Men,Masculinities,and Hemophilia

Abstract

Hemophilia is a congenital bleeding disorder that predominantly affects men. Home intravenous replacement of missing clotting factor is the most effective treatment; however, the uptake of preventative treatment (also known as prophylaxis) varies among men with hemophilia. The purpose of the current qualitative study was to describe the connections between masculinities and men’s (n = 11) experiences of hemophilia across varying age groups. The inductively derived findings revealed bleed-related joint pain as the primary prompt for men to treat or seek medical help. Many men reported experiencing a high number of bleed-related injuries in adolescence, particularly in high school, oftentimes as a result of engaging in idealized masculine physical activities. Though the limitations imposed by hemophilia were contested by most men early on in their lives, as men grow older more conservative approaches were employed both in terms of treatment and activity to reduce the potential for residual bleed-related disabilities. Overall, the results indicate that men with hemophilia may benefit from peer and professional education about recognition, prevention, and optimal treatment of bleeds. Furthermore, masculine ideals act as important context in which men navigate hemophilia management practices and may facilitate contesting or conceding behaviors. Masculine ideals of strength and control may be garnered to facilitate optimal hemophilia management practices.

Introduction

Hemophilia is a bleeding disorder that is caused by a deficiency in blood clotting factor VIII (known as Hemophilia A) or factor IX (known as Hemophilia B) resulting in frequent episodes of bleeding (World Federation of Hemophilia, 2013). Hemophilia is sex-linked by virtue of the clotting factor genes being carried on the X-chromosome. Hemophilia is predominantly a male disorder (Canadian Hemophilia Society, 2013): males who are affected are symptomatic and will pass the affected X-chromosome onto their daughters but not onto their sons (Hemophilia of Georgia, 2014), and females who have an affected X-chromosome are typically asymptomatic, but have a 50% chance of passing the affected gene onto their children.

Men with hemophilia experience bleeds most frequently in joints and surrounding muscles resulting in pain, bruising, swelling, and reduced range of motion. After several joint bleeds chronic hemophilic arthropathy, an arthritis-like disease, can develop, most commonly in knees, ankles, and elbows resulting in physical disability (Aznar et al., 2012; Zappa, McDaniel, Marandola, & Allen, 2012). There are three levels of severity based on the amount of clotting factor in the blood: mild (5% to 40% of normal), moderate (1% to 5% of normal), or severe (<1% of normal) (World Federation of Hemophilia, 2013). Men with severe hemophilia experience bleeds spontaneously from physical activities (e.g., running, skating, football, hockey), strenuous physical activity (e.g., lifting), or minor trauma, whereas men with mild hemophilia tend to bleed as a result of a major trauma or surgery (Aznar et al., 2012; World Federation of Hemophilia, 2013).

With the development of synthetic clotting factor concentrates in the 1990s, treating hemophilia with blood transfusions ended, and contemporary treatment includes the intravenous administration of clotting factor, the frequency of which depends on the severity of the disease (World Federation of Hemophilia, 2013). Infusing with factor concentrate after an active bleed, known as on-demand treatment, can relieve symptoms immediately (Aznar et al., 2012). For most men with severe hemophilia, optimal hemophilia management consists of “self-infusion” on a regular basis (known as prophylaxis) to prevent bleeding episodes and minimize risk of joint damage (Aznar et al., 2012; Manco-Johnson et al., 2007; Zappa et al., 2012). In Canada at least half (55%) of the adult men with severe hemophilia A and 20% of those with severe hemophilia B are on prophylaxis (Biss et al., 2008; Jackson et al., 2014; Jackson et al., 2015; Zappa et al., 2012). Prophylaxis reduces recurrent joint bleeds, damage, and disability amid increasing quality of life and overall life expectancy (Aznar et al., 2012; Manco-Johnson et al., 2007; Tagariello et al., 2009; Zappa et al., 2012). Despite the benefits of prophylaxis the low uptake and adherence among males is poorly understood (Lindvall, Colstrup, Loogna, Wollter, & Grönhaug, 2010; Llewellyn, Miners, Lee, Harrington, & Weinman, 2003; Remor, 2011).

