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research-article2015

QHRXXX10.1177/1049732315581614Qualitative Health ResearchPhillips et al.

Article

Personas to Guide Understanding Traditions of Gay Men Living With HIV Who Smoke

Qualitative Health Research 1­–14 © The Author(s) 2015 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049732315581614 qhr.sagepub.com

J. Craig Phillips1, Derek J. Rowsell1, Jack Boomer2, Jae-Yung Kwon3, and Leanne M. Currie3

Abstract Gay men living with HIV (GMLWH) who smoke are less responsive to generalized smoking reduction and cessation (SRC) programs than heterosexual persons. This study explored perspectives of GMLWH during the design of a web-based SRC intervention. Participatory design techniques were used to guide the creation of personas that are composite representations of a person who would use the web-based SRC intervention. Researcher-participants (n = 13) created all data. Data analysis involved thematic coding drawing from an ethnographic perspective. Thematic analysis revealed seven intersecting themes related to SRC among participants, and an overarching theme navigating life. Concepts drawn from our ethnographic approach highlight cultural differences between GMLWH and mainstream society. Personas offer a mechanism for interpreting experiences and traditions of GMLWH. SRC interventions with GMLWH must address their social realities that include tools for navigating life, disease, and social identity. Keywords British Columbia, Canada; community-based programs; ethnography; HIV/AIDS; participatory action research (PAR); smoking cessation; stigma; tobacco and health; qualitative

Smoking rates among gay men living with HIV (GMLWH) who smoke in Vancouver range from 63% to 71% (Lampinen, Bonner, Rusch, & Hogg, 2006; Phillips et al., 2011), well above the Canadian average of 20% (Statistics Canada, 2012). Smoking is a major modifiable determinant of health and has been associated with significant comorbidities (e.g., cardiovascular, neuropsychiatric, pulmonary, renal diseases), HIV disease progression, and premature mortality (Center for Disease Control and Prevention, 2014). Among gay or bisexual men, higher frequency and severity of reported illness symptoms were associated with heavier tobacco use (Webb, Vanable, Carey, & Blair, 2007) and there may be a dose-response between number of packs smoked per day and presence of comorbid illness (Miguez-Burbano, Wyatt, Lewis, Rodriguez, & Duncan, 2010). Combination antiretroviral therapy has dramatically changed health outcomes and life expectancy for persons living with HIV. Smoking reduction and cessation (SRC) interventions tailored to the unique needs and traditions of persons living with HIV may enhance the health benefits achieved by combination antiretroviral therapy. Tobacco cessation researchers have found that generalized SRC interventions have limited success with gay men; however,

tailoring SRC interventions to the unique needs of these men may improve SRC rates (Phillips et al., 2012). Recent literature illustrates not only that SRC represents a significant opportunity for promoting health among GMLWH who smoke but also that these men are interested in SRC (Phillips et al., 2012). In studies of smoking behaviors and intentions to quit among GMLWH who smoke, a majority was planning to quit and at least three quarters had made previous quit attempts (Pachankis, Westmaas, & Dougherty, 2011; Schwappach, 2008; Walls & Wisenski, 2010). This article describes findings from the design and development phase of a tailored webbased SRC intervention being created in collaboration with GMLWH who smoke as researcher-participants.

1

University of Ottawa, Ottawa, Ontario, Canada British Columbia Lung Association, Vancouver, British Columbia, Canada 3 University of British Columbia, Vancouver, British Columbia, Canada 2

Corresponding Author: J. Craig Phillips, University of Ottawa, School of Nursing, 451 chemin Smyth Road, Ottawa, Ontario, Canada K1H 8M5. Email: [email protected]

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Background and Significance Smoking, HIV, and Comorbid Illness Smoking prevalence is not only higher among gay men than in the mainstream population (Phillips et al., 2011; Statistics Canada, 2012) but smoking rates also vary within the gay community. In Canada, the Sex Now 201112 national survey of men who have sex with men (N = 7,908) found GMLWH to be 3 times more likely to smoke compared with those who were HIV-negative (Phillips et al., 2013). High rates of smoking among GMLWH can, in part, be attributed to social, structural, and contextual aspects of gay male culture, and research being conducted in environments, such as bars, where smoking was common (Schwappach, 2009). It is also argued that smoking is perceived as part of the idealized masculinity and used as a strategy for concealing gay sexual orientation in specific circumstances (Pachankis et al., 2011). Smoking may represent a form of protest masculinity for GMLWH who smoke, whereby they resist moral imperatives about being responsible for self-health. Furthermore, it has been suggested that high-risk behaviors (including smoking) provide a means to compensate for HIV-positive gay men’s perception that they are doubly emasculated, first by their sexual identities, then by their illness. Such identities and expressions require tailored, rather than a “onesize-fits-all” SRC intervention (Pachankis et al., 2011; Schwappach, 2008; Walls & Wisenski, 2010). The concept of social death (Wright, 2013) is another possible explanation for risk-taking behaviors, including smoking among GMLWH. Social death is when people are considered or consider themselves “as good as dead.” Social death has been documented among persons living with HIV and is intimately related to stigma. Through the process of social death, GMLWH who smoke may perceive that there is no hope for survival, therefore no need for health promoting interventions, and may cultivate a notion that harming a diseased body is acceptable (Wright, 2013). Social death may contribute to disempowerment, lowered self-esteem, and decreased wellbeing among persons living with HIV and when combined with HIV-related stigma, may perpetuate the breakdown of key social support networks (Thomas, 2006). Co-morbidities, medical challenges, and mortality. Smoking among GMLWH is a particularly important health issue because of its association with significant HIV-related comorbidities (e.g., HIV-related opportunistic infections and malignancies), comorbid illness (e.g., cardiovascular, pulmonary, and renal diseases), and more rapid health decline among these men (Center for Disease Control and Prevention, 2014; Miguez-Burbano et al., 2010; Vidrine et al., 2014). The increase in illness symptoms given

