Grounding Indigenous Collaborative Processes in Research Partnerships to Maximize Outcomes

FormalPara Key Points

• The Alberta First Nations Cancer Strategy and Practice Change Implementation Initiative (AFNCI) was developed to advance cancer care priorities and actions of First Nations, Inuit, and Metis peoples (FNIM) of Canada.

• AFNCI was developed through First Nations cultural social engagement methods that draw on phenomenological approaches to research.

• AFNCI was developed with guidance from Knowledge Holders/Practitioners.

• AFNCI research was developed using the OCAP^® principles of ownership, control, access, and possession to assert Indigenous ownership over data and data collection.

The Alberta First Nations Cancer Strategy and Practice Change Implementation Initiative (AFNCI) is a five-year, multi-jurisdictional project developed to advance actions on the cancer care priorities of First Nations, Inuit, and Metis peoples (FNIM) of Canada. The project is supported by the Canadian Partnership Against Cancer (CPAC) and developed through collaboration with Alberta First Nations Information Governance Centre (AFNIGC), Alberta Health Services (AHS), Knowledge Holders/Practitioners, and oncology champions. To develop the AFNCI, the partners exercised First Nations cultural social engagement methods and created a collaborative framework to improve cancer pathways for First Nations cancer patients and their families. Project development included cultural processes with well-positioned, highly respected ceremonial practitioners to elaborate on how cultural and traditional practices are needed to support and benefit healing in First Nations individuals and families experiencing cancer. Through these processes, improved knowledge and awareness of Alberta First Nations families and communities have been advanced, and a culture of authentic relationships established and sustained between Knowledge Holders/Practitioners, oncology champions, and research partners.

AFNCI Partnership and Engagement Structure

The AFNCI project places emphasis on its partners, who bring their distinct strengths and visions to focus on culturally safe cancer care pathways and care. It was developed through a First Nations research methodological process. A critical juncture prior to entering the research process was to seek guidance through ceremony. Project co-leads (AFNIGC Executive Director Lea Bill, and AHS—Cancer Prevention and Screening Innovations, Indigenous Community Scientist Dr Angeline Letendre) positioned Knowledge Holders/Practitioners in a cultural leadership role, including two highly respected oncology champions from AHS. The AFNCI partnership and engagement structure (Fig. 69.1) illustrates the extent of collaboration.

Fig. 69.1

AFNCI partnership and engagement structure

The AFNIGC has emerged as a leader in Indigenous-led cancer research in Canada. In its oskâpêw (helper) role for AFNCI, the AFNIGC is mandated by Alberta First Nation leadership to oversee research and ensure researchers are informed about the principles of OCAP^® [1]. These principles of ownership, control, access, and possession assert that First Nations peoples have control over data collection processes and that they own and control how collected information can be used. AFNIGC supported the AFNCI partners to develop authentic, Indigenous, informed, mixed-methods processes and chart a path toward reliable data.

The research process used for AFNCI recognizes parallel approaches where both quantitative and qualitative methods complement each other. Data gathering is a spiritual process. The sacredness of data is acknowledged in a way that is responsive to the land, people, and ancestors. AFNIGC has emerged as a leader in laying the groundwork for innovative Indigenous data governance and Indigenous-led cancer research, designing cultural data collection, and exploring and testing Indigenous research data management methodologies.

Co-lead organization, the Alberta Cancer Prevention Legacy Fund of AHS (now known as the Cancer Prevention and Screening Innovations (CPSI) AHS) supported and led strategy development in cancer prevention and screening with FNIM communities in Alberta, Canada. Lead scientist of the Community Research Stream, Dr Angeline Letendre, provided Western research oversight and guidance. AHS oncology champions agreed to be project co-leads and support further collaborative engagement with Cancer Control Alberta leadership—including Dr Gregg Nelson (Tom Baker Cancer Centre, Calgary) and Dr Charles Butts (Cross Cancer Institute, Edmonton). Their positioning as champions helped to integrate research findings into strategy, services, and program delivery with a special focus on FNIM communities.

The central unifying force of the AFNCI collaboration was the contributions of Knowledge Holders/Practitioners from diverse Alberta First Nations language groups. Fluent speakers of their languages, the Knowledge Holders/Practitioners shared their knowledge and helped to shape action on pressing issues and challenges facing First Nations cancer patients. This highly specialized team of knowledge holders is recognized as ceremonial and cultural leaders within their respective communities.

All project participants acknowledged that these partners need to be involved to improve First Nations cancer pathways and care. In the true spirit of collaboration, the high-level teams engaged in dialogue that relied upon First Nations collaborative processes to identify and articulate required practice changes to improve cancer outcomes and experiences.

A First Nations Research Methodology and Cultural Approach

The AFNCI research process relied on guidance from First Nation Knowledge Holders/Practitioners. Cultural transference given by the Knowledge Holders/Practitioners was transformational and continues to inform AFNCI with an understanding of the significance of ancestral knowledge to improve cancer pathways.