Masculinities and Men’s Health

Connell’s Masculinities (1995, 2005) framework has been used to describe and theorize men’s health practices and illness experiences based on five relational categorizations: (a) hegemonic, (b) complicit, (c) subordinate, (d) marginalized, and (e) protest. Hegemonic masculinity is a socially constructed idealized masculinity whereby men have dominance or power over women and other men, embodying an array of characteristics including self-reliance, aggression, competitiveness, and autonomy. Though diverse cultures may value and claim specific performativity’s as constituting hegemonic masculinity, Western societies also idealize control, stoicism, and toughness as manly virtues (Galdas, Cheater, & Marshall, 2007). The term complicit masculinity is used to describe that, although only a very few men can legitimately claim to be hegemonic, many men are complicit in sustaining a gender hierarchy to benefit from the inequalities derived from the patriarchal dominance over women and some men. Subordinate masculinity is a less powerful position wherein low socioeconomic status and/or stigma explicitly exclude some men from mainstream society. Marginalized masculinity refers to men whose full participation is limited due to material and structural constraints, such as race (i.e., being a visible minority; Connell, 2005). Connell (2005) described protest masculinity among men who, despite lacking the social capital to legitimately claim or comply with hegemonic masculinity, embrace risk and destructive behaviors to prove their masculinity.

The aforementioned masculinities framework has been used in conjunction with other social determinants of health (Evans, Frank, Oliffe, & Gregory, 2011) to describe patterns and diversity in men’s health help-seeking and self-management practices for illnesses including prostate cancer (Oliffe, 2005) and depression (Oliffe, Kelly, Bottorff, Johnson, & Wong, 2011). Empirical evidence has also revealed how men’s alignments to hegemonic masculine characteristics including competitiveness and self-reliance can positively or negatively influence their health outcomes (Courtenay, 2000a; Sloan, Gough, & Conner, 2009). For example, while power and control are synonymous with hegemonic masculinity they have been linked to men’s risk taking and poor health outcomes (e.g., violence, alcohol overuse) (Courtenay, 2000a, 2000b; Stanistreet, 2005) as well as men’s self-health wherein alignments to protector and provider roles can garner significant benefits to the well-being of men and their families (O’Brien, Hunt, & Hart, 2005). Building on this, Sloan et al. (2009) eloquently pointed out the importance of men’s agency in connecting masculinities, highlighting how men can effectively “do” health by explaining healthy lifestyle choices as reflecting their overall autonomy and rational decision making.

Of course, the connections between masculinities and men’s health practices and illness experiences are contextual, and though there is consensus that masculinity is neither entirely good nor bad for male health there is increasing interest in working with men (as distinct from working to change men) to advance their health (Robertson, 2006). Given that hemophilia is a predominantly male disease that changes across men’s lives, the purpose of the current study was to describe the connections between masculinities and men’s experiences of hemophilia across varying age groups.

Method

Constructivist grounded theory, a methodology that allows the researcher to gain an analytical sense of how participants interpret their experiences, was used to study men’s experiences of hemophilia (Charmaz, 2006). The study was approved by the local research ethics board prior to recruitment and data collection.

Procedures

The study was conducted in Western Canada wherein public health care includes specialist hemophilia services and the provision of factor replacement. These free services are centralized in urban centers and some men have to travel considerable distances to access specialist providers and acute care for their hemophilia. Potential participants were registered with the local adult hemophilia program and met the following inclusion criteria: male, 19 years or older, and history of severe or moderately severe hemophilia A or B (clotting factor VIII or IX at 2% or less of normal). Nursing staff employed several recruitment strategies that included providing a written invitation to eligible men at their clinical visits and/or sending an invite via the post or email. Individuals interested in participating in the study contacted the project coordinator via email or telephone and were provided additional information about the study, including the purpose, format, risks and benefits, and procedures for maintaining confidentiality. Focus group interviews were scheduled based on the availability of the participants and research staff and written informed consent was obtained from participants prior to the commencement of the interview. Participants’ parking expenses were reimbursed and they received a $50 gift certificate to acknowledge their time and contribution to the study.

Sample

Participants were of diverse ancestries reflecting multicultural Western Canada including Anglo-Canadian (n = 6, 55%), Chinese (n = 2, 18%), East Indian (n = 1, 9%), Iranian (n = 1, 9%), and Serbian (n = 1, 9%) and had severe (n = 8, 73%) or moderately severe (n = 3, 27%) (2% or less factor levels) hemophilia A. Six participants (55%) had a partner (i.e., married, common law) and 4 (36%) had completed higher education studies. Participants worked full or part-time (n = 8, 73%) or were students (n = 3, 27%). Study participants’ ages ranged from 21 to 64 years, and mean age was 35.6 years.

In terms of hemophilia-related issues and treatments, participants experienced joint damage to ankles, knees, hips, shoulders, elbows, and wrists, with eight (73%) participants currently using prophylactic treatment of varying regimens including daily, three times a week, every third day, and one to two times a week. Two participants (18%) had acquired HIV infections through factor use in the 1980s and six (55%) had contracted Hepatitis C.