heavier tobacco use highlights the need for GMLWH who smoke to collaborate with health care providers for enhanced understanding of these associations and to counter the adverse health effects of tobacco use. Psychological and mental health challenges. It is estimated that 30% to 50% of persons living with HIV have a mental illness (Israelski et al., 2007), most often depression (Penzak, Reddy, & Grimsley, 2000), and many use tobacco as a form of self-medication (Israelski et al., 2007; Penzak et al., 2000). Therefore, depressive symptoms are also likely to be a factor in failed SRC attempts (Reynolds, 2009). Depressive symptoms may limit a person’s ability to fully engage in SRC interventions as well as other health promoting and disease management activities. Depressive symptoms contribute to lowered levels of motivation, selfesteem, and self-efficacy to engage in activities of daily living and among persons living with HIV to engage in managing HIV disease (Eller et al., 2013; Nokes et al., 2012). In addition, many GMLWH who smoke have difficulty quitting smoking as a result of the perceived stressrelieving benefits of tobacco, including pleasure, improved well-being, and relief from unpleasant emotions and physical symptoms (Reynolds, Neidig, & Wewers, 2004). Despite recognizing smoking as detrimental to their health, many HIV-positive men (Reynolds et al., 2004) report that being diagnosed with HIV was significantly more frightening than the ill effects of smoking, and this belief resulted in the use of strategies for neutralizing the effects of smoking (i.e., exercise, healthy diet, no alcohol or illicit drug use), but this did not translate into quitting smoking. Men with advanced HIV disease believed they would not live long enough to experience negative effects of their smoking and were not concerned by potential long-term health risks (Reynolds et al., 2004). In studies of sexual risk behavior (Holmes & O’Byrne, 2010; Holmes & Warner, 2005), gay men reported consideration of the consequences of their health risk behavior, including smoking. Therefore, SRC programs inclusive of individual counseling tailored to these men should address mental health issues and men’s beliefs about the impact and actions of tobacco (Reynolds et al., 2004). Smoking often emerges concomitantly with alcohol and other substance use in a context of HIV (Reynolds, 2009). Among GMLWH, heavier smoking was positively associated with heavier and more frequent drinking (Webb et al., 2007). GMLWH who smoke are more likely to report greater use of illicit drugs and current drug use than non-smokers and many continue using drugs after HIV diagnosis (Vidrine, 2009). The high rates of comorbid substance use, mental health challenges, and smoking among these men create additional challenges that should be addressed concomitantly and can be integrated into tailored SRC programs.

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Social Contextual Influences on Health Behaviors and Tobacco Use The ecosocial contextual influences of smoking and social inequalities that shape tobacco use and cessation are gaining recognition in tobacco control research and practice (Poland et al., 2006; Vidrine et al., 2014). In the United States, the Tobacco Research Network on Disparities (TReND) identified lesbian, gay, bisexual, and transgender (LGBT) persons as a priority group for whom interventions targeting the general population of smokers may be ineffective (Fagan et al., 2004) and suggest that LGBT community leaders may not view smoking as a priority health issue because of the worry that tobacco control might alienate community members who smoke (Offen, Smith, & Malone, 2008). Tobacco control strategies have not adequately addressed LGBT groups, while tobacco products have been directly marketed to gay men and lesbians. Tobacco marketing efforts were initially perceived as positive affirmation among members of the LGBT community. However, this marketing strategy was most likely related to loss of revenue for tobacco companies when smoking rates among the general population began to decline (Dilley, Spigner, Boysun, Dent, & Pizacani, 2008; Smith & Malone, 2003). Homophobia and homo-negativity (anti-gay stigma) are institutionalized forms of discrimination that profoundly and adversely affect the health and well-being of gay men. Despite improved social tolerance and legal equality in parts of North America, health disparities for LGBT persons persist. LGBT persons also encounter structural, financial, and personal barriers that limit their access to appropriate health care services (Institute of Medicine, 2011; Tobacco Research Network on Disparities [TReND], 2008). It is important to conceptualize relationships between stress, coping, and behaviors such as tobacco use as an outcome of the structural inequality the person navigates within society rather than further stigmatizing the individual for “poor choices,” “unhealthy lifestyle” and inability to quit smoking (Phillips et al., 2012). “Minority stress” describes how subpopulations suffer greater risks of ill health due to status as an oppressed, minority group (Meyer, Schwartz, & Frost, 2008). GMLWH who smoke feel considerable stress and stigma associated with their illness, which creates significant distress and anxiety that are barriers to SRC (Meyer et al., 2008; Shirley, Kesari, & Glesby, 2013). The theoretical “stigma paradigm” critically unpacks the process of “moral attribution” that occurs in relation to illnesses such as HIV and health behaviors such as smoking, when there is a social perception that illness is linked to an individual’s perceived moral failings and identity as a “social deviant” (Goffman, 1963). HIV has been thought to exemplify the social

blame, dread, and fear that is associated with stigmatized illnesses (Weitz, 1991). Through the committed and vocal advocacy of LGBT people and their allies, HIV-related stigma has diminished, but has not been eradicated. Similarly, there have been improvements in access to care for LGBT people, but disparities in access persist in comparison with the general population (Meyer et al., 2008). We do not position gay men’s tobacco use solely as a response to stigma or psychosocial stressors. Like other forms of substance use, any community-level intervention to address smoking must consider how this health behavior is tied to social relationships, identities, and practices construed as relaxing or pleasurable (Poland et al., 2006; Reynolds, 2009). Gender, ethnic, and class oppression are all political factors that combine to affect health, health care, illness, and medical care (Meyer et al., 2008; Phillips et al., 2012). Drawing from ethnography, the culture and traditions of GMLWH who smoke can be described, analyzed, and understood. Agar (1986) described ethnography as an effort to understand and describe social actions of a given group so that mainstream society might begin to understand the traditions of that group. Traditions, in this case, are the story or perspective that coherently explains an otherwise unusual behavior (Agar, 1986). To more fully understand cultural meanings from the perspectives of GMLWH who smoke, thematic analysis used the selective approach articulated by van Manen (1990). The purpose of this study was to explore perspectives of GMLWH who smoke or who have recently quit smoking to inform the design and development of a web-based SRC intervention.

