Objectives • To learn about the impact and meaningfulness of storytelling approaches for patient engagement and decolonizing research • To understand the importance of using Indigenous research methods, such as storytelling, in health research • To critically reflect on engagement approaches for respectful research in Indigenous health research

1. Engaging with First Nations women with
experiences of breast cancer:
A Debwewin journey through digital storytelling.
Presenter: Kendra Rieger
Team members: Horton, M., Copenace, S., Bennett., M., Buss, M., Chudyk, A., Cook, L.,
Hack, T., Hornan, B., Horrill, T., Linton, J., Martin, D., McPherson, K., Murray, K., Rattray,
J., Sinclair, R., Slavutskiy, O., Stewart, R. & Schultz, A.

2. We have no potential conflicts of interest

3. Workshop Objectives
•To learn about the impact and meaningfulness of
storytelling approaches for patient engagement and
decolonizing research
•To understand the importance of using Indigenous
research methods, such as storytelling, in health
research
•To critically reflect on engagement approaches for
respectful research in Indigenous health research

4. Overview of Presentation
• Background of project
• Study phase one
• Digital storytelling workshop
• Discussion
• Study phase two
• Participatory scoping review of
storytelling
• Questions and answers

6. Study Plans:
1) Initial engagement with
First Nations women
within a digital
storytelling workshop
Phase 1

7. Two-eyed Seeing Perspective
Patient Engagement Framework

8. Objectives of Digital Storytelling Workshop
1) Explore First Nations women’s meanings and
conceptualizations of breast cancer.
2) Identify factors shaping shaping their healthcare
experiences to guide future research.
3) Identify research priorities and develop research
questions that matter most to First Nations women
who have experienced breast cancer.
4) Assess if the research design and proposed methods
(digital storytelling) are culturally safe
5) Explore the feasibility and acceptability of proposed
recruitment and study procedures.

9. Collaborative Strategies
and Methods
• A two-day digital storytelling
workshop
• Facilitated by Drs. Marlyn Bennett and
Kendra Rieger
• Three talking circles throughout the
workshop
• Patient partners: three First Nations
women
• Honorarium and travel costs

11. First Talking Circle Question Examples
1) What helped you to cope and heal throughout your breast cancer
experiences?
2) What was most challenging for you in dealing with your diagnosis
and treatment?
Second Talking Circle Question Examples
1) How do people talk about breast cancer in your community?
2) How do you know when a breast cancer screening program or a
breast cancer treatment program is/is NOT culturally safe?
Feedback to Inform Future Study
1) What are the most important questions to ask First
Nations women in a future study?
2) Please describe your thoughts on the digital
storytelling workshop.
3) How could this workshop could be improved?

13. • Prayers
• Offering tobacco
• Smudging
• Round room
• Food and Feast
• Location
• Gift of painted
rock
• Oral storytelling
• Writing narrative
• Creative process
• Technological skills
• Emotional
support in
sharing circles
• Creative process
• Expressive arts
Emotional Intellectual
Spiritual
Physical

14. A Debwewin
Journey
(Gehl, 2012)
The longest
journey…is
the one
between
your heart
and your
head

15. Reflections and
Lessons Learned
• Digital storytelling process was a
catalyst for deep connection and
sharing
• Many insights and authentic
engagement
• Healing, fun, learning, self-discovery,
re-experiencing, and empowerment
• Protocol, safety, place, and meals were
key
• Advice for future study

16. Study Plans:
1) Initial engagement with
First Nations women
within a digital
storytelling workshop
Phase 2

17. A Critical Participatory Scoping Review of
Storytelling in Indigenous Health Research
Rieger, K., Gazan, S., Bennett.,
M., Buss, M., Chudyk, A., Cook,
L., Copenace, S., Garson, C.,
Hack, T., Hornan, B., Horrill, T.,
Horton, M., Howard, S., Linton, J.,
Martin, D., McPherson, K.,
Phillips-Beck, W., Rattray, J.,
Sinclair, R., & Schultz, A.

18. To identify and examine how storytelling has been used as a method
in Indigenous health research on Turtle Island (North America),
Australia, and Aotearoa (New Zealand)

19. Review
Objectives
Relational dialogue to map and critique
storytelling in Indigenous health
research
Identify exemplary practices and
problematic omissions using the four R
framework
Propose a framework for the respectful
use of storytelling

20. Review
Methodology
• Western scoping review
methods with Indigenous
methodology1-4
• Critical, participatory
scoping review1-2
• Relational approach3-4

21. Relational
Gatherings
• Quarterly relational
gatherings at six key points
• Day long gatherings
involved Indigenous
ceremony, talking circles,
sharing meals, and group
discussions
• Collective interpretation
• Supported Indigenous and
Western worldviews
coming together in
conversations.