Data Collection

Focus group interviews were semi-structured and lasted approximately 90 minutes. At the beginning of each focus group, the researchers reviewed the purpose of the study, answered questions, and reiterated the confidentiality procedures for the research project. The two male interviewers were registered nurses trained in research methods but they did not have clinical expertise in providing hemophilia care. An interview guide was used and questions included: What are your biggest challenges around having hemophilia? How have your relationships been affected by hemophilia? The interview questions were broad and provoked much discussion among participants. For example, the emphasis that many men placed on sports did not reflect the weighting of the interview questions on the guide. In this regard the interviews were discussions, a style encouraged by the interviewers to facilitate conversations about what was most important to the participants (Krueger & Casey, 2009). The focus group interviews were digitally recorded and a speaker’s log was kept to connect specific data to participants. Participants were assigned to one of three age-stratified focus groups: a 19- to 25-year-old group (n = 3, 27%), a 26- to 39-year-old group (n = 4, 36%), and a 40-year or older group (n = 4, 36%). This stratification was purposeful and aided the cohesiveness of the focus groups and afforded opportunities to compare the data across the age groups based on illness histories and trajectories.

Data Analysis

The digitally recorded focus group interviews were transcribed verbatim and checked for accuracy by the first author. The data were analyzed using processes consistent with constructivist grounded theory described by Charmaz (2006) to distill concepts and themes describing the participants’ experiences of hemophilia, and connections to masculinities. Inductive and deductive approaches were used to generate concepts, themes, and theory recognizing the findings as an interpretive portrayal of the phenomenon wherein the participants and researchers co-constructed the data (Charmaz, 2006).

Though each of the focus group interviews were reviewed post transcription to evaluate the quality of the data and effectiveness of the interview guide, formal data analysis did not commence until all the data were collected. The analyses were conducted by the five authors, and began with reading the interviews to develop a coding schedule to which the data were allocated. Line-by-line coding, naming each line of written data and incident-to-incident coding, comparison of incidents (Charmaz, 2006), which included a focus on distilling men’s discrete experiences of hemophilia including stigma, self-management strategies, work, and relationships, were developed and compared across the three age groups. Constant comparative methods were used to describe the patterns and variations in the coded data within and across the three focus groups. The researchers met to discuss their interpretations of the data and consensus about the themes and subthemes were reached through conversations by the team members and in the writing up of the findings for this article. In some instances this group process included author’s conceding to subsume or adjust their interpretations based on what the majority agreed were representative of the data. Likewise, the application of the findings to clinical practice and theory-based issues were discussed to ensure the usefulness and the reach of the research to include those who experience hemophilia.

Results

Two themes were developed: (a) Knowing your body and (b) Conceding and contesting restrictions. Knowing your body refers to the men’s hemophilia-related embodied issues and this theme comprised three subthemes: (a) recognizing and responding to pain, (b) navigating treatment, and (c) managing risk. The second theme, Conceding and contesting restrictions, characterized men’s identity-making in the context of hemophilia across three subthemes: (a) wising up to physical limitations; (b) working, partnered men; and (c) claiming health. Within the results sections prevailing themes are described amid drawing attention to the specific findings that reflect diversity and difference between the three age-stratified focus groups.

Knowing Your Body

Participants spoke of how they learned about their body emphasizing the need to recognize the symptoms of a bleed, the activities likely to lead to a bleed, and treatment methods for stopping or preventing a bleed. Most men indicated that they had become experts in managing their hemophilia, but suggested that their skills had developed with time and exposure to an array of circumstances amid ever-changing treatment regimens.

Recognizing and Responding to Pain

In line with the wider men’s health literature suggesting pain as the symptom most often prompting men to seek medical help (Courtenay, 2000a; Galdas et al., 2007; White & Johnson, 2000), participants highlighted how pain was the cardinal sign of a bleed, leading them to infuse factor and/or to solicit professional medical help. A 30-year-old man confirmed, “I found before bleeds, I feel some pain. . . . I have some pain and when I feel that pain I infuse.” Indeed, pain was the universal reference point for which infusing factor was the remedy, and none of the participants referred to other well-known signs of bleeding including joint tightness or hot or bubbling and tingling sensations inside a joint as mustering these actions. There was also consensus that pain had to be attended to quickly because if it was left untreated it would not only increase the severity of the pain it could result in residual joint damage, disability, and chronic pain. In addition, pain led participants to thoughtfully [re]consider the activities most likely underpinning their bleeds. Walking or running on a hard surface (i.e., concrete) for example, was riskier than doing the same activity on a soft surface (i.e., grass). In this regard, activities inducing pain were investigated by participants, and with repeated exposure, prevention strategies were taken up by adjusting actions and/or infusing factor prophylactically. As a 22-year-old participant explained:

I snowboard when I want to. I know there is a risk, but I don’t let it [hemophilia] limit [me] . . . I know there is an impact on my ankles every time I go over bumps. I do take prophylaxis before. I treat snowboarding as a sport.

