Broken Heart Stories: Understanding Aboriginal Women's Cardiac ...

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research-article2013

QHRXXX10.1177/1049732313509407Qualitative Health ResearchMedved et al.

Article

Broken Heart Stories: Understanding Aboriginal Women’s Cardiac Problems

Qualitative Health Research 23(12) 1613–1625 © The Author(s) 2013 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049732313509407 qhr.sagepub.com

Maria I. Medved1, Jens Brockmeier1, Judy Morach2, and Lori Chartier-Courchene3

Abstract Many Aboriginal communities call heart problems, and in particular cardiovascular disease, “White man’s sickness.” At the same time, Aboriginal women present with some of the highest rates of this disease. Against this backdrop, we explored how women with cardiac problems understand their heart health and used narrative-discursive methods to analyze interviews conducted with women from two First Nations in North America. The women told stories that were riddled with contradictions, unfolding a complicated personal and cultural reality of living with cardiovascular disease. In many stories, heart disease was described as resulting from a “community imbalance” in the wake of colonialism whereby the women had to take over the traditional roles of men. Their ideas of heart disease risk and healing flowed from this understanding. They derived a sense of strength, however, from their ability to undertake both gender roles. Based on our findings, we provide some recommendations for cardiac care. Keywords Aboriginal people, North America; heart health; illness and disease, experiences; narrative inquiry; women’s health Among many Aboriginal populations, cardiovascular disease is commonly viewed as “White man’s sickness” (Garro, 1988). However, the morbidity associated with heart disease is significantly higher in Aboriginal than non-Aboriginal Canadians (Waldram, Herring, & Young, 2006), with Aboriginal women showing the highest rate (Anand et al., 2001). For this reason, there has been an increasing effort to help Aboriginal women in their struggle with heart problems. This has led to the development and facilitation of behavioral lifestyle practices like nutritional wellness education, with an emphasis on culturally sensitive perspectives (e.g., Stefanich et al., 2005; Witmer, Hensel, Holck, Ammerman, & Will, 2004). As important as previous research is, what has been ignored is how indigenous women understand themselves, as well as their medical and cultural circumstances. Our starting point was the assumption that the different values and expectations Aboriginal women bring to their experience of their heart disease influence the way they organize, define, and understand their healing. Both men and women are guided in their ways to deal with cardiac problems by their societal roles and, not least, gendered identities that are learned as one grows up within a certain cultural community (Medved & Brockmeier, 2011). Every culture provides a broad repertoire of narrative resources people can draw on, and one of our aims in undertaking the present study was to research the resources of Aboriginal women. Studying the narrative fabric of self-understanding and identity

negotiation is especially instructive because it provides a comprehensive picture of how individuals attribute meanings to cardiac health, healing, and their overall life under complex social and cultural conditions. Because we think it is important to know more about these processes and their narrative makeup, we investigated the stories indigenous women suffering from White man’s sickness tell about themselves and their situation.

Colonialism and Aboriginal Women Research on aboriginal health in North America demonstrates the essential role of colonialism in contributing to health inequality. Colonialism, as has often been pointed out, is not only a historical fact but also a reality that continues to maintain health inequality to the present day (Loppie Reading & Wien, 2009). The accumulative effect of the different aspects of colonialism—displacement, residential schools, poverty, racism, and intergenerational trauma—has been linked to a wide range of health 1

University of Manitoba, Winnipeg, Manitoba, Canada Northern Health Region Mental Health Program, The Pas, Manitoba, Canada 3 Sagkeeng Health Center, Sagkeeng, Manitoba, Canada 2

Corresponding Author: Maria I. Medved, Department of Psychology, University of Manitoba, Winnipeg, Manitoba, Canada, R3T 2N2. Email: [email protected]

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disorders (Bombay, Matheson, & Anisman, 2009). The reality of disadvantage and the ongoing history of subordination have shaped communal and individual life in numerous respects. In many cases, cultural traditions and community forms of life have been destroyed, causing a cultural break between the past and present. What have been called low levels of cultural continuity have been linked to adverse psychological and physical health outcomes (e.g., Chandler & Proulx, 2006; Lalonde & Chandler, 2004; Mota et al., 2012), whereas high levels have been associated with better healing outcomes (Iwasaki, Bartlett, Gottlieb, & Hall, 2009; Reilly et al., 2009). Generally, connections to Aboriginal cultural identities are seen as an important condition for alleviating stress and promoting health. Colonization is also of central importance if we are to understand Aboriginal women’s experiences, not least because it has fundamentally altered gender roles and identities (Walters & Simoni, 2002; Wise, Carmichael, Belar, Jordan, & Berlant, 2001). In the past, Aboriginal women, and more specifically older women, played a major role in advising younger community members and imparting cultural and spiritual teachings (Dickason, 2000). These practices are in line with the special role of grandmothers who traditionally held significant influence and authority in Aboriginal societies. With the onset of colonization, the conventional community structures that supported the role of the grandmother and that of women more generally were disrupted and communities became more patriarchal (LaRocque, 2007; Shepard, O’Neill, & Guenette, 2006). These shifts have dramatically upset the gender balance. They have altered the responsibilities and identities of women, with particular consequences not only for women’s health but also for that of their families and communities.

