Using Participatory Action Research to Understand the Meanings Aboriginal Canadians Attribute to the Rising Incidence of Diabetes

Patricia Boston, Steven Jordan, Elizabeth MacNamara, Karne Kozolanka, Emily Bobbish-Rondeau, Helen Iserhoff, Susan Mianscum, Rita Mianscum-Trapper, Irene Mistacheesick, Beatrice Petawabano, Mary Sheshamush-Masty, Rosie Wapachee and Juliet Weapenicappo

This paper discusses the advantages of adopting forms of participatory action research with aboriginal Canadians. Using a recent qualitative study of non-insulin-dependent diabetes mellitus among the James Bay Cree, it outlines and discusses the methodology used to construct a form of action research that focused on what meaning the Cree gave to the rising incidence and prevalence of diabetes. In order to understand this perspective, the researchers recruited members of the Cree community as co-researchers in the study. This facilitated the development of a Cree perspective on diabetes and also allowed the Cree members of the study to acquire a grounding in the knowledge and skills necessary for forms of qualitative research that can inform both policy and practice in health care and related areas. In particular, the paper discusses how the study was constructed and what lessons can be drawn from this form of collaborative inquiry.

Key words: Aboriginals; Canada; diabetes mellitus, non-insulin-dependent; participatory action research; qualitative methodology; social environment

Introduction

Diabetes is emerging as an increasingly important health problem among aboriginal communities throughout the world. Non-insulin-dependent diabetes mellitus (NIDDM) is now a leading cause of morbidity and mortality in aboriginal communities throughout North America.^1-5 In Canada this change has occurred, for the most part, since World War II. It has been suggested as being due to rapid social and cultural changes, superimposed onto a susceptible genotype.^6-8

Prevalence rates of diabetes in Canadian aboriginal communities vary widely between linguistic and cultural groups according to their geographic location.^8-10 In the past 30 years, the James Bay Cree have experienced huge social and cultural upheaval with the imposition of a sedentary lifestyle, consumption of processed foods and the adaptation of a money-based economy.^9-11 These changes correlate with the increased prevalence of NIDDM.

Recent studies have begun to focus on lifestyle patterns (e.g. return to the bush) and their effect on diabetes control.^6,12 However, few studies have concentrated on the perception and lay understanding of diabetes in aboriginal populations or the social and cultural meanings of the disease within aboriginal communities.^13,14 Similarly, little attention has been paid to the way in which diabetic health services and prevention measures are organized in relation to the everyday cultural practices of patients and families.

The study on which this paper is based was commissioned to address these issues by the Cree Board of Health and Social Services of James Bay (CBHSSJB) in June 1995. It forms part of an ongoing series of activities aimed at combatting the growing incidence and prevalence of diabetes among the James Bay Cree. These activities have included a prevalence survey to evaluate a pilot diabetes education program implemented by community health representatives (CHRs); the hiring of a diabetes nurse educator to support and improve ongoing patient care; a gestational diabetes project aimed at nutritional counselling of pregnant Cree women; and, most recently, the construction of a diabetes register from May 1996.

Among the Cree chiefs, there has also been a growing political will to make diabetes a priority health care issue. This has helped generate a growing range of activities sponsored by community councils, such as a diabetes awareness week, weight loss contests and the development of plans for walking paths and other forms of physical activity. In conjunction with the First Nations Diabetes Declaration (1995), it is hoped that these and other initiatives will begin to foster an awareness among the Cree that they must begin to act against this disease now.

However, despite the determination of the CBHSSJB to prevent the growth of diabetes among the Cree, there has also been an emerging recognition that existing preventive measures and some treatments have not been as effective as those in the South. One effect of this is an increasing appreciation that forms of health care and education proven in the South may not be suitable for the particular cultural context of the Cree communities of the James Bay region.

