Abstract
An intersectional approach was used to understand sex/gender differences in men’s health decisions with regard to hereditary breast cancer (BRCA). A sequential explanatory mixed method design was employed consisting of an online survey with a convenience sample of 101 men who tested positive for the breast cancer mutation following up with an in-depth interview with a subsample of 26 males who participated in the survey. The survey results revealed that 70.3% (n = 45) considered “Family Risk” as the primary reason for getting BRCA tested; 21.9% (n = 14) considered “Medical Considerations,” and 7.8% (n = 5) considered “Social Support” as their primary reason. Male participants who were 50 years old or younger or who did not have children were more likely to consider medical reasons as the primary reason to get tested. In terms of self-concept, younger men were more stigmatized than their older counterparts; married men felt a greater loss of control with regard to their BRCA-positive mutation diagnosis than single men; and professional men as a whole felt more vulnerable to the negative influences of the disease than those who had already retired. Regression analysis results indicated that negative self-concept was strongly related to sampled males’ BRCA involvement 6 months after testing. Applying an intersectional approach to health care, decision-making outcomes among BRCA-positive mutation males provides an important lens for ascertaining the within-sex/gender demographic and psychosocial factors that affect the diversity of men’s pretesting and posttesting medical decisions.
Introduction
Many people do not know that males can develop breast cancer. The general public’s unawareness of these victims leads to a research gap in this field. Just like women, men may inherit BRCA1 and BRCA2 genetic mutations. These human genes produce tumor suppressor proteins, which play an important role in the DNA-repairing process (National Cancer Institute, 2009). When functioning incorrectly, they significantly increase a person’s risk of developing breast cancer, ovarian cancer, and other cancers. In 2014, it was estimated that 2,360 new cases of breast cancer were diagnosed in men in the United States, and roughly 430 men died from the disease (Whiteman, 2014). Over 10% of male breast cancer cases are connected to BRCA mutations (American Cancer Society, 2011). In addition to breast cancer, BRCA1 may increase the risk for pancreatic cancer, testicular cancer, and early-onset prostate cancer in men. BRCA2 has an even stronger relation to the development of breast cancer, pancreatic cancer, and prostate cancer in men (National Cancer Institute, n.d.). BRCA-positive men with prostate cancer have lower survival rates than noncarriers because the cancer develops at a faster, more aggressive rate (Narod et al., 2008).
To date, few research studies have examined men’s reasons for seeking out genetic testing as well as their posttesting medical decision making. The limited existing research suggests that men are reluctant to seek out genetic testing. While women with BRCA mutations form communities, men find it difficult to talk to other men and rely on women’s support instead (Strømsvik, Råheim, Øyen, Engebretsen, & Gjengedal, 2010). Research identifies sex/gendered experiences with health care in general; men are less willing to seek out medical treatment for illness or other social support (Daly, 2009). These experiences with the health care system are even more complex for men because of the stigma surrounding male breast cancer (Levy-Lahad & Friedman, 2007). As a result of male familial and social roles, at-risk men rarely pursue genetic counseling and/or testing (Daly, 2009). Men are often reluctant to get tested and even express hostility about being told of their risk (Daly, 2009; Strømsvik, Råheim, Øyen, & Gjengedal, 2009).
There are few theoretical frameworks that illuminate the diversity of men’s medical decision–making experiences. The current study adopts an intersectional approach to understanding how sex/gender 1 differences intersect with social differences to produce different health care medical decision–making experiences among men who were diagnosed with hereditary breast cancer. An intersectional framework was derived from the work of African American feminist researchers (Collins, 2002; Crenshaw, 1995; Hooks, 1984) that argues in favor of examining the simultaneous interactive effects that core social difference factors may exert on a particular individual’s sex/gender identity that affects how they make medical decisions. Thus, to take an intersectional approach means that researchers are cognizant of the importance of interacting social difference factors, such as age, race/ethnicity, that may also contribute to differentiating the male hereditary breast cancer decision–making outcomes.
An intersectional approach assumes that sex and gender are “a set of socially constructed relationships which are produced and reproduced through people’s actions” (Gerson & Peiss, 1985, p. 327). A given individual’s sex/gender identity also interacts with a range of individual social differences and, in turn, these combined effects serve to shape a given BRCA-positive mutation male’s medical decision making. Such an approach also assumes that sex and gender identity concepts are not uniform or discrete and are therefore not easily separated. The current study uses sex/gender to connote the dynamic interaction between these two categories.
We know from the medical literature that sex and gender are used as critical explanatory variables in understanding health-seeking behaviors. Research suggests, for example, that men in general tend to disengage from more health-promoting interactions than women do (Addis & Mahalik, 2003; Bottorff, Oliffe, & Kelly, 2012; Creighton & Oliffe, 2010; Johnson, Greaves, & Repta, 2009; Messerschmidt, 1993; Saltonstall, 1993; Wenger & Oliffe, 2014). For example, men visit their health physician less frequently than do women. Men as a group tend to engage less in a range of personal health-seeking practices than women—they die earlier on the average than women do and suffer more from chronic diseases than their female counterparts (Bottorff, Oliffe, Robinson, & Carey, 2011; Courtenay, 2000).
While the categories of sex and gender are often deployed as primary variables in understanding the complexities in health care outcome, there has been little attention paid to differences that also exist within the categories “sex” and “gender” that may also contribute to a given individual’s health outcomes. Taking an intersectional approach to health care decision making in particular allows for the uncovering of those social differences that also matter within any given sex/gender identity category. For example, an intersectional approach would look at differences among men, such as being poor, being a member of a discriminated group, and so on, to fully evaluate their impact on a given male’s hereditary breast cancer decision–making outcomes. An intersectional approach can serve to locate inequities in health care delivery that may exist within a given sex/gender identity category. An intersectional approach provides a way for capturing the multiple interactions between a range of individual differences that goes beyond an additive difference model that takes up each difference independent of the other.
