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Correspondence: Address correspondence to Nancy E. Schoenberg, PhD, Department of Behavioral Science, 125 College of Medicine Office Building, University of Kentucky, Lexington, KY 40536-0086. E-mail: nesch{at}uky.edu
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Abstract |
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Key Words: Coronary heart disease • Treatment decision making • Lay referral • Gender
Although these features of lay referrals apply to most segments of the population, the family and close others may have even greater importance in older age (Glasser, Prohaska, & Roska, 1992; Prohaska, 1998). The reliance on these lay referrals may be particularly common to older adults because of an intensifying and narrowing of social ties (Carstensen, 1992). Within the family, lay consultation patterns among older adults often vary according to marital status and gender. Consistent with other research, Stoller (1993) has found that married elders, especially men, tend to rely on their spouses for lay consultation, although married women frequently consult a greater range of both family and friends (Chappell, 1991). Unmarried elders, the majority of whom are widowed, most frequently consult with adult children about their illnesses, with a tendency to confer with female relatives or friends (Stoller, 1993; Strain, 1990). Lay consultation is also shaped by the context in which symptoms occur, including location, existing health beliefs, and health history. Locations vary in the extent to which they tolerate intrusion of disease, and containing the impact of disease is the primary task of patients experiencing symptoms in low-tolerance environments (Alonzo, 1986). People assess symptoms within the context of their existing health beliefs and histories, and it is especially important to consider the impact of prior diagnoses, including diabetes or hypertension, two risk factors for myocardial infarctions (MIs), on lay referral patterns and treatment decision making.
Coronary Heart Disease, Treatment-Seeking Behavior, and Lay Consultations
Coronary heart disease (CHD), the leading cause of death among older adults in most Western nations, accounts for over a half a million deaths annually or one out of every fifth death in the United States (American Heart Association, 2002). Although CHD represents a considerable disease threat, the past several decades have witnessed encouraging declines in mortality rates, primarily as a result of the introduction of time-dependent therapies that require rapid cardiac treatment seeking (Goldberg, Yarzebski, Lessard, & Gore, 2000).
Acknowledging the vital role of appropriate treatment seeking, researchers have examined demographic, psychosocial, and structural determinants underlying treatment decision making (Dracup & Moser, 1997). Like studies of treatment seeking in general, cardiac decision making has been examined almost exclusively in the realm of individual decision. As Alonzo speculates (1986, p. 1298), such an orientation derives from "the pervasive assumption that in the presence of emergent or urgent condition there is little alternative other than to expeditiously seek medical care."
Despite the predominance of this "individual as sole actor" approach, an emerging literature has begun to acknowledge the contributions of family, friends, and numerous others to CHD treatment seeking (Bleeker et al., 1995; McKinlay, Moser, & Dracup, 2000). Most individuals experiencing symptoms consult someone, be it a layperson (more common) or a health care professional (less common), prior to seeking medical treatment for cardiac symptoms (Burnett, Blumenthal, Mark, Leimberger, & Califf, 1995; Dracup et al., 1997).
Less frequently discussed in the cardiac treatment-seeking literature are complexities of lay referral patterns. Although some literature queries cardiac disease survivors about who was consulted, few studies have focused on two key components of social interaction for cardiac decision making, the demographic correlates of those making the decision to seek medical care and the contextual underpinnings of lay referral patterns. We pursue three different, though related, questions: first, what are the characteristics of those who make the decision to seek cardiac treatment themselves?; second, who shares in the treatment decision making?; and third, what accounts do cardiac patients provide for the decisions they made about lay consultation?
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Research Design and Methods |
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It should be noted that it was not our intention to use the qualitative component of the study to explicate the specific lay referral patterns of MI Onset Study survivors. That is, because we did not use the same sample for both components of this study, we do not claim our qualitative findings explain why participants in the quantitative study responded as they did. Rather, the qualitative data have the potential to explicate, in a general way, patterns observable through the quantitative data. This paper quantitatively substantiates existing findings regarding lay referrals and then pursues, qualitatively, the question of why such patterns exist. Using one data set in tandem with another has the potential of providing insights that otherwise would have to be relegated to future investigations.