Method This article is part of a broader study to design, develop, and implement a tailored SRC intervention with GMLWH who smoke. The intent of the SRC is to integrate technology to increase accessibility for GMLWH who smoke from all geographic regions within Canada. Web-based SRC intervention strategies are expected to be one of the best options to reach GMLWH who smoke. This community collaboration used peer research methodologies, consistent with Meaningful Involvement of Persons Living With HIV/AIDS (MIPA; Canadian HIV/AIDS Legal Network, 2005) and Greater Involvement of Persons Living With HIV/AIDS (GIPA; UNAIDS, 2000) principles, to engage GMLWH who smoke in all aspects of SRC intervention design and to build community capacity and social capital. In this article, we have designated our community partners as “researcher-participants.” In the subsequent phases of the technology design, these individuals will participate in the design of the web-based SRC intervention. To design and develop the web-based SRC

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intervention, we facilitated participatory design sessions, which included the creation of personas in an activity called empathy mapping. This study draws on qualitative concepts from participatory design, ethnography, and the use of personas. Researcher-participants created personas that they believed were representative of the average gay man living with HIV who smokes. “Personas are detailed descriptions of imaginary people constructed out of wellunderstood, highly specified data about real people” (Pruitt & Adlin, 2006, p. 3). Personas are used in marketing to help people who do not belong to a target market (e.g., the software engineer) understand their advertising audience (Pruitt & Adlin, 2006). In this case, personas were tools for the researchers and researcher-participants to develop an understanding of the culture of GMLWH who smoke. Prior to engaging with researcher-participants, ethical approval for this study was obtained from the University of Ottawa, Health Sciences and Sciences Research Ethics Board and the University of British Columbia, Behavioural Research Ethics Board. Approval from both ethics boards was required to ensure compliance with Canadian research ethics guidelines. Informed consent, which included informed, voluntary, and confidential nature of participation, was provided and signed by researcher-participants at each participatory design session. Prior to starting the design sessions, researcher-participants were reminded that because of the open discussion process of the participatory design sessions, their anonymity could not be fully protected. Researcher-participants verbally agreed that any discussions of a personal nature that occurred in the sessions would be considered private and would not be discussed outside of the sessions.

Sample: Researcher-Participants as Participatory Designers Two participatory design sessions were facilitated by the authors, during which, researcher-participants (n = 13) achieved consensus on research activities and implemented data collection for this study. The design sessions occurred in a medium-sized Canadian city (n = 5) and a large Canadian city (n = 8). Researcher-participants in each session contributed to the creation of personas that were analyzed from an ethnographic perspective. The authors acted as participant-observers and collected extensive field notes during persona creation.

Researcher-Participant Recruitment Gatekeepers at AIDS Service Organizations in both cities identified potential researcher-participants based on typical case style sampling in an effort to bring together, what he considers, average GMLWH who smoke from among members of the organization. This gatekeeper was known

to the researcher-participants, which allowed the authors to access the population and gain researcher-participant trust through a strategic association. All researcher-participants met the inclusion criteria by self-describing as gay and HIV positive, expressing desire to quit smoking or having quit within the prior 6 months, being older than 19 years of age, and being available for the participatory design session. Due to funding constraints, researcherparticipants were also required to be proficient in spoken English. Women and heterosexual men were not invited to participate in this research project. Researcherparticipants received a Can$50 honorarium for their participation in the participatory design sessions.

Procedures During the participatory design sessions, the personas of average GMLWH who smoke were created via empathy maps that are explained in a recent article by (Kwon, Phillips, & Currie, 2014). Researcher-participants worked together as a group to complete empathy-mapping activities. Each group of researcher-participants generated a name and demographic information for their “persona” and ascribed unique thoughts, feelings, and behaviors to each persona. To the knowledge of the researchers, this project is the first use of empathy maps for public health intervention design and implementation research. Empathy maps are a reflective tool that involves the pictorial illustration of the persona being described that is divided into quadrants labeled, “Think and Feel,” “See,” “Say and Do,” and “Hear” (Gray, Brown, & Macanufo, 2010). Researcher-participants illustrated the personas while filling in the quadrants with information related to their persona’s daily life. Empathy maps release researcher-participants from personal stigma related to smoking behaviors, which, the authors believe, may result in more accurate descriptions of smoking behavior. The empathy map allows researcher-participants to disclose thoughts and feelings of an average gay man living with HIV who smokes rather than having to disclose their personal experiences. Previous research has found that personas are valuable in eliciting increased openness from researcher-participants when discussing topics which might otherwise be perceived as shameful (Hisham, 2009). During creation of the personas, researcher-participants were not given feedback from the authors about what input was most valuable to decrease the likelihood of desirable responding patterns, which would have introduced researcher bias. This exercise resulted in the creation of four personas, Joe Average, Biff Barista, Riley Homo, and Joe Schmo, who were analyzed using an iterative thematic approach and concepts drawn from the ethnographic tradition (Agar, 1986; van Manen, 1990). The empathy maps were translated into

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Phillips et al. narrative persona sketches by the authors to ease the understanding of the persona as a person.

