicine, University of British Columbia

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.

Ethics in Policy, Business & Law

Join us for Ethics in Policy, Business & Law, the third 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.

March 30, 2022
12:00 PM – 1:15 PM PDT

Kindly RSVP to the event here: https://efubcpbl.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 Indigenous law and policy, to sustainable entrepreneurship and ethical business practices.

Worlds Apart – Ensuring Equitable Access to Advances in Brain Health

Join us for the 2022 Brain Awareness Week Annual Neuroethics Distinguished Lecture featuring Dr. Patrick McDonald!
 

Tuesday, March 15, 2022
4:00 PM – 5:30 PM PDT
For the Zoom details, kindly RSVP here: https://ncbaw2022.eventbrite.ca

Overview
Rapid technological advancements have led to the potential for significant improvements in brain health, expanding both the range of conditions treated and number of patients who can be helped. While these advancements hold great promise, they also come with considerable cost and a risk that they are not offered to all who may benefit from them, especially those in vulnerable populations. Advances in treating children with epilepsy and adults with movement disorders make equitable access to all ever more critical.

Patrick McDonald MD, MHSc, FRCSC
Dr. Patrick McDonald is a pediatric neurosurgeon at Winnipeg Children’s Hospital, Head of the Section of Neurosurgery at the University of Manitoba and a Faculty Member at Neuroethics Canada in Vancouver, BC. He is Chair of the Ethics Committee of the Royal College of Physicians and Surgeons of Canada and Past President of the Canadian Neurosurgical Society. For twenty years he has combined a practice caring for children with neurologic illness with an interest in the ethical issues that surround that care. Collaborating with Professor Judy Illes, Director of Neuroethics Canada, he studies the neuroethical issues inherent in the adoption of novel neurotechnologies to treat brain illness.

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.

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].