Health Education Research Advance Access originally published online on January 10, 2008
Health Education Research 2008 23(5):904-914; doi:10.1093/her/cym077
Can the democratic ideal of participatory research be achieved? An inside look at an academic–indigenous community partnership
1 Psychosocial Research Division, Douglas Hospital Research Centre—McGill University, Verdun, Québec, Canada H4H 1R3
2 The Kahnawake Schools Diabetes Prevention Project, Kahnawake Territory, Kanien'keh, Mohawk Nation, Quebec, Canada
3 Department preventive et sociale, Université de Montréal, Montréal, Quebec, Canada
4 School of Kinesiology and Health Studies, Queen's University, Kingston, Ontario, Canada
5 Department of Humanities Concordia University, Montreal, Quebec, Canada
6 Participatory Research at McGill, Department of Family Medicine, McGill University, Montreal, Quebec, Canada
* Correspondence to: M. Cargo, School of Health Sciences, University of South Australia, City East Campus, North Terrace, Adelaide, South Australia 5001. E-mail: margaret.cargo{at}unisa.edu.au
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Abstract |
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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.
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Introduction |
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Participatory approaches to inquiry share an ideal of research as a democratic negotiated process between academic and community partners [1, 2] to ensure that the research process balances social and cultural relevance with scientific rigor [3, 4], fosters empowerment, ownership and capacity building [2] and translates scientific knowledge into action [5]. The ideal of shared decision making provides a starting point for academic and community partners to negotiate their levels of participation and establish decision-making mechanisms that allow for the integration of community members' knowledge of local culture and context with researchers' theoretical and methodological knowledge. Despite efforts to democratize knowledge creation and utilization, power differentials between community and academic stakeholders remain a challenge to partnerships in indigenous community health research [6]. The extant power differential has been attributed to a legacy of colonization in which externally driven research and intervention, in the absence of appropriate local involvement, has come to be viewed by many indigenous stakeholders with distrust [7, 8]. This distrust has resulted in a proliferation of codes of research ethics and memoranda of understanding and greater support for community participation in research to ensure that academic researchers respect the rights and interests of indigenous peoples [9, 10].
Participatory approaches to inquiry support a spectrum of participation [2, 11]. Minimum participation denotes the participation of community stakeholders in the development of research questions and interpretation and application of research results while maximum participation occurs when those affected by the issue remain actively involved in all research phases [11]. Given the multitude of factors influencing insider–outsider tensions, a perfect balance of power can never be achieved [12].
A potential challenge to the democratic ideal of participatory research can be posed by models of research where the balance of influence shifts ‘significantly’ towards indigenous peoples or academic researchers and the influence of the other stakeholder is minimized. Such models would be controlled or directed by either the indigenous or academic stakeholder particularly if the influence was pervasive across most or all domains of a participatory effort. Conducting academically controlled or directed research with indigenous peoples is becoming politically less tenable as it can undermine authentic community participation and capacity building [13]. Models of community-controlled or -directed research, however, have not been formally entertained in participatory research despite the global movement of indigenous self-determination in Canada [14], the United States [15], Australia [16] and New Zealand [17] where the principles of ownership, control, access and possession of data collection processes are gaining in prominence [18, 19]. Take, for example, community-controlled projects that are driven by indigenous organizations with consultative input from researchers [20, 21] and community-directed projects in which decision making is shared but under the guidance of community partners [22, 23]. In these models, research projects are controlled or directed by indigenous peoples and do not necessarily rely on shared decision-making processes. Understanding who influences decision making and how much may provide academic researchers with insight on how to form equitable partnerships with indigenous communities where ‘community’ is defined by indigenous people coming together around a shared interest and often within a bound geographical area.
Using a refined measure of perceived stakeholder influence [24, 25], this study sought to assess the extent to which the democratic ideal of participatory research was upheld in an academic partnership with an indigenous community. If the ideal of democratic decision making was upheld in practice, we would not expect to observe significant differences between the perceived influence of academic and community stakeholders on different aspects of project decision making. We would, however, expect to see significant differences between stakeholder groups if decision making were either academically or community driven or controlled.
Although having a community-directed model was not an explicit goal of the Kahnawake Schools Diabetes Prevention Project (KSDPP), we hypothesized that consistent with Kanien'kehaka (Mohawk) culture [26, 27], previous KSDPP findings showing ownership by multiple community partners [24] and historical trends in indigenous research [14–23], KSDPP would be primarily under the direction of community stakeholders, the majority of whom live and work in the community and share a common culture.
