Healthcare Research
Healthcare Research
Cultural Ties to Life Promotion
Exploring Indigenous Life Promotion using the PaCER Methodology
Erik Morgan¹, Larissa Heron¹, Shaylene Scarrett¹, Chenoa Cardinal¹, Shayla Scott¹, Kienan Williams²
Background:
Life promotion is a strength-based effort aimed at reducing mental health stigma and suicide ideation. Among Indigenous population health studies, there is an over-representation of deficit-based research, highlighting the disparities of health outcomes such as suicide rates and measuring mental health comorbidities relative to the non-Indigenous population. In Canada, Indigenous research is strategically shifting to promote self-determination and build upon cultural strengths such as connection to land, community, and language.
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Description text goes hereLife promotion is a strength-based effort aimed at reducing mental health stigma and suicide ideation. Among Indigenous population health studies, there is an over-representation of deficit-based research, highlighting the disparities of health outcomes such as suicide rates and measuring mental health comorbidities relative to the non-Indigenous population. In Canada, Indigenous research is strategically shifting to promote self-determination and build upon cultural strengths such as connection to land, community, and language.
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DescripOur study aimed to gather Alberta Indigenous community members to discuss Life Promotion as it applies to Indigenous communities. Guided by PaCER methodology, the focus groups were adapted to fit a circle protocol as described below. Our methodology was grounded in relationship to ensure safety throughout the research process.tion text goes here
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Recruitment was conducted differently for each connection circle, due to administrative constraints described in the discussion and limitations section. However, both circles utilized a recruitment poster outlining team objectives and research associations.
SET connection circle recruitment:
Snowball sampling was the main recruitment method used in the initial, SET, sharing circle. Each participant that was contacted had either a personal or professional relationship to at least one of the researchers. In the recruitment process, each potential participant was sent a templated email, detailing the scope in which the sharing circle would be centered, as well as additional information on each researcher.COLLECT connection circle recruitment:
The main method of recruitment for the COLLECT sharing circle was through our mentor’s connection to the Indigenous Wellness Core (IWC) found within the Alberta Health Services (AHS) infrastructure. Within the group of participants recruited for the COLLECT sharing circle, each individual was associated with the IWC, but not every participant self-identified as being Indigenous. -
SET Connection Circle
Indigenous Life Promotion is multi-faceted, requiring differing needs for each unique Indigenous community. Within our strength-based research approach, participants delineated their experiences of what life promotion means to them, personally. The following three themes were identified in the SET sharing circle:
Disconnect due to colonial systems, community, and need for intergenerational connection
During the sharing circle, participants shared stories of the times where they could not connect to their Indigenous culture (i.e., ceremonies, practices) due to disadvantages they were subject to, which we correlated as the theme Disconnect due to colonial systems. Additionally, the theme Need for intergenerational connection came from participants’ insights on why the connection of Indigenous Elders and Indigenous Youth is fundamental to the well-being of Indigenous individuals and the livelihood of their communities.
Although three themes were found in the SET sharing circle data analysis, we decided to focus on theme 2. Community, as it is strength-based and enclosed multidisciplinary perspectives on life promotion, which we found as a recurring theme in the COLLECT sharing circle.
COLLECT Connection Circle
From our SET connection circle data, we initially focused on the theme of Intergenerational connection but redirected plans due to Research Ethics Board (REB) delay times (see limitations). However, upon presenting our initial themes to our COLLECT participants – their experiences shared, seemed to align more with the varied definitions of community in an evolving Indigenous community that changes with each generation.
As a result, our findings expanded upon the idea of community and how its definition goes beyond geographical location and familial ties. Participants disclosed similar experiences of their Indigenous cultural identity changing with each generation, such as a shift of building community through online platforms (due to COVID-19) for both the young and older generations.
How these findings can be interpreted
The findings from the SET and COLLECT sharing circles can be interpreted through a strengths-based lens that emphasizes the importance of community kinship for Indigenous Peoples, across different ages and genders. Community for Indigenous Peoples adapts and shifts with time. While the concept of community remains connected to First Nation, Métis, and Inuit communities, in terms of geography, it is also a concept that is developed without the limitations of these geographical locations. For instance, many of our participants expressed the notion that community, for them, can be found anywhere.
The Indigenous Health and Research Data Initiative
The Vision:
The goal of IHRDI is to provide an alternative to traditional storage of Indigenous data, creating a centralized storage system where all Indigenous data can be located and protected. Through shifting health and research data towards a centralized system, the quality in which health data can be collected can be significantly increased, furthermore impacting the ability to improve healthcare quality for Indigenous communities. Following the initial set up, we envision the platform as an interactive preservation effort for language, culture and Indigenious identity.
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The initial idea for the Indigenous Health and Research Data Initiative (IHRDI) was drafted in a conversation surrounding how Indigenous health data is being used to improve health care for Indigenous communities. In this conversation, a common theme that arose was a lack of proper infrastructure and communication to safely and properly store Indigenous data. The Alberta provincial health care system removed the Indigenous identifier on health care documentation, due to the collected data being misinterpreted and used maliciously against Indigenous communities. We believe a solution to this is to apply the OCAP principles at an institutional level. Through the basis of the OCAP principles, we believe that for the safety and security of Indigenous health and research data is to adjust the ownership, control, access and possession of Indigenous data away from colonial systems (i.e provincial and federal governments and other research institutions) and towards an Indigenous centered data service. Through the safe storage and moderation of Indigenous data, controlled by Indigenous communities, we believe that this is a critical step in the progression of Indigenous sovereignty and autonomy within the realm of digital health and cyberspace. By shifting the power dynamic away from colonial systems, we believe that the quality of healthcare and the corresponding research would benefit substantially, allowing additional measures for healthcare to be analyzed and observed within Indigenous communities. IHRDI will be rooted in community involvement; an initiative developed and implemented by Indigenous for Indigenous communities.
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The Vision for IHRDI is to help establish autonomy and sovereignty for Indigenous communities within the scope of digital health and research. At the forefront of this initiative is community involvement; we want to develop a means for Indigenous communities to have autonomy over their respective health and research data. A fundamental step in developing this autonomy is to shift where the data from health and research systems is being stored. Through the implementation of IHRDI, the data will be transferred away from colonial powers to a storage system that is run, operated, and moderated by Indigenous community. Having a centralized Indigenous data storage structure ensures responsible use of Indigenous data, but furthermore roots the data collection and analysis into a more collaborative space. The importance of this initiative is to ensure equitable representation of health care related data for all Canadians. As well as ensuring the safety of Indigenous data, IHRDI will create a platform in which Indigenous communities have greater capacity to perform more informed health care practices such as increased capacity for population health statistics and focal healthcare initiatives.