Consequently, the purpose of this research project has been to investigate and explore how forms of health care provision aimed at the prevention of diabetes can be constructed by the CBHSSJB using Cree understandings and experiences of the disease. This was considered an urgent priority for two reasons. First, as with other aboriginal peoples, the incidence and prevalence of diabetes has grown dramatically in the last two decades among the Cree, particularly since the signing of the James Bay Agreement with the Quebec government (1976). The growth of the disease in the James Bay communities is already being reflected by the allocation of increased expenditures to diabetes prevention. Second, despite the will and financial commitment of the CBHSSJB to confront what appears to be an impending epidemic, there is a justified uncertainty over spending large amounts of money on programs and services that, while tested and proven in the South, may not be effective or as efficient in the North.

Against this background, our study tried to ascertain how the Cree communities of the James Bay viewed, interpreted and handled the growing incidence of diabetes among their people because, in our view, any intervention aimed at the disease had to rely upon their knowledge and experience of it. That is, the study's primary emphasis has been to give "voice" to the understandings and experiences that the Cree have of the impact of diabetes on their everyday lives and communities. With this focus in mind, our research has had four goals.

• To encourage the active participation of health care providers and the Cree communities in defining the research problem and ways of addressing it
  
• To reveal strengths and barriers that pertain to the effective and efficient implementation of diabetes prevention and treatment programs within the Cree communities
  
• To indicate courses of action and forms of organization that will overcome potential barriers to effective treatment and prevention of diabetes
  
• To make recommendations on how the findings of the research may be usefully incorporated within the provision of preventive programs on diabetes

Organization and Conduct of the Research

The research for this study was conducted between September 1995 and March 1996 by a team of three ethnographers and a physician from McGill University and nine Cree CHRs of the Cree Board of Health and Social Services of James Bay. Adopting a qualitative approach to social inquiry, the research focused on the collection of data in the form of interviews, participant observation, field notes and documentary evidence. After translation and transcription, the data were organized electronically and analyzed according to emerging themes and categories relevant to the aims of the study. The organized data were then used as a basis from which to construct some of the findings presented in this paper.

From its inception, the study had two inter-related strands that converged in the production of knowledge and understanding to inform CBHSSJB policy and program provision concerning the spread of diabetes mellitus among the Cree population of James Bay. The first strand-which we report on below-focused on exploring how diabetes was understood and experienced by Cree with diabetes, their families, relatives and friends within the different communities of the James Bay area.

While the data gathering for this part of the study was conducted by the CHRs, its organization and implementation evolved from an ongoing collaborative process with the McGill researchers. This collaborative process proved vital to the construction of a shared understanding and set of skills about how to approach the research problem, and it also provides the basis for our claims to validity concerning our findings. That is, the intimate knowledge and tacit cultural understandings of Cree culture and community brought to this study by the CHRs made visible the different perceptions and experiences that the Cree had of diabetes as it affected their everyday lives and communities.

This collaborative approach drew upon principles and practices espoused by participatory action research.¹⁵ Increasingly used by educational researchers, participatory action research differs from conventional forms of social inquiry in its commitment to enlarging the role and representation of subordinate and marginalized communities in formal policy-making processes. Although this is effected through different mechanisms and practices within the research process, it is primarily realized through the redefinition of the relationship between the researcher and the researched.¹⁶ Indeed, participatory action research aims at dissolving the distinction between researchers and their "subjects." Insofar as professional researchers have a role within participatory action research, it is to set their expertise alongside the lay knowledge, skills and experiences of those who constitute the object of their investigations. In this way the research process is conceptualized as an "encounter" where equal partners meet, enter into dialogue and share different kinds of knowledge, experience and expertise on how to address a particular research issue.

