Telling the story of diabetes care in Aboriginal communities: A proposal for a community-engaged research project in Fort Smith, NWT

Regions: South Slave Region

Tags: traditional medicine, community engagement, diabetes

Principal Investigator: Dutton, Jessica N (5)
Licence Number: 15655
Organization: University of Toronto
Licensed Year(s): 2015 2014 2013
Issued: Mar 27, 2015

Objective(s): To develop a community-based, participatory program of research that will provide community members with diabetes to analyze their diabetes needs and improve diabetes treatment in Fort Smith and possible applications in other communities.

Project Description: The objectives of this research project are:
1. to explore the third space that exists between western medical diabetes treatments and traditional Aboriginal healing to address what appears to be a false dichotomy presented in the literature on diabetes treatment in Aboriginal communities,
2. to develop a community-based, participatory program of research that will provide opportunities for community members with diabetes to engage in storytelling and to jointly analyze their diabetes needs, and
3. to explore how this information can be used to improve diabetes treatment in Fort Smith and possible applications in other communities.

This project consists of two separate phases of data collection. The first is a set of three group storytelling sessions in which one storyteller shares a story with a group of participants, who will then assist the research team in analyzing the story. This phase will be crucial to developing a locally-informed method for analyzing data in phase two. The second phase consists of 20 individual storytelling sessions followed by a brief interview.

Community advisors will select the storytellers from the participants since local considerations will be important in this decision – people who are invited to tell stories to an audience are generally elders, or people who are acknowledged to have expertise in a certain area. Community advisors will be able to recommend a person who would be comfortable speaking in this forum. An audience of the researcher, plus 5-6 participants and/or community advisors will be present to listen to the story and analyze the story.

Three group storytelling sessions will be held, each lasting one full day. The analysis procedures will be slightly adapted from Jackson’s (2008) method for analyzing qualitative data in a participatory group. Storytellers will be asked to speak for one hour. Participants will then be asked to make note of phrases or points that they feel are most important or that resonate with them. These points will be put on a white board and the group will arrange them into common groups of data. The group will come up with titles for each grouping that reflects the commonality they share. This will likely take 2-3 hours.

After a break, the group will discuss the groupings in the context of the research questions and draw connections. These connections can be made using diagrams and pictures that will be drawn out on a second whiteboard. This whiteboard will be used to categorize ideas into themes and build a theory or framework for understanding the story and its connection to the research question. Once the group has drawn out the connections and developed a theory, the group will use a third whiteboard to reconstruct the storyline in order to ground the data in the storytelling. This will also be an opportunity to re-check the data and see if anything has been missed.

The data from the whiteboards will be recorded via picture and copied by the researcher on her laptop. From this data, the researcher will write a final report of findings that will be reviewed by the participants for accuracy and a final check-over. Once this is completed, the researcher will use these findings in her reports and thesis chapters.

Twenty individuals will be recruited for individual interview-style storytelling sessions. The researcher (and possibly one community advisor) will be an audience for the storyteller’s story that will last approximately 1 hour. Stories will be followed up with interview questions (30-60 mins) to ensure that the main research questions have been covered. These sessions will be tape recorded and transcribed by the researcher.

Analysis of the individual stories will be guided by the themes and patterns drawn out in Phase One. The researcher will categorize the transcribed data according to the themes that have been selected and apply any theories or frameworks the research team has identified. A final report will be drafted and reviewed by the research team.

Participants to be recruited are Aboriginal people with diabetes who are over the age of 18 and living in Fort Smith for at least part of the year.

In the course of the interviews and storytelling sessions, personally identifiable information may be collected. At the time of transcription, data will be stripped of all personal identifiers. This information will be available to the researcher and to the research team, who will have completed a half-day workshop on research ethics and confidentiality prior to collecting the data.

Community members have the opportunity to be involved as community advisors (there are currently five community members advising on this project on a volunteer basis) who provide guidance periodically throughout the project.

Knowledge will be disseminated widely in the community to ensure that relevant local organizations will have the opportunity to make use of the findings, possibly resulting in benefits for community members and program users.

A plain language summary of the findings of the research will be provided to the Fort Smith Health and Social Services Authority. Plain language presentations of the findings will be made at a community gathering (either at an event that is already happening, or at an event arranged by the researcher). Presentation will include a public storytelling session.

The fieldwork for this study will be conducted from March 30, 2015 to December 31, 2015.