Analysis To understand the culture of GMLWH who smoke, thematic coding used hermeneutic phenomenological reflection, because we were trying “to unearth something ‘telling,’ something ‘meaningful,’ something ‘thematic’ in the various experiential accounts” (van Manen, 1990, p. 88). Raw data included words and phrases written on Post-it® (removable self-stick) notes or flip chart paper and assembled by the researcher-participants into the empathy maps on tables or whiteboards. All visual images created during empathy mapping were photographed for analysis. The researchers present during participatory design sessions conducted initial coding of data represented in the photographs and generated a list of codes from each photograph. A matrix of all data from each of the four empathy maps was created to facilitate thematic coding and further data analysis. The authors independently created an initial set of codes and then explored their initial codes as a group. The codes used in this study attempt to capture the meaning of the thoughts, feelings, or behaviors of the personas. Researcher-participant perspectives were integrated into preliminary coding through the empathy maps, which provided the data elements to be analyzed using a selective approach (van Manen, 1990). Consensus was reached through discussion when one or more author did not identify the same codes for a datum. Initial codes were sorted into major themes that are presented in the “Findings” section of this article. Drawing from an ethnographic approach, we utilized empathy maps and field notes from the participatory design sessions. The thoughts, feelings, and behaviors of the personas are understood through the ethnographic term strips, which are clearly circumscribed actions or behaviors (Agar, 1986). These strips are culturally significant to the persona and are not coherent when understood through mainstream perspectives. The strips were analyzed through multiple-strip resolution (Agar, 1986) until the authors coherently understood the tradition that explains the personas’ thoughts, feelings, and behaviors. The authors have chosen to draw from the ethnographic approach because the findings of previous studies and the thematic analysis of the present study suggest that GMLWH who smoke have different traditions related to SRC in comparison with other smokers (Phillips et al., 2012; Schwappach, 2008, 2009).

Interpretation The personas were created through a process of gamestorming (a process for facilitating innovation) and the

eventual consensus of researcher-participants in small groups who determined the best representation of their collective needs (Currie, Kwon, & Phillips, 2014; Gray et al., 2010; Phillips, Rowsell, Kwon, & Currie, 2014). The authors believed that the persona creation process allowed researcher-participants to reflect on their behavior as GMLWH. This reflection is useful in the participatory design process, because it facilitates a sense of belonging and ownership among researcher-participants. It allows them to express their concerns about smoking and thoughts about quitting smoking in a way that removes the burden of shame from the individual. Allowing researcher-participants to create personas without interference from other research team members protected the personas from having aspects of the author’s cultural bias. This approach builds a sense of trust and partnership between researcher-participants and the authors, creating a community of co-researchers. From the authors’ perspective, this process allowed deeper understanding of the norms and cultural influences that contribute to smoking behaviors among GMLWH who smoke. For researcher-participants and authors, as members of a design and development team, this process facilitated shared responsibility and interconnectedness as co-researchers that will be useful for future design and implementation activities.

Findings Meeting the Personas Following the participatory design sessions, the authors thoroughly debriefed to discuss the scientific merits of the empathy maps and to confirm the appropriateness of the analytical approach. By consensus, we decided to continue with the proposed analytical method of a thematic analysis and analysis drawing from an ethnographic approach (Agar, 1986). Analyses were carried out using the personas constructed during the empathy-mapping component of the participatory design sessions as cases to be analyzed. The four personas that were created by the researcher-participants had unique qualities and individual characteristics that highlight the individuality of GMLWH who smoke. The personas also highlighted the dichotomies of being a gay man living with HIV who smokes and a member of a larger community of gay men. The personas evolved to reveal evidence of shared characteristics and community-wide concerns. The four personas, Joe Average, Biff Barista, Riley Homo, and Joe Schmo, were developed by the researcher-participants in groups. Figure 1 is a photograph of the empathy map created by the researcher-participants for Joe Average. The personas are characterized below as an amalgamated persona.

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Figure 1.  Empathy map for persona, Joe Average. Amalgamated Persona: a 45-year-old gay man living in a large city who smokes. Works in the downtown core as an administrative assistant for a large corporation, but fantasizes about having a different job. He has HIV, which he manages with diet, exercise, and a medication regime. He is involved in his healthcare and has frequent health check-ups. Smoking is engrained in everything he does, from eating his breakfast and taking his morning medications, to an after-sex-smoke, to a smoke before he goes to bed at night. He finds that smoking has a ritualistic quality that brings him a sense of comfort and relaxation. He has also had trouble quitting because all his friends smoke. He feels that smoking gives him a sense of belonging with his peers and finds that most of his social activities involve smoking. He recognizes that smoking is not good for him and wants to stop, but has not been successful in previous attempts.

Ethnographic and Thematic Analyses Based on the characteristics of the four personas, we carried out our ethnographic and thematic analyses (Agar, 1986). An iterative approach to thematic analysis commenced with coding and recoding data until seven individual themes emerged. The first theme that emerged was navigating life, followed by triple stigma, immunity to public health messages, complexity of managing

HIV, complexity of managing identity, benefits of smoking, anxiety about life, and apathy about life. We do not believe that the order in which the themes emerged necessarily suggests the relative importance of any one theme in relation to the others. Instead, we believe that these major themes play a role in the lives of most GMLWH who smoke, but the contribution of each theme varies for an individual gay man living with HIV. Figure 2 is a graphic representation of the interplay of the major themes. Within the diagram, the theme of navigating life is represented as the major concern for GLMWHs and it encompasses the other themes. The other themes are represented with dashed borders to signify the dynamic exchange that occurs between each concept and the overarching theme of navigating life. The locations and overlap of the major themes indicate the likely conceptual relationships that will need to be tested in future research. We found significant interplay between the thematic analysis and ethnographic analysis, and therefore, the analyses are presented together. The cultural traditions that we discovered during the participatory design sessions provide important contextual information and a thick description of the meaning of smoking behavior for these men. We found that GMLWH who smoke have

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Immunity to Public Health Messages

Stigmas: Gay-related HIV-related Smoking-related

Anxiety About Life

Complexity of Managing HIV

Complexity of Managing Identity

Apathy About Life

Benefits of Smoking

Figure 2.  Thematic map.