The form of participatory action research that this study adopted arose out of a series of workshops involving the McGill researchers and the CHRs between September 1995 and February 1996. The aim of the workshops was to provide a grounding in, and familiarity with, qualitative research techniques for the CHRs, so that they could begin to collect data from their communities for the study. Drawing upon their own personal and professional experience of Cree culture, the CHRs also played a key role in developing-sometimes redefining-the orientation of the research as it progressed. Thus the workshops provided a forum for the mutual exchange of ideas, knowledge, understanding and skills that allowed the research agenda to reflect a Cree standpoint on issues pertaining to diabetes. For example, the themes explored through the interviewing of Crees with diabetes emerged from ongoing discussions with the CHRs. As the research progressed and data were collected and analyzed, these themes were developed and modified, and their focus was shifted. This approach also applied to the CHR's fieldwork notebooks, in which they gathered observational and other relevant data.

Once the CHRs had initial training in qualitative data techniques, they began to collect data from their communities. Because of other demands placed on their time (through work and training), it was agreed that each CHR should interview three Cree with diabetes (i.e. 27 interviews) for one hour. The interviews and field notes then formed the basis for a second workshop in which we began to analyze and construct themes and categories from the data. The findings of this workshop generated a second round of interviews that not only followed up on existing lines of inquiry explored in the original interview schedule, but also focused on emergent or unanticipated topics for investigation. Consequently, the CHRs each conducted a second set of one-hour interviews with two diabetic Cree (i.e. 18).

For the third and final workshop in February 1996, all interviews, field notes and other relevant data were collated and analyzed by the CHRs and the McGill researchers for the purpose of producing a report for the CBHSSJB.¹⁷ Its structure, content, themes and foci were determined at this workshop.

Although not reported on fully here, the second strand of our study was conducted by a member of the McGill team researching the understandings and views of health care professionals (HCPs) regarding the spread of diabetes among the Cree communities of James Bay. The purpose of this component of the study was to ascertain not only how HCPs were responding to the growing incidence and prevalence of diabetes among the Cree, but how their work in this area might be improved and supported through both formal and informal mechanisms within and outside the health care system. In particular, we wanted to identify what HCPs saw as barriers to the effectiveness of their existing work practices in relation to diabetes and how these might be overcome.

A wide range of HCPs were interviewed, including nine physicians, the Director of Professional Services, ten nurses, two nutritionists, one dietician, three dentists, one community social worker and a human resources manager. While a quarter of those interviewed had between 2 and 5 years of experience working in the North, the majority had from 5-22 years.

Tape-recorded interviews of 1-2 hours were conducted in the James Bay region and in Montreal with an interview schedule developed in consultation with HCPs who had working experience of the North and some knowledge of diabetes as it affects aboriginal populations. Where necessary, follow-up interviews were arranged on an ad hoc basis to clarify particular issues. Data from this strand of the study were analyzed by the McGill researchers, and the emergent themes and issues were used to inform the development of the research agenda pursued in collaboration with the CHRs.

Diabetes and the Cree Communities

The Cree community is broadly defined for this study as patients, families, community members, community health representatives and elders. Representatives of each of these sectors of the community were interviewed. As previously stated, we saw the involvement of the CHRs as crucial in gaining a "window" and direct link to the perspectives, experiences and cultural understandings that the Cree people have of diabetes and its causes, prevention and treatment. We believed that creating a sense of "ownership" of the research process and its product within the community would provide a more nuanced and deeper understanding of the community processes contributing to their understanding of diabetes.

We have also concluded that the CHRs' data contribution must be viewed as arising from the community context. Community health representatives are an integral part of their communities, and they also have had personal and family experiences with diabetes. The CHRs were instrumental in clarifying issues and ensuring that our interpretations were accurate. We have remained bound by issues of ethics and confidentiality and therefore have included the CHR data with that of the larger Cree community in the overall research findings.

The central themes that emerged from the data were broadly concerned with differences in communication in the context of translating knowledge into usable and practical information. In particular, these differences in communication between the health care professionals and Cree patients were rooted in differences of understanding concerning verbal communication, food, lifestyle, health and illness beliefs and participation in policy and decision making. We discuss these themes below.

Communication

The most common barrier identified was communication. This was perceived as a barrier not only between the health system and the Cree community, but also within segments of the community itself. From the point of view of the key informants (CHRs) and those they interviewed, the presence of diabetes places a barrier to communication at all levels of community health organization.