Research Protocols
The Determinants of MI Onset Study
The MI Onset Study was conducted in 45 community hospitals and tertiary care centers across the United States. Trained interviewers engaged in face-to-face interviews with eligible MI survivors who agreed to participate. Interviewers obtained informed consent and collected data on standard demographic variables and the cardiac treatment process (Mittleman, Maclure, Nachnani, Sherwood, & Muller, 1997). Interviews were conducted a median of 4 days (range, 9 hr to 30 days) after patients' MIs. Patients were identified through coronary care unit admission logs and patient charts, and they met the following eligibility criteria: an elevated creatine kinase level with positive MB isoenzymes, clinical indicators of an MI; having experienced pain or other symptoms; and the ability to engage in an interview. Seventy-one percent of eligible subjects agreed to participate in the study (Mittleman, Maclure, Tofler, Sherwood, Goldberg, & Muller, 1993).
The sample for these analyses (N = 1,388) is limited to those who did not take an ambulance to the hospital (48% of all respondents). Because it is likely that nearly all individuals incapacitated beyond the point where decision making is possible would travel by ambulance, this sample of nonambulance respondents allows us to focus solely on those individuals maintaining the capacity to make decisions. We acknowledge that we are excluding some people who had the capacity to make their own decision and chose for themselves to travel by ambulance; however, because our data set does not allow us to distinguish between those with or without decision making capacity, we are unable to draw conclusions about the decision-making ability of any of the ambulance-taking respondents. Two issues may allay concerns about this limitation. First, respondents who did not take an ambulance to the hospital were nearly 25% more likely to indicate they made the treatment-seeking decision themselves than were those who arrived by means of ambulance. Second, separate analyses indicate very little difference in the characteristics of nonambulance takers versus those taking ambulances aside from being slightly younger (42% vs. 57%), male (57% vs. 50%), and married (65% vs. 53%). Finally, only those respondents who indicated a race or ethnic background of Black or White are included in the sample, as the number of people reporting other race or ethnicities was too small to examine reliably. Those survivors with missing responses are also excluded (n = 18). Table 1 highlights the characteristics of this sample.
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The MI Illness Narrative Study
To better understand the lived experience of an MI, three anthropologically trained interviewers engaged 35 MI survivors in a series of in-depth interviews. Because of the modest sample size and our attempt to obtain the most heterogeneous sample possible, we did not intentionally set out to match all interviewer–participants by ethnicity and gender. However, aside from gender (all interviewers were female), most interviewers shared a background similar to participants, a feature desired in in-depth interviewing. Study participants were identified with the assistance of two university-associated clinics that serve a diverse patient mix and, therefore, are unlikely to result in exclusion according to background characteristics. Drawing our sample from a clinic was also necessary to verify the diagnosis of an MI through chart reviews of International Classification of Disease (ICD) codes. Eligible participants included those who had been diagnosed with an MI over the past 5 years (although all but 1 had the MI within the past 10 months and nearly 80% of sample experienced their MI within the past 2 months) and were capable and willing to complete informed consent protocols and the interview sessions. Table 2 displays the characteristics of the sample. Similar to the MI Onset sample and national figures, just over half of the sample were men and a majority was over the age of 60.
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We used reflexive interviewing, in which the participant's interpretation of his or her illness experience shapes the narrative collection (Rubenstein, 2002). Open-ended questions were used (e.g., "Please tell me about when you first started having symptoms you thought might be connected to your heart"), and the interview protocol was sufficiently flexible to encourage the participant to shape further questions. Because the participant "not only holds the details of a life history of experience but, in the very process of offering them up to the researcher, constructively shapes the information" (Gubrium & Holstein, 2002, pp. 158–159), such reflexivity is the fundamental aspect of a meaning-making process of illness narratives.
Analysis
Interviews were transcribed and subjected to line-by-line content analysis procedures by the principal investigator (N.E.S.) and two research assistants. Narratives were coded without the management of a qualitative data analysis package; however, our data analysis team followed steps designed to enhance the systematic management of data, including intercoder reliability checks, the creation and constant refinement of a codebook, and participant validation checks.
