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Expectations versus reality: The impact of men’s expectancy violations in conversations with healthcare providers about BRCA-related cancer risks
Patient Education and Counseling 102 (2019) 1650–1655
Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Expectations versus reality: The impact of men’s expectancy violations in conversations with healthcare providers about BRCA-related cancer risks Marleah Deana,* , Emily Rauscherb , Emily Gomeza , Cierra Fischera a b
Department of Communication, University of South Florida, Tampa, FL, USA Department of Communication, Texas A&M University, College Station, TX, USA
A R T I C L E I N F O
A B S T R A C T
Article history: Received 13 November 2018 Received in revised form 3 April 2019 Accepted 5 April 2019
Objective: To investigate the experiences of men with germline pathogenic BRCA variants or who have a first-degree family member who tested positive for BRCA regarding their interactions with healthcare providers about their cancer risks. Methods: 25 phone interviews were conducted with men at risk for hereditary cancer. Data were analyzed using an iterative approach where emergent themes were compared to existing research and theories. Results: Informed by Expectancy Violation Theory (EVT), a model for understanding men’s experiences when interacting with healthcare providers about their BRCA-related cancer risks—comprised of three stages including expectation, violation, and outcomes—was developed. Conclusions: These findings show the importance of men’s basic expectations for patient-provider interactions and how violations of expectations impact perceptions, communication, and behavior. Outcomes of negative expectancy violations may impact not only men with BRCA-related cancer risks but also their family members. Practice Implications: Healthcare providers can be mindful about the ways in which they positively and negatively violate patients’ expectations. Patients can engage in self-advocacy behaviors, and advocacy organizations can design resources for patients and healthcare providers to encourage and support effective communication between providers, patients, and their family members. © 2019 Elsevier B.V. All rights reserved.
Keywords: BRCA Hereditary cancer Genetics Information Expectations Risk management
1. Introduction Men with germline pathogenic BRCA variants are at an increased risk for developing hereditary cancers including breast, prostate, pancreatic, and melanoma. For example, men with a BRCA2 mutation have a 5–10% lifetime breast cancer risk, while men with a BRCA1 mutation have a 1–5% lifetime breast cancer risk [1], in comparison to men in the general population who have 0.1% chance of developing breast cancer. In addition, male BRCA2 carriers have a 15–25% lifetime prostate cancer risk; whereas, men in the general population have up to 16% risk. Yet, men undergo genetic testing at one-tenth of the rate that women do [2], and upon learning their genetic test results, men often do not adhere to recommended screening guidelines [3].
* Corresponding author at: Department of Communication, University of South Florida, USA 4202 E Fowler Ave CIS 3057, Tampa, FL, 33620, USA. E-mail address: [email protected] (M. Dean). https://doi.org/10.1016/j.pec.2019.04.010 0738-3991/© 2019 Elsevier B.V. All rights reserved.
Increased awareness and active monitoring are essential to successful cancer risk management [4]. According to the National Comprehensive Cancer Network (NCCN), men with germline pathogenic BRCA1/2 variants should conduct self-breast exams starting at age 35, undergo annual clinical breast exams also beginning at age 35, and undergo prostate screenings starting at age 45 [5]. Prostate cancer screening is recommended for men who test positive for BRCA2, while those who test positive for BRCA1 should only consider such screening. No clear guidelines exist for pancreatic or melanoma cancer screenings; thus, recommendations are made based on an individual’s family history of hereditary cancer. Yet, these recommendations and screening procedures are passive in nature—complicating cancer risk management [6]. As such, managing care for men with germline pathogenic BRCA variants is challenging [4]. Previous research offers several reasons why. First, healthcare resources are lacking especially for men [7– 9]. Another reason is breast cancer is a feminized disease [10]. Also, men are often less engaged, and sometimes passive, in cancer risk management [11–13]. Finally—and most important to this study— when considering hereditary cancer risks and BRCA, healthcare
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2. Methods
saturation was reached at 25 individuals—meaning there were no new emergent themes—which is acceptable for a qualitative study [20]. Eligible participants met the following criteria: (a) male, (b) 18years of age or older, and (c) had tested positive for BRCA1/2 or had a first degree relative who tested positive for BRCA1/2. Qualitative interviews were conducted by the first and second authors via telephone. A sample of interview questions included: “Describe your interactions with your healthcare providers about BRCA genetic testing/preventive care.” “How might healthcare providers better assist BRCA+ men?” “What advice would you have for men also at risk for carrying a BRCA mutation?” Inquiries about the full interview guide can be directed to the first author. Interviews ranged from 23 to 71 min (M = 42.6 min., SD = 10.19 min.). In appreciation of their time, participants received a $75 Amazon gift card. Interviews were audio-recorded and transcribed. To protect participants’ privacy, pseudonyms are used throughout the manuscript.
2.1. Theoretical framework
2.3. Data analysis
This study was framed by expectancy violation theory (EVT) [15,16]. Rooted in uncertainty reduction theory [17], EVT seeks to understand how and why individuals react when confronted with unexpected violations of social norms and behaviors when interacting with others. These violations to expectations can be positively or negatively perceived, influencing the interaction between individuals. Given the existing research and framed by EVT, we asked the following question: What are men’s expectations when interacting with their healthcare providers regarding their BRCA-related cancer risks, and what were the outcomes of any violations of expectations?