Note. Dashed lines signify permeability of information exchanged between each theme and the overarching theme of navigating life.

important cultural traditions that warrant further investigation to determine how traditions affect SRC. Navigating life and HIV.  The researcher-participants identified an overarching theme of Navigating Life and HIV, which encompassed several other themes that will be discussed further. Navigating life and HIV refers to the researcher-participants’ belief that a gay man living with HIV who smokes has unique life struggles and complexities. Within each persona, there emerged an association between daily routines and daily stressors that cued smoking behavior. Evolution of the personas revealed associations between smoking and eating meals, on breaks at work, and whenever a stressful life event occurred. For example, the researcher-participants reported that the persona Joe Average frequently smokes when stressed about deadlines and finances. Each persona displayed a dichotomous relationship between healthier behaviors and smoking. For example, visiting a doctor is a healthier behavior and also a cue for smoking.

Another example, which evolved from all four personas, was a routine involving taking medications for HIV and smoking. All four personas smoked or thought about smoking during or just after taking medications. Daily activity planning was associated with smoking for the personas. For example, the researcher-participants reported that Joe Schmo thought about “what’s up 4 [for] the day” and smoked while planning how to navigate his day. Emergence of this theme confirms that this population requires special consideration for SRC initiatives (Schwappach, 2008, 2009). Despite the complexities of navigating life and HIV, it is noteworthy that the researcher-participants reported that each of the personas demonstrated levels of resilience and adaptation to surviving and thriving with HIV. The researcher-participants reported that each of the personas worked and was active in all aspects of daily living, including exploring intimacy and sexual relations with other people. From an ethnographic perspective, the routines of navigating life have specific cultural importance to GMLWH

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who smoke. Although most humans have some identifiable routines, GMLWH who smoke rely on routines to manage the medical and social dimensions of HIV in addition to maintaining their overall well-being. The researcher-participants reported that each of the personas evolved to include daily routines that appear to be inflexible and pervasive to all aspects of their life. The authors found that attention to health regimens, including combination antiretroviral therapy regimens, was a focus of the daily routines of most GMLWH who smoke. We suspect that rigid attention to health and medication regimens has transferred into other routines in these men’s lives. The special importance placed on the maintenance of routines may create extra difficulties when routine changes are required such as in the case of SRC. The cultural importance of routine is so ingrained that GMLWH who smoke may find routinized smoking behaviors especially difficult to change, and may require additional support and special care when changing these behaviors. The limited scope of this study made a deeper understanding of the importance of routines and the complications of altering routines impossible. This study does suggest that in-depth follow-up studies must examine how GMLWH who smoke navigate changes to their routines of managing HIV disease and their daily lives. Triple stigma.  The personas evolved to identify stigmatization first for being gay, second for being HIV positive, and third for being a smoker. This “triple stigma” was evident in each of the personas and the researcherparticipants reported that the personas experienced stigmatization in each of these three areas and believed that the effects of stigma are cumulative. For example, the researcher-participants reported that Joe Average felt “isolated” for smoking and described having an internal monologue telling him to “do this and do that.” The researcher-participants reported that this experience of isolation was also felt by Riley Homo, who reported feeling “lonely.” Loneliness and isolation were interpreted as a process of stigmatization that GMLWH who smoke encounter in their daily lives. The researcher-participants reported that the persona Riley Homo provided an example of the stigmatization process by reporting that he hears people saying “discouraging words” and “derogatory comments.” The researcher-participants reported that Riley Homo also described the stigmatization process as involving “being talked down to.” Further evidence emerged in the persona Joe Schmo for whom the researcher-participants suggested stigmatization leads him to question if he will even be able to “have sex?” It was unclear if these men knew which stigma might block their access to sexual partners or lead to rejection; however, it was a present and consistent theme that added to the uncertainty of navigating life and HIV.

Analysis from an ethnographic perspective identified a major discrepancy between what mainstream society might consider the most stigmatizing of the three stigmas and what the researcher-participants revealed through the personas. Although the authors had expected that HIV or being gay would be considered the most stigmatized of the three stigmas, the researcher-participants through the personas suggested that GMLWH who smoke find smoking to be more stigmatizing than either being HIV positive or being gay. The men reported that recent changes to smoking by-laws in Western Canada make them feel continuously more stigmatized for their smoking behaviors. The researcher-participants described how non-smokers would give disapproving looks, will cross the street, and even cough obnoxiously if a smoker “lights-up” nearby. The researcher-participants revealed through the personas that the triple stigmatization process created feelings of guilt and shame, but these feelings did not translate into SRC activities. The evolution of the personas displayed a cultural difference in how guilt and shame motivate change among GMLWH who smoke. These men attempted, but did not change the behavior for which they felt most stigmatized, which led the authors to believe that more research is needed to determine what motivates these men to attempt SRC. Our findings suggested that the use of guilt or shame in SRC programs is not effective for creating behavior change with GMLWH who smoke. Immunity to public health messages.  The theme of immunity to public health messages emerged from the researcher-participants as a possible explanation for their continued smoking behavior. The researcher-participants in this study reported that education about smoking was “like being flogged. It’s over the top.” This statement summarized researcher-participant’s beliefs that current public health messages are pervasive, and these men have developed a tolerance to the messages and no longer find them effective. One participant provided the example of “package sorting” to find the photograph on cigarette packages that is “least likely to be relevant to [his] life—a pregnant woman.” Behavioral characteristics of the researcher-participants that emerged through the personas suggested that current SRC approaches are not effective for GMLWH who smoke, because of the development of tolerance to mainstream public health messages. Researcher-participants reported seeing no smoking signs that they did not heed and continued to smoke anyway. The researcher-participants revealed through the personas a cultural difference in the way that GMLWH who smoke perceive and use public health messaging. The researcher-participants described the persona Riley Homo as a member of the counter-culture who is not interested in fitting into a non-smoking society. For him, antismoking campaigns are antagonizing and validate his