One area of communication difficulty relates to the roles of family members within families. The presence of diabetes potentially inverts status within many traditional families when children have different lifestyle habits (e. g. use of non-traditional foods) from those of their parents. Moreover, it creates tension within families when, for example, young people are seen as not "educated" and trained in the traditional ways inherent in Cree family life and yet are knowledgeable about modern approaches to diabetes prevention and treatment. One man explained it this way:

The young people, with a lot of education, know more about diabetes ... Older people have the experience because they have lived ... and I think they should share their knowledge ... We should talk together and everyone would benefit.

An additional factor relating to the accessibility of traditional foods and the broader issue of communication was that of language. Language misunderstanding was cited as a common barrier to the effectiveness of existing services. Perceived solutions lay with people "knowing how to read food labels" and with needing translation and assistance in understanding how to interpret differences between glucose and sugar, for example. Language and meaning barriers were cited in the context of access to usable and practical information. As one person put it, "Not everyone knows exactly how medication [actually] works [or] how the process of treatment and prevention happens."

Additionally, discussion of relevant beliefs, such as those about health and illness, lifestyle and food, is seriously compromised by differing family or generational perceptions and beliefs surrounding lifestyle, food habits, etc.

From the point of view of many families, the condition of diabetes also separates and marginalizes family members from each other, from other families and from their local communities. The condition of diabetes is seen as a condition to be "kept hidden," "a secret from family and friends" and "a stigma." For example, many respondents talked about feelings of isolation from not being able to join in traditional Cree social activities organized around eating-a vital part of the maintenance of family cohesion and unity. One individual remarked:

They'll talk about it in my community, they'll talk about it as a subject, but they won't necessarily say, "me, I have it," you know? ... Now slowly they're starting to build up their confidence, but as an individual you keep it hidden. It's mainly hidden, I think.

Additionally, some of our respondents also felt that the Cree must "eat food of the white man, which is not good food for Cree." Moreover feasts, an integral part of Cree life and Cree heritage, cannot be fully enjoyed or receive full participation from Cree with diabetes because of the constraints of diet.

There were reports of perceived incongruence in communication between patients and health care professionals. At the broadest level, these concerns seemed to be associated with an inability to communicate accurately and meaningfully. Two comments from different people demonstrate this:

We were told to eat a lot of salads. It is so different from our traditional diet .... eat more tomatoes, eat more celery, eat more pears ... we don't even have Cree words for those vegetables.

Since she [patient] nods when you talk to her, the nurse thinks she speaks English and she never had an interpreter with her. She can say words in English, but doesn't express herself well in English, as well as Cree.

More specifically, communication problems and problems of cultural misunderstandings were identified as existing between health professionals and Cree patients.

Food Habits and Food Beliefs

Food habits and food beliefs were most commonly identified as the greatest barrier to shared knowledge between the HCPs and the community. There were frequent problems with mutual understanding of appropriate food. For example, we asked if people found it difficult to acquire food that they liked (hoping to open up further discussion). In this connection, several respondents suggested that food considered to be "good" for diabetes was not considered to be "good" for Cree food beliefs and habits. Food considered good for a healthy Cree lifestyle was viewed as likely to be fatty meat from goose, bear, duck, beaver, caribou or raw ptarmigan or fatty fish such as char or trout. Several people suggested that food such as vegetables and salads, despite their perceived high quality by the health care staff, "did not seem to taste right." One patient put it this way:

On the diet they say you should eat lots of vegetables and my stomach growls ... and I still feel hungry afterwards ... but when I have a good diet in fats, I feel good. I feel as though I've eaten.

Another person plainly remarked that a diabetic diet primarily consists of "muskrat food." And whereas the avoidance of fat in one's diet was understood to be important within the belief system of the southern diabetic education, fat was nevertheless perceived as "necessary," "good" and "nourishing" from the health perspective of the Cree. One of the CHRs was told a story of a Cree man who went south to Montreal for the first time. Stopping off at a restaurant for a beef steak, he was asked by the waiter how he would like it cooked. "With a lot of fat!" was his response.