As is standard in qualitative research (Jette, 2002), an iterative data analysis process occurred, with coding, creating a codebook, and engaging in validation checks occurring simultaneously. Each member of our data analysis team read and reread transcripts to ensure familiarity and met on a regular basis to engage in open coding. Upon completion of this first ordered analysis, coders engaging in line-by-line coding of identical text segments, until an intercoder reliability rate of.95 was achieved (Bakeman & Gottman, 1986).
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Results |
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Age is the most important predictor of whether or not respondents make the decision themselves. Older people are significantly more likely than their younger counterparts to report that others made the decision for them. Whereas about one third of those under 50 say that others made the decision, more than 44% of those 60 and over and nearly half (49.2%) of those 70 and up report that someone else made the decision.
Age remained the only significant predictor of decision making when the demographic variables were supplemented with location of symptom onset and self-reported comorbidities of diabetes and hypertension (see Table 4). Results of the logistic regression indicate that there is a slight decrease in the odds of the respondent making the decision to seek treatment with each additional year of age. None of the other predictors significantly affected the odds of making the decision to seek treatment on one's own.
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The relationship of the decision maker to the respondent varies by gender and marital status (see Table 5). Whereas more than half (51.2%) of older men report that their spouse made the decision to seek treatment, for only 21.5% of women is the decision made by a spouse. Though the magnitude of this difference, in part, is due to the difference in marital status between men and women (with men being more likely to be married), this gender difference appears consistent even among married participants. Although cell sizes are too small to test the significance of the differences in decision maker controlling for both marital status and gender, 25% more married men (61%) than married women (49%) report that their spouse made the decision to go to the hospital. Women are more likely to say that either a child (27.2%) or a health care worker (26.7%) made the decision for them.
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In summary, for nearly half of the sample, someone other than the respondent made the decision to seek medical attention; older symptom sufferers are significantly less likely to make this decision themselves; and the relationship of respondent to decision maker was greatly influenced by gender and marital status. Although no demographic variable other than age was found to influence the likelihood of respondents to make the decision to seek medical care themselves, differences according to marital status and gender emerge when an examination is made of who, within a group of lay consultants, made the decision to seek medical care. As described in the paragraphs that follow, qualitative insights into lay referral patterns for cardiac treatment decisions complement these data by contextualizing the lay referral patterns during cardiac treatment decision making. Although the narratives of participants describe a different sample of cardiac survivors, our thematic analyses of these stories enhance our understanding of the processes that lead some people to make treatment decisions on their own and others to rely on lay consultants.
MI Illness Narrative Study Findings
The MI narratives revealed the varied and specific ways in which age and gender shape lay referral patterns. Specifically, in-depth interviews illuminate why middle-aged adults report drawing on the assistance of others in making the treatment decision less frequently than older individuals and why men were more likely than women to let their spouses make decisions for them. Underlying and intersecting with age and gender are other important contextual circumstances that delimit lay referral patterns, including location, economic resources, and illness perceptions.
Age
In-depth interviews revealed several reasons why middle-aged adults were more likely than their older counterparts to make the decision to seek medical care themselves. First, as reflected in the statement of 56-year-old Mr. S., middle-aged participants' engagement in the workforce may limit the opportunity to involve others in treatment decisions during the workday.
I guess when I feel bad, I'm not going to complain in front of folks on the floor. And since most of my day is at work, well, that's pretty much who I'm with. Like with my heart troubles, I started feeling bad at work, and there was no use in moaning there. I just went home and moaned out loud there (laughs).
Mr. S. reports that the absence of anyone at home (his wife is also employed) led him to rely on his own judgment to respond to his cardiac symptoms. Although a similar lack of availability of contacts at home may be germane to older, widowed individuals, an extensive amount of time spent in the work environment may preclude lay referrals unless coworkers are viewed as confidants and competent to assist in the lay referral process and unless the culture of the workplace can accommodate the intrusion of illness.
In addition, this middle-aged group articulated themes of self-empowerment, independence, and proactiveness not nearly as evident among most older participants. The words of a Ms. T., a divorced 59-year-old woman, "You know, I live alone and I like it that way. Nobody getting into my business, nobody fussing at me," similarly reflect her independence with treatment decisions. Upon experiencing cardiac symptoms, Ms. T. contacted her daughter to confirm her symptoms rather than to ask her daughter's advice.
