‘In a perfect world doctors and the medical profession would accept people for who they are’: women’s heart health information practices

Introduction

Heart disease is a woman’s health issue (McCormick and Bunting, 2002). In North America, heart disease is one of the leading causes of death for women, far exceeding breast cancer mortality despite the persistence of many women (including young adults) believing that they are at greater risk of dying of breast cancer (Anderson et al., 2013; Munoz et al., 2010; Statistics Canada, 2022; Wingo et al., 2000). The Canadian 2018 Ms. Understood Heart & Stroke report on women and heart disease notes that many women continue to be unaware of heart disease as a leading cause of death, the signs and symptoms of cardiovascular disease, how heart disease affects men and women differently, and the significant gendered differences in treatment and care (Heart & Stroke Foundation of Canada, Ms. Understood, 2018). Not only are a majority of Canadian women unaware of risk factors associated with heart disease, but they also underestimate their own risk (McDonnell et al., 2014).

Cardiovascular health and disease information and messages aimed at women exist in a sociocultural context in which a wide array of media sources (e.g., Internet, news, magazines, etc.) shape women’s beliefs, awareness, attitudes, and knowledge about heart health and their perceptions of risk factors and prevention (Gonsalves et al., 2016; Turner et al., 2008). Attempts at more ‘responsible’ and consistent messaging about women and heart health have come from large organizations such as the Heart & Stroke Foundation’s The Heart Truth campaign. The purpose of the campaign was educational: encouraging women to understand their personal risks for heart disease, the symptoms of heart disease, and prevention strategies, and to encourage behavioural change: consulting with their physicians, eating well, and engaging in regular exercise (Gonsalves et al., 2016). Similarly, one of the objectives of the American Heart Association’s Go Red for women campaign was to increase women’s awareness of women’s atypical heart attack symptoms (Fukuoka, Lisha, and Vittinghoff, 2017). Given the considerable investments into heart health promotion campaigns aimed at women there is a need for continued evaluation and more research into their effectiveness (Keselman et al., 2008; Leavy et al., 2011; Mozaffarian, et al., 2012).

Research problem and statement

Heart disease as it relates to women is a multi-faceted, information intensive health issue. Women need to consider and negotiate epistemic, social, and corporeal information within an androcentric social context where heart disease continues to be treated as “a man’s disease” by medical professionals and the public, where women’s bodies and behaviour are monitored by others, and where there are high expectations that women strive toward “ideal” health standards whether they have heart disease or not. This exploratory study frames heart disease as a woman’s health issue and asks: what are women’s information practices as they relate to (1) heart-health information and health promotion messages from the Heart Truth campaign specifically, and (2) as they interpret, negotiate, evaluate, and experience general heart health

In order to understand women’s information practices, we draw particularly on Bonner and Lloyd’s (2011) work on the epistemic, social, and corporeal as important information sources. The contribution of this work to the field of information science research is threefold. First, women’s experiences of heart disease present an information-intensive site that invites a deeper understanding of the expertise and knowledge (epistemic information), embodied information (corporeal), and the broader social context (social information) that shape women’s information practices. Second, this information environment allows for an examination of how epistemic, corporeal, and social information sources intersect and are entangled in women’s heart health information practices. Third, this study is underpinned by the recognition that the information context of heart disease continues to privilege an androcentric approach where men’s bodies and points of view are centred. Consequently, the information context (i.e., the interrelated conditions in which information practices occur) presented here: women and heart disease, opens up the possibility for considering this information context from a perspective other than an androcentric one.

Literature review

Gender, heart disease, and sociocultural context

Heart disease is a feminist issue because women’s experiences of heart disease, including diagnosis, treatment, and rehabilitation, are shaped by social constructions of gender and androcentrism (Galick, D’Arrigo-Patrick, and Knudson-Martin, 2015; Moser, McKinley, Dracup, and Chung, 2005). Cardiovascular health research has been dominated by the medical paradigm which minimizes contributing factors to women’s experiences of heart disease such as socioeconomic status and the patriarchal paradigm that minimizes women’s experiences of heart disease by upholding men’s experiences as the standard (Young and Higgins, 2010). An androcentric approach to heart disease negatively impacts women in the following ways: women seek treatment when heart disease is more advanced and more severe compared to men, their reports of pain can be dismissed or disbelieved by others including family members and healthcare providers, and they are often undertreated and underdiagnosed, leading to poorer outcomes (Biddle et al., 2020; Brewer, Svatikova, and Mulvagh, 2015).

Furthermore, women tend to have less social support when dealing with heart disease, they are more likely to drop out of cardiac rehabilitation programs, and to experience depression, sleep disturbance, anxiety, and a greater decline in quality of life (Galick, D’Arrigo-Patrick, and Knudson-Martin, 2015).

