Health Communication

ISSN: 1041-0236 (Print) 1532-7027 (Online) Journal homepage: http://www.tandfonline.com/loi/hhth20

The Great Whoosh: Connecting an Online Personal Health Narrative and Communication Privacy Management Stephanie A. Smith & Steven R. Brunner To cite this article: Stephanie A. Smith & Steven R. Brunner (2016) The Great Whoosh: Connecting an Online Personal Health Narrative and Communication Privacy Management, Health Communication, 31:1, 12-21, DOI: 10.1080/10410236.2014.930551 To link to this article: http://dx.doi.org/10.1080/10410236.2014.930551

Published online: 23 Jan 2015.

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Date: 05 November 2015, At: 19:27

Health Communication, 31: 12–21, 2016 Copyright © Taylor & Francis Group, LLC ISSN: 1041-0236 print / 1532-7027 online DOI: 10.1080/10410236.2014.930551

The Great Whoosh: Connecting an Online Personal Health Narrative and Communication Privacy Management Downloaded by [University of California Santa Barbara] at 19:27 05 November 2015

Stephanie A. Smith and Steven R. Brunner Department of Communication University of Arizona

This research study examined Bud Goodall’s online health narrative as a case study through the use of a thematic analysis to investigate the presence of communication privacy management (CPM) theory. Emergent themes of humor as a privacy management strategy, legitimization of co-owners, shifting privacy rules at end of life, and metaphors as privacy protection were used to recount Goodall’s cancer experience on his personal blog, connecting to the components of CPM. The themes the authors analyzed represent the push–pull dialectical tension experienced to reveal and conceal information, conceptualization of private information, shared boundaries, and boundary linkages.

In the early 1980s a scholar who would forever change the field of communication was emerging from Pennsylvania State University. H. L. (Bud) Goodall was affectionately referred to as Dr. Bud by those lucky enough to have known him before his untimely death from pancreatic cancer. Born as an only child, he grew up in Europe before moving to the United States, where he began his academic career earning his Bachelor of Arts in language arts from Shepherd University and his Master of Arts in speech communication from the University of North Carolina at Chapel Hill. Goodall continued on to receive his PhD in communication from Pennsylvania State University. Goodall crafted his writing skills throughout his life to become one of the pioneers of narrative ethnographies. Over time, narrative ethnographies, also known as auto-ethnographies, became a burgeoning field. Research by Goodall has defined narrative ethnography as “a cross-disciplinary communication project aimed at re-establishing the centrality of personal experience and identity in the construction of knowledge” (Goodall, 2004, p. 187). He posited that people write or perform personal narratives as a way to explain things and to connect communication research to life stories, rather than just naming and explaining things as many scholars do. Correspondence should be addressed to Stephanie A. Smith, MSC, Department of Communication, The University of Arizona, 1103 E. University Blvd., P.O. Box 210025, Tucson, AZ 85721. E-mail: [email protected]

Of specific interest to Goodall was the process of crafting a narrative ethnography. It is holistic, rebellious, spiritual, and even fun. A narrative ethnography is best when it is blurry and personal, free of fear, shame, and taboo issues (Goodall, 2004). Writing about personal experiences, narrative ethnographies showcase the ways in which communication functions to organize experience and shape meaning in the world around us to enrich theoretical understandings (Goodall, 2004). On October 21, 2010, Goodall began crafting what would later become his own narrative ethnography when he started a personal blog. For months Goodall’s blog centered on book reviews, personal thoughts and experiences, and political commentary, until his life changed in June 2011. Goodall chronicled his experience of learning he had pancreatic cancer in a post entitled “Lucky Man” and continued blogging about his cancer experience until he passed away from the disease in August 2012. His blog became an ongoing narrative about his health, family, and daily life as a writer living with cancer, creating an archive appropriate to a narrative ethnography study within health communication research. This study seeks to analyze Goodall’s personal blog as a health narrative case study through the lens of communication privacy management (CPM). Since we never met Goodall, this study is not intended to be a tribute. Rather, this study contributes to existing CPM research and moves the application of the theory into online health communication contexts such as blogging. Finally, this study contributes

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to existing research on health narratives through a rich and detailed analysis of one man’s personal journey with cancer.