Data were analyzed using an iterative approach where emergent themes were compared to existing research and theories was conducted [21]. First, the authors read the transcripts to become immersed in participants’ experiences. While reading, the authors kept reflexivity journals recording analytical memos to help note common themes across the interviews [22,23]. Then, the first, third, and fourth authors conducted primary-cycle coding [21]—using the constant comparison method to summarize and categorize the data [24]. The first author then discussed possible common findings and interpretations of the data with the second author. The authors agreed that EVT was a useful theory in understanding the ways in which men described their experiences with healthcare providers regarding their BRCA-related cancer risks. To be clear, EVT did not serve as a coding scheme for analyzing the data, but rather is provided structure for the theme categories (i.e., expectations, violations). After conferring with the second author, the first, third, and fourth authors then conducted second-cycle coding [21]. Themes were detected based on Owen’s criteria of thematic analysis—recurrence, repetition, and forcefulness [25]. Throughout the coding process, the authors met to discuss the coded transcripts to verify coder agreement [21]. Finally, to provide healthcare providers as well as clinicianresearchers with a translational tool, we developed a visual model to represent men’s experiences interacting with their providers regarding their BRCA-related cancer risks (see Fig. 1).
providers do not think of men. For instance, one study found primary care physicians were more likely to recognize maternal history of cancer than paternal history [14]. However, it is essential for providers to discuss men’s BRCA-related cancer risks and screening/prevention guidelines as men often make health decisions based on inaccurate or incomplete information [7]. To our knowledge, there are no studies examining men’s experiences regarding their interactions with healthcare providers. This gap in research is problematic because understanding men’s experiences is an important step in improving their interactions with healthcare providers [9]. Therefore, guided by Expectancy Violation Theory (EVT), the purpose of this study was to investigate the experiences of men with germline pathogenic BRCA variants or who have a first-degree family member who tested positive for BRCA regarding their interactions with healthcare providers about their cancer risks.
2.2. Recruitment and data collection Because it is difficult to identify men who are at risk for BRCArelated cancers, purposive and snowball sampling were utilized [18,19]. Following Institutional Review Board (IRB) approval, participants were recruited in two steps. First, an IRB-approved flyer was posted on Facing Our Risk of Cancer Empowered’s (FORCE) Facebook and Twitter accounts. However, only a few men directly responded. The majority of participants were recruited from female family members who saw the flyer. The flyer was also shared on a private Facebook group for men with germline pathogenic BRCA variants or who had family members who were BRCA-positive. Data collection continued until theoretical
Fig. 1. A model for understanding men’s experiences with healthcare providers regarding their BRCA risks.
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3. Results A total of 25 men participated in this study. Participants had either tested positive for BRCA1 or BRCA2 genetic variants or had a first-degree relative who was BRCA-positive. See Table 1 for an overview of participants’ demographics. Informed by the theoretical framework, a model for understanding men’s experiences when interacting with healthcare providers about their BRCA-related cancer risks was developed (see Fig. 1). This model is comprised of three stages (i.e., themes)— expectation, violation, and outcome—and associated properties are discussed below. 3.1. Expectation 3.1.1. Expectation: Healthcare providers will gather relevant family and personal health information To begin, when interacting with healthcare providers, men with BRCA-related cancer risks expected their healthcare providers to gather any relevant family and personal health information through (1) patient medical history forms and (2) disclosure in clinical interactions. First, these men thought filling out medical forms was equivalent to disclosing their family’s history of cancer and/or their positive BRCA genetic test results. For example, Kyle (age 30, single, BRCA2) explained, Every time you go in, they have you fill out those little sheets that talk about high blood pressure or the risk of diabetes all these things. Those things usually even say have a higher risk of cancer or, like, sometimes they might have prostate cancer, breast cancer, and I probably check the breast cancer box that it runs in our family. But I don't think that it's ever come up more about the BRCA gene or carrying anything like that. I think it's just more of just that basic little circle this box.
Table 1 Participants’ Demographics (N = 25). Age
20–73 years (M = 49.8 years) 20–29 (N = 2) 30–39 (N = 6) 40–49 (N = 5) 50–59 (N = 3) 60+ (N = 9)
Race
All identified as Caucasian (N = 25)
Marital Status
Married (N = 17) Single (N = 3) Divorced (N = 2) Partner (N = 1)
Household Income
$25,000-$50,000 (N = 1) $50,000-$75,000 (N = 1) $75,000-$100,000 (N = 6) > $100,000 (N = 16) Chose not to answer (N = 1)
Education Level
Some college (N = 2) Bachelor’s degree (N = 8) Master’s degree (N=10) > Master’s degree (N = 5)
Genetic Testing Status
Have been tested (N = 17) Have not been tested (N = 8)
Time since Genetic Testing
1 month – 20 years (M = 6.3 years) 1 year or less (N = 5) 2 to 5 years (N = 4) 6 to 10 years (N = 5) 11 to 16 years (N = 3)
Filling out these medical history forms typically occurred during the first interaction with a new doctor. Shawn (age 69, married, BRCA1) recounted his experience when he said, “When I first went to [clinic name], and of course, they ask you all the history, and you fill out the forms, etc., or even speaking to the oncologist.” Second, men expected to disclose their family’s health information as well as their personal health information to their healthcare providers in interactions. Jeff (age 46, married, BRCA in family) stated, “I’ve told him my family history, and I’ve told him about my sisters, my mom, my aunts. So, I’ve told him about family history with the BRCA and with the cancer history.” Tim (age 46, married, BRCA2) expressed a similar approach saying, “Mostly, whenever I see a physician, or even a dentist, I just make them aware of it [BRCA].” While others, like Michael (age 65, married, BRCA1), stated he “will tell a new doctor.” 