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

Regions: South Slave Region

Tags: participatory research, health promotion, diabetes, healing

Principal Investigator: Dutton, Jessica N (6)
Licence Number: 15364
Organization: University of Toronto
Licenced Year(s): 2015 2014 2013
Issued: Nov 15, 2013

Objective(s): To explore the third space that exists between western medical diabetes treatments and traditional Aboriginal healing to resolve the false dichotomy presented in the literature on diabetes treatment in Aboriginal communities; 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, to explore how this information can be used to improve diabetes treatment in Fort Smith and possible applications in other communities.

Project Description: Research Objectives:
1. To explore the third space that exists between western medical diabetes treatments and traditional Aboriginal healing to resolve the 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.
3. To explore how this information can be used to improve diabetes treatment in Fort Smith and possible applications in other communities.

This project will be designed and carried out under the supervision of a community team. The team will be comprised of interested community members who are willing to participate in monthly meetings, provide guidance and represent community interests.

To answer the research questions, the principal researcher will need to collect stories about experiences of Aboriginal people who have diabetes with diabetes programs. Individual stories will be collected from one-on-one sessions with storytellers. There is no pre-determined number of stories to be collected - the principal researcher will attempt to collect as many stories as possible, as long as the tellers are Aboriginal people with diabetes who live in Fort Smith. Stories will be tape recorded (if participants provide permission) and tellers will be asked to speak for 1-1.5 hours, although this is just a guideline and the listener will be open to longer or shorter stories. Follow up interviews will be conducted to answer specific questions about types of care participants have received, what they like and do not like about diabetes programs and what they would like to see.

There will also be 3-5 group storytelling sessions in which one teller will share their story and the group (comprised of Aboriginal people with diabetes) will reflect on the story. Group tellers will be selected on advice of the community team - preferably experienced storytellers who are comfortable sharing in this format.

Stories will be analyzed between the researcher, participants, and community team members to draw out the main themes and determine diabetes programming needs.

One of the reasons Fort Smith was selected as a site for this project was the existing community support for diabetes research. This research project aims to contribute usable, practical information about diabetes programming that is specifically tailored to this community. Possible indirect benefits of the project include: increased awareness of diabetes in the community, increased confidence that diabetes is a priority, increased sense of ownership amongst project participants, improved diabetes health behaviors (as a result of the Hawthorne effect – that is, people may change their behaviors in a positive way when they know those behaviors are being monitored.)

The dissemination of results is critically important to ensuring the benefits of research are returned to the community. Dissemination of research results is important for knowledge sharing, learning, future program-planning, social action, and acknowledging the contributions and expertise of the participants.

The dissemination activities will be decided in consultation with the community team and relevant audiences. Some examples of audiences targeted for dissemination are health centre staff, diabetes programmers, community members (with diabetes, without diabetes, caregivers), and community leaders. Each of these groups would have different interest in the project and may be most effectively targeted using different dissemination activities.

It is important that the method of dissemination be appropriate to the audience. There are many examples of alternative dissemination strategies that range from information luncheons to performance art to poetry. Consultations will take place throughout the research process to determine the most appropriate dissemination methods for each group and who should participate. The community team and the researcher will also negotiate permission for the researcher to publish findings and present at conferences.

The fieldwork for this study will be conducted from November 15, 2013 to December 31, 2013.