AFNCI outcomes were achieved by working collaboratively from a place of trust and true partnership. Narratives and stories shared through group dialogues provided a strong culturally grounded foundation that utilized Indigenous knowledge concepts—such as Relationships, Family as Medicine, Culture as Prevention, and Use of Indigenous Languages. Key actions arising from these narratives were intended to serve Alberta First Nations peoples and preserve ancestral healing knowledge systems by supporting oral traditions and strengthening communities [2]. These narratives formed the foundational cultural collaborative framework for AFNCI, to build and establish trusting relationships where critical conversations on difficult and sensitive topics informed improvements needed across the cancer pathway. The process focused on cultural transference through oral traditions, where spoken word, narrative, and stories transmit important life histories and teachings for concepts to exist within oncology settings. Each Knowledge Holder/Practitioner accepted the protocol signifying the commencement of the sacred fire.

What emerged were research processes and methods specific to the cultures of participating Knowledge Holders/Practitioners and couched within First Nations knowledge systems. The OCAP^® principles were utilized to develop Oncology Care Provider Education and Training.

AFNCI work, activities, and outcomes reflect a direct application and use of First Nations cultural collaborative processes, using a natural methodology accompanied by time-honored collaborative processes and supported by ceremonial practices. This cultural approach elicited specific knowledge, wisdom, and ways of doing for practice change. AFNCI’s approach is, thereby, informed by cultural knowledge and processes.

Phenomenology: A Cultural Premise

First Nations verb-based languages provide the means to capture authentic, culturally based collaborative processes. AFNCI respected this by applying an Indigenous science methodology, underpinned by phenomenology, which valued the lived experience and cultural practices of each Knowledge Holder/Practitioner as expressed by their language.

Each engagement session created a conceptual space where storied experiences provided invaluable insight and contributed to the critical dialogic process. Speakers took turns to layer critical reflection; analyze; and communicate concepts, attitudes, and lived practice—all for the purpose of creating a shared perspective on how to improve cancer outcomes. At its root, this methodology is an inquiry of the self—of how one has been affected or impacted by the environment—in this case, the cancer care space.

Phenomenology moves narratives. It shifts language to story, becoming a vessel of knowledge as it relates to information obtained from the whole being (mind, body, feeling, and spirit) for positioning a social response. This methodology correlates to the oral transfer of knowledge, as Indigenous knowledge is housed within culture and Indigenous language. Language is a central methodological tool to construct and guide the examination of the actions required to develop understanding among the group. Knowledge Holders/Practitioners each acknowledged that they were responding from within a living process or methodology.

The phenomenological methodology connected the multitude of lived experiences and work around the sacred fire—the ethical space [3] or meeting place. The use of Cree terminology—for instance “Asapâp” (thread, the action of connecting)—offered a community approach that was understood by the group to socially organize around an issue or challenge. Asapâp was seen as a phenomenological action where symbolically and metaphorically the thread, as the connective tool of social functions, is required to support change. The thread pulls together a value system that houses built-in best practices existing within the language. Each narrative, teaching, or understanding presented by the Knowledge Holders/Practitioners represents a larger story of values to support a shift in mindset. Thread is also analogous to an implementation process, where all components integrate and merge the knowledge gathered. Asapâp helped to frame knowledgeable decisions to build the inclusive and compassionate foundation required to support cultural pathways throughout the cancer journey. Each person involved played a necessary role, as a strand of living thread creating change.

Engagement as a Strategy

Successful engagement requires strong project management and coordination, with a clear purpose, objectives, specified processes, and intended outcomes. As the primary strategy to underlay and support project outcomes, engagement for AFNCI led to multiple strategies, some occurring simultaneously to correspond with meeting project objectives and deliverables. Community-based and culturally supported engagement activities included:

• Offering protocol to Knowledge Holders, for opening and closing meetings with prayer.

• Securing commitments to creating safe spaces for trusting relationships to emerge among project participants.

• Engagement processes focused on facilitating the exchange of experiential stories linked to cancer.

• Applying First Nations languages and narratives as a basis to improve practice and communication between healthcare providers and First Nations patients and families.

• Pairing Knowledge Holders/Practitioners and oncology champions to envision a foundation for practice change and support culturally safe pathways for First Nations patients and families.

The multiple engagements undertaken to develop understandings during the AFNCI collaborative partnership process are illustrated in Fig. 69.2.

Fig. 69.2

AFNCI community engagement

Collaborative Partnership Framework

Collaboration is essential for Indigenous communities to envision pathways that mirror their worldviews. For example, the philosophy and belief of First Nations around kinship between people, animals, land, and the spirit world supported an authentic collaborative partnership and became a necessary conceptual element. While this is a simplistic articulation of how relationality is fundamental to Indigenous ways of being and doing, it can be used to understand the sense of “naturalness” and “familiarity” that many Indigenous peoples display toward one another. From within this space, the AFNCI Collaborative Partnership Framework was realized, as captured in Fig. 69.3. The Framework starts at the center and moves outward.