Some participants explained how they had learned to differentiate chronic arthritic joint pain from the acute pain resulting from a bleed. In this context, there were marked differences between the participants based on age. For example, men in the 19- to 24-year-old age group were less likely to have chronic joint pain, knowledge around cause–effect and respond quickly to bleed related pain, a finding reflected in their array of what might be argued as risky practices (i.e., contact sports). In contrast, men in the 40 years or older group were steadfast and regimented in their pain management strategies, and skilled in differentiating chronic and acute bleed induced joint pain. This difference highlighted the men’s changing relationships to pain across the life course, wherein with age and experience participants were increasingly keyed to predicting their body’s reactions as well as recognizing and responding to pain. As a 44-year-old man clarified:

To me, it’s, it’s very, um, case specific right? It’s whatever the bleed is, it’s—have you noticed a pattern? How much pain are you in? Like, if it’s a joint, I know how that joint is typically gonna respond or react in advance to a particular activity.

Evident in this older man’s quote was his understanding about the connectedness between specific activities and pain, and actions toward preventing bleeds. Indeed, when the older men were asked what they would advise younger men who were relatively new to hemophilia, they focused on choosing activities to avoid bleed induced pain as a means for reducing residual chronic joint pain later in life. As a 47-year-old man eloquently explained:

I feel like I fell in with the wrong crowd in high school, and it wasn’t drugs or alcohol, it was, I fell in love with the basketball crowd and I took great pleasure in playing basketball, but that was a poor choice. And, I guess, my advice would be to find other ways to meet those needs that I know I had as a young man, you know, to challenge myself and to play, and to find ways that, other ways to get those needs met.

It is also important to note that participants were often dismissive of pain and other symptoms of illnesses not directly related to hemophilia. As a 23-year-old man explained, “anything that’s not injury related to hemophilia, it’s no big deal at all.” Participants asserted that they would not consult a doctor for ailments including stomachache, headache, cold, or flu. This reluctance around health help-seeking, though in line with longstanding men’s health practices chronicled by Galdas et al. (2007), reveals participants’ alignment to these masculine norms as provisional, operating in contexts outside of hemophilia.

Navigating Treatment

Diversity existed regarding the men’s understandings and practices around preventing bleeds through infusing factor prophylactically. Many men reported using trial and error approaches to finding the right treatment regime, even when supported by expert hemophilia clinicians. The most common factor infusion prophylaxis regimes were self-administering on weekdays two or three times a week, a practice which was out of sync with some men’s scheduled activities. For example, a 23-year-old man explained: “I’ve tried different regimes, like two times a week, three times a week, but if I was infusing on the day of one sport and not on the other, I found that I would have breakthrough bleeds.” Similarly, a 30-year-old man reported infusing only on weekdays resulted in “struggling for two extra days” on the weekends and the tendency “to bleed more after that.” So, while prophylaxis was endorsed by participants in principle, finding an effective flexible treatment regime took time. A 30-year-old participant detailed a long list of unexpected bleeds and attempts at prophylaxis in claiming that his current self-management schedule was working well: “I follow three days instead . . . [I] get bleeds like once a year maybe” (i.e., he infuses factor every third day).

Within the focus group interviews, participants tended to affirm one another’s experiences and expertise in knowing their individualized regimens and self-management strategies. Evident also were how men drew on strength-based masculine ideals including autonomy, problem solving, and self-reliance in navigating their treatment. A 44-year-old participant described his current approach drawing nods of approval from the other participants:

If it’s muscular, sometimes I—I’m working out and I have a muscle that gets kind of uppity when it’s worked, you know, it seems to be a problem for a while, then I’ll treat [prophylactically] a little more aggressively over a longer period of time. It’s case by case.

While some of the older men discussed how hemophilia treatment approaches had changed, at times relating that prophylaxis had not been available earlier on in their lives, there was strong recognition that ultimately managing factor usage was the men’s responsibility. This had been learned early on by most participants wherein, as boys, they had grown up administering infusions typically starting around 10 years of age. As a 23-year-old man explained: “. . . when I was younger my pediatric nurse was really adamant about getting me to self-infuse. She had got me to start infusing when I was 8.” Parents also tended to direct participant’s factor infusion encouraging them to be independent in managing their hemophilia, a strategy a 23-year-old man affirmed saying: “It got me into the mentality that I have to take control of it.”