Recent research has demonstrated the importance of taking an intersectional approach in understanding health care issues and outcomes (Hankivsky, 2012; Springer, Stellman, & Jordan-Young, 2012). Recent health research suggests that an intersectional approach can serve to uncover the diversity of health-related impacts (Hankivsky & Cormier, 2011). Taking an intersectional approach to sex/gender differences provides a lens for the critical consideration of the range of social factors that comprise BRCA-positive men’s unique psychological, sociocultural standpoint—their age, ethnic status, social class, sexual preference, and so on. The current study provided a unique opportunity to identify a range of demographic and psychosocial factors implicated by gender/sex roles that affect men’s medical decision making, allowing for a more complex understanding of within-group differences among men and how they go about making medical decisions with regard to their BRCA-positive mutation status. The current study asked the following research questions.
Primary Reasons for Getting Tested
Self-Concept and BRCA Genetic Testing
Men’s Posttesting Experience
Explanatory Sequential Mixed-Methods Design
An explanatory sequential mixed-methods design consisting of an online survey followed by an in-depth telephone interview was employed. Permission to conduct this research project was obtained from the institutional review board at the senior author’s university. The first component of the sequential mixed-methods research design consisted of data collected from online survey data with a convenience sample of 101 men who tested positive for the BRCA mutation that places them at high risk for breast and other cancers. Men self-selected to participate. Men were recruited through different pipelines located in the United States such as brochures, online advertisement, BRCA women’s referrals, a Huffington Post Blog, a Facebook page, and Twitter. Interested men contacted the authors directly asking for a copy of the survey or took the online survey themselves. In addition to basic demographic information about the sampled men, the survey asked a wide range of questions regarding these men’s BRCA testing and posttesting decision–making experiences, such as their family medical history, their involvement with BRCA, their reasons to get BRCA tested, and some sociopsychological factors related to BRCA medical decision making.
Sample Demographics
The Quantitative Online Survey
The current study’s sample of men was demographically homogenous. As reported in Table 1, for the 101 men who completed the survey, 96.0% 2 (n = 97) identified themselves as White, 1.0% (n = 1) as Hispanic, 2.0% (n = 2) as Asian, and 1.0% (n = 1) as African American. A majority of the male participants identified with belief in a certain religion: Approximately 52.5% (n = 52 out of 99 valid responses) of them believed in Christianity, 24.2% (n = 24) believed in Judaism, 1.0% (n = 1) in Islam, and 22.2% (n = 22) were atheist. In addition, 63.4% (n = 64) of the male participants were older than 50 years, 71.3% (n = 72) were married, and 79.2% (n = 80) had children.
Demographic Characteristics of the Sampled Men in the Online Survey (N = 101).
In terms of socioeconomic status, 68.3% (n = 69) of men in this study came from middle-class backgrounds, 18.8% (n = 19) from the upper class, 5.0% (n = 5) from the lower class, 5.9% (n = 6) from the working class, and 2.0% (n = 2) from other backgrounds. Approximately 33.7% (n = 34) of the male participants performed blue-collar/semiprofessional jobs on a daily basis, 37.6% (n = 38) worked as professionals, and 28.7% (n = 29) had already retired. A majority of the male participants had attended at least some college: 46.0% (n = 46) had attended some college or obtained an associate’s or bachelor’s degree, 42.0% (n = 42) held an advanced degree beyond college, and 12.0% (n = 12) had attended some high school or obtained a high school diploma.
These numbers reflect prior research that suggests disparities in health care are tied to race, ethnicity, and socioeconomic status that can hinder one’s ability to receive genetic testing, counseling, and medical care (Ward et al., 2004). This can help explain why the current sample was homogenous in economic class and race, because men with these demographics were more likely to be able to afford genetic testing and to participate in a study such as this, excluding other populations from the research.
Among the 101 sample men, 73 had been tested for the BRCA gene mutation. Among them, the average age of testing for BRCA was 54 years and 65.7% (n = 46 out of 70 valid responses) tested BRCA-positive. Forty-nine sampled men had been diagnosed with cancer. Among those, 84.8% (n = 39 out of 46 valid responses) had some form of breast cancer and 34.0% (16 out of 47) had multiple types of cancer that may or may not include breast cancer.
The Qualitative Interviews
The qualitative sample consisted of a convenience subsample of 26 males who agreed to a follow-up, in-depth telephone interview that was linked to their online survey (see Table 2). The demographic characteristics of this second sample mirror that of the larger online sample of males. Most participants were White (96.0%, n = 25) and older than 50 years of age (84.6%, n = 22). The majority of men was married (73.1%, n = 19) and most men (84.6%, n = 22) had children. Approximately 70% of the men was from the middle class, with 53.8% (n = 14) of men stating they had some college education, while 46.2% (n = 12) stated they had a college degree/advanced degree.
Demographic Characteristics of the Interviewed Men (N = 26).
Data Analysis
The current study employed various quantitative data analysis methods, such as independent-samples and dependent-samples t tests, a one-way analysis of variance, and multiple regression analysis, to examine the relationships between the sampled men’s demographic characteristics and their BRCA-related self-concepts and gender role attitudes. In addition, the impact of such cognitive well-being on men’s postcancer life experiences was also scrutinized.
The authors included excerpts and stories taken from the male in-depth interviews that served to validate some of the quantitative instruments, specifically the scale questionnaire items. The qualitative excerpts were also used to help interpret, clarify, and enrich the quantitative data results. The qualitative data component was secondary to the primary survey component and served to clarify and enrich the survey findings. In addition, the qualitative findings allowed the authors to explore some subgroup findings and begin to build a more robust theoretical framework to test out ideas in the survey data, especially around issues of gender identity.
A template analysis was used to analyze the qualitative interviews. This analytical technique was originally developed by Crabtree and Miller (1999), King (1998), and King, Cassell, and Symon (2004). Its analytical goal is to summarize themes first identified by the researcher as important to seek out. Thematic analysis provides for the introduction of a priori codes that, in the case of this analysis, were garnered from the quantitative findings that the authors wanted to explore in more detail. It is important to also note that other themes were used based on the research literature that were particularly important when getting at the impact of psychosocial factors such as stigma and vulnerability.