Heart Disease and Aboriginal Life It has often been noted that for many Aboriginal people, illness is thought to reflect imbalance(s) in and with the community, and indigenous ways of understanding sickness and healing are intertwined with holistic and community-based perspectives (Henderson, 2000; McLeod, 2007). This is in contrast to Western biomedical views of health that aim to localize sickness within individual bodies. Cardiovascular disease represents a relatively new sickness to Aboriginal people. As already emphasized, the family of cardiovascular diseases and their related symptoms is often referred to as White man’s disease. There are numerous other chronic illnesses, such as diabetes and cancer, that also are new to Aboriginal communities, and their increase has been attributed to changes in nutrition and other lifestyle factors associated with colonization. Some Cree communities explicitly

attributed the cause of diabetes to the “White man,” relating its spread to “the decline of bush life” (Boston et al., 1997). Cardiovascular disease is an illness highly defined in biomedical terms, relying on laboratory procedures such as testing blood for high cholesterol, and demanding medication and surgery for acute treatment. The diagnosis of such a disease thus means introducing a highly medicalized “Western” sickness into a new cultural setting. Because cardiovascular diseases are new to most Aboriginal peoples, there are few traditional healing options available to deal with them (Garro, 1988). In terms of treatment, Garro suggested that although cardiovascular diseases were viewed as a long-term illness among the Anishinaabe people in Manitoba she spoke to, this was not an ongoing source of concern; for many, symptoms might come and go and interventions were sought only when the need was perceived as acute. She also found there was no clear understanding of either the concept or the treatment of heart diseases.

Present Study Against this setting, we explored how women in First Nation communities understood their experience of White man’s disease. The primary source of our data was transcripts based on interviews conducted with Aboriginal women from two First Nations who self-identified as having heart problems. We also drew on informal conversations and observations that took place during our visits to the First Nations (first two authors) and years of experience working at First Nations community health centers and living in First Nations reserves (last two authors). Methodologically, our research was based on a narrative approach following our rationale that it is primarily through personal storytelling that people make sense of their lives. We conceive of narrative as a mode of thought and communication central to how humans understand themselves within a cultural world (Brockmeier, 2012). People’s stories bind together individual and collective memories; they localize personal histories within cultural traditions and interweave everyday experiences with the social weave of gossip, legends, and myths. It also is via narrative that people try to come to terms with momentous events such as sickness (Charon, 2006) and cultural ruptures like those created by systematic oppression (Lear, 2006). What has become known as illness narratives thus offers health researchers unique access to how people draw on cultural values and develop personal options for coping with extenuating physical and psychological challenges (Herbert & McCannell, 1997; Medved, 2007). Over the last years, the importance of narrative research within health and social sciences in general has


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Medved et al. been continuously growing (e.g., Andrews, Squire, & Tamboukou, 2013; Hydén & Brockmeier, 2008; Smith & Sparkes, 2008). This has led to a more and more differentiated field of methodologies (Brockmeier, 2013). Within this field, we have used a combination of narrative and discursive methods, aiming both at better understanding the narrative strategies and techniques used in the stories participants told us, and the specific storytelling practices and their discursive organization. We did this especially in view of the interview situation that often transformed into a form of conversational narrative (Georgakopoulou, 2007; Norrick 2007; Ochs & Capps 2001). Other intentions we had in using a narrative-discursive approach was to apply methods sensitive to a holistic and person-centered framework, to preserve the original storytelling format characteristic of many indigenous communities (Cruikshank, 1998), and to accord with protocols recommended for work with Aboriginal people (e.g., Kenny, 2006). This type of analysis also allowed us to capture subtle meaning-making processes that reflect the interplay between the individual and the culture.

Method Sample The participants were 16 self-identified First Nations and Métis women recruited from First Nation communities who had reported heart problems in the previous 5 years. The average age of the women was 52 years (range 45 to 71). We defined heart problems broadly so participants would not exclude themselves from the study, wondering whether they had the “correct type” of cardiac problem. One participant (who had also had a heart attack) had a heart transplant, one had a heart murmur, and the rest had suffered cardiac arrests of varying severity. Although it is important to give attention to the wide cultural diversity of indigenous people, there appear to be common worldviews, shared histories, opinions, and belief systems regarding health-related issues that constitute the “Aboriginal viewpoint” (McCabe, 2007). The women we worked with were from two First Nation reserves. One was an Anishinaabe (Objiway) Nation in Western Canada consisting of a population of approximately 3,000 people located about 150 kilometers from the nearest urban center. The other was a Cree Nation consisting of a population of about 4,500 persons located approximately 750 kilometers from the nearest urban center. On both of the reserves, there was a strong Christian presence (Catholic, Protestant, Jehovah’s Witness). Each participant had at least three children, with 12 of them reporting having grandchildren as well. Many participants spoke of looking after their grandchildren on a

regular basis as well as fostering children from the community. Eleven of the women said they were presently married or in a common-law relationship. Their occupations included nurse or nursing assistant (3), university instructor (1), and stay-at-home (foster) mother/grandmother (12). With the exception of one participant, all of the women mentioned that they also suffered from other physical ailments, the most common being diabetes. In terms of psychological health, alcohol use and feelings of depression were commonly referred to. Although not probed in depth, because it was not the main topic of our study and we had not obtained consent to include it, it was evident during the course of the interviews that many women had backgrounds that included traumatic experiences such as abuse.