Setting
Kahnawake is a Kanien'kehaka (Mohawk) community of 
7200 people, located 9 miles south of the urban centre of Montreal (Quebec), Canada. In 1985, the reported prevalence of Type 2 diabetes was 12% of adults, aged 45–64, twice that of the general population of the same age [28].
Intervention
Community concern over the high local prevalence of Type 2 diabetes and the perceived increase of overweight among school children, combined with the Kanien'kehaka tradition of caring for future generations, moved Kahnawake to partner with academic researchers to implement and evaluate a diabetes prevention program [29]. The KSDPP intervention, which began in 1994, aims to change the physical environment and social norms of the school and community by promoting healthy eating and active lifestyles [30]. The school component consists of a classroom-based health education program for grades 1–6 and nutrition policy disallowing unhealthy food and promoting healthy food choices. The community component consists of KSDPP partnering with community organizations to create supportive environments to enable behaviour change [31].
Project governance
KSDPP is governed through stakeholder participation in multiple project domains including: (i) the vision that maintains KSDPP activities, (ii) day-to-day KSDPP operations, (iii) KSDPP Community Advisory Board (CAB) activities, (iv) planning and implementation of the KSDPP intervention, (v) planning, implementation and dissemination of the research and (vi) partnership ethics. KSDPP stakeholders are comprised of community members who are representatives from community organizations and the private sector and those with a research interest who may or may not be affiliated with an academic or research-sponsoring institution (e.g. university). These stakeholders are involved in KSDPP through their affiliation with one or more of the following: (i) CAB, (ii) KSDPP staff, (iii) supervisory board, (iv) research team or (v) community affiliates.
KSDPP staff members are represented by diabetes prevention facilitators and trainers, secretarial and administrative support staff and researchers from the community (i.e. community researchers) or outside the community (i.e. community-based researchers). The CAB, which meets monthly, consists of members from health, social, political, spiritual, recreation and private sectors of the community and interested community members. In 2002, a proposal to create a five-member executive committee was approved by the CAB to supervise the administrative and financial operations of KSDPP. The supervisory board, comprised of an elder, administrators from research-related institutions and local political and education representatives, ensure research accountability to the community and funding agencies. Academic researchers are professors, undergraduate and graduate students in health and social science-related disciplines from local and partnering universities. Community affiliates are service providers, front-line workers and administrators from organizations, institutions and agencies who support the planning and implementation of KSDPP's intervention and research agenda, though are not directly involved in the above committees.
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Design
Cross-sectional surveys of perceived community ownership were administered in spring 2004, in the project's 10th year (see Fig. 1). An eligibility criterion for participation was attendance at a minimum of three meetings between April 2001 and March 2004 during Phase IV of KSDPP [32]. Meeting attendance for each KSDPP participant was determined from a review of meeting minutes for CAB, research team, supervisory board, KSDPP staff; individual participation was logged in an Excel database to allow for a systematic review by two researchers. KSDPP's Scientific Director verified the final list of eligible participants. From the initial pool of 86 participants, 68 self-report surveys were distributed to eligible project stakeholders at regularly scheduled project meetings. Absent members were mailed surveys and consent forms for return in stamped, addressed envelopes. To ensure the timely return of surveys, the evaluation coordinator contacted participants by telephone, 3 and 6 weeks following distribution. Of the 68 surveys distributed, 51 were returned for a response rate of 75%.
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This research followed the KSDPP Code of Research Ethics [10]. The protocol for this study was first reviewed and approved by the KSDPP CAB and then submitted to the McGill Faculty of Medicine Institutional Review Board.
Participants
Stakeholder affiliation was determined by self-reported primary affiliation and counted only once in the sample. Group-level responses based on self-reported primary affiliation are as follows: CAB members (n = 16), KSDPP staff (n = 16), academic researchers (n = 14) and supervisory board members (n = 5).
Instrument
Survey questions assessed the following: (i) perceived influence of project stakeholders in different aspects of KSDPP, (ii) perceived primary ownership, (iii) affiliations with and interests in KSDPP, (iv) participation in KSDPP and (v) perceived control. This survey was adapted from a previous KSDPP study where comparisons were made between two time points; the study found that project decision making was a shared responsibility among multiple community partners with low academic researcher influence [24]. The previous tool was based on the perceived influence of project stakeholders across three domains of the project: (i) project activities, (ii) project operations and (iii) CAB activities. Limitations of this tool included the conflation of research and intervention activities. To address this problem, separate domains were created for research activities and intervention activities. A new domain on partnership ethics was added. The revised instrument addressed the representation of community stakeholders and their opportunities for participation in decision making as outlined in the KSDPP Code of Research Ethics [10] and guidelines for participatory research [1]. Items within each domain were gleaned from the mandates of KSDPP committees/sub-committees and roles of each project stakeholder. The lead researcher worked with participants from each stakeholder group to refine the items.