3.2. Violations 3.2.1. Violation: Healthcare providers were not knowledgeable about BRCA, nor were they using gathered information to help men manage risks However, upon interacting with their healthcare providers, men soon learned that their providers were not knowledgeable about men’s BRCA-related cancer risks, nor were they utilizing the gathered information to help men manage their risks. For one, men reported their doctors were largely unaware (even ignorant). Derek (age 73, married, BRCA2) stated, “Most of the doctors I dealt with really weren’t either aware of the BRCA mutation or really didn’t know very much about it.” Ryan’s (age 73, married, BRCA2) primary care physician was “fairly ignorant on the issues about the risk.” Indeed, even after disclosing his family had a pathogenic variant in the family, Cody (age 46, married, BRCA in family) expressed, “[the doctor] didn’t seem to have any more insight than I get from family.” He continued later in his interview saying, “It [lack of information] was frustrating, and “the lack of information led me to tell myself that it wasn’t as big a risk for me.” Furthermore, after disclosing about his own BRCA status, Patrick (age 39, married, BRCA2) commented that even though his doctor did not know much about it that “the next time that I went to see them, I would expect that they would at least have read up on it and know more about it or to research it” in order to help him make informed health decisions. 3.2.2. Violation: Healthcare providers downplayed hereditary cancer risks Additionally, during clinical interactions with healthcare providers, men were surprised when their healthcare providers downplayed their BRCA-related cancer risks. In Michael’s case (age 65, married, BRCA1), his doctor only conducted clinical breast exams because his wife insisted on it: “The breast doctor [said], ‘I don’t know why you’re coming back.’ I [said], ‘Because my wife sent me.’ He says, ‘Yeah, I figured.’ And that’s that. So, he says, if I came back every five years, that would be fine. But my wife says, go back every year, so I go back every year.” Likewise, Ryan (age 80, married, BRCA2) reported, “I asked my doctor who is doing my colonoscopy if I should come back on a higher return rate, and he [said], ‘Absolutely not.’” Finally, for some men, like Scott, their healthcare providers did not even bring up BRCA in their clinical interactions despite knowing their risks. Jeff (age 46, married, BRCA in family) reported that his doctor “never said anything specifically about his concern about BRCA for me or BRCA in men. So, no, he’s never really even mentioned BRCA in particular with me, during my check-ups, or
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about any concerns.” And, Scott (age 61, divorced, BRCA2) noted, “There are times at the visit that it’s never mentioned. I think next week at the physical, we will probably want to talk about it.”
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educate their healthcare providers and advocate for themselves in clinical interactions. 4. Discussion and conclusions
3.3. Outcomes 4.1. Discussion Because their healthcare providers were not knowledgeable, nor did they provide pertinent health information and resources, two outcomes resulted: (1) men’s worry about their hereditary cancer risks was reduced, and (2) men became advocates by encouraging their doctors to become educated about BRCA risks. 3.3.1. Outcome: reduced worry First, as a result of their healthcare providers’ lack of knowledge and downplay of risks, men in this study experienced less worry about their BRCA-related cancer risks. After disclosing his family’s history of cancer, Gabe (age 26, single, BRCA in family) recounted that his doctor said, “We'll just keep an eye on things. We'll give you blood-work tests, and so forth, each year and see what's up.” He continued, “It didn't seem to faze him very much. And I said, well, if it doesn't bother him, then I'm not going to sit around worrying about it either.” Jeff (age 46, married, BRCA in family) had a similar interaction with his doctor. He stated, When he [the doctor] tells me “Oh, don’t worry, that’s just this,” or “Don’t worry, that’s just that,” and he knows my history, I kind of take that as my “All right, [I] don’t worry about it,” he said it’s okay. “You’re over-thinking things. Just don’t worry about it,” is kind of how I handle it. Jeff further explained that each year when he sees his doctor he brings up his concerns, and if “he [the doctor] tells me that he doesn’t think there’s anything to worry about, then I usually just take his word for it. I don’t move along with doing any further check-ups or screenings or anything like that.” Roger (age 58, married, BRCA2) summarized this when he said, I don’t want to say he downplayed it, but he [the doctor] said, ‘Certainly, the risks don’t go up that much, but they go up. So, we need to be concerned about it. And every time you come in here, I will be poking and prodding you.’ 3.3.2. Outcome: self-advocacy through education Last, men discussed the ways in which they took it upon themselves to be BRCA advocates by encouraging their doctors to become educated about BRCA risks in men. Ryan (age 73, married, BRCA2) said, I have worked to educate my doctor, and he's taken it upon himself to become more familiar with male symptoms. The original interaction was a dismissal of its significance as it relates to males. So, I took it upon myself to just continue to send articles that I save, my daughter gives to me to brief him and to educate him, so I get the best care possible. He continued, “I find it fascinating that you have to be the one to come in prepared to educate them, so they can be effective advocates for you.” In addition, these men reported needing to advocate for themselves with their healthcare providers in order to receive help managing their hereditary cancer risks. For example, Tim (age 46, married, BRCA2) explicated how, after disclosing his BRCA status, he monitored whether his doctors responded appropriately to his concerns in an attempt to advocate for himself. He said, “I think it’s great to let the different people know, and then I can kind of watch their behavior. And I’ll choose whether I want to continue with them.” In short, because men perceived their healthcare providers to take a laissez fair approach to their hereditary cancer risks they did not think they had risks. This approach led men to feel the need to
