Abstract
Hemophilia is a genetic bleeding disorder that almost exclusively affects men. There is a nationwide network of nonprofit organizations providing support to men with hemophilia, which are affiliated with localized agencies that serve affected individuals within specific regions of the country. This community-based study was implemented in response to a local Utah agency’s concern that men with hemophilia may be disengaged from and underserved by their local support network. The goal of the study was to gain a better understanding of the (a) unique challenges, (b) adaptations, and (c) physical, financial, psychological, and social needs of adult men with moderate to severe hemophilia from the local community. Over a period of 9 months, verbal qualitative interviews were conducted with 10 affected individuals, and written interviews were obtained from 3 additional participants. Using a grounded-theory approach, six themes were identified, based on men’s commentary from interviews, across a spectrum of physical, social, communal, personal, medical, and vocational dimensions. Resilience theory, which explores internal resources that assist in coping with adverse situations, was used as a framework for interpreting research results. Findings indicate that men value the array of educational, social, and medical services that are available to them but choose to manage their hemophilia independently from the community and access support according to their individual needs. Understanding this dynamic may be helpful in developing services that are more specifically tailored to the physical and psychosocial needs of adult men with hemophilia and, potentially, men with other chronic health disorders.
Introduction
Overview of Hemophilia
Hemophilia is a genetic bleeding disorder that, almost exclusively, affects men. It is caused by a mutation in the X-chromosome that causes a deficiency in the body’s ability to produce naturally occurring proteins in the blood, called “blood clotting factors” (World Federation of Hemophilia, 2004). Hemophilia is either inherited or spontaneously occurs in approximately one out of every 5,000 male births (National Hemophilia Foundation, 2013b). It is currently estimated that there are 20,000 men with hemophilia in the United States and approximately 400,000 around the world (Centers for Disease Control and Prevention, 2012).
Hemophilia is often associated with the family of Nicholas II, the Tsar of Russia, and his wife Alexandra, the granddaughter of Queen Victoria. Alexandra was a carrier of the disorder who gave birth to a son, Alexi, with hemophilia. It is a common misconception that hemophilia is a European “royal disease.” In actuality, the disorder uniformly occurs in all ethnic and racial groups throughout the world (Neuman-Allen & Kachalsky, 2010; World Federation of Hemophilia, 2004).
Hemophilia is transmitted via an altered X-chromosome from fathers, who are affected by the disorder, to daughters, who usually do not experience hemophilia-related symptoms but become carriers. Daughters who are carriers, in turn, pass the disorder on to their sons. Because they receive one X-chromosome from either their mother or their father, men have a 50% chance of receiving an altered X-chromosome from a carrier mother, rather than their father, which results in inheriting hemophilia (Raabe, 2008). Hemophilia also occurs in families with no prior history of the condition and is estimated to spontaneously occur in as many as one out of three cases (Centers for Disease Control and Prevention, 2012; World Federation of Hemophilia, 2004).
Symptoms of hemophilia include bleeding in joints or muscles, easy bruising, frequent and prolonged nosebleeds, bleeding gums, gastrointestinal bleeding, and excessive bleeding after trauma, surgery, and stress or injury to joints or muscles from overexertion (Curry, 2004). Bleeding and bruising typically occur as the result of a hard impact to the body or twist to a joint. Bleeding episodes, which are colloquially referred to as “bleeds,” can also happen spontaneously. Numerous bleeding episodes over the span of a person’s lifetime cause progressive damage to specific “target joints”—typically elbows, knees, and ankles—where bleeds tend to occur most often. Bleeding can also occur in muscles or organs (Curry, 2004). Bleeds that occur in the brain are particularly dangerous and can cause irreversible neurological damage or death—especially if there is a delay in treatment (Raabe, 2008).
Treatment
Cases of excessive bleeding have occurred throughout history, but major advances in medical treatment for men with hemophilia were not achieved until the 1960s (National Hemophilia Foundation, 2013b). As a result of these advances, the life expectancy of men with hemophilia has improved dramatically over the past 50 years. In the past, men with moderate to severe hemophilia often did not survive past childhood or early adulthood. Males who are born with hemophilia today are expected to experience a normal life span.