Despite being one of the leading causes of death in women most medical care for cardiovascular disease is based on clinical trials performed with men as the most prominent participants (Johnson et al., 2003). In addition, Adams et al., (2008) found that all doctors, regardless of their gender, were more attuned to age and age-related illnesses as it pertains to heart disease when their patients were men. Among patients with acute coronary syndromes (decreased blood flow in the coronary arteries such that the heart muscle is unable to function properly), women are less likely to receive guideline recommended therapies compared to men and women with atherosclerotic cardiovascular disease reported poorer patient experiences than men, lower medication and statin use, and lower overall perceptions of their health (Okunrintemi et al., 2017).

There is a persistent divide regarding women’s health and cardiovascular care compared with men, with some calling for understanding and treating heart disease in women as distinct and separate from men because the type of heart disease that women typically have, the symptoms, and treatment are different (Westermen and Wenger, 2016). In addition, transgender adults have significantly higher risk factors for heart disease due to social stress, health disparities, and lower socioeconomic status although they tend to have lower morbidity due to their younger overall age (Alzahrani et al., 2019).

The intention of many heart health educational and awareness campaigns aimed at women are to address some of these disparities, offer prevention strategies, provide support, and to solicit donations to support research on women and heart disease. Research indicates that these campaigns are successful in complicated ways. For example, a paper reporting on the rate of heart disease awareness as the number one killer of women in the U. S. over a 15 year-period from 1997-2012 showed an increase from 30% to 56% for white women. For Black and Hispanic/Latina women the rate of awareness increased from 15% to 36% and 20% to 34% respectively (Mosca et al., 2013). Findings indicate that these campaigns are falling short in reaching and addressing Black and Hispanic/Latina women, even though they experience greater health barriers and have worse outcomes than white women. In addition, a study (Clark et al., 2018) analysing multimedia data collected from the Heart Truth campaign content on the Canadian Heart & Stroke Foundation’s website and other media sources found that women’s experiences of heart disease are often framed according to acceptable feminine roles such as care-giving and nurturing. These media emphasize ‘good mothers’ as successful survivors. Another study (Gonsalves et al., 2019) analysing the discourses emerging from social media (i.e., Twitter) and the Heart & Stroke’s #MoreMoments cardiovascular awareness campaign (aimed at women) found two identity or subject positions: ‘visionary leaders and successful survivors’ with successful survivors constructed as affluent, heteronormative, and white. Furthermore, the #MoreMoments campaign identified the ways in which people’s engagement served to promote the corporate goals of Heart & Stroke such as fundraising and within

the discourse of tragedy and loss, women’s CVD [cardiovascular disease] prevention was promoted as dependent on gatekeepers who control women’s lives and protected their families from inescapable danger to their own bodies (Gonsalves et al., 2019, p. 9).

While recognizing strides made in identifying sex and gender differences in heart health and disease, media portrayals of heart disease continue to be presented as a ‘man’s disease’ where ‘treatment of heart disease is portrayed as ‘efficient’ for men and ‘women are portrayed as difficult to treat, with problematic, postmenopausal bodies’ (Champion et al., 2016, p. 1242). Media stories about heart disease often emphasize it as being under a woman’s control while de-emphasizing broader social contexts and environmental factors (Champion et al., 2016). Women who do not conform to healthy ideals and heteronormative norms of femininity can be characterized as ‘deviant’. Furthermore, women of different socioeconomic status, racial and ethnic backgrounds, and younger women were largely excluded from Canadian media portrayals of women with heart disease (Berry et al., 2015).

Hence, heart disease is a feminist issue in that there are attempts to disrupt the androcentric view of heart disease by ensuring that women receive the same level of treatment and care as men, that women receive appropriate treatment (which differs from men), that the experiences of women are believed, and that societal expectations of women to conform to “ideal” bodies change (Rolls and Young, 2012). Furthermore, sociocultural contexts can make it difficult for women to relate to or incorporate heart health information to their own experiences and understanding of heart disease. The educational and behavioural change objectives of these campaigns (i.e., knowledge translation) are predicated on women believing the message applies to them as individuals (e.g., lifestyle) and within their social contexts (e.g., group membership and worldview), that they understand the content of heart disease information and messages, and that they have the resources and ability to act on the information or message.

Health information practices and epistemic, social, and corporeal information

A growing body of research examines information practices in a health context. Indeed, McKenzie’s (2003) model of information practices emerged from her analysis of the ways in which women pregnant with twins negotiate cognitive authority and authoritative knowledge by drawing on their experiential knowledge and expertise. Particularly relevant to this study is the work of Tuominen (2004) who analysed the interpretive repertoires invoked by heart surgery patients and their spouses to understand the ways in which their information practices conform to moral discourses such as self-sufficiency and compliance that demonstrate ‘correct’ health behaviour.