This study investigated the experiences of men with germline pathogenic BRCA variants or who have a first-degree family member who tested positive for BRCA. Specifically, this study examined their interactions with healthcare providers about BRCA-related cancer risks. Based on the analysis, a three-stage model was developed: (1) men expected their healthcare providers to gather relevant health information through patient medical history forms and disclosure; (2) healthcare providers negatively violated these expectations because they were not knowledgeable about BRCA, did not utilize information to help men manage their cancer risks, and downplayed their risks; which resulted in (3) men experiencing less worry about their BRCA-related cancer risks and advocating for themselves through educating their providers about men’s risks. These findings show the importance of patients’ basic expectations for patient-provider interactions in general. Broadly, when interacting with healthcare providers in clinical settings, patients expect providers to gather health information, accurately diagnosis, and provide clinical recommendations and treatment. Violations of these expectations are harmful for any patient but are particularly problematic for people at higher risk status (i.e., BRCA, Lynch syndrome, etc.) and patients who are commonly lost in the literature (i.e., men) because negative violations of expected behavior may decrease the chances that these men will engage in desired behavior [15]—such as getting tested and/ or adhering to risk reduction recommendations. Such reductions in testing for men with BRCA-related cancer risks is problematic because recent research has found men already undergo genetic testing at one-tenth of the rate of women [2]. Further, the outcomes of negative expectancy violations—particularly those leading men to downplay their risks—potentially impact family members across several generations. When men downplay their own risks, such a perspective can impact the family narrative about the severity of hereditary cancer. Since research demonstrates men are often focused on family when conceptualizing and understanding their risks [7,11], it is important they remain engaged in the familial management of BRCA-related cancer risks—which can fall away if their healthcare providers lead them to believe they have no risks Men’s expectancies for their healthcare providers to collect and utilize family health history (FHH) information in clinical interactions also showcases the need to further embed basic conversations about FHH into patient-provider interactions. While it is common clinical practice to collect some FHH information [26], research shows providers often do not directly discuss the information patients report [27]. However, men in this study not only wanted to talk about this information with their provider, their expectations were negatively violated when it was not discussed—leading men to engage in more negative health perceptions and behaviors. To meet patient expectations, healthcare providers should not only collect FHH information as part of clinical protocol, but actively engage patients in pointed conversations about FHH information. Doing so will be increasingly important in the era of precision medicine, as many individuals do not understand what information is relevant and important to collect and monitor [28]. A final significant finding was the necessity for men to educate their healthcare providers about BRCA-related cancer risks. Existing research shows women are frequently advocates for
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families regarding health issues and concerns [11] because they are the gatekeepers of family health [29]. Men do not share the experience of being frequent advocates for their own or familial health, meaning the need to advocate for themselves in clinical interactions is commonly outside their comfort zone. Furthermore, stereotypes of men may lead healthcare providers to believe they do not need to be as empathetic or encouraging to men, yet these data demonstrate the need to do so.
Acknowledgements This research was supported by an internal grant from Texas A&M University. Portions of this manuscript were presented at the International Conference on Communication in Healthcare (ICCH) in Porto, Portugal in September 2018. The authors would like to thank FORCE for allowing them to recruit participants as well as thank their participants for sharing their personal health experiences.
4.2. Conclusions Overall, this study identified a model that serves as a helpful framework for assisting healthcare providers’ understanding of how men’s interactions about BRCA and hereditary cancer risks may influence their perceptions, decision-making, and patient health outcomes. 4.2.1. Limitations While this work provides a theoretically-informed starting point for understanding men’s experiences with healthcare providers regarding BRCA-related cancer risks, there are limitations to this study. First, the nature of this data highlights men’s perceptions of their experiences with healthcare providers’ knowledge and clinical care. Therefore, it is plausible healthcare providers did know more than they showed. Either way, future research should explore healthcare providers’ knowledge with patients who are at risk for BRCA-related cancers as well as observe clinical interactions to see if healthcare providers’ knowledge translates into the clinical setting. Second, the sample lacks diversity. In part, this may be due to the fact that most individuals at risk for HBOC are not aware of their cancer risks [30]. Thus, future research should explore men’s experiences from different cultural and socioeconomic backgrounds. 4.2.2. Practice implications This study offers important practical implications. For one, general practitioners (GPs) might more closely monitor or potentially manipulate the ways in which they positively and negatively violate patients’ expectations. Positively violating expectations such as extensively reviewing patients’ medical history forms as well as discussing patients’ family health histories during initial clinical interactions as well as follow-up encounters may engage patients in better long-term management of their own and their family’s health. Additionally, genetic counselors might better prepare their patients for the fact that their GPs may not know much about BRCA and men’s hereditary cancer risks, which may lead to fewer negative violations. Second, given men in this study took up the role of patient self-advocates, the development and provision of educational resources and tools might assist men in better advocating for themselves in clinical interactions. Along these lines, advocacy organizations could design handouts with information about men’s BRCA-related cancer risks not only targeting men but also GPs. Such resources could include helpful websites (i.e., www.facingourrisk.com, www.basser.org, www.brightpink.org), reports of recent research studies, and available educational workshops for healthcare providers. Finally, future research should include a longitudinal examination of men’s clinical experiences and decision-making after learning about their family history of cancer and investigate healthcare providers’ experiences with men who are at risk for BRCA-related cancers. Conflicts of interest The authors report no conflicts of interest.