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Phillips et al. belief that smoking sets him apart from mainstream society. Although it is unlikely that all GMLWH who smoke are affected in this way, it is important to acknowledge that some people are antagonized by current public health messages. The findings of this study support the need for tailored SRC programs that meet the unique needs of GMLWH who smoke and that do not use guilt and shame as methods to induce behavior change. Complexity of managing HIV.  The researcher-participants expressed the theme of complexity of managing HIV as a contributor to smoking behavior. The daily tasks associated with the management of HIV were described to be an inconvenience, and smoking was reported as a coping mechanism for the stresses of HIV management. Researcher-participants reported that GMLWH who smoke are likely to smoke after doctor’s appointments and after taking medications. The researcher-participants reported that the persona Joe Schmo frequently smokes when he calls in sick to work. Calling in sick is understood by the authors to be stressful because illness causes feelings of inadequacy and shame that may be related to the complexities of living with HIV and managing health as a person living with HIV. The evolution of the personas suggests that GMLWH who smoke have a specific ritual for smoking after taking HIV medications. This ritual was the likely result of the sudden increased focus on HIV as a physical disease with expected negative sequelae that include feelings of discomfort and anxiety about disease progression. Smoking is a method of relieving the discomfort brought on by the daily reminder of living with a chronic illness. Because the researcher-participants reported that the personas also focus on their HIV status when going to medical appointments or when they are acutely ill, they appear to engage in smoking behaviors stemming from the complexities of managing HIV more than 1 time per day. Complexity of managing identity.  The complexities of managing identity were understood through Goffman’s (1963) description of the discredited or discredible person. The discredited person has had their identity spoiled by means of a stigma which is visible or known to peers; whereas the discredible person may have his or her identity spoiled at any time should the stigma become known (Goffman, 1963). GMLWH who smoke experienced emotional distress consistent with the distress of the discredible person. These men may also experience the distress of being a discredited person if their HIV status is made public. For example, researcher-participants through Riley Homo reported “fear of rejection” if peers discover that he was living with HIV. Our findings suggested that smoking might move an individual from discredible to discredited because smoking is a stigmatized behavior in their communities.

Through ethnographic analysis, we discovered that GMLWH who smoke might consider stigma associated with smoking as a proxy for the stigmatization they would experience if their HIV status became public. For GMLWH who smoke, the move from discredible to discredited person may be a relief from the stress of threatened identity. Smoking may serve as an outlet for GMLWH who smoke to allow themselves to be marked with one stigma in an effort to relieve distress about the possibility of their personal stigma related to HIV becoming known. The researcher-participants reported that Riley Homo had a scattered mind because of the chaos of not knowing who was safe to trust with the disclosure of HIV status. Benefits of smoking. GMLWH who smoke reported numerous benefits of smoking, the most prominent being social in nature. Social benefits of smoking usually included some aspect of relationship building or maintenance. GMLWH who smoke use smoking as an endearing trait that allows them to form communities with peers, colleagues, and romantic partners who also smoke. The researcher-participants reported social benefits from smoking for all four personas. The most commonly reported social use of smoking was smoking with peers. Smoking was also viewed as an escape from reality and boredom. Escaping reality foreshadowed the perceived magical qualities of smoking that emerged in other themes (e.g., anxiety about life). Furthermore, smoking was sometimes a way to mark the gay man living with HIV who smokes as a member of this counter-culture. The researcher-participants through the personas suggested that smoking in a group is a powerful source of satisfaction and an important component of being a gay man living with HIV. The traditions associated with smoking appear to be related to special bonds that emerged between GMLWH who smoke. The relational benefits from social network interaction outweigh comprehension of the physical problems associated with smoking among GMLWH who smoke. The reduction of perceived negative effects coupled with the tradition of powerful and important social bonding suggests that SRC activities may be perceived as having no net-benefit for GMLWH who smoke. Some researcher-participants reported, “if I knew smoking made my HIV worse, I would consider quitting smoking,” which is an important counterpoint to the benefit of smoking. Anxiety about life.  The final two themes, anxiety about life and apathy about life, are dichotomous and appear to be the opposite ends of the same spectrum, with aspects of both existing in each persona. For this reason, we have conceptualized anxiety about life and apathy about life as being distinct and presented them separately. Anxiety

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about life refers to the experience of anxiety within the spectrum of navigating life and HIV. GMLWH who smoke face unique life events and circumstances that create anxiety. The evolution of the personas suggests anxiety about the physical and emotional health of GMLWH who smoke as a person living with HIV. Thoughts and feelings of stress related to managing physical health were repeatedly reported. The researcher-participants reported that the personas engaged in numerous healthier behaviors, such as eating well, regular medical checkups, taking medications, and getting exercise. These behaviors were interpreted as a need to maintain physical health. Smoking became a tool to cope with management of HIV disease and the social and emotional ramifications of being a gay man living with HIV who smokes. In addition, anxiety about life also included the shock that the participant-researchers did not die from HIV disease when most of their friends and loved ones from their community had died. For GMLWH who smoke, anxiety about life includes the realization about what to do with your life when you had not planned for a future because you thought you would be dead. These men had anxiety because they were navigating HIV as a chronic illness and not a death sentence. Although using smoking as a tool appeared to be counterintuitive. An examination of the underlying tradition provided some explanation for the behavior that emerged through the creation of the personas. GMLWH who smoke experienced multiple stressors that exhaust their available coping mechanisms. Smoking for these men provided a relaxing effect with a magical undertone. The men refer to smoking as an ethereal experience that moderated anxiety. The magical elements of smoking for GMLWH who smoke were summed up by the persona Joe Average for whom a researcher-participant wrote “it’s 4:20 somewhere over the rainbow.” This statement refers to the notion that it is always a good time to smoke and the time referent is related to the pleasurable effect of smoking and the use of marijuana.