Managing Risk

Key to managing the potential for bleeds was choosing the type and level of physical activity with which the men could reasonably participate. A 34-year-old man explained how those choices had to be evaluated in terms of risk:

You can do everything up to a certain point right? . . . Even the healthiest people can get injured, . . . but for us, the healing process and everything is more difficult. It’s up to the individual to take the risk.

Most participants aligned to masculine values of independence in deciding their involvement with physical activities. Some men, especially the younger men engaged with high-risk activities such as playing soccer, snowboarding, motorcycling, ultimate Frisbee, and cricket. While participants across all age groups were aware that joint injuries could limit the type and duration of the activity, the younger men had fewer concerns about the consequences of taking up risky activities. In this regard, the risk for being socially isolated and estranged from peers through nonparticipation seemed to outweigh the risk of physical harm for younger men. A 23-year-old man recalled thinking: “I want to have fun now and I’ll worry about it [a bleed] later because there’s this medicine I can take” and a 22-year-old participant explained that wanting to fit in meant denying any vulnerability or weakness while competing in sports: “you are just like ‘I’m in gym class, I’m going to play and I’m gonna play hard’. And then later that day you are like ‘oh, no, my ankle hurts.’”

In contrast most men in the 40 years and older group were more conservative as a 47-year-old participant pointed out: “I don’t [didn’t] have the kind of lifestyle” that involved sports, but rather he was limited to walking due to the advanced joint damage and muscle atrophy. A 44-year-old man signaled his focus on risk aversion in his quest to maintain his current range of movement and life quality: “I find, I spend a lot more time thinking about physical risk in what you are doing and . . . just how I thought about things and the amount of thought I gave, or the issues you’d have to go through.”

Indeed, the older men’s management of risk also tended to focus on ensuring they were never without factor. For example, work-related travel and vacations demanded men to be organized and oftentimes formally approved to carry factor (and infusion supplies including needles) into other jurisdictions to effectively manage the risk for bleeds.

Conceding and Contesting Restrictions

The restrictions imposed by hemophilia and its treatments influenced every aspect of the men’s lives including the type of work and recreation available to them as well as their social, family, and intimate relationships. Intricately connected were the men’s masculine identities, and participants recounted actions that conceded and contested the restrictions for embodying masculine ideals imposed by their hemophilia.

Wising Up to Physical Limitations

Participants noted their recognition about the limitations imposed by hemophilia as evolving over time and requiring rational and wise strategic actions. Central was the need to be organized to counter the fragility imposed by hemophilia on the men’s bodies. A 23-year-old explained he had become more conservative and diligent as he had grown older:

I find myself more conscious of my surroundings, I find myself checking, making sure I know where things are subconsciously and everything. It’s really odd, but I think that’s just one of the things that you acquire as you get older with it [hemophilia].

Amid drawing on masculine ideals to position these conservative approaches as wise, tensions existed for some men around what they were unable to embody. A 64-year-old man quipped: “you see all the strong, muscle guys and then you say, ‘oh, you couldn’t even have the weight to do the bike’.” Similarly, attempts to increase fitness levels through regular aerobic exercise were understood as requiring significant planning (i.e., prophylaxis), education (i.e., minimizing affect with strengthening exercises), and devoid of the opportunity to compete with others. As a 42-year-old man indicated, “your number one competitor is yourself” and try “not comparing yourself to others so much when it comes to sport and athletics.”

The restrictions around physical activities in turn influenced men’s social connectedness. As a 30-year-old man explained, “It’s difficult for me to run, so I can’t be in those communities where people are running.” Many men instead drew benefits from connecting with others who had hemophilia, drawing solace that they were not alone in tending to the challenges that accompanied hemophilia. Particularly among participants ranging in age from 19 to 39 years connections to others experiencing hemophilia were highly valued, and many men including a 23-year-old highlighted the benefits in sharing “small stories . . . that everyone has gone through . . . to just make fun . . . and know that others understand it.” Within the social context it was evident that many participants understood the value of connecting with others who experienced hemophilia as well as the challenges that could accompany trying to connect with others through physical activity and sports. Some men contested the potential to be ostracized because of their illness by distancing themselves from hemophilia support groups, as a 35-year-old man explained: “back then I would have thought that was better, but now I kind of like being away from it [hemophilia support group events].” In sum, the physical restrictions were eventually conceded by men but ultimately hemophilia both connected and disconnected participants from some potential social connections. At one level some learned to connect with others outside the domain of sports and robust male bodies, while others’ were constrained by the physical limitations invoked by the ever present risk of having a bleed.