In the current study, an example of a prior template theme that came out of the quantitative study was “motivation to seek genetic testing.” A template code can also contain a number of code levels such that, in this example, one type of level would be the types of motivation such as “family motivation.” Template analysis starts off with a set of a priori codes that are major themes the researcher expects to be important to their overall research questions and present in the qualitative interview transcripts. Coding transcripts involves reading the data and coding segments of text that appear to correspond to each prior theme. This procedure uses a “top-down” coding approach and is accomplished through constant comparative revision, which means that each segment of text is examined to determine what specific a priori theme best depicts this text segment. If a coder is unable to identify a theme to place a given text segment in, then a tentative new category would be created. If more data appeared to fit that category, it might eventually be elevated to a theme. This coding process continues until no new themes emerge when analyzing the entire set of transcripts. Adding new themes takes on a “bottom-up” approach and is based on a line-by-line “grounded reading” (Bryant & Charmaz, 2007) of the transcripts in contrast to a prior coding that utilizes a “top-down” approach.
Results
Primary Reasons for Getting Tested: The Genetic Testing Motivation Scale
The authors constructed the Genetic Testing Motivation Scale that asked participants to rate, on a scale of 0% to 100%, how important each of the family, medical, and other issues related to their social and emotional life might have played a role in their decision to pursue BRCA genetic testing. This scale originally comprised 10 items. A validation study was conducted through a factor analysis and a reliability estimation procedure about 2 years ago with a larger sample of men and women. 3 Based on the results, the authors decided to drop one item and created a nine-item scale with three subscales to indicate the primary reasons for people to get BRCA tested. These three subscales are “Social Support” (including four items: family support, family encouragement, doctor encouragement, and friends support), “Medical Considerations” (including three items: to make surgery decisions, to be reassured, and to increase screening), and “Family Risk” (including two items: for children’s risks and to tell family). Scale scores were then computed for each subscale. For this study, the established nine-item scale with the three subscales was used. Male participants’ responses to each subscale of the Genetic Testing Motivation Scale were scrutinized both quantitatively and qualitatively. Moreover, for some subscales, important items and related responses were discussed in detail. Research Questions 1a and 1b were answered based on the analysis results of the Genetic Testing Motivation Scale.
In the survey, for each male participant, the subscale with the highest scale score was viewed as the primary reason for him to have the BRCA genetic testing. Among the 64 male participants who responded to at least one item of the scale, 70.3% (n = 45) considered “Family Risk” as the primary reason for getting BRCA tested, 21.9% (n = 14) considered “Medical Considerations” as the primary reason, and 7.8% (n = 5) considered “Social Support” as their primary reason.
In the interviews, many men stated that their reason for testing was a result of their concern for their children or future children, especially if they had daughters (for a similar finding, see also Liede et al., 2000). The findings from the intensive interviews also supported this specific result as well. Jeff stated, “It wasn’t a difficult decision, for me . . . primarily because I had a daughter . . . so I did it primarily hoping I would be negative. . . . So that my daughter would be safe.” Similarly, Ricky explained, Well uh just uh to go back a little bit to the BRCA testing I did have that done, uh for the benefit of my daughter. I, I did not want to be carrying that gene and not be able to warn her.
These quotes also reveal another important issue with regard to men’s testing especially when they have daughters and what is contained in this motivation are signs that men also experience guilt about passing on a cancer hereditary gene to them.
A Chi-square test between age and the primary reason to get tested revealed that participants who were 50 years old or younger were more likely to consider medical reasons as the primary reason to get BRCA tested (χ2 = 12.938, p = .002, standardized residual = 2.5) than those who were older than 50 years. In the same vein, a Chi-square test between marital status and the primary reason to get tested revealed that single participants were more likely to consider medical reasons as the primary reason to get BRCA tested (χ2 = 7.096, p = .029, standardized residual = 2.1) than participants who were married.
Participants who did not have any children were more likely to consider medical reasons as the primary reason to get BRCA tested (χ2 = 10.687, p = .005, standardized residual = 2.6) than those who did have children. Single males who did not have family and children were more likely to get BRCA tested primarily due to medical considerations. Nicholas, a single, 36-year-old male with no children, said, And it was simply an interest on my part that, um, you know, push for the testing, uh, ‘cause you know I’m, I’m a scientist, so that was why I wanted to find out. And from there, once I got the results, then I went to do, you know, I saw the breast surgeons and all that type of stuff and went from there.
Sex/Gender Role Identity and the BRCA-Positive Mutation Experience
The research literature reveals that, in general, men’s gender role identity—regarding what it means to be a male— affects their ability to cope with their own health risks and medical issues, making them respond differently than women (Benyamini, 2009; Lohan, 2007; Mahalik, Burns, & Syzdek, 2007). More specifically, research into health care experiences of men reveals they are less likely to seek out medical treatment for an illness and less social support for medical issues than women in general (Daly, 2009; Kelly, 2009). O’Brien, Hunt, and Hart (2005) reported that men’s sense of cancer risk is often interpreted through a traditional gendered role lens. O’Brien et al. (2005) noted that important traditional male role expectations make men more hesitant than their female counterparts to seek medical advice and instead more likely to ignore their symptoms, partly because they do not want to take up the time of their medical caregiver.
The characteristics of male participants with regard to men’s traditional sex/gender role attitudes was examined. Each participant was given a short version of both the masculinity and femininity subscales from the Bem Sex Role Inventory (BSRI), which contained 20 items relating to traditional (American) male and female traits (Bem, 1981). The participants rated their agreement with how each trait describes them on a 7-point Likert-type scale from always false to always true.