Perceived influence
Perceived influence questions were adapted from Flynn [25]. Using a five-point Likert response choice from 1 (not at all) to 5 (a lot), participants rated the influence of each of five stakeholders on six domains of project functioning to yield 30 scales. Each scale, comprised of three to six items, corresponded to the perceived influence of one stakeholder group for each project domain.
The ‘first domain’ assessed perceived stakeholder influence on KSDPP activities, operationalized as influence on KSDPP goals, annual and long-range plans. The ‘second domain’ assessed perceived stakeholder influence on CAB activities, such as ensuring adequate representation from the community, committee member selection and setting the agenda. The ‘third domain’ assessed perceived stakeholder influence on KSDPP operations, namely the approval of new research projects and researchers, the hiring of staff, the outlining of policies and procedures that guided day-to-day operations and making budget decisions. The ‘fourth domain’ assessed perceived stakeholder influence on KSDPP intervention activities during the planning and implementation phases. The ‘fifth domain’ assessed perceived stakeholder influence on KSDPP research and dissemination activities like what and how research information was collected from community members and how research findings were circulated inside and outside the community. The ‘sixth domain’ assessed perceived stakeholder influence on the ethic of respecting community (e.g. respect for local values, ensuring opportunities for community participation and ensuring the research protects the community). Each sub-scale reflected a homogenous set of items with internal consistencies (imputed using Cronbach's 
) ranging from 0.72 to 0.96.
Perceived primary ownership
After completing the perceived influence questions, participants identified the primary owner of KSDPP based on the question: ‘All of these things considered, which of the partners would you say is the primary owner of KSDPP at the present time?’
Affiliations and interests
Participants identified the: (i) stakeholder group which represented their primary relationship to KSDPP, (ii) committees of which they were a member and (iii) interests they represented through their participation in KSDPP (e.g. education, cultural, sport and recreation, academic/research and health and social services) from which their primary interest could be determined as residing internal to the community or external (e.g. research oriented). Responses to the closed-ended questions were coded as binary, ‘yes’ or ‘no’.
KSDPP participation
To assess participation level in KSDPP, participants were asked to identify, from the list provided: (i) the approximate number of KSDPP meetings attended in the last 12 months using a seven-point ordinal scale and (ii) the extent to which they participated in KSDPP Phase IV for years 2001–04 on a five-point Likert scale from 1 (none) to 5 (a lot) from which the duration of involvement could also be determined.
Perceived control
Perceived control questions developed by Israel et al. [33] and previously adapted for the 1999 KSDPP survey [24] were applied. This four-item measure assessed participant responses to their level of satisfaction, opportunity to contribute ideas, ability to influence decisions and feeling listened to by others. Responses were rated on a four-point Likert scale from 1 (agree strongly) to 4 (disagree strongly) (Cronbach's = 0.82).
Analysis
The objectives of the analysis were to assess: (i) the level of stakeholder participation in the intervention project, (ii) the level of perceived influence of each stakeholder across six domains of KSDPP functioning, (iii) overall perceived primary ownership and (iv) stakeholder group differences in perceived control. As many variables violated assumptions of normality, non-parametric tests were used. Data were analysed using SPSS Version 11.0 [34] and PEPI [35]. Reported P values were Holm's adjusted.
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Respondent characteristics
Participant characteristics are provided in Table I. More participants were women than men (X
= 20.5, P < 0.0001) and there was a fairly representative age distribution in the sample (X
= 1.9, P > 0.05). Most participants' primary interest resided with the community as compared with research (X=7.1, P < 0.05). Almost equal proportions of participants were from the CAB, staff and research with fewer participants from the supervisory board (X = 6.5, P > 0.05). The mean duration of involvement in KSDPP across the 4 years of KSDPP Phase IV was 2.6 years (SD = 1.3) with a mean level of participation on 1.6 committees (SD = 0.72). The median level of participation in the year preceding the survey was 7–12 meetings. Given the small number of supervisory board members (n = 5), we did not have sufficient statistical power to test for stakeholder differences on age, gender and participation level.
