During the interviews the participants reflected on their experiences with MRSA and how it impacted their lives. Their willingness to share their stories offers us the opportunity to learn about their walk with MRSA, their fears and triumphs, and their insights about the world of emerging antibiotic resistant infections. Their stories present a combination of pain, aha moments, and an inner search for strategies to help them learn about and adapt to this growing public health problem. All were happy to share what they had learned in their personal journey.
With respect to age, the group divided into young adults under the age of 25 (four of the participants), and older adults over the age of 50 (the remaining six participants). Although there were commonalities between the two groups, the younger group exhibited a degree of apathy and passive learning that was different from the older group. The older group also demonstrated more signs of reflective hindsight and an appreciation for life due to their encounter with MRSA.
Most of the individuals in this study acquired their knowledge and learning about MRSA after their diagnosis. In general, all of the participants were aware of MRSA and/or staph but they lacked detailed information about the organism and its dangers. They acquired information and knowledge through a variety of sources, although printed media and the internet served as the two primary vehicles for accessing information. Learning was primarily self-directed, experiential, and in some cases, transformational.
Learning - "I guess everything changes when it happens to you"
Every participant found learning was a critical step in their production of knowledge about MRSA, and that knowledge affected their adaptation to the infection. Within the broad theme of learning, three subthemes emerged. These included: a) Experiences with MRSA; b) What was learned; and, c) How learning occurred. Following is a brief discussion of each of these subthemes.
Experiences with MRSA
The participants experienced several common threads in their MRSA journeys. All talked about the physical pain, ranging from bad to severe, both prior to and after the diagnosis. The worst pain I have ever felt in my entire life [Becky] . . . on a scale of 1 - 10, probably a 9 [Erin] . . . it put me in a really bad mood because it was so much pain, constantly [Erin].
Another common thread was the emotional factors associated with MRSA. The participants discussed a range of emotions including trust, anger, anxiety, worry, fear, depression, frustration, and embarrassment associated with feelings of being stigmatized. I was scared to death [Edward] . . . I was so mad and upset [Aaron] . . . I just paid $500 for this visit and you didn't tell me anything I don't already know [Trene] . . . other people were just really scared to come around me [Dora] . . . even [my] family wouldn't give [me] hugs [Dora] . . . the stigma of staph is just like, oh, you just roll around in dirt all day long and you don't clean yourself, and you have all these nasty, open sores [Trene] . . . it's [MRSA] always in the back of my mind [Mary].
Interactions with healthcare personnel, whether positive or negative, were an important experience for every participant. The interaction was on multiple levels with a variety of healthcare providers - primary care physicians, ER [emergency room] doctors, specialists (infectious disease, orthopaedic, etc.), nurses (both in the hospital and at home), physical therapists, office staff, and internists. I thought that I was getting the best treatment and I knew they were doing the best they could [Irene] . . . you get some confidence when everybody says treat it the same way [consistent message] [Irene] . . . we never saw the doctor - the nurse [told us] the diagnosis and then walked away [Edward] . . . they didn't even think about staph, even after I [told] them I went to the gym, and had gotten tattoos - it made me question their knowledge [Aaron].
What was learned?
The content of learning included three main areas: 1) general MRSA information; 2) MRSA care and prevention; and, 3) antibiotic resistance.
In general, all of the participants were aware of MRSA but lacked detailed knowledge about the microbe. For instance, all of the participants knew what a 'staph' infection was but they learned MRSA was a specific type of staph infection that was resistant to treatment. MRSA colonization and reservoirs were also major content areas of learning for everyone. It can live, you know, other places than in your body, on the walls, in carpets, and they said I could carry it in my body [Dora] . . . people are kind of familiar with infections, but it's [MRSA] in a different league by itself [Alvin] . . . [they asked] all these questions about my lifestyle, what kind of shorts or pants I work out in, do I wait to shower after I've been sweating, do I shower too much [Becky] . . . I though it [MRSA] was just some big, bad germ that lurked in the dark hollows of the hospital, but it's just a germ out there [in the community] [Edward].