A dependent-samples t test revealed that male participants in the current study rated significantly higher, t(84) = 4.318, p < .001, on the femininity subscale (M = 5.64, SD = 0.89) than on the masculinity subscale (M = 5.20, SD = 0.80). It seems that the sampled men in the current study felt more endorsed with feminine/ity traits than with masculine/ity ones. Michael expressed this finding in his interview when he said, I’m not like your typical red-blooded male American out there. I don’t really care about sports, or you know I mean I have, really, more meaningful like, relationships with people, when I’m open with them. . . . Like a lot of guys out there are just not open, you know they, uh uh, they can’t communicate with each other on like emotional terms. I feel like I am way more in tune with my emotions.
Norms of the current sample were then calculated and compared with those of the Bem’s 1986 norming study (Garrison, 1983) for the masculinity and femininity subscales. Independent-samples t tests were performed (see Table 3). The current study had higher mean masculinity scores (M = 5.20, SD = 0.80) than the Bem’s norming study (M = 5.12, SD = 0.65); however, the difference was not statistically significant, t(579) = 0.874, p = .329. Meanwhile, the current sample also had a higher mean femininity score (M = 5.64, SD = 0.89) than the Bem’s sample (M = 4.59, SD = 0.55), which was statistically significant, t(579) = 10.538, p < .001. In other words, the sampled men in this study were similar to those in the Bem’s norming sample in terms of their degrees of endorsement to masculinity; however, they possessed more femininity traits than the Bem’s sample.
Norms of the Scoring of the BRSI: This Sample Versus Bem’s (1981) Sample.
The corresponding group has a mean score that is statistically significantly higher than the other group of the same scale at p < .05.
The sample of men who agreed to take the current survey may be more similar to the women who are BRCA-positive than the general population of men who are BRCA-positive. This finding was supported as well by some of the comments made by those men who agreed to participate in the telephone interview. When these males were asked why so many men are unwilling to talk about their experiences, all men responding to this issue had similar reactions.
George put it the most explicitly when he said, “There’s an easy explanation for it . . . it’s . . . another mutation. And the mutation is the macho gene. . . . Men have the macho gene.” Many other men agreed with this assessment and often claimed they did not have this so-called “mutation,” such as Daniel who stated explicitly, “Oh I’m not macho at all. I’m not macho at all. Zero.” He explained further that not being macho to him meant being more “intellectually and culturally oriented” rather than “sports or strength oriented,” and also that it means that he is a “compassionate . . . caring person,” all traits that he said he got from his father. Noah said simply, “I’m not a very macho guy.”
These comments from the in-depth interviews with men shed light on the quantitative findings with regard to why the men in the current survey sample were similar to women on the BSRI scale. More specifically, these comments revealed that men who appear willing to talk about their experiences self-identify as being, in their own words, less “macho,” than other men in the general population of men. However, the men interviewed for this study stated as well that they do not consider themselves to be “feminine” either, still identifying with masculinity. They instead go on to note in their interview that they came forward to talk about these issues because they specifically wanted other people to be aware of male breast cancer. Jonathan notes, “It certainly isn’t indicative that I’m more feminine than other people.”
The men interviewed made it clear that their actions were not about being traditionally masculine, but their own brand of what it meant to be a “man.” It seems that for many men, these redefined ideas about masculinity may have resulted in their low masculinity scores on the BSRI scale. It may be that the BSRI scale needs to be revisited in order to take into account the current sociohistorical context.
Several men shared how masculinity was related to their desire to open up. They noted for example, that their decision to share their experiences in an interview was more about their desire and feeling of responsibility to spread awareness in order to prevent other men from ignoring symptoms or risks that might turn out to be breast cancer. Nathan explained, I think I probably have a different definition of masculinity than most . . . I sort of see masculinity as a positive, you know I mean macho obviously is a negative. . . . And one of the things that I have always thought about my masculinity is that you know you’ve got to try and be a good father. And, you know, that’s, that’s masculine . . . that’s being a man.
Men’s recoding of masculinity took different forms and is presented in many quotes from the interviews. For example, Nathan went on to note that One of the things that I, you know, always thought about my masculinity is that you know you’ve got to try and be a good father. And, you know, that’s masculine. You know that’s being a man, is living up to your responsibilities as a father and, you know and as a husband and all that stuff.
Nathan scored high on the femininity subscale, but considers himself to be masculine, albeit in a different way than the BSRI scale measures. He has redefined what it means to be masculine, saying, I don’t flex my muscles or you know and even when I was totally fit and racing I never, you know, made a big deal about that stuff. . . . But you know I had aggressive, I was aggressive and you know competitive and all that stuff, but so yeah I, I mean obviously this [breast cancer] doesn’t affect my masculinity at all.
Similarly, George shared his thoughts on masculinity, explaining, Men have the macho gene. . . . We are schooled from infancy not to show weakness. . . . And socializing diseases, socializing diseases is a sign of weakness. And so the word doesn’t get out, it’s an assault. They view it as an assault on our masculinity. It is not, but that’s the way it is viewed.
Some men used analogies to redefine what it means to be at risk for breast cancer or even having breast cancer. One participant, James, put things this way: I always use the analogy if my car had a bad carburetor I wouldn’t hide it and be ashamed of it. I’d go to a mechanic and get it fixed. I have a strong enough image of myself that, if people don’t like to see it, well then close your eyes, kind of thing, I kind of view it almost as a battle scar that life dealt me breast cancer but if I fought back and if that’s the way it is.
Another male, John, who was diagnosed with breast cancer reinscribed his breast with a tattoo he felt comfortable looking at and notes, I’m thinking I got like three things I oughta do. One is to put a smiley face where my nipple used to be, one is to . . . make a tattoo of a nipple, and the guys on my BMW forum said no put the roundel on there!
When asked why he was thinking of getting reconstruction he said, “To make light of it you know, let the world know that this was not the end by any manner or means you know this is not something that you know turned me into an invalid.”
It is important to note here that some critics of the BSRI feel the measure may be outdated (Ballard-Reisch & Elton, 1992). The authors do agree the scale may not capture the range of contemporary views of masculinity and femininity; it is critical to note that dominant theory continues to stereotype sex/gender categories toward the type of sex/gender traditional roles as measured by the BSRI scale. Still, this scale continues to be the “instrument of choice” for those studying gender role, and researchers have replicated the item selection procedures for the scale (Harris, 1994).