It should be emphasized that notions about "fatty foods" are fundamental aspects of Cree conceptualization of the causes and cures of illness and the maintenance of health. Respondents recalled the "healthy" nature of foods that used to be eaten within a traditional hunting lifestyle, such as fatty meats, and compared these with the "unhealthy foods" associated with a contemporary diet. Therefore, by eating certain foods such as fat (ideally found in goose, bear or rabbit), the Cree patient is trying to get better, not worse. As one respondent related, "People tend to spend their money on chicken or beef. Vegetables are sort of last."

These issues relating to food habits and beliefs are perceived as problematic when avoidance combined with cultural tastes results in compromised nutrition, just at a time when a balanced diet may be necessary for the prevention and alleviation of diabetes.

Accessibility to Cree Food

Lack of access to Cree food was consistently revealed as an issue. People asked for alternative ways of identifying the special needs of Cree patients with diabetes. Others admitted to wanting to make changes from fast foods to more natural Cree foods. As one person said, "At least natural store-bought food [would be better] than microwaveable macaroni." Participants also aspired to finding solutions to the problem of scarcity of store-bought game (rabbit, goose, beaver), hoping that this could become more available.

It was felt that items that are fundamental to Cree food habits need to be identified and encompassed within dietary regimes and education programs. This suggestion was perceived as a solution to the additional problems with foods that are universally disliked by Cree people, such as vegetables. Respondents emphasized this problem at length. It is interpreted that this is a matter not only of adequate nutrition, but of health maintenance and well-being. Food that actually tasted good or that could be used to modify other food was perceived by the Cree to be an important part of "feeling well" or "feeling healthy." It is suggested that having ready access to a meat-based diet, better access to meat in stores and access to local or future developed trapping services could go a long way to improving morale for both Cree patients and their families as well as those who provide them with the food.

Perceptions of Lifestyle

Moving to the issue of perceptions of lifestyle, we found frequently reported difficulties surrounding differing perceptions of cultural mores between the HCPs and the Cree community. Respondents informed us that, while diabetic teaching requires strict maintenance of a "diabetic" diet, for Cree people, "to be polite and respectful" still means to join in social eating. To openly "refuse food is to be disrespectful." From the point of view of community members, the act of refusing food in social and family life is synonymous with the act of separating a Cree person from his/her family and community life. As one individual put it, "To offer food, it's an offer of kindness; to refuse food is to refuse a person's kindness." Other comments related to the importance of participation in feasts and the sense of "feeling different."

They had a feast ... we got all kinds of food from them [the family], and when I sat down mine was already in tin foil ... and it was a bit dry ... no fat ... a piece of meat ... It hurt a bit, you know?

Health and Illness Beliefs

Most important among the Cree beliefs of causation of diabetes is the notion that diabetes is a disease of the "white man" that comes from the white man's blood. It is not clear whether this was perceived to be a "virus" brought in by the white man or some other agent. There was also widespread recognition of a relationship between the spread of diabetes among the Cree communities and, as one informant explained, "the decline of bush life." Without exception, this was attributed to the economic and social changes generated by economic development since the 1970s, but particularly the James Bay Agreement and "the dam" flowing from it.

The majority of informants still conceptualized treatment related to diabetes within the Cree perspective, even if they reported "following the teaching" of the HCPs. Although our purpose was to assess the way people use the system(s) they currently have available, we also asked initial questions about other healing experiences. While there were no specific reports of the usage of alternate healing practices, the majority of respondents reported differing cultural perceptions of "healing" and wellness that were perceived to be more healthy than those of the public health care system.

Other Cree perceptions of healthy life practices involved the current practice of "going into the bush." People often associated feelings of "energy" and "rejuvenation" with being there. One person explained it this way:

If you're here at that time of the year, the town just empties out and the people have this urgency to get ready and go [in the bush]. Everybody's talking about it. It's just a feeling of rejuvenation. One of the best times of the year, really.