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Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Expectations versus reality: The impact of men’s expectancy violations in conversations with healthcare providers about BRCA-related cancer risks Marleah Deana,* , Emily Rauscherb , Emily Gomeza , Cierra Fischera a b
Department of Communication, University of South Florida, Tampa, FL, USA Department of Communication, Texas A&M University, College Station, TX, USA
A R T I C L E I N F O
A B S T R A C T
Article history: Received 13 November 2018 Received in revised form 3 April 2019 Accepted 5 April 2019
Objective: To investigate the experiences of men with germline pathogenic BRCA variants or who have a first-degree family member who tested positive for BRCA regarding their interactions with healthcare providers about their cancer risks. Methods: 25 phone interviews were conducted with men at risk for hereditary cancer. Data were analyzed using an iterative approach where emergent themes were compared to existing research and theories. Results: Informed by Expectancy Violation Theory (EVT), a model for understanding men’s experiences when interacting with healthcare providers about their BRCA-related cancer risks—comprised of three stages including expectation, violation, and outcomes—was developed. Conclusions: These findings show the importance of men’s basic expectations for patient-provider interactions and how violations of expectations impact perceptions, communication, and behavior. Outcomes of negative expectancy violations may impact not only men with BRCA-related cancer risks but also their family members. Practice Implications: Healthcare providers can be mindful about the ways in which they positively and negatively violate patients’ expectations. Patients can engage in self-advocacy behaviors, and advocacy organizations can design resources for patients and healthcare providers to encourage and support effective communication between providers, patients, and their family members. © 2019 Elsevier B.V. All rights reserved.
Keywords: BRCA Hereditary cancer Genetics Information Expectations Risk management
1. Introduction Men with germline pathogenic BRCA variants are at an increased risk for developing hereditary cancers including breast, prostate, pancreatic, and melanoma. For example, men with a BRCA2 mutation have a 5–10% lifetime breast cancer risk, while men with a BRCA1 mutation have a 1–5% lifetime breast cancer risk [1], in comparison to men in the general population who have 0.1% chance of developing breast cancer. In addition, male BRCA2 carriers have a 15–25% lifetime prostate cancer risk; whereas, men in the general population have up to 16% risk. Yet, men undergo genetic testing at one-tenth of the rate that women do [2], and upon learning their genetic test results, men often do not adhere to recommended screening guidelines [3].
* Corresponding author at: Department of Communication, University of South Florida, USA 4202 E Fowler Ave CIS 3057, Tampa, FL, 33620, USA. E-mail address: [email protected] (M. Dean). https://doi.org/10.1016/j.pec.2019.04.010 0738-3991/© 2019 Elsevier B.V. All rights reserved.
Increased awareness and active monitoring are essential to successful cancer risk management [4]. According to the National Comprehensive Cancer Network (NCCN), men with germline pathogenic BRCA1/2 variants should conduct self-breast exams starting at age 35, undergo annual clinical breast exams also beginning at age 35, and undergo prostate screenings starting at age 45 [5]. Prostate cancer screening is recommended for men who test positive for BRCA2, while those who test positive for BRCA1 should only consider such screening. No clear guidelines exist for pancreatic or melanoma cancer screenings; thus, recommendations are made based on an individual’s family history of hereditary cancer. Yet, these recommendations and screening procedures are passive in nature—complicating cancer risk management [6]. As such, managing care for men with germline pathogenic BRCA variants is challenging [4]. Previous research offers several reasons why. First, healthcare resources are lacking especially for men [7– 9]. Another reason is breast cancer is a feminized disease [10]. Also, men are often less engaged, and sometimes passive, in cancer risk management [11–13]. Finally—and most important to this study— when considering hereditary cancer risks and BRCA, healthcare
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2. Methods
saturation was reached at 25 individuals—meaning there were no new emergent themes—which is acceptable for a qualitative study [20]. Eligible participants met the following criteria: (a) male, (b) 18years of age or older, and (c) had tested positive for BRCA1/2 or had a first degree relative who tested positive for BRCA1/2. Qualitative interviews were conducted by the first and second authors via telephone. A sample of interview questions included: “Describe your interactions with your healthcare providers about BRCA genetic testing/preventive care.” “How might healthcare providers better assist BRCA+ men?” “What advice would you have for men also at risk for carrying a BRCA mutation?” Inquiries about the full interview guide can be directed to the first author. Interviews ranged from 23 to 71 min (M = 42.6 min., SD = 10.19 min.). In appreciation of their time, participants received a $75 Amazon gift card. Interviews were audio-recorded and transcribed. To protect participants’ privacy, pseudonyms are used throughout the manuscript.
2.1. Theoretical framework
2.3. Data analysis
This study was framed by expectancy violation theory (EVT) [15,16]. Rooted in uncertainty reduction theory [17], EVT seeks to understand how and why individuals react when confronted with unexpected violations of social norms and behaviors when interacting with others. These violations to expectations can be positively or negatively perceived, influencing the interaction between individuals. Given the existing research and framed by EVT, we asked the following question: What are men’s expectations when interacting with their healthcare providers regarding their BRCA-related cancer risks, and what were the outcomes of any violations of expectations?
