HEALTH PROMOTION INTERNATIONAL Vol. 19. No. 3 © Oxford University Press 2004. All rights reserved.
Legitimizing diabetes as a community health issue: a case analysis of an Aboriginal community in Canada
1GRIS, Université de Montréal, Québec, Canada, 2Kahnawake Schools Diabetes Prevention Project, Kahnawake Territory, Kanien'keh, Mohawk Nation, Québec, Canada, 3Centre de l'hospitalier de l' Université de Montréal, Québec, Canada and 4Department of Family Medicine, McGill University, Montréal, Québec, Canada
Address for correspondence: Sherri Bisset, Groupe de Recherche Interdisciplinarie en Santé, Université de Montréal, C.P. 6128, Succ. Centre-ville, Montréal, Québec, Canada H3C 3J7, E-mail: sherri.l.bisset{at}umontreal.ca
SUMMARY
The Kahnawake Schools Diabetes Prevention Project (KSDPP) is an ongoing participatory research and intervention project aimed at the primary prevention of type 2 diabetes. Formally initiated in 1994 with strong community support, KSDPP provides a fertile opportunity to learn about how a community came to identify the need for preventive action on a health problem such as diabetes. The purpose of our study was to describe the various conditions in the community of Kahnawake, which gave rise to its mobilization for the prevention of type 2 diabetes. Qualitative data consisted of 12 individual interviews and one focus group with key community members and health professionals living and/or working in the community of Kahnawake, along with historically relevant documents. The data collection and analysis procedures of the grounded theory method were applied. Results describe a preceding phase to formal KSDPP implementation, triggered by returning research results on the community prevalence of type 2 diabetes. This phase of ‘legitimizing diabetes as a community health issue’ is characterized by a shift in the perceived preventability of diabetes among community members; from a problem that was to be lived with to a problem that was to be prevented. The shift in perceptions was facilitated by the context in the community, described by structural developments, cognitive and relational elements. In addition to reaffirming the critical importance of utilizing lay knowledge during the planning of a health promotion intervention, our study has uncovered some of the key conditions through which individuals in the community came to participate in the identification and planning of a diabetes prevention project.
Key words: Aboriginal health; community mobilization; program implementation
INTRODUCTION
Community participation during all phases of a research project is a key element in community-based approaches to improving public health (Institute of Medicine, 1997; Israel et al., 1998
). Interventions with community members participating during planning, among other phases, are more likely to be responsive to community needs, gain community support, elicit local action and foster feelings of community ownership (Bracht et al., 1999). The message of taking ‘double consideration’ of expert and community opinion of felt needs (Steuart, 1959), and building program objectives upon a ‘common ground’ (Green and Kreuter, 1999) has echoed in the health education and program evaluation literature for some time. Health promotion interventions where community members have become actively engaged have been described in some detail (Schulz et al., 2002). However, theoretical development that elucidates the processes and contextual conditions through which members of a community come to identify health needs and initiate action toward meeting them is needed (Freudenberg et al., 1995; DiClemente et al., 2002). The objective of this study was to contribute to closing a ‘major gap between the theory and practice’ of participatory research [(Naylor et al., 2002), p. 1176] by describing how community members and researchers collaboratively identified a need or health issue.
As an initial phase in program planning, the ‘community needs assessment’, or ‘community diagnosis’, is traditionally seen as a process of collecting relevant and timely information to shape a health intervention to local conditions (Green et al., 1980). Over time, the need to have community members play an active role during this phase by articulating a relevant health (or research) issue has become increasingly recognized (Green and Kreuter, 1991). A ‘healthy community assessment’ reflects this change in emphasis, where information is collected to inform community action (Hancock and Minkler, 1997).
Health promotion's interest in participatory research (Green, 1995) recognizes the socially created nature of scientific knowledge, where the need to have community members influence or, arguably, drive the creation of that knowledge is acknowledged. This emphasis on community participation requires an integration of a multitude of theoretical influences from a wide range of disciplines (Bunton and MacDonald, 1992). Incorporating or creating theories that address broader social processes through which health is created continues to challenge health promotion (Poland, 1992; DiClemente et al., 2002).
The Kahnawake Schools Diabetes Prevention Project (KSDPP) is a community-based, participatory research project with the goal of preventing type 2 diabetes (Macaulay et al., 1999). Formally initiated in 1994 with strong community support (Potvin et al., 2003) and community ownership (Cargo et al., 2003), KSDPP provides a fertile opportunity to learn about how a community came to identify and articulate the need for diabetes preventive action (Montour and Macaulay, 1988). This study addresses the process through which key community members identify and request that action be taken on a health issue having adverse effects on the community. It is the objective of this study to describe the sequence of events surrounding the identification and request for preventive diabetes-specific action.