Moreover, the concept of "extra weight" was understood to have a direct relationship to the perceived necessity to (healthily) store vital body energy. As one individual said, "To be bony is not healthy, to be fat is healthy." It is important to understand that beliefs about "fat" in this context meant being robust or carrying a little extra weight, which made one stronger and more capable of going about everyday activities, in contrast to being obese, which respondents did not find desirable. At times these beliefs were related directly to the cultural misunderstandings between Cree patients and the HCPs. One patient stated:

The nurse is so happy because I'm losing weight. I'm worried about my weight loss, it's too rapid ... and the nurse thinks I'm exercising ...

Another patient put it this way: And even just general overweight is not seen as a problem ... here it's seen as prospering. Doing well.

While many respondents reported an understanding of the underlying rationale for the use of glucometers for blood sugar testing, some also reported ambivalence about how often glucometers were actually used or how strictly dietary regimes were followed. Some people reported that they followed "the teaching" (of the HCPs), whereas others claimed that they "knew" but did not practise it.

It seems crucial to interpreting these data to recognize that, even though the majority of respondents use the health care system, this does not appear to assure adherence or integration. That is, the choices of health and illness management are still being made very much from within a Cree cultural context. An important finding is that most Cree people regard southern (or "white") and Cree approaches to health and illness as separate and therefore do not report the use of alternate practices with any regularity. There were also comments about "fearfulness" of diabetes and "mistrust" of everything since James Bay and arguments that white man's medicine does not work.

Cree Decision Making and the Policy Process

Another finding from the majority of respondents was in the area of community control over decision making. Considerable discussion arose out of questions raised on lifestyle changes since the James Bay Agreement. The remarks emphasized a sense of under-involvement in broad decision-making processes regarding both local and broad-level policy issues. Two respondents stated:

They rarely listen to what we have to say; when we say something it's never done. The elders want the chief to be here all the time-but the chief has so much business ... so many obligations that he can't be here all the time.

With regard to decision-making issues, many admitted to feelings of "helplessness" and a sense of hopelessness. Reflecting this sense of powerlessness, one Cree elder noted:

I never thought my life would be like this ... When I look outside I just see another house, I don't see the river or the lake ... I never thought I'd be stuck in somebody's living room.

Yet others felt a sense of alienation from formal decision-making processes:

I saw three elders-they were sitting there and I said to them, "Did you go to the meeting last night?" And they sort of laughed and one of them said, "Yeah, I went to the meeting for about half an hour or so and then went home." And I said, "Why? Why?" And so they said, "What's the point? They're the ones who make the decisions."

While we were able to pursue these problem areas in some depth, we realized that the majority of respondents were initially unclear about how they could influence, or become actively involved in, the policy process relating to diabetes. Nevertheless, the Cree community expressed desire for greater involvement in the policy and program process at all levels. Informants suggested the need for greater shared access to knowledge about diabetes between chiefs and their respective local communities. Some solutions were proposed, such as encouraging greater Cree participation in health shows, radio talks and more active involvement in these events by band chiefs and the band council.

In the latter phase of the research project, interview and observation data showed a number of patterns relating to potential solutions as to how people perceived involvement in the policy and program process regarding diabetes prevention and treatment.

Education

The need for food and diet training for Cree by Cree people was also expressed. It was suggested that nutrition teaching be integrated into senior elementary schools and junior high schools and taught by the Cree. Perceptions of "how to be involved" lay in the area of "having diabetes sufferers themselves become involved in diabetes education." One succinct comment was "There is no better person to teach a Cree than a Cree."

Another form of participatory involvement described as needed was greater Cree participation in the development of Cree educational materials. Participants suggested the compilation of a Cree cookbook for people with diabetes, Cree cooking classes, workshops and informal meetings in Cree, as well as diabetic support groups.