Working, Partnered Men

A central marker of masculinity is paid work and career (Oliffe & Han, 2014) and participants shared an array of work-related experiences. Hemophilia was acknowledged as limiting what the men could do—as a 64-year-old man suggested: “we’ve got to be careful about the work we choose because being a hemophiliac, you cannot take every kind of work you want.” One of the younger men, a 22-year-old participant, concurred by asserting that hemophilia “steers you a little bit toward higher education” and more sedentary jobs. A few men had successfully sustained more physical work. For example, a 35-year-old participant worked in construction while following daily prophylaxis. However, travel or moving to another city for work could be challenging for having to ensure factor and health care provider availability, locale specific health insurance plans, air travel security, and having to re-establish a support system. In addition, for some of the older men paid work and/or career potential had been diminished by contracting HIV through being treated with contaminated blood products in the 1980s. As a 47-year-old HIV positive man explained:

Knowing that I had that [HIV], and in 1987 that was not good news, it kind of derailed [me] personally, it derailed me for a number of years. I ended up getting involved with, you know, AIDS advocacy, they were inspiring, exciting times, but they didn’t prepare me at all for this beautiful long life that I have ended up having, and led to a break from that continuum which when I finally sat down, kind of 15-20 years later. “OK, what am I gonna do with this life?” It was in some respects, a little bit too late.

Most participants disclosed hemophilia to their employers very strategically without using the term hemophilia to avoid differentiation and potential discrimination at the workplace, as a 30-year-old man explained:

I explain to the workplace, I tell them it’s like a cold. I get a bleed every once in a while and then that’s it. I don’t go into details, I just give them the gist of how often I might need time off work.

Although participants suggested that most people knew what hemophilia was, all the men had experienced stigma first hand. In this context, participants disclosed their disease only to those who needed to know, as a 44-year-old man explained:

I’ve always had a bit of an attitude, maybe for better or worse, of not wanting anybody to pay attention to my hemophilia. I don’t like feeling different. And as a result I don’t share a lot about it.

Banal misconceptions portraying men with hemophilia as fragile were shared, and a 23-year-old man explained his bemusement with people’s questions emerging from much cited urban myths such as, “if you get a paper cut will you die?” or “if you get punched will you die?” Embedded here was delicateness and the implicit need for protection—characteristics synonymous with female bodies—the antithesis to masculine ideals of strength and control.

Also, central to masculine identities is the ability to find a partner, develop a meaningful union, and start a family. This was especially evident among the older participants whereas the younger men were more focused on having an intimate relationship. Ideally, potential partners were aware of hemophilia before the relationship began, as a 23-year-old stated: “they will probably already know by the time we do go on a date.” Similarly, a 30-year-old man conceded that in an intimate relationship disclosure about having hemophilia was mandatory: “that’s probably the ultimate one where you cannot avoid the situation, right.” While most men thought that hemophilia could limit their partner prospects, participants, including a 35-year-old man pointed out that it was important to assess a person’s reaction to those details: “It is a good measuring stick to see what that person is like.” While paid work and having a partner were important to participants the challenges invoked by hemophilia were evident; however, for the most part the men were resilient and hopeful of fulfilling these roles.

Claiming Health

In wising up to the physical and social restrictions and in forging masculine identities based on work and or family, participants were resolute that hemophilia did not define them. Rather, their self-management ultimately determined their physical and mental health. In this respect, participants did not explicitly position themselves as marginalized or subordinate within masculine hierarchies based on having hemophilia. Instead the men tended to reconfigure masculine ideals in line with what they successfully embodied within those gendered practices—including their concerted efforts for maintaining and promoting their health. A 23-year-old man asserted: “If you manage it [hemophilia] properly you can do anything you want to, really.” Evident here are how masculine ideals of discipline, control, and rationality can underpin effective self-management, as evident in the advice from a 30-year-old man: “It’s all based on logic, right? I’d look at the situation, assess the situation then make a choice.” This participant went on to explain that he had developed his own software to track his treatment regime, strictly infusing every three days—a strategy that resulted in only three bleeds a year. Similarly, a 23-year-old man said: “Some days you don’t even think that you have any disease at all because you can be so self-sufficient.”

There was also recognition about the need to attend to promoting one’s mental health in the context of hemophilia, and the challenges that long-term management could invoke. A 47-year-old man explained:

I realized in the past 5 or so years my hemophilia obviously affects me as I physically move through the world, but it has also had a fairly profound effect on how I move through the world emotionally, and that I spent a great many years focusing on the gift that hemophilia was and the gift that HIV was. But that’s really only half the story, there’s another side, that living with the pain and the virus wore on me, so yeah, I think of the psychosocial aspects that are at work.