METHODS
The Kanien'kehá:ka people of the Kahnawake Territory embody one of the Six Nations of the Iroquois confederacy. Located on the south shore of the St Lawrence River, the Kahnawake territory has a population of 
7000 people. The community has a history of independence and autonomy, which has resulted in decentralized control by community members of several major community service providers.
Generating and analyzing the data
We constructed the story of KSDPP's implementation from 12 individual interviews, one focus group (Table 1) and 17 supporting documents. Individual interviews were principally completed with community health experts, organizational leaders, committee members or people with diabetes who were identified during data analysis as playing a role during the identification of diabetes as a community health issue. The focus group (n = 8) consisted of community members who had belonged to a Diabetes Support Group that was started in the 1980s. Supporting documents (i.e. meeting minutes, research grant applications) were used to gain historical knowledge of relevant community events, organizational structures and secular trends.
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Qualitative data were collected and analyzed from June 2000 to August 2002. Interviews were semi-structured, consisting of open-ended questions, audiotaped and transcribed verbatim using pseudonyms to protect anonymity. The interview guides were constructed iteratively, responding to the need to fill in missing information, and expand upon and detail emerging concepts. We asked interviewees general questions about their perceptions related to diabetes as well as questions more pertinent to their role in the community. The focus group provided information on the way the community reacted to the returning of research results.
Data collection and analysis were guided by the procedures and techniques of grounded theory (Strauss and Corbin, 1997). This study utilized open and axial coding procedures, constant comparisons and theoretical sampling to continually verify, enrich or create new concepts and/or conceptual relationships. Rather than beginning with a predetermined conceptual model of program implementation, concepts and their relationships emerged from the data. Interviews were analyzed using ATLASti version 4.1 software (Muhr, 1994). Consistent with a Straussian approach, our inductive analysis was guided by the health promotion literature on community organization and health planning.
Sampling began by interviewing a family physician involved during the early community mobilization around diabetes prevention, and who remained active in the maintenance of KSDPP (‘open sampling’). Data were analyzed line-by-line (‘open coding’). Codes were compared and contrasted for their fit into larger concepts. For example, ‘collecting local data’, ‘making presentations’ and ‘identifying community leaders’ were grouped with other codes to describe the concept of spreading a meaningful message. During axial coding, categories were examined for greater definition, their relationship to other categories, and the conditions under which they occurred. For example, perceiving a community-level threat was a precondition for an increased level of community concern for diabetes. This, in turn, was associated with the cultural value of protecting the Seventh Generation, ‘the faces of the ones that are not yet born’. Collection of data followed a procedure of ‘theoretical sampling’, whereby data sources were identified based upon the need to detail and verify theoretically relevant concepts as they emerged during data analysis. In this study, a description of a community reaction to the community presentations directed interviewing to detail the variation in the reaction, along with the social and structural conditions for these various reactions.
Validation procedures are inherently part of the grounded theory methodology to ensure that the researchers' own biases do not drive the process (Strauss and Corbin, 1997). Assuring validity is ongoing through data collection and analysis with the application of credibility criteria (Guba and Lincoln, 1989). The credibility of our results are strengthened by the nature of the team members who provided a balance between methodological expertise, a sensitivity to the culture and knowledge of the project's development, together with the fresh perspectives of newcomers. Assumptions and propositions were first verified within the team, through ‘peer debriefing’ at weekly meetings and later with community members outside of the team, with ‘member checking’.
RESULTS
Formal implementation of KSDPP began in 1994, following the acquisition of research and intervention funding from a national research funding agency. The main finding from this qualitative analysis points to the presence of a phase antecedent to the acquisition of this funding, spanning from the mid- to late-1980s. As illustrated in Figure 1, this antecedent phase, characterized as ‘Legitimizing Diabetes as a Community Health Issue’ represented a shift or change in the way community members perceived diabetes.
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This shift in collective consciousness was catalyzed through a series of presentations delivered by two family physicians in 1987. The presentations disclosed the high local prevalence of diabetes and diabetes complications found through two earlier research projects (Montour and Macaulay, 1988
; Montour et al., 1989), along with general information, including risk factors for developing diabetes and healthy lifestyle recommendations. This information alerted the community to the burden of diabetes, and consequentially resulted in raising levels of consciousness around diabetes. This shift, however, was influenced by the social and structural characteristics of the community at the time. Social conditions were reflected in a relational element of encountering diabetes and its risk factors daily, along with a cognitive element related to the social acceptability surrounding the subject matter of diabetes. Structural characteristics are described by advancing a community health agenda. In presenting the findings, gerundial terms are used to capture movement over time. Figure 1 outlines four categories, their properties, dimensions and generalized relationships. Categories appear in bold, properties within each category are underlined, and dimensions are italicized.
