Engaging indigenous patient partners in patient-oriented research: lessons from a one-year initiative.

BACKGROUND: Patient-oriented research (POR) is a specific application of participatory research that promotes active patient engagement in health research. There is a growing concern that people involved in POR do not reflect the diversity of the population such research aims to serve, but are rather those more 'easily' engaged with institutions, organizations and society. Indigenous peoples are among such groups generally underrepresented in POR. The "Indigenous patient partners platform project" was a small-scale initiative aimed to address the issue of the underrepresentation of Indigenous people in patient-oriented research by recruiting, orienting and supporting Indigenous patient partners in Québec (Canada). This article reports on the findings of an evaluation conducted at the end of the project to garner lessons and identify strategies for engaging Indigenous patient partners in patient-oriented research. METHODS: The evaluation of this initiative used a case study design hinging on documentary analysis and committee member interviews. Project documents (n = 29) included agendas and meeting minutes, support documents from the orientation workshop and workshop evaluations, and tools the committee developed as part of the project. Interview participants (n = 6) were patients and organizational partners. Thematic analysis was performed by two members of the research team. Patient partners actively contributed to validating the interpretation of result and knowledge translation. RESULTS: Results point to four key components of Indigenous patient partner engagement in POR: initiation of partnership, interest development, capacity building and involvement in research. Specific lessons emphasize the importance of community connections in recruiting, sustaining and motivating patient partners, the need to be flexible in the engagement process, and the importance of consistently valuing patient partner contributions and involvement. CONCLUSIONS: There is a need to engage Indigenous patient partners in POR to ensure that healthcare practices, policies and research take their particular needs, stories and culture into account. While results of this evaluation are generally consistent with the existing literature on patient engagement, they offer additional insight into how to effectively engage Indigenous patient partners in research, which might also be relevant to the involvement of other marginalized populations who have been historically and systemically disempowered.

Patients' perspectives on how to improve diabetes care and self-management: qualitative study.

OBJECTIVE: People living with diabetes need and deserve high-quality, individualised care. However, providing such care remains a challenge in many countries, including Canada. Patients' expertise, if acknowledged and adequately translated, could help foster patient-centred care. This study aimed to describe Expert Patients' knowledge, wisdom and advice to others with diabetes and to health professionals to improve diabetes self-management and care. DESIGN AND METHODS: We recruited a convenience sample of 21 men and women. Participants were people of diverse backgrounds who are Patient Partners in a national research network (hereafter Expert Patients). We interviewed and video-recorded their knowledge, wisdom and advice for health professionals and for others with diabetes. Three researchers independently analysed videos using inductive framework analysis, identifying themes through discussion and consensus. Expert Patients were involved in all aspects of study design, conduct, analysis and knowledge translation. RESULTS: Acknowledging and accepting the reality of diabetes, receiving support from family and care teams and not letting diabetes control one's life are essential to live well with diabetes. To improve diabetes care, health professionals should understand and acknowledge the impact of diabetes on patients and their families, and communicate with patients openly, respectfully, with empathy and cultural competency. CONCLUSION: Expert Patients pointed to a number of areas of improvement in diabetes care that may be actionable individually by patients or health professionals, and also collectively through intergroup collaboration. Improving the quality of care in diabetes is crucial for improving health outcomes for people with diabetes.

Understanding community-based participatory research through a social movement framework: a case study of the Kahnawake Schools Diabetes Prevention Project.