Women are much more likely than men to engage in self-directed health information seeking (Case, 2007; Manierre, 2015; Warner and Procaccino, 2004; Wellstead, 2011). Importantly, Manierre (2015) notes that health information seeking is based upon social constructions of gender that often entail women enacting the caregiver role, understanding their bodies through a medical (and often essentialist) lens (e.g., menstruation and pregnancy being pathologized and therefore requiring medical interventions or treatment), and they are socialized to be attuned to their bodies more than men (e.g., healthy lifestyles and weight management) (Bar-Ilan et al., 2006; Genuis, 2015). Women’s information practices are shaped and informed by a broader sociocultural context of heart disease as a woman’s health issue and the attendant discourses and social constructions of gender that shape women’s interactions with health information, diagnosis, and treatment. In addition, information practices are shaped by specific, individual contexts in which women with and without heart disease may encounter, need, seek, share, or use heart health information.

Lloyd (2007) suggests that when the body is made visible in information interactions there is a move ‘away from the Cartesian mind/body split’ . Lloyd (2014) notes,

the centrality of the body in the co-construction in understanding the information experience. The body should not be viewed as a container but as an ever-present site of embodied and experiential knowledge (p. 85-86).

In their study of the health information practices of people living with chronic health conditions, Lloyd, Bonner, and Dawson-Rose (2017) note that the epistemic, social, and corporeal [emphasis mine] are important information sources. Cox et al. (2017) highlight two aspects of embodied information: ‘how we receive information from the senses and the way the body is a sign that can be read by others’ (p. 400).

This dual conception of the body is taken up in Webber and Wella’s (2018) study of serodiscordant couples (the mixed status of couples where one partner is infected with HIV and the other is not) and found that their own bodies and that of other people played an important role in understanding HIV/AIDS information.

In this current study, women’s bodies act as corporeal information sources where sense-making occurs in the presence or absence of heart disease symptoms, genetic history, stress, responses and side effects of medication, and rehabilitation among other things (Bonner and Lloyd, 2011; Gambling, 2003). Women’s bodies are read by others (e.g., social information source) such as healthcare providers and family. ‘Other’ bodies are often invoked to make sense of heart disease information including bodies presented or referred to in heart health campaigns (e.g., ‘ideal’ bodies that do not have heart disease or that survive heart disease) or in medical discourses about heart disease where women’s bodies are presented as problematic or overweight.

Heart disease is situated in a complex sociocultural context for women whether they have heart disease or not. For women with heart disease, their individual contexts are information intensive: needs are continuously changing in response to diagnosis and treatment (e.g., re-adjusting one’s lifestyle after surgery) and uncertainty and affect shape their information needs, seeking, and use (Sairanen and Savolainen, 2010).

Women who experience heart disease must consider social sources of information including doctors, nurses, cardiologists, rehab medicine, family, and friends, and are informed by broader social discourses from heart health organizations about what constitutes a ‘good survivor’ for example, and moral discourses about heart disease and health (Tuominen, 2004). Women with and without heart disease are often exposed to or seek out heart-health messages and information about prevention, risk factors, and making lifestyle changes via media such as the Internet, radio, TV, magazines, newspapers, healthcare providers, and patient education brochures (Gonsalves et al., 2017; Tovar and Clark, 2013).

Even ‘less effortful information exposure [such as information scanning] has the potential to influence an individual’s health behavior’ such as passive exposure to media reports, news coverage, messaging, and campaigns from heart health organizations (Jensen et al., 2017).

Other information practices evident in healthcare include people not always actively seeking health information or actively avoiding health information for a wide variety of personal and practical reasons (Ek and Heinstrom, 2011; Johnson, 2014; Johnson and Case, 2012). People exert control over the conditions under which they receive health information in order to manage uncertainty, establish and maintain boundaries in situations where information may be unwanted, to maintain hope, to enable them to continue to engage in regular life activities, and to avoid fear (Barbour et al., 2012; Brasherset al., 2002; Miller, 2014; Case et al., 2005; Nelissen et al., 2015). Or as Huismanet et al. (2020) note, people deliberately do not share health information because they do not want to be defined as ill or to avoid information overload.

At the same time, psychology experiments on automatic responses indicate that avoiding health information can be automatic, uncontrolled, and unconscious rather than deliberate and controlled (Howell et al., 2016). Barbour et al. (2012) argue that health information avoidance is common, situational, and importantly, is not necessarily unhealthy and indeed may be helpful for people who wish to accomplish several communication goals.

While much research has focused on health information practices, less attention has been paid to the intersections of the broader sociocultural contexts that shape and inform these health information practices. Fourie (2010), drawing on a range of information behaviour literature and particularly Courtright’s 2007 review of context, notes that conceptualizations of context have included 'frameworks for meaning and reference', it has been viewed as context-as-container where the container serves as backdrop to information behaviour, and that context can be interpreted 'as person-in-context and socially constructed context'.

In order to understand women’s health information practices, we examine how the sociocultural contexts of women and heart disease are shaped by androcentrism and intersect with Bonner and Lloyd’s (2011) focus on the social, epistemic, and corporeal as information sources. We do so by exploring women’s information practices as they relate to heart-health information and health promotion messages from the Heart Truth campaign by the Canadian Heart & Stroke, and as women interpret, negotiate, evaluate, and experience heart health information.