Hemophilia is treated by infusing (injecting) synthetic or human derived blood clotting factor proteins, called factor compounds, directly into the bloodstream either prophylactically (infusing on a regular basis—usually several times per week)—in order to help prevent or inhibit bleeds from occurring—or on-demand (infusing only when a bleeding episode takes place) after an injury or spontaneous bleed occurs (Raabe, 2008). There are numerous factor compounds that are produced by various pharmaceutical manufacturers and are commercially available in the market; however, treatment is extremely expensive. The cost of factor medication for a man with moderate to severe hemophilia averages $114,000 per year for on-demand treatment and $300,000 per year for prophylactic treatment (Manco-Johnson et al., 2007). Because of the cost of medication, it is imperative for men with hemophilia to obtain medical insurance. This action is usually accomplished through private medical coverage, government aid, factor charity, insurance assistance programs, or any combination thereof.
Resilience Theory, Psychosocial Challenges, and Accessing Medical Support
Resilience theory provided a framework for interpreting men’s responses to the challenges and difficulties of life with hemophilia. Resilience is perceived to be an internal resource, something that is inside rather than outside the self, which people draw from in order to cope with, and learn from, stressful and adverse experiences. Richardson (2002) describes this dynamic as an “energy or force that drives a person from survival to self-actualization” (p. 315). Resilience is also perceived to be influenced by external factors that exist in a person’s physical, spiritual, and/or social environment. Grafton, Gillespie, and Henderson (2010) identified this as “an accessible inner strength or resource within the individual that enables a positive stress response that can be enhanced or supported by external resources” (p. 700)—meaning, men draw from their own internal strength in coping with their condition but may also benefit from external community support.
In general, men with hemophilia are psychologically resilient but may have lower self-esteem than the average population and might be more vulnerable to chronic depression and/or anxiety (Canclini et al., 2003). They deal with tremendous uncertainty (e.g., never knowing when a spontaneous bleed might occur or how much damage may be caused by an injury) and anxiety (e.g., from chronic pain, challenging social relationships, and/or financial concerns) regarding their disorder (Bailey et al., 2009; Barlow, Stapley, & Ellard, 2007; Beeton, Neal, & Lee, 2005). They also experience higher levels of stress and a lower quality of life than nonaffected individuals (Beeton et al., 2005).
Older men often carry a heavy intrapsychic burden that is influenced by the degree of social stigma and ignorance they encountered during their formative years as children and teens (Chapman & Williams, 2011). Additionally, men with hemophilia do not usually feel fully integrated into normal or everyday life—especially relative to work and romantic relationships (Hemophilia Experiences, Results, and Opportunities, 2012). Men’s employment concerns often include limited access to jobs that are compatible with their condition, fear of discrimination, and missing work because of bleeds. Relationship concerns usually encompass when and how to discuss hemophilia in a romantic relationship, the emotional and financial implications of managing hemophilia across the span of a long-term relationship, and family planning. The sense of feeling out of synch with mainstream society often translates to organized sports as well. Men with hemophilia need to avoid causing physical damage to their bodies. Unfortunately, they are often unable to participate in athletic activities, especially contact sports, which can limit the opportunity to socialize with their peers.
Because hemophilia is a rare condition, it is often not well understood by medical providers (Raabe, 2008). Providers can be slow to seek assistance from medical specialists or reluctant to defer to the personal experience of affected individuals—which in an emergency situation can be life threatening for a patient with hemophilia. Medical providers may be dismissive of patient self-reporting, because of provider unfamiliarity with hemophilia and lack of prior experience with men who are affected by this disorder. It can be problematic when medical providers do not recognize the fact that men with hemophilia tend to be highly knowledgeable about their disease state and prescribed treatment regimen.
Community-Based Research and Support
Individuals and families with hemophilia have access to numerous medical, social, and private service providers, including more than 130 hemophilia treatment centers (HTCs) in 12 regions across the Unites States (Baker, Crudder, Riske, Bias, & Forsberg, 2005), nonprofit partner organizations (usually called chapters), pharmaceutical or home health care companies, and personal social networks. Together, these providers are locally and nationally referred to as the “Bleeding Disorders Community,” which has been in existence since the middle of the 20th century and will be referenced to throughout this study (National Hemophilia Foundation, 2013a; Utah Hemophilia Foundation, 2012).