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COMMUNICATION PRIVACY MANAGEMENT THEORY Privacy is highly valued, and Petronio’s CPM theory seeks to explain the management process of revealing and concealing private information (Petronio, 2002; Petronio & SweeneyLewis, 2011). CPM is particularly relevant to health contexts because an individual’s personal health information is extremely intimate. There are six fundamental components to CPM theory: public and private dialectical tension, conceptualization of private information, privacy rules, shared boundaries, boundary coordination, and boundary turbulence (Petronio & Durham, 2008). CPM asserts that people experience a dialectical tension between public and private information, which is a “push and pull motion of revealing and concealing” (Petronio & Durham, 2008, p. 311). People desire to share part of themselves publicly by disclosing information, yet they also strive to maintain a sense of privacy through concealing information. Maintaining a sense of a private place is important to an individual’s physical, psychological, and spiritual wellbeing (Jourard, 1971). Revealing and concealing can also have impact on one’s health. Weber and Solomon (2008), for example, found that revealing information about health illnesses like breast cancer can lead to more uncertainty, but can also interfere with coping techniques when people struggle with another’s need to be told information about the health illness. Larson and Chastain (1990) reported selfconcealment could negatively influence one’s physical and mental health. Therefore, people may find it necessary to disclose and conceal personal information to manage health and well-being. CPM argues that people perceive their private information to be a possession owned by each individual (Petronio, 2002). This claim of ownership further leads people to believe they control their private information as well (Petronio & Durham, 2008). This control gives individuals the power to share the private information with those chosen to receive it, and to conceal private information from others. Blogs create an especially unique way to think about ownership and privacy rules. Child and Petronio (2011) argued that creating a social media site, such as a blog, automatically creates co-ownership for individuals who read the posts. Therefore, publishing private information on a blog creates opportunities for ownership to anyone that reads the blog. While people maintain that they own their private information, this line is blurred once the private information is shared, creating shared boundaries (Petronio & Durham, 2008). Shared boundaries signify a co-ownership of private information, and when an individual is told private information that individual becomes a co-owner of the information.

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Co-ownership of information has been shown to be problematic in health contexts. Weber and Solomon (2008), for example, demonstrated that women with breast cancer often experienced relational frustration when other family members tried to co-own the disease, but shared ownership was also helpful because family and friends provided social support by co-owing the information about the illness. Petronio, Sargent, Andea, Reganis, and Cichocki (2004) found struggles of co-ownership when an informal health advocate (i.e., friend or family member) accompanied a patient to the doctor. Rather than maintaining privacy for the patient, the advocate would violate privacy rules and disclose additional information if it was necessary information that the doctor needed to know. Taken together, these studies suggest that shared boundaries can be difficult to manage when the private information is about health concerns. Once co-ownership has been established, new rules must be formulated to control how that information is managed. This is known as boundary coordination. The information is coordinated through three separate processes: boundary linkages, boundary ownership, and boundary permeability (Petronio, 2002). Boundary linkages represent the connection between the person that disclosed the information and the person that received the disclosure (Petronio & Durham, 2008). Linkages are often intentional, but can be unintentional as well (Petronio, 2002). People linked to private information unintentionally often feel less responsibility to maintain the privacy of the information than those linked intentionally. Intentionally linked partners often negotiate privacy rules when the information is disclosed. Petronio (2002), for example, noted that individuals may start with an explicit statement such as “don’t tell anyone” before the information is revealed. Bloggers create links to readers once people view posts online. However, bloggers can prevent unintentional links by “setting privacy rules for co-owners” (Child, Haridakis, & Petronio, 2012, p. 1861) and changing online settings that limit a reader’s access to the content. Boundary ownership signifies the obligation each person has to maintaining private information. According to Petronio and Durham (2008), people are more likely to uphold privacy rules if the rules are explicitly stated, whereas implicit rules have a higher tendency of being violated. It is much more likely for privacy rules to be violated when the connection between the co-owners is unintentional (Petronio, 2002). Boundary permeability must also be considered when private information has been shared between two individuals. Boundary permeability refers to the level of openness between the two people (Petronio, 2002). Thinner boundary walls indicate that intimate information flows freely between the two people, while thicker boundary walls suggest private information does not flow freely. Specifically, CPM research has indicated that blog writers maintain ownership rules through their communication and writing styles. Child and Agyeman-Budu (2010) found that if a blogger wants information to remain private

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the blogger might write in a code that only a select audience can understand. This also represents boundary permeability because it opens up communication channels to those that understand the code, but closes off the channel to those that do not understand the code. Individuals do not always follow expectations for privacy, even if the privacy rules have been explicitly stated, and therefore a violation of sharing information occurs, known as boundary turbulence (Petronio & Sweeney-Lewis, 2011). Turbulence can happen intentionally, when people misunderstand privacy rules, when boundaries are fuzzy, when people have dissimilar boundary orientations, when people have different boundary definitions, and when privacy dilemmas occur (Petronio, 2002). When information is shared beyond those originally privileged to it, the new recipient of the private information becomes another coowner, which creates additional opportunities for turbulence to occur. Blog research that has used CPM theory suggests that some bloggers do not worry about boundary turbulence. Child et al. (2012), for example, reported that bloggers might not be concerned with privacy management, or that they might not think about potential repercussions for disclosing private information on a blog. Therefore, for bloggers, boundary turbulence might not be salient. A considerable amount of research has applied CPM to health contexts and to blogs, often looking at the privacy rules people create and how they manage their privacy online. For example, Petronio et al. (2004) investigated the role of third parties when accompanying individuals to health professionals and discovered that third parties often intervene and break implicit privacy rules for the betterment of the unhealthy person. Additionally, Weber and Solomon (2008) investigated breast cancer patients by analyzing online discussion forums. While online discussion forums are not exactly the same as blogs, they are similar in that both allow people to present their story for online viewers to comment and post replies. Based upon past research, it is appropriate for the researchers to use CPM as a theoretical lens to analyze Goodall’s blog because similar online communication health contexts have also been analyzed using CPM.