Encountering diabetes and its risk factors daily
Encountering diabetes and its risk factors daily reflected how children, adults and health professionals living and/or working in the community were continuously constructing the experience of diabetes based upon their social interactions. This category illustrates the pervasiveness and severity of diabetes in the community:
‘Something like a sixth of the community have had an amputation or a stroke from diabetes. I mean people die from diabetes, the rates are that high. And it's everywhere, most people have someone in the family that's died of diabetes.’ (Health expert.)Young children were aware that something called ‘diabetes’ existed in their community:
‘You could go into a grade one class and ask the children if they knew somebody with diabetes, and almost every child would raise their hand.’ (Health expert.)
The experience of diabetes was expressed by numerous physical and emotional burdens such as losing a loved one, caring for a paralyzed parent or worrying about the future.
Due in part to its commonality, diabetes was perceived as something to ‘live with’. Talk about diabetes was ‘loose’ or casual, and not action based. Encountering diabetes seemed to increase people's sensitivity to the problem and contributed to a ‘readiness to act’. As such, this category was an underlying social condition to raising consciousness around diabetes.
Advancing a community health agenda
Advancing a community health agenda emerged as a structural condition to raising consciousness around diabetes. This category reflects changes within the three key community service providers (community services, education and the hospital) to approach health holistically and to expand the focus of health outside of the hospital. These changes were achieved through incremental and interdependent actions of taking advantage of external opportunities, driving the agenda and creating internal opportunities.
Taking advantage of external opportunities depicts the process through which community service providers were pursuing multiple opportunities (principally offered by the government). Obtaining resources required the community to be aware of their existence and meet their requirements, both of which depended upon a certain level of existing community resources (i.e. community data, expertise). Service providers utilized resources strategically, by transferring them into local knowledge and expertise, and increasingly driving the agenda instead of following it. With these incremental processes, community service providers were creating internal opportunities and pursuing their own health agenda.
Raising levels of consciousness around diabetes
This category represented a shift in the way diabetes was perceived among key community members, namely elders, leaders, health care workers and other Kahnawakero:non (people of Kahnawake) in positions of responsibility for children. Perceptions shifted from perceiving diabetes as something to live with to perceiving diabetes as something to prevent through penetrating the community with new information about a familiar issue.
Perceiving diabetes as something to live with illustrates the general state of consciousness with respect to diabetes. It was perceived to be a ‘matter of fact’ issue, requiring individual treatment. Prior to the 1987 presentations, individuals were not concerned about diabetes unless they had it themselves, someone close to them had it, or they were a community health expert. Seeing diabetes as a matter of fact was a consequence of not knowing that diabetes was a preventable disease, believing diabetes was mystical and not knowing the contribution of behaviors to the development of diabetes:
‘Nobody ever made the connection of (what) it was, what sugar (diabetes) really was ... there was a mystique around it too, just like, well, cancer. If you didn't get it, you were lucky. If you got it, well then it was sad.’ (Organizational leader.)
The dimension dealing with diabetes after the fact is captured by the subdimensions ‘treating diabetes’, ‘individualizing diabetes’ and ‘not knowing the social impact of diabetes’. Maintaining control over diabetes describes connecting diabetes with lifestyle and controlling its progression.
Penetrating the community with new information about a familiar issue embodied a process through which key community members came to know diabetes in a new way. As conveyed by one organizational leader, ‘there was a real, awakening I would say at that point’. Embedded in this process is a set of conditions that allowed this information to take on a significant meaning. ‘Penetrating’, like piercing the consciousness or emotion of the community with new information, was a process of gaining knowledge about the problem and seeing the prevalence figures ‘in black and white’ along with spreading a meaningful message. Critical to the effectiveness of the message, however, was the cognitive setting of the message.
Key community members came to know about the problem of diabetes through gaining knowledge of the problem in a new way, namely by knowing the numbers and making the links. In particular, hearing that the community prevalence of diabetes was disproportionately high or ‘knowing the numbers’ contributed to the identification of diabetes as a collective, as opposed to an individual problem. Gaining knowledge about the problem came about through spreading a meaningful message among the lay and leadership, and through advancing a community health agenda among health professionals.