Procedure After an institutional review board issued an ethics certificate approving the study protocol and after community consultation, recruitment materials (including posters and brochures) were made available at the community health center. We also placed advertisements in the local First Nations newspaper. We gave the women the option of directly contacting the researcher or contacting a community health worker who would then provide their contact information to the researcher. With the exception of one interview that was conducted at a participant’s home, all individual interviews were conducted in a room at the community health center. On arrival, the researcher offered the study participants a selection of beverages, baked goods, and fruit. Before the interview, participants were provided with a stipend in recognition of their time and effort; after its conclusion, we gave a small gift. For the women who participated, this study appeared to be viewed as an opportunity to carve out a space where their heart problems were “front and center.” When explicitly asked why they participated, most of the women said they wanted to reduce heart disease in the community. Almost all of the participants seemed relieved when the interviewer did not express disapproval when they mentioned heart-unhealthy behaviors. The primary source of our data was in-depth interviews that were audiotaped and transcribed. Before the interview, a brief demographic and medical history questionnaire (e.g., other diseases, number of heart attacks, and so forth) was completed verbally with each participant. Interviews lasted between 60 and 90 minutes. Prior to beginning with the study, we developed a short interview guide that emerged in response to feedback provided by focus groups that included Aboriginal women who were health care providers and community organizers (not only from the First Nations where the women were interviewed). We kept the interview guide


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open-ended to facilitate the emergence of narrative replies. The interview included general questions such as the following: What do your heart problems mean to you? Do you think being an Aboriginal woman influences your experience of your heart problems? How do you deal with your heart problems? All participants requested and were provided with a hard copy of their interview transcript and were invited to contact the interviewer if they wanted to correct or add something.

Data Analysis We used different components of narrative-discursive analytic methods (Clandinin, 2007; Gubrium & Holstein, 2009; Hydén & Brockmeier, 2008; Kohler-Reissman, 2008). Following an ideographic approach, we individually analyzed each interview involving, in the first phase, the structure and content of the transcribed texts, and then, in a series of stages, more detailed narrative forms, stylistic features, and discursive strategies. We started with pilot interpretations that were discussed and checked against our working interpretations and the original interview material. After that, each transcript was systematically reexamined to identify both comparable and contrasting sequences elsewhere in the interview. Finally, we cumulatively compared the results from each individual interview with the other interviews. Once we conducted an analysis of the interviews, we provided a summary of the findings to Aboriginal stakeholders to obtain feedback. We included this step to engage in what Lahman, Geist, Rodriguez, Graglia, and DeRoche (2011) called “culturally responsive relational reflexive ethics,” part of which is to respect Aboriginal participants as the “knowers” of their contexts and environments (Tuhiwai Smith, 1999). Community members appeared to appreciate that two of us were First Nation health care providers—members of the community. They helped ensure that our results were informed by the knowledge and experiences of front-line workers at Aboriginal health community centers. Discussion primarily centered on practical issues, such as how to facilitate heart health as a consequence of our research.

Findings The narratives followed, for the most part, each woman’s medical history. They tended to begin with their views of their heart problems, their experience of suffering an acute heart episode (as applicable), and their healing and rehabilitation experience in relation to both Aboriginal and Western orientations. After having covered these more-or-less medical aspects, they went on to talk about broader issues that appeared interwoven in manifold ways with their “medical stories.” In the next section, we

concentrate on a selection of excerpts from the stories that we believe bring into prominence both commonalities and individual particularities.

Problems of the Heart At the beginning of the interviews, many of the women set out to tell their heart stories in a manner resembling an illness genealogy that localized their own problems within a familial history of sickness: Well, I was born and raised here, and I come from a long line of all kinds of diseases. Like my mother was a diabetic, but I don’t know if she had a heart disease, but she died with a burst heart. And my dad, he died, well he died of old age but he had a stroke and a heart attack. So, maybe that’s where I am, I get it from. But I didn’t like, I didn’t think like with me, I didn’t think I was ever going to have one. But I did about three years ago. My father died of a massive coronary when he was fortyeight years old. And my grandpa before that died of a massive heart attack. My grandmother died of a heart attack. My family, there used to be eight of us, now there’s two of us. And cancer runs in my family, heart problems run in my family. There’s just my brother left, and my brother’s had a couple of heart attacks already and he’s got heart damage.