NARRATIVE ETHNOGRAPHIES People create narratives because narratives provide an avenue for explanation of personal experiences (Goodall, 2004). Studying narrative ethnographies as a case study allows researchers to seek and understand a single instance within a particular context (Stake, 1995). Narrative ethnographies have been studied significantly in communication research and are important to study because they provide opportunities to describe, explain, and potentially predict the behavior of individuals (Woodside, 2010). Anderson and Martin (2003) argued that research focused on health narratives will generate opportunities for people to

understand their own health, and we can learn more about illness by studying narratives individuals create about their experiences. Furthermore, Green (2006) claimed that health narratives are useful because they might provide coping strategies when contemplating terrifying or confusing health procedures, showcasing how narratives illustrate behavior people can follow in the future when they have similar experiences. Finally, Edgar, Satterfield, and Whaley (2005) noted that storytelling is one of the most powerful ways to discuss and interact about illness, and storytelling is similar to a narrative ethnography. While narrative ethnographies are advantageous, an analysis of narrative ethnographies does not provide generalizable assertions like those of traditional social scientific research. However, naturalistic generalizations can be ascertained by studying narrative ethnography (Stake, 1995), and this is beneficial because narratives provide context to more generalizable situations that would not otherwise be captured in a quantitative analysis. When discussing the importance of narrative ethnography research, Goodall (2004) stated, “We may uncover otherwise unspeakable meanings that shape our personal experience of life at work” (p. 189). Narrative ethnographies shed light on experiences that would otherwise not be understood or quantifiable. Analyses of cancer narratives in social science research have provided insight into how people negotiate new identities (Mathieson & Stam, 1995), demonstrated the importance of social support (Van Der Molen, 2000), and revealed the importance of metaphors in one’s cancer journey (Skott, 2002). Mathieson and Stam (1995) argued that cancer narratives give us a better understanding of who people are by listening to their stories. Furthermore, articulating one’s cancer experience should alter one’s identity (Yaskowich & Stam, 2003). Van Der Molen (2000) found that social support for cancer patients can significantly improve their well-being. Finally, cancer metaphors are commonly unearthed in cancer narrative research. Participants have described metaphors as “cancer eating” (Skott, 2002) and being “steamrollered” (Van Der Molen, 2000). These metaphors were useful tools that helped patients articulate their true feelings about their experience (Van Der Molen, 2000). Studying Goodall’s cancer narrative should, like previous research on cancer narratives, provide insight into his life and identity, and any metaphors used should paint a descriptive image of his cancer journey. Blogs are very similar to and arguably the same as personal narratives. First, as Goodall (2004) noted, people write narratives because the action provides an avenue to explain things. According to Child, Petronio, Agyeman-Budu, and Westermann (2011), “Blogs often function as an outlet for people to get their thoughts and feelings out and consequently, they share all types of information that can reflect a range of private and personal information” (p. 2017). Since blogs are a space where people can disclose personal stories, they function similarly to a narrative. Therefore, when we refer to Goodall’s blog in this article, we are simultaneously

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referring to his personal narrative, as communicated through his blog. Analyzing Goodall’s blog will provide a way to understand the experiences written from his narrative perspective, and help create naturalistic generalizations that other people might find useful if they ever have their own experience with pancreatic cancer. As previously noted, cancer narratives provide important insight into the experiences of cancer patients. This is an ethnographic case study into the cancer narrative of Bud Goodall, based upon the foundations of communication privacy management theory. Knowing that CPM theory is posited to understand how people manage, control, and share their personal information, the goal of this study is to highlight the presence of CPM theory in the context of Goodall’s online health narrative. Therefore, the following research questions are proposed: RQ1: In what ways does Goodall manage privacy and disclosure in his blog? RQ2: To what extent do the themes present in Goodall’s blog illustrate the components of communication privacy management?