Community-based research (CBR) begins with engagement, builds on the strengths of the community, and is recognized by Israel, Schulz, Parker, and Becker (1998) “as one of many viable approaches to the development of knowledge and action in the field of public health” (p. 175). CBR methods are often closely related to community-engaged research, which in the words of Mulligan and Nadarajah (2008) strives “to restore the distinctive roles of insiders and outsiders in a way that leads to a more fruitful and open dialogue between the two parties in the partnership” (p. 83). Broadly speaking, both CBR and community-engaged research methodologies provide researchers with an opportunity to engage with a specific group of people in order to investigate a topic that is relevant to their interests and areas of need.
In congruence with the aforementioned research methods, a basic preliminary needs assessment was conducted with eight stakeholders from the Utah hemophilia community (e.g., one affected individual, two parents, one industry member, two social service agency providers, and two volunteers). Participants completed a written survey and participated in a focus group where they discussed and refined the results of the survey in more detail. Stakeholders observed that young to middle age adult men with moderate to severe hemophilia do not actively engage in many of the activities that are provided by the community (Utah Hemophilia Foundation, 2012). In contrast to affected adult males, children, teenagers, and parents of young children who are also affected by hemophilia appear to be considerably less independent from and more reliant on the services that are offered within the community (e.g., diagnosis, education, and treatment) and tend to be more actively engaged in those services (Baker et al., 2005; Kelly, 2002).
Much is understood about the challenges, in general, that confront young and middle age men with hemophilia, such as obtaining health coverage, navigating social or romantic relationships, and obtaining employment (Hemophilia Experiences, Results, and Opportunities, 2012). Minimal qualitative research has been conducted, however, that explores the personal life experiences of men with hemophilia in the stages of early and middle adulthood—especially in relation to their individual attitudes, coping styles, personal support systems, and unique life experiences (Cassis, Querol, Forsyth, & Iorio, 2012). Neuman-Allen and Kachalsky (2010) point out, as well, that aging and hemophilia is a relatively new area of research: “At present, scant literature and research is available regarding hemophilia in an elderly or aging population” (p. 330).
As stated earlier, the dynamics of men’s disengagement from the community are not necessarily well understood by medical and social service providers, family members, and home care or pharmaceutical industry members. For these reasons, the focus of this study was to gain a better understanding of the aforementioned areas by conducting qualitative interviews that focus on the personal experiences of adult men from the local Bleeding Disorders Community.
Method
Given the small size of the population of men with moderate to severe hemophilia in Utah—which using Centers for Disease Control and Prevention (2013) data is estimated to be roughly 68 total individuals—participants were identified using purposive (nonrandom and selective) sampling techniques. Prior to selecting participants and initiating interviews, the Utah Hemophilia Foundation and The University of Utah Institution Review Board provided approval to implement the research project.
A key representative from the Utah Hemophilia Foundation distributed a series of announcements to prospective interviewees via email (which is the Foundation’s primary means of communication with community members). The announcement requested that adult men with moderate to severe hemophilia consider participating in the study and, if interested, to directly contact me (the researcher). Follow-up took place with men who contacted the researcher directly and either face-to-face interviews were scheduled or, for the individual who did not want to meet in person, a link to an online survey was sent for completion. Interviewees also provided assistance with recruitment by reaching out to other prospective adult male participants via email or direct personal contact.
Data were collected via face-to-face interviews with 10 men and written information was obtained, via online surveys, from three additional men. In-depth verbal interviews ranged from 60 to 90 minutes in length and provided detailed information in response to research questions, whereas written interviews took approximately 20 minutes to complete and provided general information in response to questions.
A semistructured, open-ended interview guide was utilized for all interviews. As congruent with community-based research methods, the interview guide reflected questions and concerns identified by stakeholders from the community, via the initial needs assessment, and young men with severe hemophilia who participated in the follow-up pilot study. The same open-ended questions were asked in both the interviews and online surveys. During verbal interviews, clarifying questions were asked to expand on participant responses, which provided a more contextual and granular understanding of the information they provided in response to the semistructured interview questions.
Basic demographic information was obtained from each of the participants including name, contact information, and diagnosis. Participants were asked the following six questions: (1) What are your main challenges as an adult male with hemophilia? (2) How do you cope with these challenges? (3) How is the Bleeding Disorders Community helpful to you as an adult male with hemophilia? (4) How could the Bleeding Disorders Community be more helpful to you? (5) Do you have other areas of need that are not currently being addressed? (6) Is there anything else that you would like to add? Each participant also received an optional gift certificate to thank him for contributing to the study.