Self-Concept and BRCA Genetic Testing
Male participants in this study who filled out the online survey also completed the BRCA Self-Concept Scale (Esplen et al., 2009) to ascertain how the BRCA gene mutation made the participants feel about their self-identity.
The overall Self-Concept Scale is composed of 17 items, each of which has a range of 0 (not at all) to 10 (completely) and measures the extent to which participants endorse with the corresponding statement. The scale is further split into three subscales: Stigma (eight items), Vulnerability (five items), and Mastery (four items). The Stigma subscale focuses on participants’ negative feelings toward themselves such as feeling loss of privacy and feeling isolated and labeled; the Vulnerability subscale focuses on participants’ negative feelings of their physical conditions such as dislike of their bodies and worrying of passing the disease to their children; and the Mastery subscale focuses on lack of self-confidence toward the disease such as being confident about dealing with the test results and controlling of their health. Each subscale is an average of its corresponding items and a higher score indicates lower self-concept.
A series of independent-samples t tests were conducted to examine if there were demographic differences in terms of participants’ self-concept. The results reported that there was a statistically significant age difference in terms of the stigma subscale: Male participants who were 50 years old or younger (M = 1.92, SD = 1.76) expressed significantly more stigmatized feelings toward the disease, t(30.227) = 2.709, p = .011, than those who were older than 50 years (M = 0.84, SD = 1.05).
This finding was also supported in the qualitative data from the phone interviews. One participant, George, aged 79 years, displayed very low stigma toward his breast cancer diagnosis. When asked about his body image, he explained, I wasn’t offended by it. I wasn’t angry. I didn’t blame anybody. I just knew I had a disease. But a part of my attitude, and a great part of my attitude, stems from my belief that you bring your personality with you into disease.
His identity was not affected by his diagnosis, as he states, All of my actions were influenced by my desire to maintain true to who I was. I didn’t, I didn’t view myself as changed any. I didn’t view myself as less a man. I viewed myself as a fluke. And the fluke didn’t have negative connotations; it’s just that I got a disease that I didn’t think I could ever develop. But that didn’t affect my masculinity. My view of myself was as it was before breast cancer.
George’s age was a factor in his ability to remain unchanged and unstigmatized by his diagnosis, likely because his personality had been cemented over many years and thus his positive self-concept is strongly intact.
Married men (M = 3.23, SD = 2.65) scored significantly higher 4 on the Mastery subscale, t(51.092) = 2.927, p = .005, than single men (M = 1.68, SD = 1.58). In the interviews, this was apparent, and the finding seems to be especially affected by the fact that marriage often went along with having at least one child. Many of the men with children expressed a deep fear for their children’s health after testing positive for BRCA. This finding is supported in the research literature, which notes that men are motivated to undergo genetic testing for the sake of their daughters and may experience grief and guilt about passing on a cancer predisposition gene to them (Hallowell et al., 2006).
A one-way analysis of variance was performed to examine the relationship between participants’ self-concept and their occupations. The results indicated that male participants’ scores on the Vulnerability subscale differed by their occupations, F(2, 62) = 3.195, p = .048. Tukey–Kramer post hoc comparisons 5 were then conducted: Professionals (M = 2.83, 95% confidence interval (CI) [1.92, 3.73]) were more vulnerable to the negative influences of the disease than those who had already retired (M = 1.14, 95% CI [0.51, 1.77], p = .037).
The following excerpt is a good illustration of the vulnerability that professional men felt about their BRCA-positive status. Stuart was a 53-year-old real-estate investor and executive. He was married and had a daughter who was 15 years old at the time he was diagnosed with Stage III breast cancer. Shortly after his diagnosis, he had both his breasts removed and underwent 20 weeks of chemotherapy and 6 weeks of radiation.
When Stuart developed breast cancer, he was unwilling to share his diagnosis with anyone except his wife, until she convinced him otherwise. He explained, “I was hoping to keep it to myself.” But when Stuart realized the extent of his treatment protocol, he noted, “I knew it was something I could not hide so we felt it was best just to be upfront.” This quote is a reflection of Stuart’s very public role as the head of his company and his need to maintain his authority and some semblance of normalcy in his life as a way to gain some control over his medical condition and feelings of vulnerability brought about by his weakened condition. But that was not the total story. As Stuart related, one of his primary reasons beyond keeping up a normal front at work was to convince his daughter he was not going to die. Stuart’s only child, a daughter, was 15 years old when he was diagnosed with breast cancer and he mentioned that his daughter thought he was going to die. Maintaining some type of normalcy while undergoing medical treatment made Stuart feel that he “was putting up a good front for my, my wife and daughter.”
Stuart’s breast cancer treatment left him considerably weak, feeling a loss of control and increased vulnerability/. He expressed his feelings this way: “You’re just waiting to get weaker and weaker with each round of chemo. I myself looking like I am about two weeks away from being buried.” Yet despite his intense chemotherapy and radiation treatments, Stuart continued to go to work as often as possible. As sick as he felt, Stuart went to work “even if it were for a few days.” During his treatment protocols, he kept up a daily work routine. As he put it, I would get in the car, I would drive, probably doing half the speed limit. But I’d get to the office and I’d stay there about two or three hours even if when I got there I simply slept on my office couch.
In Stuart’s mind, going to work was a way of trying to maintain some sort of normalcy by holding onto his work routine, even though this was something exhausting him further. He reports, “it made me feel I was gonna recover at some point.”
This kind of need for routine and normalcy is not something that those who are retired experience as intensely as professionals currently working, making their breast cancer diagnosis a bigger change in their life, which likely leads to their feeling more vulnerable. Blue-collar/semiprofessional workers did not differ significantly in terms of their scores on the Vulnerability subscale (M = 2.39, 95% CI [1.51, 3.27]) from both professionals and retired participants.