METHOD The first objective of analyzing a case study is to understand the single case, instead of being able to understand other cases (Stake, 1995). The interpretation of a case study will create conclusions or general assertions, which are another form of generalization. To make sense of Goodall’s (2010) blog as a case study, we first independently read the blog (http://www.hlgoodall.com) in its entirety (108 posts) to gain familiarity with the text, as recommended by Lindlof and Taylor (2010). Then, to answer RQ1, we conducted an open coding strategy to identify components of CPM present in Goodall’s writing (Strauss & Corbin, 1998). “In the open coding category, the researcher examines the text . . . for salient categories of information supported by the text” (Cresswell, 2007, p. 160). When we had both independently completed the open coding phase, we met to discuss our codes and began the second phase of axial coding. Axial coding requires reassembling the data into groupings based on relationships and patterns within and among the categories identified (Starks & Trinidad, 2007). Together, we met several times to discuss and code our data into groupings based upon the components of CPM theory. When we could no longer reassemble our data into further subgroups consistent with the components of CPM, the axial coding stage was complete (Strauss & Corbin, 1998). This inductive approach led to the findings of RQ1 presented in the following. When answering RQ2, we followed the same open coding procedure as we did with RQ1. However, for additional rigor, to be included in the findings the potential themes found in the open coding phase had to be consistent with

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Owen’s (1984) criteria for a thematic analysis of recurrence, repetition, and forcefulness. Recent research studies have used Owen’s criteria for a thematic analysis (Dean & Oetzel, 2014; Khan, 2014; Romo & Dailey, 2014), and thus it is an appropriate method to identify themes in Goodall’s blog. According to Owen (1984), recurrence is present when the same meaning can be deduced from different posts in the blog, even if the same words or phrases are not used. Recurrence allows for the most significant issues to become apparent from reading the blog, while other meanings can remain hidden. Repetition was also used to identify themes in the blog posts. Owen (1984) contended that repetition is the reuse of a specific word or phrase in the blog. Repetition is an addition of recurrence because it also makes significant issues clear to the reader. However, repetition requires the precise use of a repeated word or phrase, while recurrence is an imbedded reappearance of meaning in the blog. The third indicator used to identify themes is forcefulness. Owen (1984) claimed that “forcefulness refers to vocal inflection, volume, or dramatic pauses which serve to stress and subordinate some utterances from other locutions in the oral reports” (p. 275). Forcefulness can also appear when authors underline certain words or phrases, capitalize words and phrases, or use other strategies to suggest significance in a particular post. In this case study, we did not have access to an audio recording and therefore we were not able to code for vocal inflections or volume changes. However, we did have access to the complete text and thus forcefulness could be identified if Goodall capitalized words, underlined certain words and phrases, or used bolding and/or italics to indicate significance. In the open coding process we identified many metaphors, so we also analyzed these because they appeared consistently in the data. Metaphors are a linguistic tool that often symbolizes additional meaning. “They can reveal shared understandings and situated realities of the social actor or social group” (Coffey & Atkinson, 1996, p. 86). Metaphors were analyzed by their purpose, cultural context and semantic mode, and broader context in which the metaphor occurs. These three criteria guided the researchers in making sense of the metaphors in the blog. Metaphors can be especially useful when analyzing a blog in a health context. According to Cline (2003), “Metaphors provide conceptual maps for thinking about diseases” (p. 292). Metaphors are also a useful tool cancer patients use to describe their journey (Van Der Molen, 2000). Goodall’s blog described his experience with pancreatic cancer and his use of metaphors might provide a conceptual map for how he thought about the disease. Therefore, we deemed it necessary to analyze the metaphors that appeared in the blog. Upon completion of the open coding stage to identify potential themes, we collaborated and discussed the potential themes and metaphors, to begin our axial coding stage, a process similar to that taken in analyzing RQ1. The themes that appeared consistently were discussed in an attempt to

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establish meaning to determine whether the themes accurately represented components of CPM theory. This is an inductive approach to assigning meaning to the blog posts because the themes emerged naturally from the readings (Thomas, 2006). Following the recommendations of Strauss and Corbin (1998), axial coding continued until theoretical saturation occurred and no new themes emerged consistently from the text. Thematic, theoretical saturation is critical in an inductive approach because it provides an opportunity for the researchers to make “general assertions” from the saturation points found in the data (Erickson, 1990, p. 152). Thus, when observable patterns and subthemes did not result in any new categories, the analysis process concluded.

FINDINGS Communication Privacy Management After reading through Goodall’s blog, it is clear that the components of communication privacy management theory (CPM) are present in Goodall’s writing (RQ1). The presence of each component throughout Goodall’s online cancer narrative is analyzed in what follows. Dialectical tension. CPM asserts people will experience a dialectical tension between public and private information (Petronio & Sweeney-Lewis, 2011). An example of the reveal–conceal dialectical tension appeared in Goodall’s blog when he stated: That said there is something else I need to say. If I scared any of you with my last post, forgive me for that was not my intent. Please know that I was only fulfilling my promise to you early on to “tell what is like to live this way” with cancer. And it’s not always going to be a pretty tell.

Conceptualization of private information and privacy rules. CPM argues that people believe they own their private information. When Goodall wrote his posts, he demonstrated he owned the information initially, and he controlled it by publishing his blog posts online. However, Goodall’s blog never explicitly included any rules regarding the privacy of his health information. In fact, the blog is consistent with Child and Petronio’s (2011) assertion that Goodall was inviting his readers to become co-owners of his private information, because he had many followers of his blog who often replied with comments after each post. One example of dialogue between Goodall and a follower reads: Commenter: Dear Bud, I continue to learn so much from you and am so touched and humbled as I read your words. When I lapse into my occasional pity parties, I reread your posts and am comforted by your eloquence, spirit, and bravery. Bud Goodall: Thank you . . . I appreciate your life and your scholarship but this year I have also

been privileged to appreciate your own health challenges and the brave way you have dealt with them.