Methods

Setting

Women with heart disease and women without heart disease were invited to participate in this research. Heart-health information, messages, and campaigns such as the Heart Truth are concerned with education, behaviour change, and prevention and are aimed at women with and without heart disease. In addition, our pool of potential participants with heart disease was small (i.e., 25 possible participants). Women with diagnosed heart disease were recruited using the province-wide APPROACH (Alberta Provincial Project for Outcome Assessment in Coronary Heart Disease) database. The APPROACH database contains clinical information on Albertans who undergo catheterization and treatment for coronary artery disease (122,000 records) and has been active since 1995. We had access to a list of 25 women who had agreed that they could be contacted for possible participation in research for up to two years' post-treatment and who lived in the Edmonton, Alberta area. Edmonton is a centre of cardiac care in the province with a number of hospitals, rehabilitation programmes, and institutes where many Albertans receive treatment for heart disease. Ethics approval for this study was obtained from the University of Alberta research ethics board

Selection and description of participants

We contacted twenty-five women from the APPROACH list to participate in either focus groups or interviews nine of whom participated in focus groups and three agreed to interviews. Women were given the option of attending a focus group or participating in an interview in order to accommodate those women who were unable to attend the focus group. Women without heart disease were recruited from a popular senior centre located in Edmonton. The senior centre was selected because there are increased risks for heart disease as women age, heart disease information may be particularly salient to this group, and the average age of this group was comparable to women who had experienced heart disease and were recruited from the APPROACH database. Twenty-one women were recruited from the Senior Centre in Edmonton. In total, 33 women participated in this study. All but one participant identified as white. All participants were asked to peruse the Heart & Stroke website prior to the focus groups or interviews and Heart Truth campaign print materials were brought to the focus groups or discussed over the phone for interviews.

Data collection

Focus groups have been used in research in order to understand how people respond to health information and to help develop effective strategies and messages to encourage positive behavioural change (Jones, 2010) which aligns with the current study questions and objectives. Two focus groups were conducted with women (45–89 years; average age 72) with heart disease (N = 3; N = 6).

Three semi-structured telephone interviews were conducted with women who could not attend the focus groups. Focus groups lasted 60-90 minutes and interviews lasted from 45-75 minutes. In total, twelve participants had experienced heart disease in the last two years. The interview participants were asked the same questions as the focus group participants. Three focus groups were held for women (63-90 years; average age 75) without heart disease (N = 8; N = 6; N = 7). The questions asked and topics covered in all of the focus groups (including women with and without heart disease) and interviews were the same with one exception. Women with heart disease were asked ‘What information or information sources, if any, were important to you after you were diagnosed?’ Other topics discussed included asking women where they would seek information on heart disease, how they decide what information is best, how they keep their heart healthy, and their perceptions of heart-healthy messages from the Heart Truth campaign.

Data analysis

This analysis uses a constructionist approach (i.e., that meanings are socially produced and reproduced) to understand the ways in which women perceive and respond to heart-health messages (e.g., the Heart Truth campaign), general heart health information, and sources of information (e.g., people, one’s body, the media, the Internet, etc.). The focus groups and interviews were recorded and transcribed, imported into NVivo for analysis, and inductive thematic analysis was used to analyse the data. Braun and Clarke (2006) describe six stages of thematic analysis (that are not linear but rather recursive and ongoing)—familiarity with the data, coding, building themes, reviewing themes, defining and naming themes, and writing up the results. Notes and labels (themes) were assigned to the data and then compared for similarities and dissimilarities in order to cluster common themes and ensure that they were closely connected to the primary data. The themes that emerged are: personal expertise and experiential knowledge, consistency of information content (epistemic information sources), embodied information (corporeal information sources), shame and blame (social information sources), and acting on information (combined information sources).

Findings

Epistemic information sources

Women negotiated heart health messages and information that they received from a variety of sources including healthcare professionals, family, friends, the media, and the Internet in terms of their own knowledge, experiential knowledge, personal expertise, and by finding consistency across information sources. The act of negotiating allowed women to accomplish several actions: confirming their knowledge, validating their experiences, advocating for themselves, and potentially resisting or countering the (largely unspoken) expectations placed upon them or assumptions about them informed by an androcentric information context.

Personal expertise and experiential knowledge

Women verified and negotiated heart health information by invoking their personal expertise and experiential knowledge even when that information was provided by a healthcare expert. ‘The information that I’ve gotten from my doctors is nothing that I haven’t heard before’ (woman with heart disease, focus group, [age] 74). Despite being treated for heart disease (two stents were placed in her heart), during her treatment and in her everyday life, the participant quoted above continued to negotiate and assess professional information, advice, and knowledge with her personal expertise. Similarly, the following participant drew on her professional expertise in the healthcare field to challenge medical information:

I am able to advocate. If it doesn’t make sense to me, you can’t convince me… one specialist I said ‘You’re doing that by assumption. What scientifically can you tell me why it’s that way… I do not believe that diagnosis’ (woman with heart disease, focus group, 65).