Furthermore, the personas support a notion of doing whatever behavior their environment dictates. Researcherparticipants reported that Riley Homo does “whatever others tell him to do.” The authors believe apathy about life decisions may suggest that researcher-participants feel they cannot control all aspects of their lives. Despite evidence of apathy about life, the difficult challenges of navigating life and HIV, and evidence of perceived loss of control of some aspects of life, there was evidence of sources of power revealed by researcherparticipants through the personas. These sources of power may contribute to resilience among GMLWH who smoke. A sense of community and feelings of belonging to their social networks were evident in each persona. The researcher-participants reported that the personas were engaged in web-based social networking activities and familiar with the use of “chat” rooms to communicate with members of their communities. The researcher-participants reported attending smoking cessation groups and were interested in exploring new SRC strategies. During the participatory design sessions and in the creation of the personas, the authors observed a sense that aspects of the lives of GMLWH who smoke were beyond their control and the researcher-participants revealed through the personas that it was not productive to attempt to regain control in these situations. A tradition emerged of GMLWH who smoke resigning themselves to work in positions of subservience. This tradition appeared to meet the needs of GMLWH who smoke by freeing up emotional and psychological resources that would otherwise be consumed by employment. This would allow GMLWH who smoke to redirect resources to the management of their personal lives. Possible implications of apathy about life are explored further in the “Discussion” section.

Apathy about life.  Apathy about life co-exists with anxiety about life. Apathy about life may represent a need to relinquish control of some aspects of life to free resources to manage the anxiety provoking aspects of life with HIV. Apathy about life was most strongly related to life ambitions. The researcher-participants through the personas suggested that the work-life aspirations of GMLWH who smoke might not reach the level of other men in society. Instead of selecting a profession with prestige or autonomy, such as an actor or director, the researcher-participants assigned the persona, Riley Homo, the job of production assistant. Biff was assigned the job of barista when it is equally plausible that the researcher-participants could have named him the owner or manager.

SRC interventions and clinical practice guidelines for tobacco dependence have been developed to counter the adverse effects of smoking. Successful biomedical SRC interventions exist (Lloyd-Richardson et al., 2009). However, concomitant use of combination antiretroviral therapy drugs, psychopharmacologic drugs, and drugs for SRC among persons living with HIV require close monitoring and may require dosage adjustments for both HIV and SRC medications (Stead & Lancaster, 2005; Tornero & Mafe, 2009). Behavioral interventions including counseling (individual and group), with a variety of providers and delivery techniques (e.g., cell phone, WATI [WebAsssited Technology Intervention]), were reported to be beneficial as SRC interventions in two published pilot

Discussion Smoking Cessation Interventions for Persons Living With HIV

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Phillips et al. studies with gay men and LGBT smokers, especially if they included multiple and extended sessions (Harding, Bensley, & Corrigan, 2004; Walls & Wisenski, 2010). Gay men who smoke preferred SRC programs tailored to their cultural and community context (Pachankis et al., 2011; Schwappach, 2008, 2009; Walls & Wisenski, 2010). Although traditional SRC guidelines provide some direction to health care providers working with persons living with HIV, they are insufficient to meet the needs of GMLWH who smoke. Traditional guidelines do not address the specificities of smoking among GMLWH who smoke and empirical evidence regarding which approaches are most beneficial for these men is poorly understood. Moreover, conspicuously absent from the gay men’s literature is attention to masculinities (LloydRichardson et al., 2009) as it intersects with culture, social class, sexualities and age, and more specifically, how these factors influence tailored SRC efforts. Clearly, user-oriented, gender-sensitive interventions (LloydRichardson et al., 2009; Schwappach, 2008, 2009) for SRC are needed for GMLWH who smoke. Findings of this study confirmed the importance of including discussions of gay men’s masculinities in research regarding GMLWH who smoke. Although the personas did not explicitly describe the effects of masculinities on SRC, they did give subtle cues about the importance of masculinities to GMLWH who smoke. Three of the four personas included sexual content. For example, Biff Barista included “J. O. with buddy” (jacking off [masturbating] with a buddy) and Riley Homo described feeling “horny.” We believe that the researcherparticipants’ inclusion of sexual activity in a discussion about SRC offers a glimpse of their sexuality and suggest that GMLWH who smoke require SRC initiatives that explore sexual practices and sexuality. Furthermore, masculinities within this group have frequently been linked to risk-taking behaviors, especially where sexuality is involved (Holmes & Warner, 2005; Schwappach, 2008, 2009). Although sexuality should be included in research and SRC initiatives, this inclusion should not focus on concepts of risk taking. Instead, research and SRC initiatives must find ways to use the unique construction of gay men’s masculinities to highlight strengths inherent in this population (Phillips et al., 2012; Schwappach, 2009).

Web-Based SRC Interventions The traditions of GMLWH who smoke revealed through the personas suggest the usefulness of tailored interventions that integrate the use of technologies and social networking. This requires the use of facilitation devices to reach a larger number of these men and help them gain access to the SRC supports and services that they need.