Data were analyzed using an iterative approach where emergent themes were compared to existing research and theories was conducted [21]. First, the authors read the transcripts to become immersed in participants’ experiences. While reading, the authors kept reflexivity journals recording analytical memos to help note common themes across the interviews [22,23]. Then, the first, third, and fourth authors conducted primary-cycle coding [21]—using the constant comparison method to summarize and categorize the data [24]. The first author then discussed possible common findings and interpretations of the data with the second author. The authors agreed that EVT was a useful theory in understanding the ways in which men described their experiences with healthcare providers regarding their BRCA-related cancer risks. To be clear, EVT did not serve as a coding scheme for analyzing the data, but rather is provided structure for the theme categories (i.e., expectations, violations). After conferring with the second author, the first, third, and fourth authors then conducted second-cycle coding [21]. Themes were detected based on Owen’s criteria of thematic analysis—recurrence, repetition, and forcefulness [25]. Throughout the coding process, the authors met to discuss the coded transcripts to verify coder agreement [21]. Finally, to provide healthcare providers as well as clinicianresearchers with a translational tool, we developed a visual model to represent men’s experiences interacting with their providers regarding their BRCA-related cancer risks (see Fig. 1).
providers do not think of men. For instance, one study found primary care physicians were more likely to recognize maternal history of cancer than paternal history [14]. However, it is essential for providers to discuss men’s BRCA-related cancer risks and screening/prevention guidelines as men often make health decisions based on inaccurate or incomplete information [7]. To our knowledge, there are no studies examining men’s experiences regarding their interactions with healthcare providers. This gap in research is problematic because understanding men’s experiences is an important step in improving their interactions with healthcare providers [9]. Therefore, guided by Expectancy Violation Theory (EVT), the purpose of this study was to investigate the experiences of men with germline pathogenic BRCA variants or who have a first-degree family member who tested positive for BRCA regarding their interactions with healthcare providers about their cancer risks.
2.2. Recruitment and data collection Because it is difficult to identify men who are at risk for BRCArelated cancers, purposive and snowball sampling were utilized [18,19]. Following Institutional Review Board (IRB) approval, participants were recruited in two steps. First, an IRB-approved flyer was posted on Facing Our Risk of Cancer Empowered’s (FORCE) Facebook and Twitter accounts. However, only a few men directly responded. The majority of participants were recruited from female family members who saw the flyer. The flyer was also shared on a private Facebook group for men with germline pathogenic BRCA variants or who had family members who were BRCA-positive. Data collection continued until theoretical
Fig. 1. A model for understanding men’s experiences with healthcare providers regarding their BRCA risks.
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3. Results A total of 25 men participated in this study. Participants had either tested positive for BRCA1 or BRCA2 genetic variants or had a first-degree relative who was BRCA-positive. See Table 1 for an overview of participants’ demographics. Informed by the theoretical framework, a model for understanding men’s experiences when interacting with healthcare providers about their BRCA-related cancer risks was developed (see Fig. 1). This model is comprised of three stages (i.e., themes)— expectation, violation, and outcome—and associated properties are discussed below. 3.1. Expectation 3.1.1. Expectation: Healthcare providers will gather relevant family and personal health information To begin, when interacting with healthcare providers, men with BRCA-related cancer risks expected their healthcare providers to gather any relevant family and personal health information through (1) patient medical history forms and (2) disclosure in clinical interactions. First, these men thought filling out medical forms was equivalent to disclosing their family’s history of cancer and/or their positive BRCA genetic test results. For example, Kyle (age 30, single, BRCA2) explained, Every time you go in, they have you fill out those little sheets that talk about high blood pressure or the risk of diabetes all these things. Those things usually even say have a higher risk of cancer or, like, sometimes they might have prostate cancer, breast cancer, and I probably check the breast cancer box that it runs in our family. But I don't think that it's ever come up more about the BRCA gene or carrying anything like that. I think it's just more of just that basic little circle this box.
Table 1 Participants’ Demographics (N = 25). Age
20–73 years (M = 49.8 years) 20–29 (N = 2) 30–39 (N = 6) 40–49 (N = 5) 50–59 (N = 3) 60+ (N = 9)
Race
All identified as Caucasian (N = 25)
Marital Status
Married (N = 17) Single (N = 3) Divorced (N = 2) Partner (N = 1)
Household Income
$25,000-$50,000 (N = 1) $50,000-$75,000 (N = 1) $75,000-$100,000 (N = 6) > $100,000 (N = 16) Chose not to answer (N = 1)
Education Level
Some college (N = 2) Bachelor’s degree (N = 8) Master’s degree (N=10) > Master’s degree (N = 5)
Genetic Testing Status
Have been tested (N = 17) Have not been tested (N = 8)
Time since Genetic Testing
1 month – 20 years (M = 6.3 years) 1 year or less (N = 5) 2 to 5 years (N = 4) 6 to 10 years (N = 5) 11 to 16 years (N = 3)
Filling out these medical history forms typically occurred during the first interaction with a new doctor. Shawn (age 69, married, BRCA1) recounted his experience when he said, “When I first went to [clinic name], and of course, they ask you all the history, and you fill out the forms, etc., or even speaking to the oncologist.” Second, men expected to disclose their family’s health information as well as their personal health information to their healthcare providers in interactions. Jeff (age 46, married, BRCA in family) stated, “I’ve told him my family history, and I’ve told him about my sisters, my mom, my aunts. So, I’ve told him about family history with the BRCA and with the cancer history.” Tim (age 46, married, BRCA2) expressed a similar approach saying, “Mostly, whenever I see a physician, or even a dentist, I just make them aware of it [BRCA].” While others, like Michael (age 65, married, BRCA1), stated he “will tell a new doctor.” 