BACKGROUND: A longstanding challenge of community-based participatory research (CBPR) has been to anchor evaluation and practice in a relevant theoretical framework of community change, which articulates specific and concrete evaluative benchmarks. Social movement theories provide a broad range of theoretical tools to understand and facilitate social change processes, such as those involved in CBPR. Social movement theories have the potential to provide a coherent representation of how mobilization and collective action is gradually developed and leads to systemic change in the context of CBPR. The current study builds on a social movement perspective to assess the processes and intermediate outcomes of a longstanding health promotion CBPR project with an Indigenous community, the Kahnawake Schools Diabetes Prevention Project (KDSPP). METHODS: This research uses a case study design layered on a movement-building evaluation framework, which allows progress to be tracked over time. Data collection strategies included document (scientific and organizational) review (n = 51) and talking circles with four important community stakeholder groups (n = 24). RESULTS: Findings provide an innovative and chronological perspective of the evolution of KSDPP as seen through a social movement lens, and identify intermediate outcomes associated with different dimensions of movement building achieved by the project over time (mobilization, leadership, vision and frames, alliance and partnerships, as well as advocacy and action strategies). It also points to areas of improvement for KSDPP in building its potential for action. CONCLUSION: While this study's results are directly relevant and applicable to the local context of KSDPP, they also highlight useful lessons and conclusions for the planning and evaluation of other long-standing and sustainable CBPR initiatives. The conceptual framework provides meaningful benchmarks to track evidence of progress in the context of CBPR. Findings from the study offer new ways of thinking about the evaluation of CBPR projects and their progress by drawing on frameworks that guide other forms of collective action.

Evaluating an Indigenous health curriculum for diabetes prevention: engaging the community through talking circles and knowledge translation of results.

Background: Kahnawà:ke is a Kanien'kehá:ka (Mohawk) community in Quebec, Canada. In 1997, the community-controlled Kateri Memorial Hospital Centre in partnership with the Kahnawake Education Center, and the Kahnawake Schools Diabetes Prevention Project (KSDPP) developed an elementary school diabetes prevention health education program, aimed to increase knowledge of Type 2 diabetes, healthy eating and active lifestyles. Long-term goals for KSDPP community and school interventions are to decrease obesity and diabetes. Objectives: To evaluate the Kateri Memorial Hospital Centre Health Education Program for Diabetes Prevention (HEP) and use key principles of knowledge translation to promote understanding of results to upgrade HEP content and improve delivery. Methods: A KSDPP community-based participatory research team used mixed methods for evaluation, combining a cross-sectional survey for 23 teachers with interviews of two elementary school principals and three culturally appropriate Indigenous talking circles with HEP authors, teachers and parents. Questionnaire results were presented as descriptive statistics. The thematic textual analysis identified emerging themes from talking circles and interviews. Results: Facilitators of HEP delivery were an acknowledgement of its importance; appreciation of prepared lesson plans for teachers; and KSDPP's strong community presence. Barriers included reduced administrative support and instructional time due to competing academic demands; the need for increased Kanien'kehá:ka cultural content; and outdated resource materials. Recommendations included increasing teacher training, Kanien'kehá:ka cultural content and administrative support. Conclusion: Community researchers undertook detailed knowledge translation activities of facilitators, barriers and recommendations with hospital and education centre administrators and Kahnawà:ke community to maximize uptake of findings before external dissemination of results.

Enhancing Indigenous Health Promotion Research Through Two-Eyed Seeing: A Hermeneutic Relational Process.

The intention of this article is to demonstrate how Indigenous and allied health promotion researchers learned to work together through a process of Two-Eyed Seeing. This process was first introduced as a philosophical hermeneutic research project on diabetes prevention within an Indigenous community in Quebec Canada. We, as a research team, became aware that hermeneutics and the principles of Haudenosaunee decision making were characteristic of Two-Eyed Seeing. This article describes our experiences while working with each other. Our learning from these interactions emphasized the relational aspects needed to ensure that we became a highly functional research team while working together and becoming Two-Eyed Seeing partners.

Reclaiming food security in the Mohawk community of Kahnawà:ke through Haudenosaunee responsibilities.

Indigenous Peoples are reclaiming their food security, nutrition, and well-being by revitalizing food systems, livelihoods, knowledge-systems, and governance. Our food security research is guided by sustainable self-determination that focuses on restoring Indigenous cultural responsibilities and relationships to land, each other, and the natural world (Corntassel, 2008). Our Kanien'kehá:ka (Mohawk) research team from Kahnawà:ke, in Quebec, Canada, examines food insecurity experiences in our community to explore ways of upholding our Haudenosaunee responsibilities and enhancing local food security. We collaboratively designed the study and interviewed Kahnawakehró:non (people from the Kahnawake community) with traditional knowledge, extensive community experience, and interests in food and culture. Interviews were audio-recorded, transcribed, and analysed by the team. Analysis characterized food insecurity experiences and conditions that challenge and enable food security with attention to traditional food systems, relationships to land, and gender-related responsibilities. Findings show that communal responsibilities generate resilient strategies that provide for all in times of crisis, and long-term food insecurity is managed through social programs, organized charities, and family support. Enhancing food security involves healing and protecting a limited land-base for food production, integrating food production with community priorities for education, training, health, economic development, and scientific innovation. Nurturing spiritual connections with tionhnhéhkwen (life sustaining foods), the natural world, and each other calls for accelerated teaching and practicing our original instructions. Challenges in developing food security leadership, balancing capitalism and subsistence economies, and strengthening social relationships are rooted in the historical colonial and current settler-colonial context that disrupts all aspects of Kanien'kehá:ka society.