As in these examples, often loss of life and disability were closely connected with heart problems. Against this backdrop, it was surprising to hear from almost every woman interviewed that she was astounded, in fact shocked, to have developed heart problems herself. Sometimes they learned of their own heart problems only after suffering a first heart attack: Interviewer (I): And did you think you were at risk for having a heart attack? Participant (P): No, not at all. I: So it came out of nowhere P: Yeah. It just came so sudden. Or if I was sick, I was ignoring the symptoms. Just saying I was all right. Just happened so suddenly. The cardiologist said that I did have a heart attack. I don’t know, I guess another heart attack about ten years prior to that. . . . Nobody has ever said that I had any heart problems. So it was a surprise, just a complete surprise. . . . My heart was just dying slowly.

Only one woman mentioned that symptoms of a heart attack are different for women than for men, something she did not learn until after her heart attack, and none of the participants mentioned that symptoms are different for Aboriginal than non-Aboriginal people:


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Medved et al. So I phoned the health center and got one of the girls to drive me to the hospital, and nobody there was too concerned ‘cause I wasn’t having any kind of normal symptoms that men have.

When the women were asked about how they understood the discrepancy between so many people in their family and community having heart problems and their own surprise to learn they themselves had the same problems, many hesitated and, seemingly, had difficulty explaining this inconsistency. Several women mentioned that because so many people relied on them, the experience of this need would serve as a protective factor against developing heart problems: So many need me, depend on me. My husband, grandkids, friends. I just can’t get sick. So I thought I’m so busy, I don’t have time to have a heart attack. Maybe I could have something like high blood pressure or something I could just live with.

Notable here is the devaluing of the danger of a chronic symptom like high blood pressure, which was viewed as an inherent part of the business of living. Furthermore, an issue in many stories was the idea that anxiety caused hearts to be weak, but also that “weak hearts” caused anxiety. Regardless of causality, the women told us about living in a chronic state of low-level fear, not sure whether symptoms like a racing heart were because of anxiety, an acute cardiac episode, or both: After, after the heart attack. But like I said, it’s knowing that I was having a heart problem and you know, it was, in my mind you know, I thought . . . you know, I started thinking about . . . maybe having a weak heart and that, and that brought it on. I get those anxiety attacks. Like I’d get scared.

This sequence articulates what struck us as a common attitude. The women tried to downplay their symptoms and worries while struggling with an inner strain—in fact, with anxiety and fear—a tension that was marked by pronounced prosodic emphases at the beginning and the end of this extract.

Healing Once the women realized they had heart problems, a substantial number of them (11/16) pointed out that they relied on Christianity, so they turned to prayers, particularly in the acute phase: My husband is the traditional one, I’m the Christian one. He lights his sweetgrass, his sage, and I take my prayer book. The traditional people believe my strength comes from my clan, where I believe my strength comes from the Lord.

Only one woman said she drew on traditional Aboriginal teachings and practices to understand or cope with her heart problems: And I needed to go out to that graveyard that’s over there, on our reserve, and I needed to go over there and talk to the spirits, like, you know, we believe in spirits and central spirits, and I needed to go over there and talk to them.

With the exception of this participant—who had the highest formal education attainment—the women’s stories revealed minimal practicing of alternatives to Western medicine. Traditional approaches did not fit in their understanding of their cardiac disease. One factor here, already addressed, might be that biomedical heart diseases were for long unknown to Aboriginal communities. In many stories, there was an air of reverence with respect to Aboriginal ways of being in the world that were more spiritual in nature, even if the women seemed to be reluctant to engage in them: P: My grandfather was a medicine healer. What he used to say was, it has to come from your heart and it has to come from the Creator. And if you want to really, you know, cure someone, it has to come from your heart or the Creator. And that’s hard to find today. I have to truly believe in what I’m doing and concentrate on that herb. And when, when a person takes herbs from a medicine man they usually have to go through a ritual or they pray that the medicine helps them and believe the medicine is going to help them. And it takes time and commitment, which I don’t have. I: Which one? P: Commitment [quiet laugh]. So when I take Western medicine, I just pop it in my mouth and that’s it. I know it’s going to help.

All of the women reported being willing to take pharmaceutical medications, and expressed conviction in their efficacy to improve cardiac functioning, as highlighted in the above excerpt and the one below. I take a lot of pills to get, like, blood pressure pills, some pills to slow, slow my heart down so it doesn’t take, take off. And it hasn’t lately.

In contrast to all the other demands on them, taking medication was viewed as something that involved minimal effort on the women’s part. Participants reported taking multiple medications but expressed little interest in finding out more about them. There appeared to be two reasons for this. For one, the medical realm was perceived as too complicated, and they did not “speak the


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language”; second, this knowledge was deemed unnecessary for the medications to be effective in that they “just need[ed] to learn how to take them.” Even though the women’s stories indicated they were willing to take pharmaceutical medication for their heart health, there was clearly articulated ambivalence, even outright hostility, toward the typically recommended heart-healthy lifestyle changes such as diet management, increasing exercise, and quitting smoking. Moreover, they resented people telling them what they should do: I don’t know. I just, sometimes I don’t care, sometimes I think, well, if I’m gonna die, I’m gonna die eating what I wanna eat. And then sometimes I get angry because it really pisses me off when somebody—especially a dietician or somebody—tells you like, what, you’re supposed to eat that food, can’t eat this food. Well, you know what? I was, we were okay eating our own food until you came along, instructed us in all this crap. That’s what I think sometimes. Like even with smoking. Like it’s my choice.