The analysis revealed important within-group differences among males in the current sample with regard to their lived posttesting BRCA-positive mutation experiences. More specifically, the findings from the analysis of the BRCA Self-Concept subscales reported distinct differences among men with regard to a range of demographic characteristics. Younger men were more stigmatized than their older counterparts; married men felt a greater loss of control with regard to their BRCA-positive mutation diagnosis than single men; and professional men as a whole felt more vulnerable to the negative influences of the disease than those who had already retired.
Men’s Posttesting Decision Making
BRCA Involvement in Men’s Lives
The participants were asked to think of their life as a pie chart and rate what percentage of their lives was affected by the BRCA1/2 genetic mutation 6 months after the testing, ranging from 0% to 100%. The average percentage of BRCA involvement in participants’ lives is 32.39% (SD = 34.10).
Multiple regression analysis was used to test if each of the self-concept subscales significantly predicted participants’ BRCA involvement after controlling for past cancer experiences and influential demographic characteristics. First, having been diagnosed with cancer or not was forced into the regression model as a preliminary control because common sense suggests that BRCA involvement should be closely tied to past cancer experiences. Second, due to the limited sample size, a forward selection procedure 6 was used to identify influential demographic variables: This process led us to include levels of education (having some high school was treated as the reference group) as influential demographic characteristics. At last, each of the three self-concept subscales was added to the model to see how it predicted the BRCA involvement after controlling for all the previous predictors.
The results of the regression models are reported in Table 4. The difference among the three models reported in Table 4 is that a different self-concept subscale was used at Step 3 to predict BRCA involvement in sampled men’s lives, in addition to “having been diagnosed with cancer or not” and levels of education. Variables were forced into regression models in steps so that the unique contribution of each predictor (as measured by “ΔR2,” the corresponding R2 change) could be discerned. According to Table 4, “having been diagnosed with cancer or not” was not a statistically significant predictor for all the three models and it explained less than 1% (ΔR2 = .003, ps = .693) of the total variance in BRCA involvement. Next, when adding levels of education into the models, they explained an additional 8.0% of the total variance (ΔR2 = .080, ps = .147). At last, in addition to the 8% explained variance by past cancer experiences and levels of education, the Stigma subscale explained another significant 16.1% (ΔR2 = .161, ps = .003) of the total variance (presented in Model 1); the Vulnerability subscale explained a significant 9.4% (ΔR2 = .094, ps = .029) more of the total variance (presented in Model 2); and the Mastery subscale explained 1.8% (ΔR2 = .018, ps = .344) more variance (presented in Model 3).
Summary of Multiple Regression Analysis for Variables Predicting BRCA Involvement (N = 50).
Note. R2 = .003 for Step 1; ΔR2 = .080 for Step 2 (ps = .147); for Step 3, ΔR2 m1 = .161 (ps = .003), ΔR2 m2 = .094 (ps = .029), and ΔR2 m3 = .018 (ps = .344).
p < .1. *p < .05. **p < .01.
When the Stigma subscale was added at Step 3 (Model 1), the four predictors together explained 24.4% of the total variance, R2 = .244, F(4, 45) = 3.636, p = .012. It was identified that the Stigma subscale significantly predicted BRCA involvement (B = 11.61, t = 3.099, p = .003) at the p < .05 level after controlling for past cancer experiences and levels of education. Although having been diagnosed with cancer or not by itself was not a significant predictor, holding an advanced degree was marginally significant (B = −24.41, t = −1.750, p = .087). In other words, compared with those males who only attended some high school, sampled males who held an advanced degree expressed marginally significantly less involvement with the disease.
Moreover, the Vulnerability subscale also significantly predicted BRCA involvement (B = 5.34, t = 2.262, p = .029) after controlling for past cancer experiences and levels of education (Model 2). Eric, who scored high on vulnerability, spent a lot of his time with BRCA-related activities. He says he visited “4 or 5 different researchers around the country . . . to fully understand everything about BRCA and get different opinions” concerning his daughters. Again, the past cancer diagnosis by itself was not statistically significant; holding college (B= −30.40, t = −2.000, p = .052) or advanced degree (B = −31.81, t = −2.194, p = .033) significantly reduced BRCA involvement. These four predictors explained 17.7% of the total variance, R2 = .177, F(4, 45) = 2.412, p = .063.
Model 3 did not strongly predict BRCA involvement as the other two models, R2 = .018, F(4, 45) = 1.267, p = .297, and the Mastery subscale was not a statistically significant predictor (B = 1.79, t = 0.957, p = .344).
The regression analysis results indicated that negative self-concept was strongly related to sampled males’ BRCA involvement 6 months after testing. This strong relationship still held when controlling for past cancer experiences and demographic differences. Among the three subscales of self-concept, the Stigma subscale displayed the strongest relationship, followed by the Vulnerability subscale; the Mastery subscale, however, was not noticeably related to BRCA involvement. In other words, the more stigmatized and vulnerable one felt toward the disease, the more BRCA involvement he expressed. It is also worth mentioning that having been diagnosed with or without cancer was not a strong predictor of BRCA involvement, but levels of education were. The more education one got, the less percent of a BRCA-positive male’s life was affected by the BRCA mutations.
Perceived Risk of Cancer After a BRCA-Positive Mutation Diagnosis
Once identified as BRCA-positive mutation carrier, men’s perceived risk of getting cancer was recorded on a scale from 0% to 100%. Generally speaking, the sampled men perceived high risk of getting caner (M = 55.59, SD = 33.74).
Multiple regression analysis was used again to test if each of the self-concept subscales significantly predicted participants’ perceived risk of cancer after testing positive for BRCA when past cancer experiences and influential demographic characteristics were controlled. The same process was followed when building the regression models: Having been diagnosed with cancer or not was first controlled; a forward selection procedure was applied to identify influential demographic variables (levels of education was considered due to the procedure); each of the three self-concept subscales was then added to the model.