... I thought that maybe I'd better call Fran [daughter], just in case. It's not like she knows any more than me, but I just wanted to talk with someone. She was going to come over, but I told her that I'd just rest a while. ... But, you know things just got worse and worse. Sometimes the pressure would come and go, but then it seem like it just stayed around and got to where it was squeezing the life from me, so I called 911. ... No sense in me sitting around watching stupid TV while my heart is giving out.
In addition, older adults may be more likely than middle-aged cardiac disease sufferers to engage others in the lay referral process because of their relatively frequent involvement with health care professionals (HCPs). Older participants suggested at least two factors responsible for the greater interaction with HCPs. First, because of a wide prevalence of comorbidities, older adults tend to interact regularly with HCPs, leading to an "insider's knowledge" of the health care environment in general and of specific HCPs. Thus, involving the HCP becomes normative, as explained by Mrs. J., a 71-year-old urban widow: "We're pretty close. Dr. L., he knows all about me and how I'm falling apart all over." Upon experiencing crushing pain in her stomach and chest, she notes
I didn't think twice. When you got that pain, you need to do something. I didn't have an appointment until the next week, but I knew Dr. L'd sneak me in and that he'd want to know about this, on account of my high blood pressure and sugar diabetes and all, so I called right away and got in to see him. I didn't get out [of the medical center] for nearly a week.
In addition, older adults' greater use of HCPs as initial contacts may be related to the availability of health insurance. Whereas all older participants enjoyed, at a minimum, Medicare coverage, a sizable portion of the middle-aged participants lacked any health insurance. Thus, for younger participants, contacting HCPs tended to be problematic because oftentimes they lacked personal connections and the financial means to do so.
Finally, some older participants indicated that as a result of comorbidities or an inability to distinguish among symptoms, it became necessary to consult someone, preferably a family member. Thus, before seeking medical care, many elders sought the counsel of a trusted individual who might assist in distinguishing between serious and less serious symptoms.
Gender
Gender also shaped the lay referral patterns for cardiac symptom sufferers. Specifically, wives were generally the primary lay referral source for men, though husbands did not necessarily serve in the same role for women suffering cardiac symptoms. Participants suggested several themes that explicate husbands' reliance on their wives. They alluded to the traditional health gatekeeping role of women, especially evident upon men's retirement. Wives often described discussions with lay consultants other than their husbands, a pattern that reflected both women's wider array of lay referral sources and a desire not to "trouble" their husbands, especially when economic status and psychological comfort are at stake.
Participants attributed the involvement of wives in cardiac treatment seeking primarily to the longstanding tradition of wives' health vigilance in conjunction with men's retirement. Mr. R., a 68-year-old retiree, illustrates the link between his wife's health gatekeeping role, his retirement, and his reliance on his wife for health decisions. During a review of his life history, he discussed how Mrs. R. has always been in charge of health care for the household, "but now that the kids are grown, I guess you'd say she only has me to care for now. Not that I mind. I have friends, but she's the one I'd always turn to." His MI narrative demonstrates his wife's total involvement, from symptom recognition to the decision to seek medical attention,
Well, ever since I retired three years ago, my wife and I normally would get up and we'd eat breakfast together, but I didn't feel right and so I sorta stayed in the den, trying to read the paper rather than come into the kitchen. And Kitty [his wife] is looking around the house for me and she can't find me so she starts calling out for me to come down to breakfast. ... she sees me and her eyes get real big. She tells me that I was pale and sweating, though I can't say that I recall much of it. Well, right away, Kitty says, "I'm calling the doctor, I don't care what you say." See, she was used to me putting up a fuss about going to the doctor's office. As she likes to tell it, she just made the decision right then and there, loaded me in the car, took me over there, and pulled up to the emergency room entrance.