Each of the interviews was digitally recorded on a password-protected laptop computer. Surveys were conducted using secure online survey software. Interviews were transcribed and surveys were transferred to HyperRESEARCH, a qualitative data analysis software package, for analysis using a grounded theory approach. As described in the introduction, resilience theory provided a framework, or lens, for interpreting the results of adult men’s approaches to managing their disorder. The following three strategies were utilized to strengthen the rigor of the study: (1) member-checking research results with the men who participated in the study in order to clarify and confirm findings, which was conducted through a combination of privately scheduled meetings, face-to-face conversations at community events, and emails or follow-up phone calls to individual participants; (2) conducting an audit trail that clearly documented each step of the research process; and (3) prolonged engagement with the Utah Bleeding Disorders Community, which involved volunteering for the community for a couple of years prior to implementing the research project and establishing both credibility and a strong working relationship with leaders within the community that, over time, helped develop a deeper understanding of the research topic within the context of the larger Bleeding Disorders Community as well as the impact on the individual lives of people who are affected by hemophilia.
Interviews took place with individuals and field observations focused on groups. Member checking was primarily conducted on an individual basis.
Results
Six themes emerged from the researcher’s analysis of data across the physical, social, and vocational landscape of men’s lives in relation to the choices men make and the options that are available to them in their local community.
Mitigating Physical Damage
The men in this study strive to mitigate the amount of physical damage that has occurred to their bodies over time. As described in Table 1 by one of the study participants, men typically do this by making an effort to take care of their bodies through reasonable physical exercise and finding the right balance between living an active lifestyle and overexerting themselves.
Major Themes and Representative Quotations.
Younger men with hemophilia in their 20s and 30s tend to push physical boundaries and often test the upper limits of what their body can sustain (e.g., contact sports), which often result in permanent damage to joints from accidents and/or repetitive stress injuries. As they grow older, men begin to recognize issues related to aging and the need to prepare for their senior years (e.g., financial planning and making long-term care arrangements).
Pain management is another aspect of mitigating the physical damage that occurs over time (e.g., joint damage and osteoarthritis). Men often struggle to adjust to the requisite use of narcotic pain medication, while striving to avoid substance abuse or addiction—as observed by the another participant, “Pain relief is a huge challenge, you know, because [you go on narcotics] and then you get addicted to them, which creates another set of challenges.” It should be noted that many older men with hemophilia deal with chronic pain in relation to the progressive deterioration of their joints, which makes them vulnerable to addiction to pain medication and related substance abuse issues.
Managing Social, Vocational, Romantic, and Familial Relationships
As described in Table 1, close personal relationships can be a challenge for adult men with hemophilia who usually carefully evaluate when and where to disclose their condition to friends, colleagues, and romantic partners in order to avoid potentially negative responses (e.g., being rejected, misunderstood, or mistreated). Like men without hemophilia, they are selective in focusing their social energy on maintaining friendships, spending time with romantic partners or spouses, and, for men with children, parenting and raising a family. In the words of one individual,
I would never take the time away from my wife because my wife is the biggest part of me. I have one daughter, and again I don’t want to be away from her. I spend the day at work stressed out I go home and I am able to just let go as I see my daughter with that big smile on her face.
Like other men, adult males with hemophilia who are employed invest a great deal of time in the workplace. Unlike other men, they may (or may not) disclose their condition to their colleagues based on the degree of acceptance (or disapproval) within their specific work setting. In contrast with other members of the Bleeding Disorders Community—who tend to be more engaged in social, educational, and treatment related activities (e.g., families who have young children with hemophilia and affected older children or teenagers)—adult men with hemophilia often find it difficult to participate in community events on a regular basis, due to their work and relationship commitments.
Engaging With and Giving Back to the Bleeding Disorders Community
The men in this study benefited a great deal from the community support they received in their youth as illustrated by their comments in Table 1. Men especially talked about their experiences in their youth with annual hemophilia camps that are conducted by chapters across the country and are designed to create opportunities for boys with hemophilia to have fun and socialize with each other, learn how to independently infuse (inject) factor medication, get outside their regular “bubble,” and become more independent as a result of the coaching and mentoring they receive from community members.