The growing ubiquitous nature of technologies, including cell phones, smart phones, and access to the Internet, has provided an opportunity to apply behavioral interventions for SRC via technologies (Vidrine et al., 2014). A 2009 meta-analysis of online support for smoking cessation found that tailored, web-based interventions were more effective than mailed materials. The relative risk of smoking if receiving mailed materials versus web-based treatment was 1.77 (95% confidence interval [CI] = [1.39, 2.27]; Shahab & McEwen, 2009). However, in studies in which the control group had a web-based non-smoking cessation intervention, the effect was less profound but still statistically significant; the relative risk of not smoking after study end (range 90 days to 1 year) for tailored web-based smoking cessation versus web-based alternative interventions was 1.22 (95% CI = [1.09, 1.37]; Shahab & McEwen, 2009). Tailored SRC interventions included web-based social cognitive therapy, lifestyle logs, interactive quizzes with feedback, tailored emails from peer coaches, pre-recorded audio messages, text messages, motivational emails, links to “craving hotline,” chat rooms, ask-the-expert forums, thought and mood management, and videos. Most of the studies used multiple technologies to address specific needs at specific times. These innovative technologies provide potentially promising avenues for developing a SRC program targeting GMLWH who smoke and are consistent with strategies used by other SRC researchers working with persons living with HIV (Vidrine et al., 2014).

Traditions Revealed Through Personas Evolution of the personas revealed the traditions of GMLWH who smoke to include factors related to navigating life and HIV, triple stigma, immunity to public health messages, managing HIV, managing social identity, benefits of smoking, anxiety about life, and apathy about life. Although this study did not allow a full ethnographic approach, the authors found that there were significant cultural differences that required at least a basic understanding to appreciate the importance of the findings from our thematic analysis. Concepts were drawn from Agar’s (1986) framework because of the inherent flexibility it offers when explaining cultural variations. Although this study did not allow the authors to achieve a coherent understanding for all the traditions, it did validate the need for further research into the effect of cultural differences on SRC in GMLWH who smoke. The theme navigating life was found to interact with the theme stigma because the triple stigmatization of GMLWH who smoke directly affects the behaviors of these men. Although the personas do not directly articulate it, the authors suspect that GMLWH who smoke may continue to experience some effects of social death. Social

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death is when people are considered or consider themselves “as good as dead” (Wright, 2013). Social death was widely reported during the early years of the AIDS epidemic, during which time a person diagnosed with HIV was considered terminally ill and was expected to die in the relative near-future (Wright, 2013). Continued physiological life after HIV diagnosis became complicated by this grieving process that isolated the person living with HIV (Wright, 2013). Currently, combination antiretroviral therapy is able to delay disease progression, and the social death of persons living with HIV has become less visible; however, this population remains highly stigmatized (Cohen et al., 2011; Wright, 2013). It is possible that the social death of GMLWH who smoke may create a culture of resistance to health threats among them and that risktaking behaviors, including smoking, may be considered acceptable. From this perspective, GMLWH who smoke have already experienced some degree of social death that cultivates a notion that harming a diseased body is acceptable. The social death of GMLWH who smoke may also be implicated in the men’s immunity to public health messages. There is a clear need to determine the extent to which GMLWH who smoke are affected by stigma and how these effects translate into SRC behaviors. The researcher-participants through the personas revealed that the theme, apathy about life, contained a tradition that may be of importance to understanding SRC behaviors for GMLWH who smoke. The authors believe that a strengths-based approach is the most appropriate strategy to counteract adverse outcomes that can be attributed to apathy about life. SRC interventions for GMLWH who smoke must take into consideration the accomplishments these men have achieved and the challenges they have overcome in navigating life and HIV. Resilience to overcome challenges inherent in navigating life and HIV was evident in each of the personas. Although researcher-participants created each persona to work in a subservient job, they all worked and contributed actively to their community.

Limitations The limitations of this study include the small sample size and lack of possibility to generalize to a larger group of GMLWH who smoke other than our study’s researcherparticipants. This factor limits the generalizability of the study. However, these findings may be transferable to other samples. All members of the participatory design team were required to interact in English, which may have limited the potential for gaining perspectives of GMLWH from other linguistic groups. The authors had limited personal experience with the realities of living with HIV. This may have limited their ability to fully understand the unique challenges faced by GMLWH who

smoke and other persons living with HIV. This may also have been a strength of the study, because the authors are able to provide an unbiased perspective in the analysis of findings from the study. There were limited opportunities for authors to validate analyses with GMLWH who smoke as researcher-participants.

Conclusion Personas offer a mechanism for interpreting and understanding the experiences and traditions of minority populations, including GMLWH who smoke. SRC interventions with GMLWH who smoke must address the social realities they face as they navigate life, HIV, and other comorbid diseases, and social identities. Current SRC programs have had limited success in reducing the prevalence of smoking within this community and leave GMLWH who smoke at risk of deleterious effects of smoking-related morbidities and mortality. Future SRC interventions with GMLWH who smoke must be mindful of the traditions these men have and build on the strengths and resiliency of GMLWH who smoke, individually, collectively, and as active and productive members of broader communities (e.g., persons living with HIV, gay men) and society in general. Research into specific effective SRC programming is needed to guide funding for health prevention initiatives with these men. Acknowledgment We thank the researcher-participants who shared their life experiences during the participatory design sessions.

Authors’ Notes Portions of this article were presented at the 20th International AIDS Conference, July 22, 2014, in Melbourne, Australia.

Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Canadian Institutes of Health Research, Institute of Infection and Immunity (Grant 120231).

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Author Biographies J. Craig Phillips, PhD, LLM, RN, ARNP, PMHCNS-BC, ACRN, is an associate professor at the University of Ottawa, School of Nursing, Ottawa, Canada. Derek J. Rowsell, BA, is a nursing student at the University of Ottawa, School of Nursing, Ottawa, Canada. Jack Boomer, BEd, MPA, is the director of QuitNow, BC Lung Association and Principal of Context Research in Vancouver, British Columbia. Jae-Yung Kwon, MSN, RN, is a doctoral nursing student at the University of British Columbia, School of Nursing, Vancouver, Canada. Leanne M. Currie, PhD, RN, is an associate professor at the University of British Columbia, School of Nursing, Vancouver, Canada.

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