For many of the women in our sample, being married appears to offer lay referral pathways that differ from the experiences of older men. Irrespective of age, most of the women in the study indicate that their husband, if he was present at the decision point at all, served in more limited, instrumental ways directly prior to hospitalization rather than throughout the treatment-seeking process. Having multiple lay consultants, even if married, may explain why women tend to rely less on their spouses. In the words of a married, 66-year-old woman, "I have three grown children in the area and a host of friends and neighbors to call on and I do!" Furthermore, in keeping with the tradition of women as health gatekeepers, some women elected to involve their adult daughters in lay referral in addition to or instead of their husbands.
The decision to consult others may be especially appropriate for older women who may face considerable uncertainty when confronted by cardiac symptoms. Mr. S's self-reliance reflects his knowledge of the threat that cardiac disease represents to middle-aged men can be contrasted with Ms. T., who feels the need to clarify her symptoms with her daughter. With less knowledge of their susceptibility to cardiac events and with the presence of less "standard" cardiac symptoms, women may feel the need to involve others in their decision making.
Finally, as Mrs. L's narrative (which follows) illustrates, the physical absence of the husband from the household may lead to women's need and preference for a reliable source of lay referral. Women also voiced the desire not to "trouble" their husbands, especially when such a consultation risked causing worry and financial insecurity. Mrs. B., a 72-year-old rural resident whose MI symptoms began while she and her husband were driving back from a family gathering, exemplifies the former category. She frames her symptom experience as an attempt to contain her discomfort, not only refusing to enlist the support of her husband, but actively seeking to conceal the serious nature of her symptoms. Her worries about troubling her aged husband, John, overlaid by lifelong gender roles, play out in her reservations about revealing her need for medical attention.
I have to say that the thought of being far away from home in a hospital that I didn't know was disturbing to me. I didn't want John to drive much. We're getting on in years and even if we drive OK, I didn't like the thought of him having to drive at night or another long distance.
I also didn't know anyone at the hospital and all of these silly thoughts occurred to me. Like who was going to cook dinner that night for John? Who would look after him—get him his pills and such? Was John going to worry a great deal about me, and maybe it was just being overly tired, so maybe I should just try to rest. I know these sound crazy. I just wanted to wait, but eventually I told him that I thought this was bad and maybe I needed to get some medical assistance.
For Mrs. L., a 62-year-old urbanite, the confluence of an occupational culture that characterizes "personal matters" as intrusive, traditional gender roles, and concern over economic jeopardy complicate and compromise the lay referral process.
Mrs. L:
So, I called John [her husband] up at work, which is something he hates for me to do, because they have to call him in off the floor and he just hates it. He was all mad when he came to the phone. You know, "Betty ... what are you doing calling me at work? This better be something important." And then he reminded me, like grumbling, about the time I called because I couldn't get the washing machine to start up. At the time, he said, ‘What do you think I can do, start it from here?’ Well, I could see his point. But still, I figured that he knew me pretty good, after all we've been married for 43 years. ... I got married pretty young. We knew each other all throughout school. Went to a little country school together in the mountains. So, can't say there are many people who know me better.
I:
Sure. What did John say when you told him about your symptoms?
Mrs. L:
He told me that he couldn't just up and leave and that if I felt poorly, I'd better call one of my church friends and have them take me up to the doctor's. I knew he was probably right. It's not like he can take a lot of time off or anything. We need him to work, on account of me not working.
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Discussion |
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In addition to the importance of the input of "significant others," the distinct patterns of lay referrals described in this manuscript add to an accumulating body of evidence associating personal characteristics, including age and gender, with reliance on particular lay references. Older individuals tend to activate lay referrals, with older men frequently relying on their spouses for consultations and older women demonstrating a more varied lay network.
Our results also provide new insights on the variety of lay referral patterns and the complexity of the treatment decision making experience. For example, in addition to lay consultants, interactions with HCPs constitute important pathways to medical care, oftentimes occupying a middle ground between lay and cardiac emergency services. Especially among older adults, who may be more likely to interact on a regular basis with their HCPs, initiating such contact may be one of several critical links between the symptom sufferer and timely and appropriate entry into the formal medical environment.