Active transportation to support diabetes prevention: Expanding school health promotion programming in an Indigenous community.

BACKGROUND: School-based physical activity (PA) interventions, including school active transportation (AT), provide opportunities to increase daily PA levels, improves fitness, and reduces risk of diseases, such as type 2 diabetes. Based on a community-identified need, the Kahnawake Schools Diabetes Prevention Project, within an Indigenous community, undertook school travel planning to contribute to PA programming for two elementary schools. METHODS: Using community-based participatory research, the Active & Safe Routes to School's School Travel Planning (STP) process was undertaken in two schools with an STP-Committee comprised of community stakeholders and researchers. STP activities were adapted for local context including: school profile form, family survey, in-class travel survey, pedestrian-traffic observations, walkability checklist, and student mapping. RESULTS: STP data were jointly collected, analyzed and interpreted by researchers and community. Traffic-pedestrian observations, walkability and parent surveys identified key pedestrian-traffic locations, helped develop safe/direct routes, and traffic calming strategies. In-class travel and mapping surveys identified a need and student desire to increase school AT. The STP-Committee translated findings into STP-action plans for two schools, which were implemented in 2014-2015 school year. CONCLUSIONS: Combining CBPR with STP merges community and researcher expertise. This project offered evidence-informed practice for active living promotions. Experience and findings could benefit Indigenous and non-Indigenous communities.

Community capacity as an "inside job": evolution of perceived ownership within a university-aboriginal community partnership.

PURPOSE. To assess the evolution of perceived ownership of a university-Aboriginal community partnership across three project stages. DESIGN. Survey administration to project partners during project formalization (1996-T1), mobilization (1999-T2), and maintenance (2004-T3). SETTING. Aboriginal community of Kahnawake, outside Montreal, Quebec, Canada. PARTICIPANTS. Partners involved in influencing decision making in the Kahnawake Schools Diabetes Prevention Project (KSDPP). MEASURE AND ANALYSIS . A measure of perceived primary ownership subjected to linear trend analysis. RESULTS. KSDPP staff were perceived as primary owner at T1 and shared ownership with Community Advisory Board (CAB) members at T2 and T3. Trend tests indicated greater perceived ownership between T1 and T3 for CAB (χ(2)(1)  =  12.3, p < .0001) and declining KSDPP staff (χ(2)(1)  =  10.5, p < .001) ownership over time. Academic partners were never perceived as primary owners. CONCLUSION. This project was community driven from the beginning. It was not dependent on an external academic change agent to activate the community and develop the community's capacity to plan and implement a solution. It still took several years for the grassroots CAB to take responsibility from KSDPP staff, thus indicating the need for sustained funding to build grassroots community capacity.

Can the democratic ideal of participatory research be achieved? An inside look at an academic-indigenous community partnership.

Democratic or equal participation in decision making is an ideal that community and academic stakeholders engaged in participatory research strive to achieve. This ideal, however, may compete with indigenous peoples' right to self-determination. Study objectives were to assess the perceived influence of multiple community (indigenous) and academic stakeholders engaged in the Kahnawake Schools Diabetes Prevention Project (KSDPP) across six domains of project decision making and to test the hypothesis that KSDPP would be directed by community stakeholders. Self-report surveys were completed by 51 stakeholders comprising the KSDPP Community Advisory Board (CAB), KSDPP staff, academic researchers and supervisory board members. KSDPP staff were perceived to share similar levels of influence with (i) CAB on maintaining partnership ethics and CAB activities and (ii) academic researchers on research and dissemination activities. KSDPP staff were perceived to carry significantly more influence than other stakeholders on decisions related to annual activities, program operations and intervention activities. CAB and staff were the perceived owners of KSDPP. The strong community leadership aligns KSDPP with a model of community-directed research and suggests that equitable participation-distinct from democratic or equal participation-is reflected by indigenous community partners exerting greater influence than academic partners in decision making.