Like the woman who is quoted above, many resented the intrusion of heart-healthy lifestyle activities into their life and, even more, attempts to “motivate” them to follow the rules of such a regime. As in the above extract, this was sometimes related to the fact that generations of White people had told Aboriginal people how to live in the name of “civilization,” the original reason for the import of White man’s disease. Now practitioners are seen as doing the same in telling them how to live, this time in the name of “health.” The anger was quite palpable as the participant carefully chose her words, as indicated by exceptionally long pauses (up to 5 seconds) that occurred during the the first sentence, and in the way the interviewer was addressed: with a generic “you” for White man, or woman, for that matter. Another participant explicitly linked her resistance to “supposedly healthy” lifestyle activities to her experiences in residential schools where she felt “manipulated to the point” of not having a mind of her own. She went on to say, “You come out of that system and then you find yourself, well, there’s no way anybody is gonna tell me what to do anymore. I’m my own person now.” The resistance to having her life managed by Western medicinal rule systems, even if many of the front-line health providers were Aboriginal themselves, was echoed in other participants’ stories. One woman described herself as a “product of the residential school”; she explicitly framed her heart problems as an additional form of control and colonization: P: I found that it took control of me. I didn’t, I— I: What took control of you? P: The heart condition. And I hated that. I had to be in control. The Whites win again.

Even though many of the women felt this way, it is surprising that out of the 16 women interviewed and informally assessed, 7 nevertheless said they tried to make some changes (most commonly reducing smoking), and 2 reported living relatively heart-healthy (one of these appeared to do so even before she became aware of her heart problem). Seven, however, said they made no or nearly no changes after they became aware of their heart problems. Many mentioned they found the recommendations unreasonable given the economic realities they were living: You know, it’s great for people to say, well, this is how you’re supposed to eat. Well, where the hell are you gonna have the money to eat like that if you have other children to look after? Especially in the First Nations community when most of the people, like in the community there’s like ninety percent unemployment. So your welfare check only comes once a month. What are you going to do in between?

Sociocultural Context In this section, we take a closer look at the sociocultural context in which the women experienced their lives and heart problems. All of the participants took a broad communal stance. Their stories were social stories navigating demanding, hectic, sometimes chaotic lives that revolved around their efforts to care for their families and communities, and for themselves. Many narrations dealt with the stress and distress associated with being responsible for other people without receiving adequate support and appreciation. At the same time, however, they also spoke of the strength and resilience these activities afforded. One participant described her sense of responsibility when she addressed crime in her community: P: People are saying like, it’s time somebody did something about it [crime], because there was nobody doing anything about it. I had to do something, be responsible. I: How is it you’ve taken on this responsibility? P: Because nobody else will do anything about it, and somebody has to. It’s like they’re afraid, you know. . . . But I’m a very emotional person, too, you know, I, I don’t know, I cry lots, when I get emotional. But I do get my point across, I guess. It hasn’t been easy.

This “responsibility,” we can imagine, had not been particularly easy on her heart condition. However, there were times when we felt she enjoyed her social and communal responsibilities, garnering a sense of satisfaction from them; after all, they were activities she could do that others could or did not. Other participants told us similar


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Medved et al. stories on different fronts. The majority of the women emphasized that they were conscientiously taking care of their own children and grandchildren, as well as of foster and/or adopted children, many of whom had developmental disabilities such as fetal alcohol syndrome (FAS): Sometimes I tell them Grandma’s really, really in a bad mood and she needs a time out, and I’m going now. I go and shut the bedroom and thirty seconds later: “Can we come in?” Their behaviors . . . I have to say that all of them are alcohol- or drug-affected. And that makes it really hard. But, my youngest daughter, we adopted her, she was FAS. That’s how she was diagnosed. Now she’s done that to her own two kids. I understand it in my head but my heart doesn’t. Like how you could do that when you know what’s it done to you. I’m raising three children, three grandchildren. People said, well, why would you take other kids that are affected? Well, somebody has to love them.

Although taking care of so many children, and so many troubled children, no doubt was stressful, it was also perceived as extremely meaningful. The mainstay of the women’s narratives was on the care and attention they gave to others, providing a backdrop to understand why living a heart-healthy lifestyle turned out to be so difficult. Overall, most women felt they were left on their own to bear the burden of family and community, with little or no support from men: He’s [her partner] no frigging help because I feel like I’m responsible for like, everything—the bills, the food. It seems like women seem to carry the brunt of everything. Like my role, my partner stays home, looks after our daughter, which is really, really good. And we care for two foster children, too. And, but I still feel, because I’m working, I don’t get enough rest. It’s like I play the role of dad, mom, the caregiver, the worker, everything.