Fig. 69.3

AFNCI Collaborative Partnership Framework

Essential to the Framework is the placement and rightful role of First Nations Knowledge Holders/Practitioners, who provide guidance and directives regarding First Nations communities. These individuals possess knowledge of their histories and the trauma experienced by communities, along with the consequences of these histories on individuals, families, and communities. In addition, Knowledge Holders/Practitioners’ understanding of worldviews, practices, protocols, and health and healing practices are critical to underpinning First Nations–driven solutions and were identified as a key to the Collaborative Partnership Framework.

The Framework is a strategic vehicle to implement system and practice change, and a mechanism that supports sustainability. Collaborative partnerships, with the capability to establish and maintain authentic relationships based in trust and the capability to include dialogue, need to be recognized as an essential and powerful tool for supporting systems and practice change.

Knowledge Holder/Practitioner Roles and Guidance

Each Knowledge Holder/Practitioner has observed, participated in, and led many cultural collaborative processes. Being reared within these social cohesive processes and assisted in many kinds of ancestral cultural practices, they are at ease within this collective and collaborative approach. Furthermore, they were keenly aware of their personal responsibility and roles within cultural knowledge processes.

Once the sacred fire was awakened for AFNCI, a legacy of living wisdom was placed in the center to support the concept of the whole health and wellbeing of the family and community. Truth and honesty were essential, as they identified the gaps created by intolerance and racism within healthcare settings. Knowledge Holders/Practitioners were adept at speaking their truth, through forthright stories that conveyed authentic knowledge. They committed wholeheartedly to the project, selflessly giving time and energy to the circle in their capacity as key partners with a focus on improving cancer pathways and outcomes.

The role of Knowledge Holders/Practitioners involved holding space and providing the cultural linguistic knowledge for analyzing and generating meaning from participants’ narratives. They provided guidance with selecting the best approaches for participant involvement, such as directing the team to involve youth in AFNCI activities to support inter-generational knowledge transfer and including family members who had lost members from cancer. As key cultural leaders, ceremonialists, and advisors, they identified themes and subject matter for an oncology cultural safety curriculum to be piloted through an AFNIGC learning management system. Additionally, they contributed to creating the messaging for cancer prevention and screening along with teachings about traditional health and healing practices.

Knowledge Mobilization

AFNCI project leads, as Indigenous researchers, embarked on the project with prior knowledge and understanding of cultural collaborative processes. They recognized the process as a living process embedded within First Nations customs and oral traditions. Knowledge Holders/Practitioners and other project participants each contributed to knowledge transfer and exchange (knowledge mobilization) by sharing their experiences and identifying priority areas requiring change.

As a vehicle for knowledge transfer and exchange, the circle model was used during story and narrative sharing to support collaborative partner dialogue sessions. Furthermore, culturally based methods of sharing knowledge were applied to create an environment where practice change implementation could be expressed, defined, and elaborated upon within circle technology (roundtable talks) dialogue sessions, team meetings, engagement sessions, and learning events. A systematic approach of moving from one participant to the next provided an opportunity for participants to elaborate on their contributions and build upon the circles’ understanding.

Cultural knowledge transference (the sharing of Indigenous and cultural knowledge) is a collective activity. Together the Knowledge Holders/Practitioners and all participants added layer upon layer, as their oral histories created a rich living knowledge base from which to implement and align practice changes and address issues around cancer care. Trust and kinship naturally formed among the group, as the Knowledge Holders/Practitioners brought a strong family approach to the project and created a sense of social responsibility within the circle. Each Knowledge Holder/Practitioner spoke of the gaps existing within oncology care and provided a platform for impactful knowledge exchange.

Conclusion

AFNCI was an iteratively developed collaborative partnership project, created with an existing core team of Knowledge Holders/Practitioners from the different Treaty regions across Alberta, all with direct lived experience with cancer. The AFNCI project demonstrates applied phenomenological research as a powerful approach to demonstrate collaborative decision-making and learning processes. It influenced “group mindedness” to collaboratively organize around an issue in a dialogic cultural way, embedded within collective cultural collaborative processes. A kinship system was formed between the Knowledge Holders/Practitioners and the research team leads, forming lifelong bonds of knowledge exchange and mutual trust.

The high-level discussions among the Knowledge Holders/Practitioners are customary ways of “coming to know” and “coming to be as a collective and community.” Any issue affecting the community is attended to—through the engagement of mind, body, and spirit by the individual. It is then taken into the wider circle of influence, such as the peer group, community, and other circles. These collaborative processes, embedded within the ethos of community, provide opportunities to heal while supporting purposeful action with outcomes that meet needs and fill gaps. Much interest has been garnered throughout the provincial cancer care agencies for the oncology education and education training developed as a main output of the AFNCI work.