Conclusion

We believe that there are several lessons to be drawn from this study that could benefit future research focusing on aboriginal health problems. The first relates to the methodological orientation and procedures used for investigating the impact of a disease such as diabetes on aboriginal communities. That is, our study commenced with the fundamental premise that the views, perspectives and experiences of the Cree of James Bay had to be built into the research process from its inception. This was achieved by ensuring that members of those communities (CHRs) were inducted into the research activities and given control over how the research problem was conceptualized and investigated.

As previously noted, a form of participatory action research was used to generate a shared understanding and commitment for the realization of this goal. This process allowed the mutual exchange of different forms of expertise between the CHRs and the McGill researchers to occur on an ongoing basis. From the Cree perspective, the research workshops provided a mechanism for the transfer and acquisition of "expert" knowledge and skills related to qualitative research methodologies and procedures. For the McGill researchers, the workshops afforded a forum for them to learn much about the intimate details of Cree society and culture as well as how to formulate and enact a research process from the standpoint of the Cree.

The central themes emerging from our research findings focus on the different ways in which the Cree understanding of health and illness can form the basis of practical information to use in the construction of policy and programs concerned with diabetes prevention. In this context, our findings suggest that strong social and cultural barriers persist that impede the flow of knowledge and understanding of the disease between the Cree communities and the health care practitioners. These barriers appear over a wide range of issues concerning the cultural significance of food, health and illness beliefs and, more broadly, in the decision-making and policy process. Consequently, it is important to understand that while many aboriginal people may use health care systems, this does not signify any sense of adherence or integration on their part.

Some of the most pressing issues of concern can be viewed within the broad area of communication. By "communication," we refer to the different ways that the Cree think and talk about diabetes and how they manage the disease as part of their everyday lives vis-à-vis the health care system. Our evidence suggests that the Cree attach very different meanings to the disease and its origins, effects, treatment and prevention. Thus, those of us who currently provide services in the health care system who fail to recognize the many complexities that culture and language impose on health problems run the risk of providing services that are neither in the best interest of the patient nor of his/her family and community. Therefore, as a broad policy issue, we feel there is a serious need for greater emphasis on education and training of health care professionals that focuses on the knowledge, understanding and experience of aboriginal communities in relation to diabetes.

Finally, our research suggests that underlying problems of communication not only present obstacles to mutual understanding, but also impose limits on the decision making and "empowerment" in program and policy formulation that aboriginal people desire. Indeed, as a consequence of the findings of this study, the CBHSSJB has appointed CHRs to key decision-making bodies concerning the development of diabetes programs and services. We believe that action like this will enhance communication and reduce barriers, and will also enlarge opportunities for the creation and maintenance of mutually beneficial and equitable relationships.

Acknowledgements

The authors would like to thank the Cree Board of Health and Social Services of James Bay for their support of the study on which this paper is based and their permission to publish its findings.

We would also like to express our gratitude to the members of the Cree communities and the health care practitioners who took part in the study. Last, we express our thanks to two anonymous reviewers for their comments on a previous draft of this article.

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Patricia Boston, Steven Jordan and Karne Kozolanka, Department of Educational Studies, Faculty of Education, McGill University, 3700, rue McTavish, Montréal (Québec) H3A 1Y2
Elizabeth MacNamara, Department of Medical Biochemistry, Faculty of Medicine, McGill University, Jewish General Hospital, Montreal, Quebec
Emily Bobbish-Rondeau, Cree Board of Health and Social Services of James Bay (CBHSSJB) - Chisasibi
Helen Iserhoff and Beatrice Petawabano, CBHSSJB - Mistissini
Susan Mianscum, CBHSSJB - Ouje-bougoumou
Rita Mianscum-Trapper, CBHSSJB - Waswanipi
Irene Mistacheesick, CBHSSJB - Wemindji
Mary Sheshamush-Masty, CBHSSJB - Whapmagoostui
Rosie Wapachee, CBHSSJB - Namaska
Juliet Weapenicappo, CBHSSJB - Eastmain

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