The results of the regression models are reported in Table 5. Again, the difference among the three models reported in Table 5 is that different self-concept subscale was used at Step 3 to predict sampled men’s perceived risk of cancer, in addition to “having been diagnosed with cancer or not” and levels of education. According to Table 5, “having been diagnosed with cancer or not” was a strong statistically significant predictor for all the three models and it explained approximately 34.0% (ΔR2 = .340, ps < .001) of the total variance in perceived risk. When adding levels of education into the models, they explained an additional 18.1% of the total variance (ΔR2 = .181, ps = .003). At last, in addition to the 52.1% explained variance by past cancer experience and levels of education, the Stigma subscale explained another insignificant 2.2% (ΔR2 = .020, ps = .199) of the total variance (presented in Model 1); the Vulnerability subscale explained a significant 5.2% (ΔR2 = .052, ps = .046) more of the total variance (presented in Model 2); and the Mastery subscale explained an insignificant 2.0% (ΔR2 = .020, ps = .220) more variance (presented in Model 3).
Summary of Multiple Regression Analysis for Variables Predicting Perceived Risk of Cancer (N = 40).
Note. R2 = .340 for Step 1; ΔR2 = .181 for Step 2 (ps = .003); for Step 3, ΔR2 m1 = .022 (ps = .199), ΔR2 m2 = .052 (ps = .046), and ΔR2 m3 = .020 (ps = .220).
p < .1. *p < .05. **p < .01.
When the Vulnerability subscale was added at Step 3 in Model 2, the four predictors together explained 57.3% of the total variance, R2 = .573, F(4, 35) = 11.721, p < .001. The Vulnerability subscale significantly predicted participants’ perceived risk of cancer (B = 4.09, t = 2.069, p = .046) at the p < .05 level after controlling for past cancer experiences and levels of education. It is not surprising to see that having been diagnosed with cancer or not in the past by itself was a strong predictor of the perceived risk of cancer (B = 32.95, t = 4.203, p < .001). Moreover, levels of education again played an important role: The more education one got, the lower men’s perceived cancer risk was (having some college: B = −21.09, t = −1.904, p = .065; having advanced degree: B = −41.19, t = −3.810, p = .001). The other two self-concept subscales, however, did not have significant impacts on participants’ perceived risk of cancer after testing positive for BRCA, once past cancer experiences and levels of education were controlled.
There were some subtle differences among men in perceived risk of getting cancer—having already been affected by cancer was a strong predictive factor in how the males perceived their cancer risk, and those men who were more educated regardless of a cancer diagnosis perceived a lower risk compared with those men with a lower level of education. This finding is supported by general risk assessment data that reveal White males with the lowest risk perception were better educated—those who held a college or post college degree (Slovic, 1999). There exists little research on the role of educational attainment in risk assessment with regard to BRCA-positive carriers. Some research findings regarding the role of education and women’s risk assessment for breast cancer note that women with higher education are more likely to have an accurate perception of their actual risk, whereas less educated women are more likely to have inaccurate perceptions, either underestimating or overestimating their risk (Facione, 2002).
The regression analysis results indicated that Vulnerability, a subscale of self-concept, was related to sampled males’ perceived risk of cancer. The relationship held when controlling for past cancer experiences and demographic differences: The more vulnerable one felt toward the disease, the more cancer risk he perceived. It is not surprising to see that having been diagnosed with cancer or not was a strong predictor of future perceived cancer risk. Levels of education again played an important role: The more education one got, the less cancer risk he perceived.
Discussion
In the current study, the authors took an intersectional framework onto understanding men’s medical decision making with regard to being positive carriers of the BRCA1/2 genetic mutations. This approach allowed the researchers to identify important hidden differences within the sex/gender category, which serves to provide a more diverse and richer understanding of health care outcomes. Furthermore, this information is also important in providing genetics counselors and other health care providers who treat men with hereditary breast cancer with a more complex lens for improving health care outcomes and quality of life for male BRCA-positive mutation carriers.
Adopting an intersectional approach to sex/gender differences will also serve to broaden the health care field’s sex/gendered understanding of men and breast cancer away from a fixed binary. Not only is it critical for health care research to focus on specific disease-related issues but it also needs to include a broader understanding of how illness, especially the threat of having breast cancer, plays out in the lives of the diversity of BRCA-positive mutation carriers. An intersectional approach also stresses the interactive and not additive approach to difference.
Prior research on sex- and gender-related BRCA mutation health-related outcomes notes that overall, men who are carriers of the BRCA mutation are more at risk for dying from cancer partly because research reveals that men wait to seek medical care and are diagnosed at a much later stage of their disease (Gómez-Raposo, Tévar, Moyano, Gómez, & Casado, 2010), and thus the prognosis is generally worse for men than for women (Azodi, Dolat, Ardestani, Mousavi, & Shadloo, 2013). These men need to have the health care resources available for them to call on in order to understand their diagnosis and to provide them with proper awareness and medical care. Second, it is important for men to be tested, given that they can pass on their BRCA-positive mutation status to their male and female offspring.
If we want to maximize cancer prevention, it behooves care providers—from health care professionals such as oncologists and genetic counselors to larger health care organizations—to understand decision making from a diversity of men’s perspectives. More specifically, health care providers need to consider those sex/gendered factors in the medical environment with an understanding of both men’s and women’s lived BRCA1/2 experiences in order to improve posttesting treatment options and empower both men and women’s decision making.
The current study’s intersectional approach uncovered a range of important indicators that served to differentiate the medical decision-making experiences among the diversity of men who test positive for the BRCA gene mutation. Past research into gender-related differences among BRCA-positive mutation carriers revealed stark gender differences between men and women’s medical decision making. O’Brien et al. (2005) noted that important traditional male role expectations make men more hesitant than their female counterparts to seek medical advice and instead more likely to ignore their symptoms, partly because they do not want to take up the time of their medical caregiver. More recent research also suggests men are often reluctant to receive genetic testing, or they express misgivings about being told of their medical concern (Daly, 2009). When men do get tested, they tend to do so for the sake of their families (Evans, Binchy, Shenton, Hopwood, & Craufurd, 2009), and if they test positive for the BRCA mutation, they experience reactions of guilt (Strømsvik et al., 2010; Strømsvik et al., 2009). Similar to women, they feel a moral and personal responsibility to disclose information about genetic testing and risk to their children (Hallowell et al., 2005; Hesse-Biber, 2014).