These women made clear it was double, if not multiple, duty to not only take on the traditional roles and responsibilities of women but also the roles and responsibilities of men. Yet at the same time, the forceful way they talked about it suggests a sense of strength and selfesteem; sometimes even pride: I’m better than a man. I could do anything a man can do. Except stand up pissing, but although I could probably do that too. A woman keeps the family together, a woman brings her kids up. It’s very seldom you’ll find a man helping to bring up the kids. I find men a lot weaker than women. Not physically, but mentally and spiritually. . . . I don’t want to sound like I’m beating up men, it’s just, you know, I love men, don’t get me wrong. Um, and I feel that we are equal partners, but I find they can’t put up with a lot like women can.

As illustrated by the extracts, many women positioned themselves as more than adequately endowed to take on the responsibilities of family and community activities that the men would unlikely be able to endure. In taking on these multiple responsibilities, the women appeared not only as strong to themselves but also to others, as in these forms of self-referential positioning: I: If I ask one of your seven children, “How does your mom deal with her heart problems?” what would they tell me? P: They [laughs]. I don’t know what they would tell you. They’d probably say my mother is a strong person. They’d probably say she is a kind person. They would probably say I’m always there for people.

Conspicuously absent from the above response are concerns about rehabilitation activities such as exercise and diet. In all her stories, the participant seemed to ignore the heart issue altogether. We found this silence (in a different vocabulary it would be called denial or repression) in most of the stories we examined. Even if the women were very conscious of their heart problems, the problems were not positioned as an important theme in the stories they told us. If they were addressed at all (e.g., when we brought up the issue explicitly), they were presented as one more life difficulty, but one it would be unwise to concern oneself with too intensely: “If I started to think about my broken heart, I wouldn’t be alive now.”

Discussion Whereas every woman’s story about her heart was unique, there were nevertheless many commonalities across their narratives. One was the way most heart stories began. Like many indigeneous mythological accounts, they seemed to tie the past to the present reality by binding themselves to their ancestors (Cruikshank, 1998), or at least to recent ancestors, because heart disease is relatively new to Aboriginal communities. In this way heart problems appeared to be localized in a spatial and temporal context broader than that of each woman’s individual life, reflecting, perhaps, a sense of communal connectedness. One effect of these plotlines was to give heart disease a semblance of givenness and inevitability. In their stories, the women did not indicate a split between their preand post-heart-problem life. Instead, they emphasized a sense of continuity, as if heart problems had just been handed down to them. Perhaps this sense of givenness partially explains why many of the stories did not include typical risk factors. Given that many of the stories were plotted in a way that made suffering from heart


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difficulties appear inevitable, we found it remarkable that the women nevertheless claimed to be stunned to learn that they had developed cardiac problems. When explicitly asked about this inconsistency, they seemed to insinuate that others’ dependence on them would inoculate them against serious sickness.

Healing Traditionally, Aboriginal people viewed spirituality as a crucial component of coping with illness and stress; it was understood as facilitating a sense of balance and selfrecognition (e.g., Iwasaki et al., 2009; Walters & Simoni, 2002). Today however, most indigenous communities in Canada are removed from these practices as a consequence of Western colonization. Traditional spiritual orientations often coexist in combination with Christian beliefs or have been lost altogether (Iwasaki, Bartlett, & O’Neil, 2005; Kenny, 2006). Given this background, and along with the fact that there were no traditional ways to deal with “modern” cardiac diseases, it is not surprising that the women’s stories gave very few glimpses of traditional modes of healing. We took this as echoing that these communities had long given way to Western views and beliefs that were forcibly imposed on them. Many of the women seemed astonished when we broached the prospect of incorporating an indigenous healing stance, whether narrowly or broadly spiritual. Moreover, the women suggested that their dissociation from Aboriginal traditions and spirituality was not least related to their busy lifestyle—a lifestyle that did not allow them the time, energy, and perseverance required to carry out and benefit from traditional holistic practices. Traditional healing, both in its more medicinal or spiritual dimensions, demands a comprehensive commitment to a way of inhabiting the world that the women said was no longer accessible to them. Many women felt that Christianity was simply more easily available and thus could be used as a kind of spiritual alternative in coping with their sicknesses. In contrast to claims in much of the literature on indigenous issues, the participants in our study did not mention that they wanted more access to traditional cultural practices; instead, they were more interested in informal support to deal with everyday life hassles. There was, however, strong faith in the efficacy of pharmaceuticals. As already highlighted, heart disease is a highly medicalized disease, and taking medications fits seamlessly within this biomedical framework. Interviews indicated that the participants were pleased to talk about taking medication (although we were unable to confirm whether they really took their medications as prescribed), perhaps because it was an opportunity to demonstrate that in the midst of their chaotic lives they were, after all, still

engaged in addressing their individual heart problems. Taking medication was a goal that seemed to be achievable. This was in stark contrast with how many women perceived behavioral recommendations regarding their “cardiac lifestyle”: as an assault on their autonomy and, more than that, as part of an ongoing colonial process. They strongly resented being told how to live; some individuals remarked that the recommendation protocols reminded them of their former experiences in residential schools, where they were forcefully stripped of their cultural and personal identities. In spite of this, more than half of the women (which nevertheless is a low number) pointed out that they would like to accommodate elements of a hearthealthy lifestyle, but also spoke of the “nonsense” and “absurdity” of some recommendations, such as trying to eat heart-healthy on extremely limited funds. We found these comments more than plausible. A number of participants were in a financially precarious position, and the possibility of incorporating heart-healthy suggestions would have meant a substantial commitment that was neither possible nor realistic.