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Perceived influence
Table II reports the means of the perceived influence scores, standard deviations and number of respondents for each project stakeholder. Application of the Kolmogorov–Smirnov Lilliefors statistic identified 25 of the 30 sub-scales as violating assumptions of normality. Visual examination revealed that the distributions were either positively or negatively skewed, leptokurtic or J shaped. The data were then examined using non-parametric statistics; the mean ranks of the same perceived influence scales are provided in Table III. Friedman's test was used to compare the perceived influence of different project stakeholders within each domain of project functioning. Given statistically significant effects within each domain, post hoc comparisons were performed using Wilcoxon signed rank test; P values were Holm's adjusted to account for the Type 1 error rate. KSDPP staff had significantly more influence than other stakeholders on annual activities, program operations and intervention activities, but shared decision making with: (i) KSDPP CAB on CAB activities and maintaining partnership ethics and (ii) academic researchers on research and dissemination activities. The KSDPP CAB, KSDPP staff and academic researchers were perceived to share similar levels of influence on the domain of research and dissemination activities. Academic researchers were perceived to have their greatest influence on those domains in which they carried concomitant expertise and interest: research and dissemination activities, the project's annual and long-range plans and maintaining ethics of the partnership. Similarly, with supervisory board members having responsibility for financial accountability and long-term KSDPP plans, they were perceived to carry their greatest influence on the project's annual and long-range plans, maintaining the partnership and program operations. In comparison, community affiliates were perceived to have significantly less influence than KSDPP staff and CAB across all project domains.
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Perceived primary ownership
As illustrated in Table IV, the CAB and staff were perceived as the primary owners of KSDPP; few participants identified the supervisory board as a primary owner and no one perceived academic researchers or community affiliates in this role.
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Perceived control
The perceived control measure was not normally distributed and was analysed using the Mann–Whitney U test. No significant differences (Z = –0.41, P > 0.05) were found in perceived control by internal interest (mean rank = 23.4, n = 31) or external interest (mean rank = 25.1, n = 16).
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Discussion |
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Study findings support the hypothesis that KSDPP is more closely aligned with a model of community-directed research than a model of shared decision making between academic and community stakeholders. KSDPP staff were perceived to carry significantly more influence on three of six domains of project functioning (i.e. ‘KSDPP activities’, ‘KSDPP operations’, ‘KSDPP intervention’) and perceived to share their influence with the KSDPP CAB on two domains (i.e. ‘CAB activities’, ‘KSDPP ethics’) and with research team members on one domain (i.e. ‘KSDPP research and dissemination’). Consistency in the perceived influence of KSDPP staff across all project domains and the high level of perceived KSDPP CAB influence points to the strong leadership provided by these two community stakeholders, both of whom also were perceived as the primary owners of KSDPP. The strength of community stakeholder commitment was exemplified, in part, by the composition of KSDPP's committee membership with more than two-thirds of the stakeholders' primary interest residing in the ‘community’ as opposed to ‘research’. The lower level of perceived influence of community affiliates is a potential concern but seems to reflect the informal role of this stakeholder group in the project. Within this model, the high (absolute) perceived influence scores for researchers on three of the six domains (3.60–3.98/5), as illustrated in Table II, suggests that the decision-making process remains non-hierarchical and participatory, yet guided by strong community leadership.
We consider KSDPP decision making as approximating a model of community-directed research as it recognizes the participatory and domain-specific influence of multiple stakeholders, yet respects the strong leadership provided by community stakeholders. This model can be regarded as falling somewhere in the middle between a model in which there is greater consistency in the equality of decision making across project domains and a community-controlled model in which local stakeholders influence decision making on all domains and academic influence is minimal. A shared or democratic partnership would have yielded scores with fewer, if any, significant differences on perceived influence between community and academic stakeholders. This was not the case for KSDPP, in its 10th year of implementation. Aligning KSDPP with a model of community-directed research is similar to evaluations of community-based interventions in indigenous communities in Canada [22] and Australia [23]. This study challenges models of participation in participatory research where decision making is shared equally between indigenous and non-indigenous partners. In some indigenous contexts, models of equal or democratic participation will yield to community direction or control.
Interpreted from a broader socio-political perspective, KSDPP as a model of community-directed research is consistent with indigenous people's right to self-determination, which acknowledges their right to make decisions on issues that affect their health, culture and relationship to their land [14]. This right to self-determination extends to asserting their expertise in developing, managing and evaluating interventions intended to benefit indigenous populations [13, 18, 19]. We view the movement of some indigenous groups to exert greater control over their affairs as potentially competing with the democratic ideal of equal participation in participatory research. Thus, equitable or fair participation for some indigenous groups is more adequately represented by community direction or community control and not democratic, shared or equal decision making. Although the political context of program evaluation is not new [36], our findings suggest that evaluators need to approach evaluation research with an openness and flexibility to work within the rubric of local political values while respecting the broader self-determination movement that many indigenous communities, like Kahnawake, may find themselves a part.