Spreading a meaningful message was contingent upon the messengers meeting people where they are, talking about an issue with relevancy, and their standing in the community. This message reached the community physically (going out to talk with people in various settings), intellectually (using common language and involving community members during presentations) and culturally (presenting orally, not imposing solutions and inviting, not mandating attendance). By being relevant, the message built upon community knowledge:
‘... it was an increased knowledge, knowledge that people had inside them anyway and just hearing it spoken, and seeing the figures, had a big impact as people's own results (were given) back to them.’ (Health expert.)
By talking about a familiar issue differently, the message captured the attention of key community members in a manner that was previously absent. Finally, the messenger's ability to penetrate the community with new information was associated with their credibility, namely being liked, working for the wellness of the community, being from the community, and having ‘letters at the end of (their) name’.
The cognitive setting of the message, or community ‘readiness’, characterizes a pre-condition to penetrating the community with new information about a familiar problem. Before 1987, social stigmas surrounding diabetes and physical activity might have precluded an openness to discuss the issue, when diabetes was portrayed as ‘shameful’ and ‘there was guilt’ attached to it. Knowledge built over time eventually dissipated some of this guilt and shame.
An increased consciousness of the burden posed by diabetes occurred when community elders, leaders, health care workers and others in positions of responsibility for children began perceiving diabetes as something to prevent. With this ‘awakening’, diabetes became a serious issue that was not going to be accepted. Perceiving diabetes as something to prevent was evidenced by overt reactions, as communicated to health experts:
‘People came to us and asked us to do something, you know, ‘Do something about diabetes.’. That was their reaction.’Here, key community members were seeing the bigger picture, becoming more anxious about diabetes and thinking about preventing its onset. Although variation was found in how and when key community members became less complacent towards diabetes, overall an instinctual response to protect the children and the Seventh Generation, by taking collective responsibility for them, came to the forefront.
With this new perception, key community members were seeing the bigger picture and thus appreciating the social impact, the long-term impact and the community-level impact of diabetes. A segment of the community was also becoming more anxious about diabetes. This increased anxiety, or fear and concern about diabetes, together with a knowledge of the bigger picture influenced thinking about preventing diabetes onset, which specifically identified the need to ‘focus on the elementary school children’.
Other influencing conditions
A cultural category reflecting traditional ways was found to influence raising consciousness around diabetes. Traditional ways of operating characterized the cohesive and assertive tendencies seen in the actions of the community service providers. These traits built upon one another, facilitating the community's ability to ‘pull it together’:
‘We used our collective wisdom, our communities were learning systems and from there we used that wisdom to make our decisions ... So if you take it now to service delivery, what I see happening is that it's a practice that's been inherent in us.’ (Organizational leader.)Espousing these traditional ways of operating was dependent upon local representation, which in turn facilitated driving traditional or Haudenosaunee (Iroquois ways based upon seeing health holistically and planning for the Seventh Generation).
Beyond the community, secular trends at the macro-level also influenced raising consciousness around diabetes. The 1970s were characterized by a growing appreciation of the impact of lifestyle behaviors on health, as evidenced by health policy statements such as the Lalonde Report (Lalonde, 1974). The Ottawa Charter (Anonymous, 1986) ushered in another stream of thinking in which behaviors were understood to occur in a larger social and environmental context. Government-sponsored initiatives for diabetes prevention research in Aboriginal peoples was a response to secular trends such as these, and as well to various lobbying strategies (Rock, 2003).
DISCUSSION
The main study finding highlights how a community needs assessment, documenting the high prevalence of type 2 diabetes and its macro- and micro-vascular complications in the mid-1980s, legitimized diabetes as a community health issue in an Aboriginal community. This phase, marked by a change in community members' perceptions of diabetes, preceded the formal implementation of the KSDPP in 1994. This finding reiterates and expands upon our understanding of the key function of the community assessment (Green and Kreuter, 1991; Sanderson et al., 1996) and contributes to closing ‘the gap between rhetoric and reality’ of participatory research in health promotion [(Naylor et al., 2002), p. 1176] by: (i) highlighting the important role of disseminating locally based and locally relevant information; (ii) elaborating upon effective strategies for disseminating this kind of information; and (iii) underlining the key structural and social community conditions operative during this community mobilization process.
A community assessment that identifies a relative health disparity causing some degree of perceived threat to community quality of life, presented in an open, interactive forum, might be one way in which community members can ‘self-diagnose’ health issues of relevance. We find a similar process within the North Karelia project, described by a shift from a ‘light spirited’ acceptance of an unproportionately high rate of cardiovascular disease to overt indications of concern (‘Why is it so bad with us?’) and requests for action (Blackburn, 1983). This ‘self-activation’ occurred immediately following a public report to community leaders that identified the North Karelia people as having the highest risk of heart attack worldwide.