This participant was a retired nurse and her understanding of and expertise with the healthcare environment enabled her to challenge the healthcare practitioner’s diagnosis and trust her own personal and professional knowledge. Similarly, others approached information and expertise from healthcare professionals with cautious scepticism: ‘It’s not often that I don’t believe my doctor but sometimes not everybody graduates at the top of the class’ (woman without heart disease, 74, focus group). This participant gently questions her doctor’s ability to ‘enable’ or ‘transfer’ knowledge and questions the quality of the doctor’s knowledge. She is not a passive recipient of knowledge transfer or an ‘empty bucket’ to be filled with information (Dervin, 1983).

Consistency in information content

In addition, several participants noted that information must be consistent across multiple sources in order for them to deem it as credible. ‘My physician may give me some information but then I do research to find consistency’ (women without heart disease, focus group, 77). Another participant stated: ‘I’d check the Mayo Clinic and Heart & Stroke and see if they said the same thing [as my doctor]’ (woman without heart disease, focus group, 82). Another participant indicated that re-reading or re-engaging with known information can be comforting.

I have all this information [Heart & Stroke messages] but then just the reminder, I find it’s good for me even though it’s the same [information] and I have read it (woman with heart disease, focus group, 45).

The first participant does not indicate what ‘research’ entails but indicates her efforts in finding information that supports or aligns with what she receives from her doctor, the second participant cites trusted health information sources such as the Mayo Clinic, and the third highlights the affective dimensions (e.g., comfort) of revisiting known information.

Lehoux et al. (2006) suggest that focus groups are ‘social spaces in which participants co-construct the ‘patient’s view’ by sharing, contesting and acquiring knowledge’ (p. 2092). Two participants’ who had experienced heart disease shared comments that align with this insight: ‘I find listening to these ladies…there’s more knowledge from them than from websites’ (focus group participant, woman without heart disease, 79) and ‘I was looking forward to coming, to finding out what other people’s experiences were rather than just reading about it on the Internet’ (woman with heart disease, focus group, 83). What was reiterated in every focus group (including the ones with women without heart disease) was the benefit of talking about heart disease with other women. For women with heart disease, participation in the focus group was a bonding experience in which women’s lived experiences were viewed as beneficial and helpful for triangulating other information (Genuis, 2012; Greyson, 2018). In this way, the focus group itself was a source for confirming information or acquiring new information and knowledge. Sharing information and co-creating knowledge with other women highlights how relationality can contest the androcentrism inherent in this specific information context.

Corporeal information practices

Embodied Information

Almost every participant understood heart disease risk factors (e.g., not smoking, moderate alcohol consumption, a diet rich in fruits and vegetables, managing weight, exercise, etc.) and had developed a lifetime of experiential and embodied knowledge about what was best for them in terms of a healthy lifestyle and diet. Participants emphasized that they knew their bodies the best.

You get a lot of information from people that say ‘You should’ve maybe did this’ or ‘you should do that.’ Uh uh. It’s my body. I know what I need to do and what I don’t need to do (woman without heart disease, focus group, 70).

‘People’ in this quotation referred to healthcare practitioners or friends but also to broader health discourses communicating norms and expectations to women about diet and exercise. Other participants claimed knowing what is best for their bodies particularly in terms of diet.

I got my sheet when I went for rehab … and it tells you everything: this you can eat and this you shouldn’t. I don’t follow it because I feel that I know what is not good for my body (woman with heart disease, focus group, 65).

A second participant who had been treated for heart disease stated:

I can’t listen to somebody stand there and tell me ‘You should never eat this’ or ‘You have to be careful of this’ and ‘read about it.’ I’m still living at 87’ (woman with heart disease, focus group, 87).

These women compare and contrast heart health related information and advice to their experiential and embodied knowledge and consider themselves the ultimate authorities about their bodies. In addition, these three quotations illustrate how women countered and contested the ways in which others read or interpreted their bodies or their actions (i.e., comments or suggestions about lifestyles or eating habits) (Cox et al., 2017).

Another participant described her dogged determination to get a diagnosis based upon corporeal information.

I had to go to more than one doctor before they actually listened to me. I said ‘Something’s happening to me. My body, something’s happening in my body…’ And so, I went from an internist to a cardiologist . . . but it took nearly two years (focus group, woman with heart disease, 68).

Drawing upon her embodied knowledge, this participant described situations in which she challenged medical authority and advocated for herself until she received help. Others shared similar stories. The above examples illustrate how women prioritized their experiential and embodied knowledge over 'masculine knowledge of scientific experimentation' (Urquhart & Yeoman, 2010).