As expressed by Wallerstein [6], ‘there is never an equilibrium of power’ in community-based participatory research (p. 39). The most significant power imbalance in this study resided within the domain of KSDPP intervention activities. Researchers were not perceived to have much influence in this domain even though they had complementary expertise in program planning and theory-driven evaluation that would not compromise the cultural grounding of the interventions. Although researchers made an effort to be present at some community-based intervention activities, their level of participation did not satisfy the expressed expectations of KSDPP intervention staff, who lived and worked in the community. An expectation of reciprocity by the intervention staff stemmed from their perception that to understand school and community activities, researchers needed to be more actively involved in planning and implementation and not just evaluation. Reciprocity is central to culturally competent evaluation that is responsive to local values [37]. Intervention staff made extensive commitments to support research activities because their community expertise was required. In addition to providing data for research projects (e.g. interviews), they coordinated focus groups, assisted students in research projects and reviewed research articles, measures, abstracts and presentations.
Researchers were unable to be more actively involved in the intervention for at least two reasons. First, working within a model of community-directed research required extensive time commitment to ensure the acceptability and cultural appropriateness of research protocols, local capacity development, provision of regular updates to project stakeholders and contributing to day-to-day project operations. Second and relatedly, researchers experienced competing demands from their academic institutions to teach, procure research grants, train students, sit on academic committees and publish research papers. Unfortunately, this left less time for researchers to share their expertise in a meaningful way with intervention staff by participating more fully in intervention planning and implementation. KSDPP researchers were ‘caught’ between the competing demands of the community while upholding their academic obligations. This was especially problematic for junior researchers because institutional standards for promotion and tenure tend to rely upon models of academically driven research. Fortunately, this convention is changing with steps being taken to recognize community-engaged research and teaching in researchers' review for promotion and tenure [38, 39].
Study findings should be interpreted with the following limitations and strengths in mind. First, the study assessed participant's subjective perceptions of stakeholder influence and not objective indicators which could have been gleaned through participant observation and meeting minutes. Second, although we applied eligibility criteria for KSDPP stakeholders to complete the survey, it is possible that some participants did not have sufficient knowledge of the decision-making process and that this lack of knowledge influenced their responses. This could explain the large standard deviations for the mean perceived influence scores of supervisory board and community affiliates (Table II). Third, the study did not discuss power differentials that may have existed between indigenous stakeholder groups nor did it examine the heterogeneity of their positions and roles (e.g. service providers and administrators) in relation to decision making. Finally, the perceived influence measure was refined from its previous applications to KSDPP [24] precluding cross-sectional comparisons over time. We felt that a greater contribution could be made through the availability of an instrument to assess perceived stakeholder influence across discrete domains of a community-based intervention project. This tool may be of utility to projects for self-monitoring purposes. It also could be used across projects to assess the influence of different modes of governance in relation to achieving implementation objectives, including fostering empowerment and capacity building and impacting health-related outcomes. Ideally, these quantitative applications would be integrated with qualitative interviews and/or ethnographic observations. This would allow enriched understandings of academic–community partnerships to emerge from the stories and experiences of those engaged in the process itself.
Whether a partnership is aligned with a model of shared decision making or is directed by academic or community partners depends on a number of factors. This study suggests that the socio-cultural, political and historical contexts of indigenous communities and the bureaucratic and political contexts of academic institutions are important factors for all stakeholders to consider. Although there is no cookie cutter approach to partnerships, academic partners must demonstrate mutual trust and respect and have humility in engaging indigenous partners and maintaining a meaningful and mutually beneficial partnership [2, 12].
To the Institute of Medicines' [40] identification of community-based participatory research as a new area for public health schools to offer formal training, our findings suggest that training opportunities for health educators and researchers situate participatory research in the socio-political context of indigenous health and the principles of ownership, control, access and possession [18] and expand the spectrum of community participation to include models of community-directed research. This may place health educators and researchers in a stronger position to engage indigenous communities that come together around a shared interest in equitable partnerships.
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Canadian Institutes of Health Research through the Community Alliance for Health Research strategic initiative (CAR-43274); New Investigator Award to M.C. by the Fonds de la recherché en santé, Québec.
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Conflict of interest statement |
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None declared.
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Acknowledgements |
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TopAbstractIntroductionMethodsResultsDiscussionFundingConflict of interest statementAcknowledgementsReferences |
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This research was funded by the Canadian Institutes of Health Research (CAR-43274). The primary author was supported by a career award from the Fonds de la recherché en santé de québec (FRSQ-10075). The authors thank participants for completing the survey and community members for reviewing the protocol, refining the survey, sharing their perspective on the results and providing feedback on this manuscript. We also thank the two anonymous reviewers for their comments.
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References |
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Received on March 11, 2007; accepted on November 1, 2007
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