Shared boundaries. Co-ownership occurs when people share private information, which creates a shared boundary (Petronio, 2002). Examples of co-ownership of health information were frequent in Goodall’s blog. One example occurred when his doctor took ownership of some of the health information. Goodall reported this when he said, “We were done, except for the one marker that had yet to be discussed.” The doctor went on to elaborate about Goodall’s blood marker, which indicated levels of his health. The doctor having access to this information about Goodall’s health demonstrated co-ownership because his doctor was aware of the blood marker results before Goodall was aware of the results. Boundary coordination. Boundary coordination refers to co-managing and co-owning private information, and it is separated into three processes: boundary linkages, boundary ownership, and boundary permeability (Petronio, 2002). Boundary linkages. Boundary linkages signify the connection between the discloser and receiver (Petronio & Durham, 2008). Boundary linkages appeared in Goodall’s blog when individuals read each of his posts. The linkage is signified when a reader responded to information from the post. For example, Goodall posted about a particularly positive doctor’s office visit where he heard good news. One reader replied, Bud, I should have read this this morning, or at least before I posted my pitiful Facebook status. Your generous sharing of your life and story puts my day and loss in perspective.

Responses like this were a common occurrence and help signify a linkage of the private information between the revealer and the receiver. Boundary ownership. Boundary ownership represents the obligation each person has to maintaining private information. The authors of a narrative ethnography online can maintain ownership rules through their communication and writing styles (Child & Agyeman-Budu, 2010). If a writer wants information to remain private, that writer might write in a code that only certain people understand. Boundary ownership was not evident in Goodall’s blog because he did not specify explicit rules for the ownership of his private disclosures. Boundary permeability. Boundary permeability refers to the level of openness between two people (Petronio, 2002), in this case Goodall and the reader. CPM blog research has indicated that blog writers maintain ownership rules through their communication and writing styles (Child & Agyeman-Budu, 2010). Boundary permeability might have been part of Goodall’s blog if he used a code that specific readers would understand. However, we were

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not aware of any code and thus boundary permeability was not observed in the blog. Boundary turbulence. Boundary turbulence occurs when individuals do not follow the expectations for privacy (Petronio, 2002). Boundary turbulence could not be observed in Goodall’s blog because we could not identify instances where readers of the blog shared private information with others. This was not possible, given the context and timing of this analysis. The findings of the thematic analysis for RQ2 uncovered four prominent themes: humor as a privacy management strategy, legitimization of co-owners, shifting privacy rules at end of life, and the use of metaphors as privacy protection. Together, these themes help illustrate and underscore the components of CPM, as later interpreted in the discussion. Each theme was clearly used throughout the entirety of the blog, and often in conjunction with other themes in the same post. Furthermore, many of the phrases used were repeated throughout the blog journey of Goodall. Humor as a privacy management strategy. The presence of humor was arguably one of the clearest themes throughout the blog. In line with CPM, humor was used as a privacy management strategy to reveal the author’s thoughts and feelings about his cancer experience. Humor was used from the beginning of his cancer journey right until the last few days of his life. A quotation from early on in his cancer battle pertains to his positive outlook on life with cancer through humor. He explains: Kenneth Burke teaches us that when confronted with a crisis there are two responses humans make to it: tragedy or comedy. He adds that comedy is the only response that offers us hope. And I’m all for hope. So, pardon me, I plan to talk about a lot of things until I can’t talk anymore, boring the hell out of some of you, and I hope that a lot of that talk will be filled with good humor and the occasional belly laugh. Humor is one of the good things in life. As the novelist Barry Hannah once put it, “God jokes with his best ones.” I do believe that is true.

Closer to the end of his battle with cancer, humor was still a prominent theme on the blog. In one of his very last blog posts, he recounts his daily struggles with pain and discomfort and says, Hmmmm. Let’s see. Most Americans are perfectly willing to accept a claim that links my swollen piggy feet to global warming, but these same adults are then unlikely to support my claim that global warming has many negative effects on the planet. ‘Scuse me, but aren’t my feet on the planet? Where are my painkillers?

Humor as a privacy management strategy allowed Goodall to articulate thoughts and experiences that might have been difficult to say, but also difficult for the recipient to read, and through the use of humor Goodall provided a remedy for revealing potentially painful information.