Many of the men who participated in this study, however, did not feel that they personally needed much in the way of support from the Bleeding Disorders Community. In fact, several men observed that the same set of topics are addressed over and over again at community events (e.g., presentations by medical professionals regarding how to manage and treat hemophilia), which creates a disincentive for men to participate in activities, since they have already mastered the skills that are being discussed.
All the men who participated in this study felt that it is important to “give back” to the community that has done so much for them. Some of the interviewees also talked about the concept of helping to “pay it forward” by supporting others, especially teens and young adults, who can benefit from what the community has to offer.
Despite not feeling that they need much support, adult men encourage the bleeding disorders community to “stay the course” relative to the wide array of helpful services it provides. One individual described the local nonprofit chapter as the “glue that holds” the community together. Another individual described the Bleeding Disorders Community as a “living and breathing entity of its own.” Most of the men in the study recognized that it is a community that is continually changing, as different people, priorities, and programs “come and go.” In other words, it is a community that continually evolves and adapts to the needs of its members over time.
Although they complement the local hemophilia chapter and state that it is doing a “good job” of providing support to individuals and families with hemophilia, adult men emphasized how important it is for the chapter to keep activities viable and relevant to the community. With respect to providing services to adults with hemophilia in particular, they believe there is a need for the Bleeding Disorders Community to better educate and prepare young men and their families of origin for the transition into early adulthood. Interviewees also felt it was important for the local chapter to continue providing social networking opportunities for men of all ages to participate in.
Accessing Medical Support
The single greatest challenge for men with hemophilia is obtaining either private or public insurance that will cover the cost of their medical treatment. Accessing medical services that address their unique needs constitutes another major obstacle. Both the aforementioned barriers are illustrated by men’s statements in Table 1.
The men in this study had mixed reactions about the services that are provided by their local Hemophilia Treatment Center (HTC). On the one hand, they would like to be able to spend more face time with their HTC doctor, exchange more information, and have a mutual (rather than one-sided) conversation. On the other hand, men do not want their annual visits to consume a great deal of time. They prefer the option of seeing one or two medical professionals rather than participating in a lengthy comprehensive visit with a whole series of services providers (e.g., doctor, nurse practitioner, physical therapist, and social worker).
It is often difficult for men with hemophilia to find doctors and medical providers outside the bleeding disorders community (e.g., general practitioners, surgeons, emergency medical personnel, and related medical providers) who are either knowledgeable about hemophilia or willing to listen to affected individuals about their treatment needs. The participants in this study acknowledge that it is helpful for outside providers to access the specialized medical knowledge that is available at their local HTC by calling the HTC and obtaining information about specific treatment details. For example, an orthopedic surgeon may want to consult with the HTC hematologist prior to performing a surgery. Some of the men in this study also acknowledged how much they appreciate having a “friendly face” at the HTC that “gets to know you” and can provide personalized help, which is something that usually does not occur in other medical settings.
Men with hemophilia also receive a great deal of assistance from their private home health care providers, usually described as home care agencies, which provide prescribed medication and supplies. An adult male explained, “[Homecare providers] are able to provide really specialized treatment to individuals . . . [they] are able to [offer] much more personalized, help, support, [and] management.” In some cases, home care businesses also provide individual case management support, life skills training, and/or assistance in communication with their HTC or pharmaceutical manufactures (who sometimes provide emergency factor assistance programs for men who are temporarily without insurance).
Making Personal Choices
Men’s experiences growing up with hemophilia, coming of age, and growing older played an important role in the formation of their identities and their ability to manage their disorder independently. In fact, finding one’s own unique approach to the management of his disorder and maintaining personal independence in the decision-making process was a strong theme for each of the men who participated in the study, as explained in Table 1.
Some men can fall into a state of complacency with respect to their treatment—for example, men can get stuck in a rut and finding it difficult to muster the energy and motivation to seek out the latest developments in blood factor therapy treatment and/or stay on top of a seemingly endless cycle of insurance applications, benefit claims, and associated paperwork. In some cases, men may find it necessary to rely on government aid and/or special insurance-assistance programs in order to survive. They reported that it is easy, at times, to feel overwhelmed or apathetic about their condition. There is also the risk of adopting an attitude of victimhood and being trapped in a cycle of poverty and powerless over their hemophilia.