While the admission of such vulnerabilities might be argued as diminishing this man’s purchase on hegemonic masculinity, by chronicling his challenges evident also is his lifelong resilience and determination to continue his work to be as healthy as he can. In various configurations of practice, participants claimed their health through hard work and tactics dedicated to confronting the contexts accompanying hemophilia.

Discussion

The findings drawn from this study provide unique insights to the rare nature of hemophilia, its changing management and the dramatic influence it has on the entire course of an affected man’s life. Specific to the masculinities and men’s health research, afforded by the current study are empirical results to direct targeted male hemophilia care along with theory-based and methodological insights which hold promise and potential for advancing future work in the area.

From an empirical standpoint confirmed by the current study findings were the central yet diverse roles masculinities play in influencing participant’s health practices and illness identities across the lifecourse. In line with work by Lohan (2007) and Oliffe (2009) evident was how the participants related to, and ultimately managed and mismanaged their hemophilia across history and their lives. For example, testing boundaries and risk taking was especially evident among the youngest subgroup of participants, a finding consistent with the masculinities work submitted by Courtenay (2000b). Growing into their hemophilia, most young men experienced the illness as limiting freedoms around physical activity, a context that could provoke protest from a place of rebellion, though one might argue that equally likely was the young men’s naivety about the long-term implications of such risk-reliant actions.

From a theory-based viewpoint, protest masculinity best accounts for men contesting the marginalization invoked by hemophilia and aspiring to hegemony despite being unable to fully compete as a result of the disorder. That said, acute injuries also offer opportunities for men to demonstrate resilience, recovery, and much revered returns to the damage invoking activities (Delamont, 2012). In this regard, the telling of such idealized sports comebacks may have influenced some men to embrace opportunities to affirm their buy-in to all that risky or competitive activities offer in terms of masculine capital. Taken in sum, it is critical to address not just the physical aspects of the disorder (treating or preventing bleeds), but the psychosocial challenges (social isolation, low self-esteem) that hemophilia can place on young men—most of whom eventually concede in later life that they are not able to sustain sports.

In line with the study by Sloan et al. (2009), the current research also highlighted how masculine ideals of independence, control, and discipline can bolster and direct the work of men’s hemophilia self-management efforts. For example, treatment regimens were developed by some men to sustain physical activities and paid work. Akin to O’Brien’s et al.’s (2005) hierarchy of threats wherein wise men’s choices involved doing masculinity as a means to an end, participants in the current study pursued self-management independently as a mechanism for maintaining their overall independence. The implication of this finding for clinical practice is the importance of working with men to bolster their effectual self-management of hemophilia. A significant challenge here however is to muster opportunities to engage younger men with this work ahead of them experiencing long-term irreversible joint damage.

Consistent with men’s health literature suggesting that pain is the lynchpin for males soliciting professional medical help (Courtenay, 2000a; Galdas et al., 2007; White & Johnson, 2000), participants in the current study compartmentalized bleeding induced joint pain as the cardinal symptom for action. Triaged out, or perhaps ignored to some extent were earlier signs of bleeding including tingling and warmth in the affected joint, which if acted on in a timely manner would have reduced the potential for long-term joint damage and chronic pain. While acting on pain might relate to men aligning to masculine ideals around high pain tolerance and/or working through pain (i.e., no pain no gain); there are likely benefits for positioning recognition and treatment of early symptoms (or better still prophylaxis) as enabling men to more fully and sustainably exercise and work.

The aforementioned challenges are not unique to hemophilia, as others have noted similar behaviors with other chronic illnesses such as diabetes and cystic fibrosis (Di Battista, Hart, Greco, & Gloizer, 2009; Towns & Bell, 2011). Moreover, recent literature suggests grouping together patients with chronic illnesses in the 10 to 25 years of age for health care related needs, instead of the traditional 12 to 19 years of age generally referred to as adolescence in pediatric health care settings (English, Park, Shafer, Kreipe, & D’Angelo, 2009). This is due to neurological development extending into the mid-20s (Giedd, 2009). Furthermore, it is suggested that the preparation for the transition should begin a few years prior to transfer to the adult care program, ideally at 12 to 16 years of age (Towns & Bell, 2011). Disrupting these definitions Kimmel (2008) argues that most men based in the United State endure a prolonged period of adolescence wherein they are at school longer and do not marry and/or have a family until their late 20s. This shift has revealed 30 as the new 20, and in the context of dealing with young men who have hemophilia the expectations of age specific groups may also be changing.