During the ‘getting started’ phase of a type 2 diabetes prevention program in Sweden, the health issue was identified by health experts (Andersson et al., 2002). Next, during the ‘community analysis’ phase, research results were returned to initiate an intervention. In contrast, we describe a process in which the return of research results did not accompany suggestions for community-level solutions (e.g. mobilization). In Kahnawake, the family physicians identified diabetes as a common problem and completed baseline surveys. In their community presentations, they made recommendations to promote healthy eating and physical activity practices at an individual level, and through providing the community with a self-portrait or comparative backdrop unintentionally spurred a community response to mobilize around the prevention of type 2 diabetes.
Strategies used to communicate a message influenced how the message was received. The need for both the message and the messengers to belong to the same ethnic group has been emphasized (Moewaka-Barnes, 2000). In Kahnawake, one messenger was Mohawk from the community and the non-Aboriginal messenger had credibility through longstanding positive involvement with the community and through partnering with a credible community member. In addition to having credibility, the messengers communicated through various channels, at various levels of the community, in culturally appropriate ways. The value of sensitizing the political community, as well as targeting health messages at relational and individual-level effects, has been discussed (Eng and Parker, 1994). Our results confirm this. Critical channels were created at leadership levels and these structural supports allowed the wishes, as expressed by lay community members, to be put into action.
Other strategies for disseminating locally relevant and locally based data were utilized in the Warm Springs Indian Reservation mobilization process (McLean, 1997). These strategies were based upon the community education model proposed by Freire (Freire, 1970). Comparative statistics were used to generate dialog in an 18-month process of interactive community meetings. Credibility emerged as an issue to be addressed in this process, described by an overlapping cycle of listening, dialog and action.
Finally, with respect to the variation found in how and when community members reacted to the presentations, an overt supportive reaction was not uniform. This lack of uniformity contributes to our understanding of the community conditions that allowed raising levels of consciousness around diabetes. Descriptions of lay community members reacting with apathy were also given. Reacting apathetically was associated with not identifying a role to play, not having a voice to devise solutions, or denying the existence of the problem. Our results suggest that the social acceptability of the subject matter influences the degree to which community members are ready to accept and thus take action upon a given issue, and that this readiness will preclude any level of reaction, independent of its perceived threat or relevance.
The historical context of the research question posed a challenge to the development of the theory, and suggests a limitation to the study. For some, recalling events or details of the environment from >10 years in the past was not difficult, but for others recollections were cloudy. Even amongst those who believed in the clarity of their memory, conflicting storylines arose. Sometimes, conflicts in storylines provided an excellent opportunity for a negative case analysis that enriched the theory by enlarging the range of variation. Conflicts in storylines were resolved by ongoing member-checking with participants and in presenting findings back to the community.
CONCLUSION
Study findings represent an initial attempt to understand the process through which a community can become engaged to take action on a health issue, and highlight the pivotal role of community participation in the implementation of this community-based intervention project aimed at the primary prevention of type 2 diabetes. These findings support suggestions in the literature which state that in order for change to occur, community members must be brought together around a common interest and directly experience the need for change (Minkler, 1997). The advantage of such a process is suggested by the sustainability of KSDPP in the community, and its high level of perceived community ownership (Cargo et al., 2003).
Our results would be enhanced through comparative case studies in other Aboriginal communities in Canada where diabetes prevention projects have been implemented. As a criterion of trustworthiness (Guba and Lincoln, 1989), findings are more transferable to Aboriginal communities sharing similar cultural values and a sociopolitical climate, as we are reminded by a community elder:
‘It's not (about) lighting fires in other communities ... It's the idea of bringing your fire to another community and sharing it and letting them understand this is how it worked for us. But just use it as a guideline and they have to do their own work over there. They can throw out or leave in whatever they need to use pertaining to their culture, pertaining to their kind of people, whichever point they come from.’
ACKNOWLEDGEMENTS
This study was supported by research grants from the Government of Canada Social Sciences and Humanities Research Council (grant no. 828-1999-1021) and a Medical Research Council postdoctoral fellowship (no. H5-55050-AP009992) to M.C. S.B. is a recipient of a Strategic Training Fellowship in health analysis and evaluation, a Canadian Institute for Health Research (CIHR) and Fonds de la Recherche en Santé du Québec (FRSQ) partnership. T.D. is a doctoral fellow of the CIHR (200204MFE-102028-107792). L.P. holds the CIHR/Canadian Health Services Research Foundation (CHSRF) Chair in Community Approaches and Health Inequalities.
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