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Legitimization of co-owners. Goodall went out of his way to legitimize and manage the co-owner relationships that were present throughout his journey. Goodall’s main strategy for doing so was through expressing gratitude, an overwhelming theme in Bud’s writing. In several different blog posts, with a range of topics, he would state, “I am a lucky man,” often times writing it two or three times in a row for emphasis. At the beginning of his journey, some of his most legitimizing and gratitude-filled quotations emphasized the importance of his family, his new friends, and his doctor at Four Winds Cancer Center, all of whom became co-owners of Goodall’s cancer narrative. Recounting his first meeting with his oncologist, Dr. Sud, he said, “I can say that for us the entry of Dr. Sud into our lives was a Godsend.” In his last blog post, published after more than a year of cancer treatments at Four Winds, he was still expressing his gratitude for the staff and doctors by saying, “I have such wonderful caregivers! We are truly blessed.” Throughout his cancer battle, Goodall went into remission, and was happy to consider himself a cancer survivor, at least for the time being. In one post he says, “We are entering what will be my 15th month—our 15th month!—of living life as a cancer survivor. I am grateful, profoundly grateful, for that time.” This quotation specifically highlights how Goodall did not consider himself the only cancer survivor; by stating “our” he emphasized the remission was a victory for all of the co-owners, legitimizing the role and importance of Goodall’s co-owners. However joyful remission can be, the gratitude was present even in the more trying times. For example, before his sixth round of chemo treatments, the halfway point, Bud explained: Dr. Sud always asks me about side effects, and so far they have been minimal: tiredness, chemo fog, chemo sweats, sore throat and tongue, thinning hair, and a little sensitivity to cold on the days when the chemo drugs are being administered . . . Fortunately, none of these side effects is bad enough to stop treatment and the only one that causes me pain only requires a couple of Advil. I am lucky. Very, very lucky.

Here Goodall used gratitude for Dr. Sud to indicate his appreciation of her co-owning the illness with him by asking questions about the side effects. Gratitude, even while discussing chemotherapy side effects, helps demonstrate how overwhelming of a theme this was throughout the blog. Shifting privacy rules at end of life. End-of-life discussions were not as prominent as the other themes, but nonetheless, a present theme in Goodall’s narrative. Specifically, Goodall’s discussion of death and dying illustrated how the privacy rules shifted throughout his narrative. The first mention of end of life came early on, in his second post about having cancer. He said, “In Cancerland there are surreal clocks that serve different purposes and they run on their own good time. There is the Big Clock that counts the remaining days of my life and whose final readout is

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just out of sight.” He continued in the same post to say, “What time I have left is no longer free time.” These were the first instances where Goodall made reference to the fact that he would most likely die of pancreatic cancer, demonstrating that it was acceptable to speak about death, but in a nonintimate and abstract manner. Later in his journey, during his period of remission, Goodall started to experience pain in his abdomen. In a blog post expressing his fears that cancer had returned, he explicitly discussed his own end-of-life plan, affectionately referring to death as “the great whoosh.” He said:

While the quantity of metaphors was not large, each metaphor reoccurred throughout the blog, making them common themes and descriptions of Bud’s cancer narrative. Together, these metaphors grant permission to readers to see how Goodall is feeling about his life with cancer. Further, the metaphors allowed Goodall to express his emotions in a clever disguise through the use of abstract expressions allowing Goodall protection from writing his raw feelings.

The great whoosh will swoop into the room and one swift last breath later my body will no longer be of concern. The pain will be gone. And—this bit makes me smile—I won’t care. Why would I? I won’t need it anymore. My body will be cremated and my ashes will be scattered into the air and sea at Grayton Beach State Park in Florida, at the exact heavenly place on our intergalactic map, and intersection both real and imagined, where San and I fell in love and together changed forever our lives.

Through an ethnographic case study of Goodall’s blog about his journey with pancreatic cancer, several components of CPM are present (RQ1) and are further illustrated through four themes in Goodall’s writing (RQ2). Each theme illustrates an important component of the theory, but further applies the theory to online health narratives, specifically, within the realm of blogging. Additionally, this blog allows readers the opportunity to become co-owners of the health information Goodall shared, which is an important facet of CPM theory. Together, the themes, components, and ownership extend Goodall’s narrative to a thorough application of CPM theory and also showcase the potential for future research opportunities. A diagnosis of cancer brings many challenges and causes a heightening of emotions, changes in attitude, and a need to ask questions that was previously absent not only for the cancer patient, but also for the friends and family members of cancer patients as well (Anderson & Martin, 2003). In Goodall’s blog four themes, humor as a privacy management strategy, legitimization of co-owners, shifting privacy rules at end-of-life, and the use of metaphors as privacy protection, are used to manage the disclosure of personal health information born from a cancer diagnosis. Through these disclosures, readers of the blog become co-owners of Goodall’s health journey because as CPM asserts, private information is owned and controlled by each individual (Petronio & Sweeney-Lewis, 2011). Co-ownership of information has been shown to be both helpful and problematic in health contexts. For example, some people may feel that sharing their narrative with others will help in their fight to conquer a disease like cancer (Anderson & Martin, 2003). But sometimes the co-owner can violate privacy rules and share information with the doctors (Petronio et al., 2004). Goodall illustrated the benefits of co-ownership through his expressions of gratitude toward his doctors, family, and friends. Knowing blogs specifically allow for feedback from blog readers, when the response is positive it shapes the context for future disclosure. Specifically, when primary owners of health information feel as though their disclosures are being validated and acknowledged by co-owners, they are more likely to share more information in the future (Anderson & Martin, 2003). Additionally, reading an online narrative ethnography can lead to positive and negative