However, of the women who had experienced cardiovascular disease, everyone (N=9) expressed surprise at the event and diagnosis. ‘It never occurred to any of us that this is me' (woman with heart disease, focus group, 77) ‘I never thought about getting a heart attack’ (woman with heart disease, focus group, 83) and ‘I had no idea that I was having a heart attack’ (woman with heart disease, focus group, 74) were typical responses.

Many participants expressed disbelief at their diagnosis. ‘Not overweight. Non-smoker, non-drinker. Cholesterol’s normal. No risk factors, except I guess, hereditary’ (woman with heart disease, telephone interview, 72) and ‘My father and brother both ended up dying from heart problems. I was always skinny and active…not gonna happen to me’ (woman with heart disease, focus group, 77). Interestingly, 18 out of 22 participants without heart disease said they would not be surprised if they developed heart disease because it affects so many women.

While women were highly aware of heart disease risk factors, they were uncertain or unable to interpret embodied information, particularly about heart disease symptoms. How women interpret their symptoms, and the nature of symptoms (chronic versus acute), was fundamental in determining what course of action they would take. Of the women who did have heart attacks or heart disease, all claimed that they had unusual, atypical, or abnormal symptoms. ‘I didn’t have any typical symptoms and that’s why it was a complete shock to me that I did have a heart attack’ (woman with heart disease, telephone interview, 68). ‘Doctor said ’You’ve had a heart attack.’ I was shocked because I had absolutely no pain’ (woman with heart disease, focus group, 67). Two participants experienced recognized symptoms of heart disease, yet they were uncertain or unable to interpret them. ‘When I was in the hospital I said ‘I can’t be having a heart attack…’ The pain was right in the middle of my chest’ (woman with heart disease, focus group, 83). ‘I noticed when I was in hot countries I would be short of breath and I would feel tired but I thought it was just the humidity'. Similar to findings from Lockyer (2005), some participants ignored their symptoms, tried to treat the symptoms themselves, talked to family and friends, visited their general practitioner, and two took an ambulance directly to emergency. This participant tried to treat her symptoms herself:

I woke up at 3 o’clock in the morning. I had a burning pain and so I thought I better take some nitro and after three shots of nitro I passed out (woman with heart disease, focus group, 67).

Co-morbidities contributed to confusion about what issue was the cause of the symptoms. ‘The only symptom I had was that I could run myself short of breath sometimes but that was attributed to fibromyalgia’ (woman with heart disease, focus group, 76). Additionally, over half of the participants suggested that the symptoms for heart disease are difficult to interpret because they are so varied. A woman without heart disease asked:

I experience some pain, sometimes here [points to chest]. And it doesn’t stay long and so I put it down to indigestion…But when you’re having heart pain, what is it like? What do you expect? I have heard that with women who are having a heart attack that... it could affect you anywhere in the body and you wouldn’t reali[s]e it’s your heart (focus group, 74).

Interpreting embodied information as it pertains to cardiovascular disease was difficult for many women.

Social information sources

Women with and without heart disease drew on a range of social information sources—including broader heart health discourses, particularly about diet, weight, and exercise, and information from family, doctors, residents, and other healthcare practitioners to make sense of, and to negotiate heart health information and its applicability to their lived experiences

Shame and blame

An important theme that emerged from the data was shame and blame. Some participants discussed feelings of guilt and shame about having cardiovascular disease especially when their behaviour and bodies did not align with heart health standards. ‘I was embarrassed. I still haven’t told people…I feel like gee, it’s my lifestyle. I’m too fat, I eat wrong, I don’t exercise enough, and so I feel guilty that I think I caused it’ (woman with heart disease, focus group, 68). Another said ‘I have read all the risk factors because you want to blame yourself’ (woman with heart disease, focus group, 45).

For women with heart disease, feelings of shame and blame were assuaged using a number of strategies such as emphasizing the ways in which they took care of their health, expressing surprise at the diagnosis, or by attributing heart disease to genetics and fate. A participant stated:

That is what bugs me. … the warning in the information is not enough because every person is different. A friend of ours was only 34-years-old playing tennis and died right there of a massive heart attack. And he’s a doctor…and he didn’t know (woman with heart disease, focus group, 74).

Feelings of frustration arose when the full context of a participant’s health was not taken into account such as when they were dealing with co-morbidity or stressful life events such as a spouse dying. Another participant discussed doing her best while dealing with heart disease and diabetes.

The residents…were all blaming the diabetes [for the heart attack]. And they didn’t think I was in close enough control. Well, I’d like them to be a diabetic and try to stay within that little framework that they want your blood sugars at (woman with heart disease, focus group, 67).

This same participant went on to say: ‘I just wish in a perfect world doctors and the medical profession would accept people for who they are’ (woman with heart disease, focus group, 67) expressing the frustration felt by many participants about having to meet what they perceived as rigid standards, particularly about weight.