The current research into within-male differences in medical decision making serves to temper some of the sex-/gender-related findings regarding men’s medical decision-making behaviors and medical experiences. The current study’s initial analysis closely examined a number of within-sex and within-gender-related demographic factors—male participants’ age, marital status, having children or not, religion, socioeconomic status, occupation, levels of education, motivation to get tested, self-concept, and posttesting BRCA–related experiences. The current findings uncovered important within-group male demographic differences that served to significantly differentiate the medical decision making of BRCA-positive mutation male carriers.
A focus on how age differentiates the experiences of BRCA-positive mutation carriers is an important finding of the current study. For example, in terms of reasons for getting tested, while the majority of the sample men tested for BRCA primarily did so for their family, those males who were single, 50 years old or younger, and did not have any children, gave health-related reasons as their primary motive to seek BRCA genetic testing. Moreover, in terms of men’s self-identity status, male participants who were 50 years old or younger were more stigmatized than those who were older than 50 years, and married men felt more loss about their BRCA-positive mutation diagnosis than single men. In addition, marital status serves as an important source of social support to men and perhaps serves to blunt some of the stigma and vulnerability that a BRCA-positive mutation status may entail. Besides age and marital status, occupation and levels of education also served as indicators which distinguished men’s BRCA experiences: Higher levels of education were related to less BRCA involvement and lower perceived risk.
The limited existing research has reported the unique complexities men face from the perceived stigma of breast cancer (Levy-Lahad & Friedman, 2007). Some research, such as that conducted by O’Brien et al. (2005), reported that men’s sense of cancer risk is often interpreted through a traditional set of sex/gender roles. However, the findings of the current study identified some important differences among men that call for a tempering of these conclusions. When sex/gender differences were examined with regard to these earlier findings, the authors identified that in terms of male participants’ self-concept with regard to their overall mental health and well-being, as measured by subscales of the overall Self-Concept Scale, the analysis revealed that different aspects of self-concept were associated with various demographic sample characteristics: Younger men in the sample felt more stigmatized than older men; married men felt more vulnerability than single men; and in this regard, men who held professional occupations felt more vulnerable to the negative influences of their BRCA-positive mutation status than those men who had already retired.
Some prior research findings conducted by O’Brien et al. (2005) reported that men’s sense of cancer risk is lower than for women. These research findings need to be tempered as well given the within-sex/gender differences among men the current study uncovered with regard to their perceived cancer risk. The current study identified that men’s feelings of vulnerability to BRCA are strong predictive factors in how they perceive their cancer risk, and those men who are more educated, regardless of a cancer diagnosis, perceive themselves to be at a lower risk for cancer compared with those men with a lower level of education. By extension, this cancer risk is related to one’s BRCA involvement with those males with a greater perceived cancer risk pursuing greater BRCA involvement.
Genetic counselors are not always aware of the specific health implications for men who carry the BRCA mutation, and how men’s particular sex/gender role expectations interact with their BRCA-positive mutation diagnosis. Some BRCA-positive mutation male carriers, for example, often downplay their personal risks, given their strong sense of familial obligation (Daly, 2009). What we know already regarding the genetic counseling of male BRCA mutation carriers is that men’s overall risk for breast cancer and other cancers is not fully understood by health care professionals as a whole. In addition, there is not a firm protocol in place that outlines specific risk management strategies for counseling males and even if there is some type of protocol, this may not be fully articulated to BRCA-positive males by a genetics counselor. For example, some research into the genetic counseling of male BRCA-positive mutation carriers reported that men are less likely to be told about hereditary patterns of cancer in their family of origin. They are less likely as well to be part of family conversations regarding their genetic risk and less likely to be completely told about their implications of their genetic testing results (Mohamad & Apffelstaedt, 2008).
The current findings have important implications for genetic counseling of BRCA-positive mutation carriers regarding the type and format of health care information is delivered to them. An intersectional approach provides a perspective for designing more effective ways to address the needs of different types of BRCA-positive mutation males that needs to be geared to their specific issues and concerns. Not all BRCA-positive mutation carriers have the same set of needs and experiences. The intersectional approach to men’s medical decision making has uncovered some important differences among men who test positive for the BRCA genetic mutation. Such information can assist genetic counselors in targeting the level and type of information they can provide to men that is consistent with the differential testing experiences of men uncovered by this research. It is the hope of the authors that gearing genetic counseling to BRCA-positive men’s differential experiences will improve the overall quality of men’s counseling experience by providing a more nuanced understanding of men’s perceptions of risk and the overall differences in psychosocial impacts among male BRCA-positive mutation carriers. Such nuanced differences among males uncovered in the current research will help counselors create treatment and counseling programs that take into account the diversity and range of men’s experiences. Specific psychosocial factors also need to be taken into account in any treatment protocol and be built into genetic counseling itself. In addition, researchers need to examine the range of men’s cancer experiences across the diversity of men’s lives (Wenger & Oliffe, 2014).
The current study has limitations. The sample size is small and also does not include a diversity of men by race/ethnic group. Thus, the conclusions drawn in this article need to be tempered given that the majority of men in the current sample were Caucasian and most came from middle- and working-class backgrounds. Missing are the decision-making experiences of men from different ethnic/racial backgrounds and social classes. Thus, it is critical not to extrapolate the diversity of experiences of the particular group of men in the current study to all men who are BRCA-positive mutation carriers.
Taking a more tailored approach that takes into account the differing needs males face—in terms of the amount and type of information and support they require—has the potential of improving the quality of patient outcomes and providing an opportunity for a much more effective strategy for reaching a patient-centered care outcome.
Footnotes
Acknowledgements
We wish to acknowledge the expert assistance of Jing Jang, a graduate student in the Department of Educational Research Measurement and Evaluation at Boston College.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.