Sociocultural Context Research on diabetes, conducted in the Opaskwayak Cree Nation in Manitoba and two Anishnaabe communities in Ontario, found that health care providers attributed diabetes to individual lifestyle factors and thus undergird personal responsibility, whereas individuals in the community viewed diabetes as being rooted in collective and historical experiences and tied to a sense of powerlessness (Bruyere & Garro, 2000; Sunday, Eyles, & Upshur, 2001). In our study, we did not explore narratives of health care providers, but as far as the participants were concerned, there was no such sharp division between the biomedical and collective cardiac narratives. This being said, however, there was no doubt that heart discourses were tied to colonialism, powerlessness, and bodily manifestations of stress. Despite this frame of collective memory, the narratives of all women were highly individualized in the way they dealt with their cardiovascular problems. Rather than referring to their problems in generic terms of illnesses that were shared or dealt with as a family or community, they talked about their heart problems as personal events. In giving special weight to their individual feelings and particular ways of dealing with their ailments, their intention was, we felt, not to burden others with what they called their “broken hearts.” At the same time, their stories were replete with strong indigenous themes, motifs, and implications, not least being how the emergence and maintenance of cardiovascular disease were understood. Likewise, the women


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Medved et al. spoke about gender roles and identity imbalance as specific phenomena within their Aboriginal communities. As noted in the literature on gender and Aboriginal culture, many men have experienced a disjuncture between their traditional roles and the limited opportunities currently available to them, whereas women have experienced what has been called “role strain” because of their taking on too many tasks (Kirmayer, Simpson, & Cargo, 2003). The grandmothers in our study are a case in point. Their stories about “role strain” contained telling examples of the difficulties of providing financial support, maintaining their home, sustaining organizations that support community well-being, and engaging in political struggles for the empowerment of their people. Many grandmothers described men as unreliable and unable to help them with these tasks. It is interesting, in this context, that they also struggled to continue with their particular “life-stage role” (Anderson, 2011), that of the grandmother being “in charge.” With the onset of colonization, traditional community arrangements that gave great importance to the role of grandmothers, often in connection with that of elders, were broken (Settee, 2011). Irrespective of these structural challenges, in their stories the grandmothers were presented as active, caring, and competent protagonists in their children’s, grandchildren’s, and foster children’s lives. Despite the challenges to the once powerful and influential position they kept in Aboriginal communities, the grandmothers we interviewed seemed to be de facto reclaiming these qualities. As stressful as taking on multiple new roles and reclaiming old ones was, it also appeared to provide the women with a sense of public meaning, strength, and resilience.

Applications In Australia, Aboriginals begin to suffer from heart disease 20 to 30 years earlier than non-Aboriginals (Brown, Warren, Lea, & Tonkin, 2005). This age differential was also revealed in our study, in which the average age of the women was 52 years—in contrast with 71 years for Canadian heart sufferers (Canadian Institute for Health Information, 2011). Clearly, more work needs to be done to curb this cardiac inequality. Based on the stories we heard, we offer some recommendations. Many of the participants were unaware that there are unique heart symptoms for women (Stoney, 2003) and for Aboriginal people (King, Khan, & Quan, 2009), and they underemphasized the dangers of high blood pressure. Nor were they clear about the close relationship between anxiety and heart disease, an especially important topic because panic attacks can be heart problems in disguise in postmenopausal women (Smoller et al., 2007). We believe

that it is paramount to provide Aboriginal women with additional information on these topics. In addition, health messages need to focus on positive and achievable goals. As the participants noted, taking medication, for example, was at least something they could successfully achieve. As Taylor and colleagues (2010) stated, information regarding Aboriginal cardiac health frequently emphasizes the negative and is often fear-based; it thus tends to create a special form of learned helplessness. This might conceivably have contributed to the sense of inevitability conveyed in the stories of many women. Traditional healing practices encompassing sharing circles, sweat lodges, smudging, and artwork that include family and community rather than individual, illnessbased treatments have been repeatedly demonstrated to be associated with positive health outcomes for Aboriginal people (Hunter, Logan, Goulet, & Barton, 2006; Newman, 2009; Stefanich et al., 2005). Even though the women who participated in our study did not explicitly claim that cultural practices would facilitate their health and, in fact, often turned to what seemed to be pure Christianity, the social and community aspects of these approaches rang true in many stories we heard. One very practical recommendation for healing programs and the promotion of cardiac health, therefore, might be to develop communal programs (like gardening or other community activities) instead of asking people to buy healthier foods, which might be unaffordable anyway. These programs are not only conducive to health and vitality, but might also be experienced as culturally relevant. It is important to note once again that the women did not actually say they wanted more traditional cultural activities; what they wished for—and there might be a gender component here—were “bread-and-butter” things such as support in dealing with their everyday stressors. Such support might take the form of providing interventions based on, for example, Walters and Simoni’s (2002) “indigenist” stress-coping model, whereby “culturally relevant coping strategies” are offered. This might also moderate or buffer the vulnerability of Aboriginal women to heart disease. There are more ways to support the women in their quest for health. None of those who participated in the present study attended a formal cardiac rehabilitation program; all appeared to get their information primarily individually. We are not necessarily recommending a full-time intervention like Traditions of the Heart, a 12-week program developed with Aboriginal people in Alaska (Stefanich et al., 2005). Yet, as the women in this program seemed to have especially appreciated the social environment of the group intervention format, we believe this could also be of significance for the women we interviewed. A social format might serve to counter