Combining information sources

Acting on information

Participants would combine or couple (Bonner and Lloyd, 2011) information sources at the point of acting or not acting on information. Information about heart disease and messages about prevention could be sources of frustration when it was difficult to act on the information such as suggestions to ‘worry less’ or ‘avoid stress'. Some participants stated that they were naturally inclined to worry. This was a contentious point as many participants have complex lives with sick spouses, mentally ill children, and co-morbidity. In these instances, information and messages that disregarded women’s experiences, did not consider the broader context of women’s lives or their embodied knowledge, and were mere directives did not resonate with participants in terms of enabling them to act on the information given.

In many cases, this information was understood as pedantic and not helpful. For some women, messages about prevention strategies and risk factors were counterproductive when women were already trying their best. A 45-year-old participant who experienced heart disease after coping with her spouse and her father both dying within the previous eighteen months and while raising two young children reported exercising three times a week. She stated that ‘the literature [social information source] makes it feel like it’s a lifestyle disease and the things they say you should do, I’m already doing all of that!’.

In addition, for some women information and messages about heart disease provoked a sense of uncertainty regarding courses of action. This participant ignored her symptoms (embodied information) and ignored her doctor’s directives (social information):

She [doctor] said ‘when did you go for your blood work?... I told you to go from here [clinic]... Why didn’t you?’ And I said ‘I don’t know. I didn’t think it was that urgent'. And she says ‘It was. You had a heart attack’ (woman with heart disease, focus group, 83).

Despite the grave consequences, the above participant did not act on the corporeal information, her body, or the directives given by her doctor (social information) because of her [incorrect] epistemic information that it wasn’t urgent.

In addition, conflicting information, particularly about medication [conflicting social sources], created uncertainty and in the example below, fear. Three women described allergic reactions to medication [corporeal information source] and one participant stated:

My family doctor is saying ‘I want you off them because you’re going to have brain bleed and get a stroke’ and the specialist is saying ‘I want you on them because you will get a stroke.’…I’m afraid to go off them but I’m afraid to stay on them (woman with heart disease, focus group, 74).

Acting on information was best facilitated by clear directives about what to do and how to do it that were also in alignment with social, epistemic, and corporeal information sources. Even with clear directives, some people ignored information from their healthcare providers. When faced with conflicting information from different sources, participants were often flummoxed, and hesitant to act on the information received.

Discussion

Heart disease continues to be considered and treated as androcentric. Consequently, our findings indicate that in order to understand women’s health information practices as they relate to heart disease, it is imperative that the androcentric sociocultural context is accounted for because androcentrism permeates women’s information practices in a number of important ways. These broader social discourses act simultaneously as social information sources but also as the context that informs women’s understanding and experiences of heart health information (Bonner and Lloyd, 2011). Both women with and without heart disease drew on epistemic, corporeal, and social information sources and often coupled or combined them in order to understand, negotiate, and contest heart health information and messages. Importantly, broader social discourses about ‘ideal’bodies, standards, and heart disease survivors could lead to feelings of shame, self-blame, and a sense of fatalism—the very opposite of what many of these campaigns wish to accomplish.

In terms of epistemic information sources, all participants were aware of information and messages regarding heart disease risk factors and prevention strategies (e.g., diet, exercise, lifestyle, etc.). Women with and without heart disease would corroborate or ‘crosscheck’ information to find consistency across information sources (Costello, 2016; Genuis, 2012; Metzger et al., 2010).

In a study of young parents Greyson (2018) points to information triangulation as an important everyday information practice particularly in domains where knowledge and information are contested. Four types of information triangulation are identified: escalating authoritativeness triangulation, second opinion triangulation, expert/lay perspective triangulation, and inclusive or scattershot triangulation. Because Greyson (2018) studied the information triangulation of young parents, the information sources consulted were often expert, external, and social such as nutritionists, doctors, and authoritative sources on the Internet. Young parents would triangulate information with those with experiential knowledge such as their friends and families (particularly mothers) but they did not rely on their own experiential knowledge.

Conversely, the participants in this study had a lifetime of experiential and embodied knowledge to draw from and considered themselves experts on what was best for them particularly in terms of diet. The findings of this study contribute to understanding triangulation as an information practice in which experiential knowledge and corporeal information as information sources can serve as important parts of the information triangulation process. In addition, epistemic information practices allowed women to negotiate, counter, or resist discourses and passive positions created for or imposed upon them and could enable a sense of control and agency.

Women were especially confident interpreting embodied information that related to diet. Participants acknowledged the importance of diet, physical activity, and decreasing stress for preventing or treating heart disease. Even though women had great expertise in knowing what is good for their bodies, corporeal information as it pertains to heart disease symptoms could be difficult for women to interpret for many reasons.

Women’s heart disease symptoms are often subtler then men’s, women tend to have more co-morbidities, different physiology (i.e., smaller arteries), healthcare professionals are more attuned to heart disease symptoms in men, and heart disease research has far fewer women participating in research than men (30% compared to 70%). Women are under-diagnosed, under-treated, and under-represented in research (Mikhail, 2005). Therefore, information about heart-health is more likely to focus on men, which means that women, like those in this study, have greater difficulty in understanding and interpreting embodied information about heart disease symptoms because there are knowledge gaps and a lack of information to make sense of one’s symptoms.