The men in this study emphasized the importance of developing a positive mindset in the overall management of their hemophilia. One man observed, “It [is] the mentality of being able to live life and not let something like hemophilia, or kidney disease, or whatever it is limit you.” Men also talked about accessing and staying on top of current health and education resources. Men emphasized that they enjoy utilizing support from the community on a level that matches their personal interests and ability (time and energy wise) to do so and acknowledged that they appreciate the local hemophilia foundation keeping them informed of available resources and always being just “a phone call away” but stated that they like to participate in activities on their own terms and access services “as much or as little as [they] want.” They also underscored the value of the community in helping them manage their condition at key points in their lives, such as their childhoods and youth and during times of crisis or special need.
Some of the men acknowledged that there is a limit to the types of support that the local community can provide to individuals who are not willing, or able, to take care of themselves. For example, if a person decides not to comply with treatment or finds himself trapped in a cycle of drug addiction and dependence, the community may not have the financial resources, professional expertise, and social or legal leverage to be of assistance.
Making Strategic Work-Related Decisions
Men with hemophilia who are able to work are often concerned about being seen as a liability in the workplace, missing work because of medical issues, and/or being treated differently because of their disorder. In certain work environments, they are careful about disclosing their condition to colleagues. Because of their physical limitations, they also have significantly fewer job options than men without hemophilia and sometimes have fewer opportunities for advancement or switching to different employers. As illustrated in Table 1, in some cases, men must let go of their preferred careers and/or dreams (e.g., serving as police officer or professional musician) to find employment that will provide good health insurance benefits and avoid damaging their bodies. Obtaining good insurance often involves going to school—as stated by one interviewee, “develop the mind rather than the bicep[s]” and acquire professional training and certification that will assist in seeking employment. Some of the men in this study intentionally sought employment in mid- to large-sized organizations that can provide group health care plans—as described by one participant, “I needed a very large company so we could [be in an employment] pool and be able to have the nice benefits.” Others choose to work in the health care industry, especially with hemophilia home care providers, which has the added benefit of health insurance and an understanding work environment. And some men are simply unable to work, because of cumulative damage to their bodies, and must seek government assistance through disability benefits.
Discussion
The men who participated in this study provided candid personal observations about the past, present, and future management of their condition. They were forthcoming with their comments and open to sharing information about their unique life situations.
They confirmed several of the prior research findings outlined in the introduction—specifically, coping with high levels of stress and uncertainty, managing interpersonal relationships, and being confronted with limited employment opportunities (Bailey et al., 2009; Barlow et al., 2007; Beeton et al., 2005; Canclini et al., 2003; Chapman & Williams, 2011; Hemophilia Experiences, Results, and Opportunities, 2012). The men who participated in this study provided a more nuanced understanding of their thought processes and behaviors. For example, despite the challenges in their lives, men with hemophilia are highly resourceful in obtaining medical insurance and requisite factor replacement therapy medication. While it is true that they must obtain treatment to stay healthy (ignoring their condition is not a viable option), the necessity of obtaining treatment does not fully explain why they are proactive and competent in doing so. In other words, the men who participated in this study are resilient, pragmatic, and enterprising in accessing insurance and treatment. They appear to be undeterred by the difficulties of obtaining insurance for a chronic condition that is extraordinarily expensive to treat. This level of resilience seems to run counter to conventional wisdom, which assumes that great adversity often contributes to a sense of powerlessness or defeat.
Similarly, men with hemophilia are compelled to seek balance in their lives. They make calculated personal choices about the management of their condition—especially in relation to their level of compliance with “standard” treatment. For example, the degree to which each individual male chooses to engage in physical activity, treat bleeds “as needed,” and/or maintain prophylactic levels of clotting factor in their bloodstream.
Men with hemophilia maintain strong personal independence and are highly selective about their participation in bleeding disorder community activities. Like most people, they are very busy with personal, social, and work-related commitments. They point out that they have been managing their disease for a long time and, for the most part, have things under control. In many cases, they have more knowledge about their condition than the average medical provider (i.e., general practitioners, emergency room personnel, and support staff). They may choose not to participate in community activities that are offered because they have already received the information that has been presented on previous occasions. This degree of self-knowledge makes sense, in light of their involvement with the bleeding disorders community over, literally, the course of their lifetime, which constitutes many decades of interacting with medical and social service providers. The men who participated in this study also expressed a desire for the community to address topics that are more relevant to them personally (e.g., pain management, financial planning, and aging issues). They clearly expressed a desire to give back to the community, particularly in the role of mentors to younger generations of men with hemophilia. This desire to stay engaged with the community by giving back may help improve young men’s transition from teenage years to early adulthood, which several men identified as a specific area of need. The participants in this study also underscored the importance and value of the bleeding disorders community for past, present, and future generations.