To enhance the likelihood of more favorable outcomes from cardiac events, then, requires familiarity with the social context in which health decisions are made. Public health education efforts should reflect this knowledge, by including those who, according to this and other studies, play a part in the decision to seek cardiac care, most frequently spouses and adult children. Moreover, these education efforts should be expanded and located at venues, including worksites, churches, and other group settings, likely to reach both those at risk of MIs and those who may help with cardiac decision making. Overall, educational efforts should involve others shown to have an influence on cardiac decision making, thus avoiding assumptions about the patient as a sole actor or other inaccurate perspectives (Morrow, 1997).
In addition to integrating the appropriate lay consultants into the health education process, our results underscore the importance of the social setting or context in which time-is-critical health events occur. The cases of Mr. S. and Mrs. L. exemplify this finding. For Mr. S., whose MI symptoms occur at work, a setting where the expectations are to mute all but the most disabling or painful health complaints, a lack of consultants forces him to suffer in silence and then to go home, suffer alone, and then seek medical care. Similarly, the situation of Mrs. L., whose husband conforms to the expectations that personal matters, including serious illness, should not infringe on the work setting, conforms to Acker's notion of the disembodied worker (1990). As already indicated, Alonzo (1986) argues that settings vary in the extent that they can accommodate ill health, but we know little about the organizational and cultural features of work environments that produce this variation. Although some previous research has reported variations in treatment seeking according to these contexts (Dracup & Moser, 1997), there remains little understanding of the pathways by which social settings shape treatment decision making (Goldberg et al., 2000).
Because these settings involve key players who are socially located, an enhanced understanding of lay referral patterns and treatment decision making improves our understanding of meaningful categories of social organization, such as age and gender. Gender and age are essential for us to consider when examining health behavior, but the traditional focus on these as demographic attributes rather than social determinants masks complex information about a person's life and undermines our understanding of the decision processes leading to medical care (Schoenberg & Drungle, 2001).
Nowhere in our results is the notion that social location strongly shapes lay referral patterns and treatment decision making more evident than in the case of gender. Our results both underscore and expand on previous work on women's role as lay managers of health care within the family (Olesen, 1989; Stoller, 1998). Such managerial tasks include family symptom monitoring and encouraging medical care use. On the flip side, upon experiencing cardiac symptoms, women's choices of lay referrals and the concerns expressed in the narratives illustrate only moderate involvement of men, even husbands. A role context approach (Moen, 2001) suggests that when women and men experience similar circumstances (e.g., cardiac symptoms and making subsequent treatment decisions), the gendered life course will differentially affect women and men's responses. Thus, for most older women, serving as medical gatekeepers is consistent with lay management of health and disease across their lives, whereas for men, attending to another's symptoms may represent a departure from previous responsibilities. Similarly, as the case of Mrs. B. highlights, normative expectations including not wishing to cause a fuss or not wanting to worry the ever-busy husband (even though he is now retired) illustrate the notion of linked lives by life-course theorists (Settersten & Mayer, 1997).
Finally, our results underscore the importance of considering health and health-related behaviors within a gendered, life-course perspective that accommodates biographical and historical pathways (Moen, 2001). Approaching lay referral patterns and treatment decisions from a life stage perspective, which posits that that the biographical and historical events indelibly stamp the paths and perspectives taken by individuals in their social contexts, would assist the unpacking of age and gender. For example, the greater likelihood of younger MI survivors to make the decision to seek medical care themselves may reflect a historical period emphasizing consumer and individual rights movements.
In conclusion, our results emphasize the need for a greater recognition of the pivotal role that socially important others play in the health decisions of middle-aged and, especially, older adults. This includes enhancing the health education message to include significant others and casting a broader net to include nontraditional significant others, including HCPs themselves. In addition, our findings call for attending to the complex, linked, and multilayered social processes of lay referral and treatment decision making.
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Footnotes |
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1 Departments of Behavioral Science, Anthropology, and Internal Medicine (Cardiology), and the Sanders-Brown Center on Aging, University of Kentucky, Lexington.
2 Department of Health Policy and Epidemiology, University of Florida, Gainesville.
3 Center on Aging and Health, Case Western Reserve University, Cleveland, OH.
4 Department of Medicine, University of Louisville, KY.
Decision Editor: Laurence G. Branch, PhD
Received for publication May 20, 2002. Accepted for publication September 6, 2002.
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