This had grave consequences, for example, when a woman did not know that she was having a heart attack (epistemic) because she did not know or interpret correctly the corporeal information that indicated a heart attack was taking place. Furthermore, epistemic information and the ability to interpret corporeal information in terms of women’s heart health is hampered by broader androcentric health discourses that continue to view men as the medical standard, heart disease as a ‘man’s’ issue, women’s bodies as ‘difficult,’ and the ideal survivor as affluent, heteronormative, and white.

Social information sources such as awareness about risk factors was complicated by self-blame for some women who felt they ‘caused’ their heart disease. Indeed, research suggests that heart disease can be portrayed as being under a woman’s control, self-inflicted, and indicative of a woman’s moral failing for not maintaining a healthy body (Emslie, 2004) and many participants internalized this notion.

The work of Ramirez and Carmona (2018) is particularly intriguing here. In their study of ‘fatalistic beliefs’ of Mexican-American women, they found that participants clearly understood the links between diet and disease risk and that what is often framed as fatalism is an expression of feeling ‘overloaded and confused by conflicting information from public and interpersonal sources’(p. 11). Similar to the participants in Ramirez and Carmona’s study, participants in this study could clearly articulate the connections between diet and heart disease and were overwhelmed by public information.

While both women with and without heart disease suggested that one was ‘fated’ to suffer heart disease because of ‘genes,’ fatalism was expressed by participants in this study often in response to social discourses that made women feel inadequate. Furthermore, expressing shock and surprise about a diagnosis allowed participants to mediate feelings of blame and shame, to demonstrate that they have taken responsibility for their health, and to clarify the ways in which they maintained a disciplined, healthy body (Foucault, 1977, 1978) and self-sufficiency (Tuominen, 2004).

This study has some limitations. The participants that we recruited were with the exception of one person, white. As pointed to earlier, portrayals of women with heart disease excluded women based upon socioeconomic status, ethnicity, and age. The replication of these exclusions in this research was a result of the limitations of using the APPROACH database. The list of names derived from the database were from women who agreed to being contacted for follow-up interviews after being treated for heart disease. It was not possible (beyond assuming and guessing) to determine the ethnicity of the women who agreed to be contacted to participate in this research.

This raises significant questions about who participates in research generally and is a gap in the research on women and heart disease that this study was unable to address. Engaging purposive sampling in order to obtain participants that are more representative of the general population is critical to future studies. The study took place in a specific location that has a publicly funded healthcare system, and thus the results of this study are not generalisable.

Conclusion

Heart health campaigns such as the Heart Truth certainly attempt to provide women with tailored information about prevention, how heart disease symptoms are different for women than men, and to promote lifestyle and behavioural changes. Yet, our findings indicate that a deeper understanding of the androcentric context in which women’s heart health is situated is necessary and that much of this information does not recognize the diversity of women’s lived experiences or address women’s information practices.

Bonner and Lloyd’s conception of information practices as comprised of epistemic, social, and corporeal information sources provides a valuable lens from which to understand women’s information practices as it pertains to heart health information and messages. This study presents intriguing possibilities that may extend Bonner and Lloyd’s work by conceptualizing social information sources to include sociocultural contexts (e.g., discourses and ideals about health) that inform and shape women’s information practices.

This is critical work because great progress can be made if organizations such as Heart & Stroke, the medical profession, and public discourse refuse to shame women for not living up ideal health standards. If women are expected to make lifestyle changes, overcome the knowledge-barrier gap (Sligo and Jamieson, 2000), be proactive about prevention and treatment, and develop their knowledge about heart disease, they must have information ‘presented to them in ways that are appropriate and understandable’ (Gambling, 2003) and that move beyond affluent, white, and heteronormative representations. To empower women, more effective messages and information can be crafted that support women’s experiential and embodied knowledge, are consistent and triangulated across information sources, and are accompanied by guidelines about how to engage in heart healthy behaviour.

Acknowledgements

We would like to thank Haidong Liang, Multicultural Outreach Coordinator, Westend Seniors Activity Centre, Edmonton, Alberta for supporting this research in a variety of ways.

We gratefully acknowledge funding from the Women’s and Children’s Health Research Institute.

About the authors

Tami Oliphant is an Associate Professor at the School of Library and Information Studies, University of Alberta, Edmonton, Alberta, Canada. She can be contacted at toliphan@ualberta.ca
Tany Berry is a Professor and Associate Dean/Research in the Faculty of Kinesiology, Sport, and Recreation, University of Alberta, Edmonton, Alberta, Canada. She can be contacted at tberry@ualberta.ca
Colleen M. Norris is a Professor in the Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada. She can be contacted at colleen.norris@ualberta.ca

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