This quotation directly reflects the shift in privacy rules and disclosure on Goodall’s blog. Here, the disclosure is significantly more intimate and less abstract, shifting the privacy rules that were previously established. End-of-life discussions came up to enforce the reality that Goodall did have cancer, and although optimistic, he was planning and preparing to die from cancer, as evidenced by this quotation: “For me, it is no longer possible to deny my own death. I know the trajectory of my cancer.” This quotation occurred closer to the end of Goodall’s journey and further illustrated how Goodall’s disclosures about end-of-life shifted to become more revealing, such as in the way he discussed time as first not his own, then the idea of death being as fast as a whoosh, and finally realizing that he is waiting to die from cancer. Metaphors as privacy protection. As briefly mentioned earlier, Goodall referred to dying as “the great whoosh.” This was one of many metaphors that he used to reveal his feelings about his journey with cancer. One of the earliest metaphors to originate was “cancerland,” which was used to describe the community of people who battle cancer. Goodall referred to his time at Four Winds Cancer Center and his struggles with cancer all as part of “cancerland.” He also created the phrase “The Big Book of Bud’s Amazing Life” to help express some of the anxiety he felt about death and his remembrance overall. He said: What does happen instead is that The Big Book of Bud feels much lighter to carry around in my head, while at the same time I know deep in my soul that it’s up to me to write down what will ultimately appear there. How what I write about it is within my purview but how it will be remembered is beyond my control, a duality that has been the case since I began writing my life story and sharing it with others.

DISCUSSION

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THE GREAT WHOOSH

outcomes because writers of the narrative might feel frustrated with individuals who try to take co-ownership of the narrative, but might also appreciate the social support (Weber & Solomon, 2008), as was the case with Goodall, who expressed this through the legitimization of co-owners. Through the blog, Goodall shared his private information at his own discretion, illustrating how he not only owned his private fight with cancer but also controlled what information people read about his journey and in what form they read it (i.e., humor and metaphors). People like Goodall can disclose private information online, while still understanding that they have the rights and responsibilities to regulate how much of that information is actually shared (Child & Petronio, 2011). This understanding not only displays how the original owner creates co-ownership, but also establishes the private/public dialectical tension present in CPM theory. Furthermore, Goodall’s health disclosures on his blog created both intentional and unintentional boundary linkages. Boundary linkages explain that once information is shared, or once people are granted access to an area where private information can be shared, such as a blog, the information moves from individual ownership to collective ownership (Child & Petronio, 2011). Online narrative ethnography writers can create links to readers once people have viewed the posts online. However, narrative ethnography writers who use blogs can prevent unintentional links by “setting privacy rules for co-owners” (Child et al., 2012, p. 1861) through the use of online settings, for example. Goodall intentionally created these boundary linkages by first having a public blog, but also through positively disclosing his cancer and other health-related information with blog readers. Additionally, boundary linkages were also established through Goodall’s disclaimers about the information he chose to share, which was at times ugly or unpleasant to readers. Unintentionally, Goodall’s blog created boundary linkages because although Goodall could control what information was posted on the blog, he could not control who read the information, or when the information was read. The linkages created with the readers of the blog most likely represent inferential confidants. Petronio (2002) explained that an inferential confidant expects disclosure to occur based on the context of the interaction. Since the disclosure happened on a blog, the readers should have assumed they would experience disclosure from Goodall. But the readers could not elicit disclosure from Goodall directly, and thus are less likely to be considered deliberate confidants. Reluctant confidants are possible if readers stumble across the blog accidentally. However, accidental readers would probably not provide comments, which were common after each new blog post. The use of humor as a privacy management strategy and legitimization of co-owners are two strategies used to reveal and conceal information on the blog, helping to illustrate the dialectical tension of CPM. Goodall took a very positive approach to his cancer journey, as displayed through his abundant use of humor and expressions of gratitude, which