3.2. Violations 3.2.1. Violation: Healthcare providers were not knowledgeable about BRCA, nor were they using gathered information to help men manage risks However, upon interacting with their healthcare providers, men soon learned that their providers were not knowledgeable about men’s BRCA-related cancer risks, nor were they utilizing the gathered information to help men manage their risks. For one, men reported their doctors were largely unaware (even ignorant). Derek (age 73, married, BRCA2) stated, “Most of the doctors I dealt with really weren’t either aware of the BRCA mutation or really didn’t know very much about it.” Ryan’s (age 73, married, BRCA2) primary care physician was “fairly ignorant on the issues about the risk.” Indeed, even after disclosing his family had a pathogenic variant in the family, Cody (age 46, married, BRCA in family) expressed, “[the doctor] didn’t seem to have any more insight than I get from family.” He continued later in his interview saying, “It [lack of information] was frustrating, and “the lack of information led me to tell myself that it wasn’t as big a risk for me.” Furthermore, after disclosing about his own BRCA status, Patrick (age 39, married, BRCA2) commented that even though his doctor did not know much about it that “the next time that I went to see them, I would expect that they would at least have read up on it and know more about it or to research it” in order to help him make informed health decisions. 3.2.2. Violation: Healthcare providers downplayed hereditary cancer risks Additionally, during clinical interactions with healthcare providers, men were surprised when their healthcare providers downplayed their BRCA-related cancer risks. In Michael’s case (age 65, married, BRCA1), his doctor only conducted clinical breast exams because his wife insisted on it: “The breast doctor [said], ‘I don’t know why you’re coming back.’ I [said], ‘Because my wife sent me.’ He says, ‘Yeah, I figured.’ And that’s that. So, he says, if I came back every five years, that would be fine. But my wife says, go back every year, so I go back every year.” Likewise, Ryan (age 80, married, BRCA2) reported, “I asked my doctor who is doing my colonoscopy if I should come back on a higher return rate, and he [said], ‘Absolutely not.’” Finally, for some men, like Scott, their healthcare providers did not even bring up BRCA in their clinical interactions despite knowing their risks. Jeff (age 46, married, BRCA in family) reported that his doctor “never said anything specifically about his concern about BRCA for me or BRCA in men. So, no, he’s never really even mentioned BRCA in particular with me, during my check-ups, or
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about any concerns.” And, Scott (age 61, divorced, BRCA2) noted, “There are times at the visit that it’s never mentioned. I think next week at the physical, we will probably want to talk about it.”
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educate their healthcare providers and advocate for themselves in clinical interactions. 4. Discussion and conclusions
3.3. Outcomes 4.1. Discussion Because their healthcare providers were not knowledgeable, nor did they provide pertinent health information and resources, two outcomes resulted: (1) men’s worry about their hereditary cancer risks was reduced, and (2) men became advocates by encouraging their doctors to become educated about BRCA risks. 3.3.1. Outcome: reduced worry First, as a result of their healthcare providers’ lack of knowledge and downplay of risks, men in this study experienced less worry about their BRCA-related cancer risks. After disclosing his family’s history of cancer, Gabe (age 26, single, BRCA in family) recounted that his doctor said, “We'll just keep an eye on things. We'll give you blood-work tests, and so forth, each year and see what's up.” He continued, “It didn't seem to faze him very much. And I said, well, if it doesn't bother him, then I'm not going to sit around worrying about it either.” Jeff (age 46, married, BRCA in family) had a similar interaction with his doctor. He stated, When he [the doctor] tells me “Oh, don’t worry, that’s just this,” or “Don’t worry, that’s just that,” and he knows my history, I kind of take that as my “All right, [I] don’t worry about it,” he said it’s okay. “You’re over-thinking things. Just don’t worry about it,” is kind of how I handle it. Jeff further explained that each year when he sees his doctor he brings up his concerns, and if “he [the doctor] tells me that he doesn’t think there’s anything to worry about, then I usually just take his word for it. I don’t move along with doing any further check-ups or screenings or anything like that.” Roger (age 58, married, BRCA2) summarized this when he said, I don’t want to say he downplayed it, but he [the doctor] said, ‘Certainly, the risks don’t go up that much, but they go up. So, we need to be concerned about it. And every time you come in here, I will be poking and prodding you.’ 3.3.2. Outcome: self-advocacy through education Last, men discussed the ways in which they took it upon themselves to be BRCA advocates by encouraging their doctors to become educated about BRCA risks in men. Ryan (age 73, married, BRCA2) said, I have worked to educate my doctor, and he's taken it upon himself to become more familiar with male symptoms. The original interaction was a dismissal of its significance as it relates to males. So, I took it upon myself to just continue to send articles that I save, my daughter gives to me to brief him and to educate him, so I get the best care possible. He continued, “I find it fascinating that you have to be the one to come in prepared to educate them, so they can be effective advocates for you.” In addition, these men reported needing to advocate for themselves with their healthcare providers in order to receive help managing their hereditary cancer risks. For example, Tim (age 46, married, BRCA2) explicated how, after disclosing his BRCA status, he monitored whether his doctors responded appropriately to his concerns in an attempt to advocate for himself. He said, “I think it’s great to let the different people know, and then I can kind of watch their behavior. And I’ll choose whether I want to continue with them.” In short, because men perceived their healthcare providers to take a laissez fair approach to their hereditary cancer risks they did not think they had risks. This approach led men to feel the need to