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participants’ experience that recommendations serve as a further colonialist means of control. Moreover, health promotion that is less top–down would create more opportunities for discussion and mutual support. Such social groups might also allow for more Aboriginal cultural practices. The Native Nutrition Circles program is a good example; it includes traditional stories through which health-relevant knowledge is shared (Hodge et al., 1999; Loppie, 2007). A next step would be to cast entire heart-healthy promotion messages in narrative form. Typically hearthealth messages and interventions are based on principles, guidelines, and rules. Especially for people from Aboriginal cultures it seems important, however, that complex messages relate to the rich storytelling traditions of many First Nation communities. This is particularly appealing from a public health perspective because stories have the capacity to attract people by holding their imagination (Phoenix & Smith, 2011).

that the people we worked with were fully aware of the long history of colonialism. English is the language of colonialism; it also is the language of the academic apparatus that, often enough, has been viewed as assuming the role of an inquisitor (Rosaldo, 1986). Moreover, there are a number of profound linguistic differences between Aboriginal languages and English. For example, languages like Cree and Anishinaabe tend to be organized around verbs, whereas English (let alone medical English) is noun-focused. Conducted in the original language of the women, the narrative interviews might have been more detailed as well as more process- and activity-oriented. Some women, however, could not speak their traditional language and thus would have been excluded from the study if it had been conducted in the Aboriginal language. The best way to tackle these difficulties would have been to use a mixed-language approach, whereby the women could have selected the language in which they would prefer to participate.

Limitations

Concluding Remarks

The findings of this study need to be considered within the sociocultural and local contexts in which the research was conducted. First, the participants were from two Canadian First Nations who lived on reservations with year-round accessibility to an urban center. We should not preclude the possibility of diversity among Aboriginal women from other locations and First Nations. Women from remote communities or from urban centers are likely to have different heart stories to tell. A second limitation is that a White interviewer conducted the interviews. We suspect that the women likely foregrounded aspects of their heart conditions that they deemed most appropriate to tell a person who was viewed as representing the medical realm. This might also explain why their narratives initially resembled a medical history. As Medved and Sinclair (2010) have pointed out, narratives that emerge in such an interview context can also be conceived as a response to the whiteness of the interviewer, which might have elicited a combination of historically grounded distrust in research and an effort by the women to say what they believed a White person wanted to hear. Conversely, the White interviewer, in a desire to be culturally sensitive, might have “othered” the participants by expecting non-Western stories and concepts. Although we took numerous steps to minimize the above experiences, we take them to be inseparable aspects of the narrative-discursive interview context and thus of our findings. Last, the interviews were conducted in English rather than in the participants’ native language. We mentioned

Previous research has suggested that Aboriginal people only seek treatment when symptoms of heart problems are obvious (Garro, 1988). Although there might be an element of truth to this, the stories we investigated reveal a more multilayered and complicated reality. In contrast to the above observation, the women’s narratives were full of inconsistencies and contradictions that made it clear that things were not so straightforward. Getting cardiac disease seemed to be inevitable, but the women were surprised when they discovered their own heart problems. They resented heart-healthy recommendations, but nevertheless did what was possible. They suffered individually so as not to burden others, yet viewed heart disease as a social issue resulting from community imbalances in the wake of colonialism. They experienced themselves succumbing to gender roles, yet derived a sense of strength and resilience from the responsibilities they had taken on. Then again, the incongruences of their heart stories are perhaps not so surprising, considering that these Aboriginal women were living in the full sense of the word the contradiction called White man’s disease. They occupied a sort of cardiac no man’s land (or better, no woman’s land) of which the contradictions and ruptures of their stories speak in a compelling fashion. Acknowledgments We thank Rita-Lynn Emerson, Kevin Fontaine, Stephanie Sinclair, and Leslie Spillet for their help in facilitating our research. We also gratefully thank the participants for sharing their stories with us.


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Medved et al. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by a University of Manitoba Research Grant.

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Author Biographies Maria I. Medved, PhD, CPsych, is an associate professor in the Department of Psychology at the University of Manitoba in Winnipeg, Manitoba, Canada. Jens Brockmeier, PhD, is a senior scientist at the Free University, Berlin, and a visiting professor at the University of Manitoba, Winnipeg, Manitoba, Canada. Judy Morach, BN, RN is a mental health nurse at the Northern Health Region Mental Health Promotion Program, The Pas, Manitoba, Canada. Lori Chartier-Courchene, BN, RN, is a community health nurse at the Sagkeeng Health Centre, Sagkeeng, Manitoba, Canada.