23. Review Findings
(N=178)
Philosophical Lens
• Indigenous or decolonizing lens
(31.5%)
• Indigenous lens and another
perspective (6.2%)
• Constructivist/constructionist
perspectives (6.7%)
• Other theories (21.3%)
• Did not state (34.3%)
Methodology
• Indigenous methodology (32.0%)
• Participatory action research (28.7%)
• Another qualitative methodology e.g.,
grounded theory (20.3%)
• Qualitative - no specific approach
(12.9%)
• Arts-based methodology (2.2%)
• Mixed-methods approach (2.2.%)
• Did not state (1.7%)

24. Research Focus of Included Studies Number of Studies
(N=178)
Indigenous perspectives of health and wellbeing 61
Social and structural roots of health and illness 59
Illness experiences of Indigenous peoples 39
Preserving Indigenous knowledge, culture or traditions 23
Developing services or educational initiatives 10
Storytelling methods in research and practice 7

25. Australia
Aotearoa
Turtle Island
Canada

26. Population Group Number of Studies (N=178)
First Nations Peoples 36
Métis People 3
Inuit 10
First Nations, Métis, and Inuit People 21
Canadian Indigenous Peoples (not specified) 12
Native American 26
Hawaiian 2
Alaskan Native 5
American Native American/Alaskan/ Hawaiian Native 2
Canadian and American Indigenous Peoples 4
Australian Aboriginal 24
Torres Strait Islanders 1
Australian Aboriginal/Torres Strait Islanders 14
Maori 18

28. Types of
Storytelling (ST)
(N=178)

29. Interpretive Findings
• Diverse storytelling approaches and adaptations within
Indigenous health research
• The positive impact of using a culturally appropriate method
• Centering Indigenous voices to disrupt dominant practices
and narratives
• Storytelling as culturally relevant and respectful research
method
• Cathartic, healing, and satisfying process for participants
• Reclaims, preserves, and illuminates stories
• Navigating ethical complexity and other challenges

31. The Four Rs for Storytelling in Indigenous Health Research:
Exemplary Practices from a Scoping Review
Elder Mabel Horton and Lillian Cook
drew on their traditional languages
to understand these concepts in a
richer way.
Revised four R framework5-6
Used these refined definitions to
evaluate our studies
Identified exemplary practices and
problematic omissions using the
four R framework
Respect
Responsibility
Relevance
Reciprocity

32. Framework for Storytelling Methods in Indigenous Health Research for Teams
Comprised of Indigenous Peoples and Settlers
The culmination of our project: considerations from
our review findings, four R analysis, and meeting
notes
A framework for the respectful use of storytelling in
health research
For teams of Indigenous and non-Indigenous people
Four components that align with the four directions
of the medicine wheel
Grouped considerations into four processes in
storytelling research: preparing, growing, harvesting,
and regenerating

33. Thank you
Kendra Rieger
Kendra.Rieger@twu.ca

34. References
Gehl, Lynn. “Debwewin Journey: A Methodology and Model of Knowing.” AlterNative : An International Journal of
Indigenous Peoples, vol. 8, no. 1, 2012, pp. 53–65, https://doi.org/10.1177/117718011200800105.
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Research Methodology, 8(1), 19–32. https://doi.org/10.1080/1364557032000119616
2 .Bassett, R., & McGibbon, E. (2013). A critical participatory and collaborative method for scoping the literature. Quality &
Quantity, 47(6), 3249–3259. https://doi.org/10.1007/s11135- 012-9715-2
3. Kovach, M. (2010). Indigenous methodologies: Characteristics, conversations, and contexts. University of Toronto Press,
Scholarly Publishing Division.
4 Archibald, J., Lee-Morgan, J., & De Santolo, J. (2019). Decolonizing research: Indigenous storywork as methodology. Zed
Books.
5 Rieger, K., Gazan, S., Bennett, M., Buss, M., Chudyk, A., Cook, L., et al.... Schultz, A. S. H. (2020). Elevating the uses of
storytelling approaches within indigenous health research: A critical and participatory scoping review protocol involving
Indigenous people and settlers. Systematic Reviews, 9, 257–259.
6 Kirkness, & Barnhardt, R. (1991). First Nations and higher education: The Four R’s — Respect, Relevance, Reciprocity,
Responsibility. Journal of American Indian Education, 30(3), 1–15.
7 Rieger, K.L., Horton, M., Copenace, S., Bennett., M., Buss, M., Chudyk, A., et al..... Schultz, A. (2023). Storytelling within
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