This study investigated the experiences of men with germline pathogenic BRCA variants or who have a first-degree family member who tested positive for BRCA. Specifically, this study examined their interactions with healthcare providers about BRCA-related cancer risks. Based on the analysis, a three-stage model was developed: (1) men expected their healthcare providers to gather relevant health information through patient medical history forms and disclosure; (2) healthcare providers negatively violated these expectations because they were not knowledgeable about BRCA, did not utilize information to help men manage their cancer risks, and downplayed their risks; which resulted in (3) men experiencing less worry about their BRCA-related cancer risks and advocating for themselves through educating their providers about men’s risks. These findings show the importance of patients’ basic expectations for patient-provider interactions in general. Broadly, when interacting with healthcare providers in clinical settings, patients expect providers to gather health information, accurately diagnosis, and provide clinical recommendations and treatment. Violations of these expectations are harmful for any patient but are particularly problematic for people at higher risk status (i.e., BRCA, Lynch syndrome, etc.) and patients who are commonly lost in the literature (i.e., men) because negative violations of expected behavior may decrease the chances that these men will engage in desired behavior [15]—such as getting tested and/ or adhering to risk reduction recommendations. Such reductions in testing for men with BRCA-related cancer risks is problematic because recent research has found men already undergo genetic testing at one-tenth of the rate of women [2]. Further, the outcomes of negative expectancy violations—particularly those leading men to downplay their risks—potentially impact family members across several generations. When men downplay their own risks, such a perspective can impact the family narrative about the severity of hereditary cancer. Since research demonstrates men are often focused on family when conceptualizing and understanding their risks [7,11], it is important they remain engaged in the familial management of BRCA-related cancer risks—which can fall away if their healthcare providers lead them to believe they have no risks Men’s expectancies for their healthcare providers to collect and utilize family health history (FHH) information in clinical interactions also showcases the need to further embed basic conversations about FHH into patient-provider interactions. While it is common clinical practice to collect some FHH information [26], research shows providers often do not directly discuss the information patients report [27]. However, men in this study not only wanted to talk about this information with their provider, their expectations were negatively violated when it was not discussed—leading men to engage in more negative health perceptions and behaviors. To meet patient expectations, healthcare providers should not only collect FHH information as part of clinical protocol, but actively engage patients in pointed conversations about FHH information. Doing so will be increasingly important in the era of precision medicine, as many individuals do not understand what information is relevant and important to collect and monitor [28]. A final significant finding was the necessity for men to educate their healthcare providers about BRCA-related cancer risks. Existing research shows women are frequently advocates for
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families regarding health issues and concerns [11] because they are the gatekeepers of family health [29]. Men do not share the experience of being frequent advocates for their own or familial health, meaning the need to advocate for themselves in clinical interactions is commonly outside their comfort zone. Furthermore, stereotypes of men may lead healthcare providers to believe they do not need to be as empathetic or encouraging to men, yet these data demonstrate the need to do so.
Acknowledgements This research was supported by an internal grant from Texas A&M University. Portions of this manuscript were presented at the International Conference on Communication in Healthcare (ICCH) in Porto, Portugal in September 2018. The authors would like to thank FORCE for allowing them to recruit participants as well as thank their participants for sharing their personal health experiences.
4.2. Conclusions Overall, this study identified a model that serves as a helpful framework for assisting healthcare providers’ understanding of how men’s interactions about BRCA and hereditary cancer risks may influence their perceptions, decision-making, and patient health outcomes. 4.2.1. Limitations While this work provides a theoretically-informed starting point for understanding men’s experiences with healthcare providers regarding BRCA-related cancer risks, there are limitations to this study. First, the nature of this data highlights men’s perceptions of their experiences with healthcare providers’ knowledge and clinical care. Therefore, it is plausible healthcare providers did know more than they showed. Either way, future research should explore healthcare providers’ knowledge with patients who are at risk for BRCA-related cancers as well as observe clinical interactions to see if healthcare providers’ knowledge translates into the clinical setting. Second, the sample lacks diversity. In part, this may be due to the fact that most individuals at risk for HBOC are not aware of their cancer risks [30]. Thus, future research should explore men’s experiences from different cultural and socioeconomic backgrounds. 4.2.2. Practice implications This study offers important practical implications. For one, general practitioners (GPs) might more closely monitor or potentially manipulate the ways in which they positively and negatively violate patients’ expectations. Positively violating expectations such as extensively reviewing patients’ medical history forms as well as discussing patients’ family health histories during initial clinical interactions as well as follow-up encounters may engage patients in better long-term management of their own and their family’s health. Additionally, genetic counselors might better prepare their patients for the fact that their GPs may not know much about BRCA and men’s hereditary cancer risks, which may lead to fewer negative violations. Second, given men in this study took up the role of patient self-advocates, the development and provision of educational resources and tools might assist men in better advocating for themselves in clinical interactions. Along these lines, advocacy organizations could design handouts with information about men’s BRCA-related cancer risks not only targeting men but also GPs. Such resources could include helpful websites (i.e., www.facingourrisk.com, www.basser.org, www.brightpink.org), reports of recent research studies, and available educational workshops for healthcare providers. Finally, future research should include a longitudinal examination of men’s clinical experiences and decision-making after learning about their family history of cancer and investigate healthcare providers’ experiences with men who are at risk for BRCA-related cancers. Conflicts of interest The authors report no conflicts of interest.
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