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helps to explain how Goodall might have protected himself and his co-owners from subsequent health challenges, such as depression, and maintained and restored well-being while under stress (Pitts & Socha, 2012). Health narratives have specifically been known to act as medicine for the ill, allowing patients not only to control their information sharing, but also to gain a greater understanding of themselves and their relationships (Anderson & Martin, 2003). Furthermore, the expressions of humor and gratitude, rather than sorrow and other negative emotions, creates the dialectical tension of information being shared, and explicitly makes the public information positive, illustrating the control owners have in crafting their health narrative. Gratitude, for example, has the potential to positively affect an individual’s mental and physical health, as well as to strengthen social bonds (Pitts & Socha, 2012). Thereby, Goodall was actively engaging in a strategy to legitimize readers’ importance to him while also potentially strengthening their bonds. This helps bolster the points about the dialectical tension, as Goodall might have been writing about gratitude to enhance his own health, but also to create a stronger connection with co-owners and blog readers, since gratitude, unlike cancer, is a feeling everyone is familiar with. Expressions of humor work similarly to expressions of gratitude in that they both increase overall feelings of wellbeing and can have a positive impact on a person’s communication and relationships (Pitts & Socha, 2012). Through the use of humor, people can have a higher quality of life, feel less lonely, and have higher self-esteem (Pitts & Socha, 2012). These are some indications as to why Goodall might have relied on humor as a privacy management strategy so much throughout his journey. Humor and legitimization of co-owners allowed Goodall to not only manage the tension of concealing and revealing information about his health, but also connect with his readers and cope with his own struggles more positively. In addition to the other themes, Goodall used several metaphors, specifically with regard to dying and end-of-life conversations, which help highlight how privacy rules can shift within CPM theory. Goodall’s use of metaphors also provided a way for him to articulate his emotions about cancer (Van Der Molen, 2000). Again, Goodall revealed and concealed his feelings, perpetuating a dialectical tension, by focusing on positive aspects of dying and the end of his life. However, Goodall’s use of metaphors may also have been a strategy of protection in his quest to control information sharing with blog readers. One explanation for his positive outlook could be that Goodall wanted to die on his own terms and in the best of circumstances, rather than focusing on the loss of dying itself. This explanation is similar to the many ways in which Goodall controlled and created co-ownership with blog readers, because although he could have been fighting negative emotions about dying, Goodall chose to remain positive about the “great whoosh.” Positive communication helps to explain that the gift of time can be precious, inspiring, and some of the most meaningful

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SMITH AND BRUNNER

weeks relationally (Pitts & Socha, 2012). Through the blog, Goodall spoke about time both directly and metaphorically, and used the blog as an outlet to share his uplifting, empowering communication, which is common and supported with previous end-of-life research (Pitts & Socha, 2012). Goodall’s blog posts about dying and the end of life evolve over time into some of the most personal, intimate posts, illustrating the shift in privacy rules as Goodall begins to discuss dying more often and in more detail as time passes. Dying is a deeply personal process and the meaning of death varies from person to person, having a great impact on their communication with others (Pitts, 2011). Through sharing his end-of-life feelings and practical details, Goodall furthered the co-ownership, shifted privacy rules over time, and, once again, managed his private information and feelings through the use of metaphors, humor, and gratitude, all of which framed his end-of-life talk. Future Directions and Limitations This health case study was an attempt to connect CPM to an online, narrative ethnography. Although our study only focused on one narrative, CPM helps to understand how other online health narratives can be similar in their management of revealing and concealing information. However, our study did not gather evidence for every component of CPM theory, which was a limitation. Specifically, our study examined ownership of information, boundary linkages, and dialectical tension, but did not find practical evidence within the sample of Goodall’s blog to support the other components such as boundary coordination and boundary turbulence. Furthermore, the area of private conceptualization of information was challenging because we did not have access to Goodall’s thoughts outside of the blog. It is possible that he was conceptualizing the information very differently than what was portrayed, but without knowing this with certainty, we cannot comment on how private information was actually conceptualized other than what is seen online. Future research can easily replicate this study, through either a thematic analysis or using a different type of method on a different health blog. However, examining several online health narratives cumulatively could be more insightful. Additionally, studying several online health narratives, not solely focusing on cancer, might find support for the other components of CPM theory that were not found in this study. Finally, future research moving CPM to online disclosures more generally is an interesting and worthwhile endeavor, given how much information, specifically health information, is disclosed online.

CONCLUSION In this research study we strived to understand a blog and online health narrative through the use of a narrative

case study. Grounded in CPM theory, and utilizing a thematic analysis, the emergent themes of humor as a privacy management strategy, legitimization of co-owners, shifting privacy rules at end of life, and the use of metaphors as privacy protection all represented and illustrated the components of CPM. Specifically, Goodall’s writing represents the push–pull dialectical tension people experience to reveal and conceal information. The blog further indicated collective ownership of Goodall’s health narrative because the blog posts are online for anyone to view. Finally, the blog demonstrated intentional and unintentional links with the readers. They are intentional because Goodall purposefully posted his thoughts online, but they are unintentional in that he cannot control who reads the information and when the information is read. Goodall’s blog provided an excellent representation of the desire to reveal private information to people, regardless of his ability to maintain the ownership of that information once it has been posted on his blog. Furthermore, this study contributes to a deeper understanding of online information management and to a deeper understanding of health narratives. While the field of communication continues to recover from Goodall’s untimely departure, his blog provides a way for him to remain connected with both old and new scholars alike.

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