Impact of a diabetes prevention program on body size, physical activity, and diet among Kanien'keha:ka (Mohawk) children 6 to 11 years old: 8-year results from the Kahnawake Schools Diabetes Prevention Project.

OBJECTIVES: Report the 8-year impact on body size, physical activity, and diet of a community-based diabetes prevention program for elementary-school children in a Kanien'keha:ka (Mohawk) community in Canada. METHODS: Follow-up (1994-1996) of subjects in the intervention and comparison community and repeat cross-sectional measurements in the intervention community alone from 1994 to 2002. Measures included triceps and subscapular skinfold thicknesses, body mass index (BMI), weekly number of 15-minute episodes of physical activity, run/walk test times, television watching, and consumption of sugared foods, fatty foods, and fruits and vegetables. RESULTS: The longitudinal data of 1994-1996 showed some early positive effects of the program on skinfold thickness but not on BMI, physical activity, fitness, or diet. Repeat cross-sectional measures from 1994 to 2002 showed increases in skinfold thickness and BMI. Physical activity, fitness, and television watching showed favorable trends from 1994 to 1999 that were not sustained in 2002. Key high-fat and high-sugar foods consumption decreased, as did consumption of fruits and vegetables. CONCLUSIONS: Although early results showed some successes in reducing risk factors for type 2 diabetes, these benefits were not maintained over 8 years.

Community governance of the Kahnawake Schools Diabetes Prevention Project, Kahnawake Territory, Mohawk Nation, Canada.

Health promotion emphasizes the importance of community ownership in the governance of community-based programmes, yet little research has been conducted in this area. This study examined perceptions of community ownership among project partners taking responsibility for decision-making related to the Kahnawake Schools Diabetes Prevention Project (KSDPP). Project partners were surveyed cross-sectionally at 18 months (T1) and 60 months (T2) into the project. The perceived influence of each project partner was assessed at T1 and T2 for three domains: (i) KSDPP activities; (ii) KSDPP operations; and (iii) Community Advisory Board (CAB) activities. Project staff were perceived to have the greatest influence on KSDPP activities, KSDPP operations and CAB activities at both T1 and T2. High mean scores of perceived influence for CAB members and community researchers, however, suggests that project decision-making was a shared responsibility among multiple community partners. Although academic researcher influence was consistently low, they were satisfied with their level of influence. This was unlike community affiliates, who were less satisfied with their lower level of influence. In keeping with Kanien'kehaka (Mohawk) culture, the findings suggest a participatory democracy or shared decision-making as the primary mode of governance of KSDPP.

Implementing participatory intervention and research in communities: lessons from the Kahnawake Schools Diabetes Prevention Project in Canada.

Community public health interventions based on citizen and community participation are increasingly discussed as promising avenues for the reduction of health inequalities and the promotion of social justice. However, very few authors have provided explicit principles and guidelines for planning and implementing such interventions, especially when they are linked with research. Traditional approaches to public health programming emphasise expert knowledge, advanced detailed planning, and the separation of research from intervention. Despite the usefulness of these approaches for evaluating targeted narrow-focused interventions, they may not be appropriate in community health promotion, especially in Aboriginal communities. Using the experience of the Kahnawake Schools Diabetes Prevention Project, in Canada, this paper elaborates four principles as basic components for an implementation model of community programmes. The principles are: (1) the integration of community people and researchers as equal partners in every phase of the project, (2) the structural and functional integration of the intervention and evaluation research components, (3) having a flexible agenda responsive to demands from the broader environment, and (4) the creation of a project that represents learning opportunities for all those involved. The emerging implementation model for community interventions, as exemplified by this project, is one that conceives a programme as a dynamic social space, the contours and vision of which are defined through an ongoing negotiation process.