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].

Rights and meanings: Advanced technologies for disorders of the brain

This blog post follows on a three minute presentation at the 2020 International Neuroethics Society Meeting that won the Springer Book Prize for “Best Overall Contribution: Clinical Neuroethics”.

I acknowledge that Neuroethics Canada is situated on the traditional, ancestral, unceded territory of the Musqueam people, and express my thanks as a settler to live, work and study on this territory.

Introduction

What are the meanings, values, priorities, and responsibilities surrounding equitable and meaningful access to advanced neurotechnologies for diverse populations?

Advanced neurotechnologies are applied in functional neurosurgery: an important class of brain surgery that aims to ameliorate severe neurologic and mental health conditions that do not respond to pharmacological and other therapies. The interventions are broadly classified as neuromodulation, ablation, and resection, and one well known example is deep brain stimulation (see this blog post by Hrincu et al. for applications in pediatric epilepsy). However, alongside rapid advancements in the field of advanced neurotechnologies, there have been reports of disparate access in both Canada and the USA. Five studies have reported racial disparities for African-American populations in the USA (1,2,3,4,5). Reduced access has also been reported for certain provinces and regions in Canada (6,7,8).

Map
Map of the major functional neurosurgery centres in Canada as of January 2021, demonstrating the unique challenge of serving geographically dispersed populations. Image created by the author.

Despite the diversity of populations living in both countries and the global availability of these interventions, there has been limited exploration of how various cultural groups may differentially conceptualize and relate to the use of functional neurosurgical interventions.

Consultations

We consulted with 29 key informants with diverse expertise in Indigenous health and Western medicine about neurotechnologies for diverse geographic and cultural communities (Harding et al., manuscript in preparation). Our analysis of the interviews is revealing that differences in the meanings and perspectives held by patients and physicians about interventions to the brain are significant barriers to receptivity and access. Innovations in telehealth, education, and low maintenance neurotechnologies are significant facilitators to access. Results from a survey we administered at the end of the interviews with medical professionals show a striking contrast between ratings of the imperative of access for people living in rural and remote areas and the realities of such access to neuromodulatory and ablative neurotechnologies across different medical conditions. Median ratings for imperative of access to neuromodulation, for example, were highest for movement disorders (95% rating high imperative), epilepsy (63%) and pain (57%). Higher imperative ratings were strongly associated with ratings of higher likelihood of access.

Scoping Review

We also conducted a scoping review of the academic literature about global Indigenous groups’ perspectives about the brain and mind (Harding, Marra, et al., manuscript in preparation). We have found that this body of literature has a significant focus on perspectives about neurological and mental health conditions, with a smaller body of work reporting philosophical conceptualizations of the mind and brain. Holism is a common theme: many studies report perspectives of illnesses as caused by a combination of spiritual, psychological and biological factors.

flow
Simplified flow diagram of the articles screened and subsequently included in the scoping review. Image created by the author.

Working Groups

For our next step, we will bring together expertise in Indigenous health and neuroethics for a series of sequential workshops to explore meanings and values for brain wellness. While the idea of hosting these working sessions by videoconference would have been previously inconceivable, in this era of COVID-19 Indigenous communities have developed innovative approaches to uphold cultural protocols in virtual spaces (Harding et al., 2020). Applying a transformative framework, we will collaborate with Indigenous scholars, knowledge holders, and healthcare providers through consensus-seeking and collaborative writings to co-create and deliver strategic recommendations for community-based and systems-based prioritization of neurotechnology for brain health, education, and consultation.

Conclusion

Through the efforts of this ongoing, spiral, community-engaged research project, we will provide recommendations and strategic partnerships for the inclusion of ethical, practical, and cultural domains in the development and delivery of advanced neurotechnologies to mitigate disparities and realize the goal of improving brain wellness.

The work discussed in this article is being conducted at Neuroethics Canada under the leadership of Dr. Judy Illes. I thank collaborators Dr. Christopher R. Honey, Dr. Patrick J. McDonald, Dr. Malcolm King, Caterina Marra, Jacob McFarlane and Vyshu Manohara, as well as other members of the Neuroethics Canada team. This work is supported by the National Institutes of Health (J. Iles; Grant number [RF1#MH117805 01]), the North Growth Foundation (J. Iles), and the Canadian Brain Research Strategy (J. Iles).

Louise Harding is a MSc student in Population and Public Health at the University of British Columbia and a Research Assistant at Neuroethics Canada. She holds a BSc in Psychology with a minor in First Nations and Indigenous Studies from UBC.

Biopic