The findings from this study are consistent with current interpretations of resilience theory and provide a suitable framework for interpreting both men’s management of their condition and utilization of community-based support. Men’s adaptations fit with Grafton et al.’s (2010) description of resilience as, first and foremost, an accessible inner resource that individuals draw from in response to stressful life situations, and secondarily, a response that can be enhanced by external support. This dynamic was observed in three areas:
Internal or self-driven support as demonstrated by men’s independence from the community as they strive to manage their condition. Examples include most men’s choice to live their life as independently as possible from the community; focus on relationships with friends, family members, and colleagues in non-hemophilia-related aspects of their life; and, to the extent possible, ability to take care of their body on their own and embrace or adopt a positive personal mindset.
External community-based support that clearly provided assistance to men, over the course of their lifetime, in developing adaptive skills and behaviors. The importance of the community is illustrated by men’s deep appreciation for the education, support, and social networking opportunities that the community provided to them in their childhood and youth; desire to give back to the community by sharing their life-experience and personal knowledge with younger generations; and comfort with knowing that the community is always there for them to turn to in times of need—such as obtaining emergency insurance assistance or guidance from service providers, being around other men with hemophilia who have shared experiences and practical hands-on knowledge about hemophilia-related issues, and seeking out extra support as individuals find themselves ground down by the relentless challenge of managing a lifelong chronic disorder.
Individualized support that illustrated each man’s unique approach to managing their disorder. For example, level of compliance with annual check-ups and recommended treatment regimens, managing pain, level of engagement (or detachment) from the bleeding disorders community, and attitude toward HTC, nonprofit chapter, and related services.
Limitations
Because this study uses purposive sampling, it cannot claim to represent the experiences of all men with hemophilia. By limiting the selection criteria to 13 men with moderate to severe hemophilia from the Utah Bleeding Disorders Community, the ability to generalize the findings to other men with hemophilia are limited. With respect to the reliability of the data, the interpretation of information should only be applied to the actual individuals who participated in this study. The 13 men who participated in the study represented roughly 1 out of 5 adult men with hemophilia in Utah according to rough estimates extrapolated from Centers for Disease Control and Prevention (2013) data. The sample could be strengthened by increasing the number of interviews that are conducted with men in Utah and/or expanding the scope of the project to a national level. Given the local focus of this research project, the limitations of the study should not prevent the research findings from being informative and/or useful to the Utah Bleeding Disorders Community.
Conclusion
Men with hemophilia value the array of local services that are available to them in their geographic areas but choose to manage their condition independently from the larger bleeding disorders community. Each man who participated in this study adopted a unique and personally customized approach to the management of his disorder. Men with hemophilia also make conscious decisions about obtaining support from the community, according to their individual needs.
The comments that were made by the men in this study imply that there is a need to develop services that are more specifically tailored to their unique needs as adult men with a chronic medical condition. It should be noted that providing a customized approach to the needs of men with specific disorders contrasts with the more cost-effective and universal, or “one size fits all,” medical or psychosocial interventions that dominate community-based service delivery systems across the country.
The participants in this study also highlighted the value of having a local community of support that they can turn to in times of need and, within the context of a lifelong chronic disorder, having community-based resources that are available to them to access, as needed, over the course of their lifetime for current educational information, social networking and mentorship opportunities, medical support, and related services. Table 2 provides a more detailed summary of recommendations for community service providers and associated quotations.
Recommendations for the Bleeding Disorders Community and Representative Quotations.
Contributions of This Research
The results of and conclusions reached by this research study may be of potential interest to professionals who provide services to men with hemophilia as well as other professionals who work in the area of men’s health and the management of other genetic disorders such as sickle cell anemia, cystic fibrosis, and muscular dystrophy.
Implications for Future Research
Future research might find it useful to focus on the perceptions of men’s significant others (i.e., wives, romantic partners, or other socially and emotionally important people in men’s lives) regarding the challenges, adaptations, and areas associated with hemophilia. The lives of significant others are affected by hemophilia, as well, and further research in this area might help expand and refine the concepts identified in this study while also potentially identifying dynamics that are unique to the people in affected men’s lives.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.