In summarizing theory-based considerations, while Connell’s (1995, 2005) framework was helpful in developing and discussing the current study findings, additional insights may have been garnered by explicitly engaging with emergent thinking around the transformation of masculinities. For example, according to Nobis and Sandin (2008), “caring masculinity” can be idealized to allow for admissions of vulnerability, concern for health, and self-care, and elements of these transformations were evident within and across the current study participants. Moreover, the uptake of “caring masculinity” has grown overtime in some related contexts including the treatment of men experiencing HIV/AIDS. In this regard, future studies might benefit by focusing on such transformations (both structure and agency) to further advance understandings about men’s health and illness practices.

In terms of methods, it is important to note that the focus group interviews offered opportunities for participants to connect with one another and share details of their experiences and self-management strategies. All the participants had experienced bleeding episodes that resulted in varying degrees of joint damage, but the men were especially respectful of the diversity of experiences within their respective groups. The physical limitations that severe hemophilia imposed on men were significant, but the impacts on other aspects of their lives such as social engagement, travel, and work or career options were also palpable. This is consistent with previous literature which suggested that in addition to providing education on causes and consequences of bleeds, bleed prevention and treatment, counseling needs to be provided on the psychosocial aspects of the disorder, such as career selection, travel, and disclosure (Lane et al., 2013). Within the focus group interviews, opportunities to engage with peers who have hemophilia were valued as suggested by previous literature (Breakey, Blanchette, & Bolton-Maggs, 2010; Lane et al., 2013). However, men also expressed frustration with the limited means to connect with other men with hemophilia outside of organized events. The effectiveness of current opportunities for peer support should be reassessed and additional opportunities considered with the needs of men with hemophilia in different age subgroups in mind. These opportunities might reasonably include same age peer engagement and/or mentorship and coaching partnerships unmatched by age.

Griffith, Metzl, and Gunter (2011) pointed to the need to explicitly expand gender to take up other social determinants of health including culture, history, socioeconomic status, and race. While the current study has, at least in part, engaged analysis around age specific hemophilia-related experiences and expressions, connecting the findings with other related work holds much potential. For example, Rolstad (2015) examined men’s perceptions of community support identifying six themes relating to hemophilia self-management and social support. While resilience was the frame of this study, many findings including mitigating physical damage and managing social and vocational relationships resonated with our results. Engaging and integrating such non-masculinity specific work as above is likely key to advancing empirical understandings of hemophilia, and also the use of masculinities frameworks in men’s health research.

Limitations and Implications for Future Research

To our knowledge, this is the first published study describing hemophilia from the masculinities perspective, thus further research is required to build on the findings and evaluate the usefulness and applicability to other hemophilia populations. While the diverse backgrounds of study participants reflect urban Canadian West-Coast milieus, the experiences of men with hemophilia may differ by place (i.e., country, rural, remote). The relatively small sample size (eleven participants in three age stratified subgroups) of men with severe and moderately severe hemophilia also limits the reach of the findings. That said, these preliminary insights can inform the design and focus of future research in the area of masculinities and men’s health research. For example, studying hemophilia in adolescence and young adulthood from the developmental theory perspective may provide additional knowledge on how to help adolescents with hemophilia transition into adulthood while optimizing health status.

Conclusion

In conclusion, overall, the availability of safe factor products, self-infusion, and prophylaxis along with other care improvements over the last 20 years has translated into improved physical mobility and overall health for men with hemophilia. However, results suggest that there is still plenty of room for improvement. Findings suggest that masculinities are intricately connected to the contexts in which men experience hemophilia and operationalize the management of their hemophilia. The limitations imposed on men’s lives by hemophilia need to be assessed and education and treatment needs individualized in that context. Helping men to overcome their limitations will more likely engage them to optimize their health. In terms of clinical practice, nursing as a predominately female occupation should capitalize on their work with male hemophilia patients to affirm a range of healthy masculinities. For example, nurses have unique opportunities to influence men toward strength-based self-management strategies by working with, rather than to necessarily change men’s health practices. That said, as much as education on the benefits of regular exercise and reducing risks of participating in physical activities is important, some men may require more to effectively incorporate that knowledge into their lives. Older men may require the direct involvement of personal trainers in a safe environment initially to consider regular exercise in the first place. Younger men may be more knowledgeable about regular exercise, but are also more likely to push their physical limits to embody masculine ideals. Providing opportunities for sports activities that men with severe hemophilia can participate in safely, challenge themselves physically and demonstrate the competitive aspect of masculinity may further reduce risks for injuries. Developing a well-organized peer network that creates a community feel for men can create a supportive and safe environment where experiences and knowledge can be shared and enable men to cope easier with challenges. Although not all men at all times would require it, a supportive community can be particularly important for younger men. In addition, collaboration between the pediatric and adult programs is essential not only to ensure a smooth transition of care but from a developmental perspective from adolescence into adulthood.