The second major component of learning was about the care and prevention of MRSA. Once the MRSA diagnosis had been made, a consistent message about wound care, medication, and how to prevent the spread of MRSA was delivered by the respective healthcare professionals involved in each case. The participants seemed to be startled and surprised by the ubiquity of MRSA, especially with respect to its presence in the environment outside of healthcare. It's [MRSA] always present [Alvin] . . . you sit away from people, you try not to touch stuff, you wash your hands so much they're wrinkled [Alvin] . . . we cut down on our traveling [Alvin] . . . my awareness is totally heightened [Alvin] . . . we bought a sack of white washcloths - those were mine - when I [finished using one] we'd put it in bleach water - nobody else used that washcloth [Edward] . . . we would wash it, clean it, change the dressing, and put everything in a bag, tie it in a knot, and put it in another bag [before] we threw it away [Edward] . . . I learned to not be around people as much in a close, close quarter and to wash your hands a lot more and to definitely take a bath every day [Erin].
The ability of microbes to undergo mutations which leads to resistant strains of the organism has been well-documented in the world of microbiology. But, in the general community, this topic is commonly misunderstood. Most of the participants learned about the specific types of antibiotics used for MRSA infections and, in general, why resistance had occurred for this organism. Each of the participants also discussed learning about the importance of having a culture done, and a subsequent antibiotic susceptibility test to treat the infection appropriately with the correct antibiotic. I realized having a firm culture diagnosis is essential [Mary] . . . I believe it stems a lot from a misuse of antibiotics - overuse of antibiotics - plus a certain germ can mutate into something else [Nell] . . . where it [antibiotic] doesn't do its job because you've had so much of it sometimes - so, your germ acclimates to what you've been putting in your body - the germ is going to survive somehow [Edward].
How did learning occur?
Learning by the participants in this study was achieved primarily through two channels - people and media. People, both social networks and healthcare professionals, were important sources of information about MRSA. Among this group, a variety of family members played crucial roles in helping all of the participants learn about MRSA. [My] mom did a whole bunch of research on it [MRSA] - I honestly don't know what I would have done if my mom wasn't there [Aaron] . . . [if we had known what we know now] I know my wife would have been very cognizant of my wound and probably would have insisted on a culture [Edward] . . . she [wife] gathered information [Edward] . . . my wife played a significant and crucial role in [my] learning [Edward]. Friends and peers were another important layer in the participants' learning from their social network. My friends told me it was staph because they looked at it and said it was probably staph [Erin] . . . if someone mentions MRSA, or I know a friend or relative who has it, I'll ask some questions just to see what their course of treatment is [Nell].
Healthcare professionals also played a very important role in the learning process. Often, these professionals laid the groundwork for how the participants pursued their overall learning about the disease and, they seemed to influence the participant's attitude and belief in what they learned about the infection. They [doctors] were good - we'd ask a question and they'd tell us what they knew - the more information we got together, the calmer we became [Alvin] . . . they [home health nurses] made it very, very emphatic to me that I had to move [Irene] . . . the state nurse came out and educated me [Dora] . . . the doctor did an outstanding job - he discussed the importance of why he was culturing the bacteria and then the critical need to perform an antibiotic susceptibility test [Becky] . . . he [doctor] made me very comfortable - I asked him a million questions [Becky]. Interestingly, each of the participants cited both positive and negative interactions with the different healthcare professionals. So, while learning did occur via the various healthcare professionals, in some instances an opportunity was missed because of the environment that was created from a negative encounter.
Printed media, primarily in the form of hand-outs or brochures, provided an important source of information about MRSA Even signage in hospitals and other medical facilities played a role in learning about the precautions to take, and hygiene with respect to an infection. In addition to printed material, six of the participants took advantage of electronic sources to learn more about their condition and the microbe. Some of the websites they used included the Centers for Disease Control, the Mayo Clinic, WebMD, Dr. Oz, and even blogs by others who had experienced a MRSA infection. Some of the participants pointed out they used television and radio to alert them to interesting and informative information about MRSA that they would then look-up on the internet for additional detail.
Adaptation - "People make the difference"
This investigation asked each of the individuals to reflect on their journey living with MRSA. Their frank answers to the interview questions provided the following insights into how they adapted to their situations.
As with any illness or disease, a diagnosis of MRSA is often associated with an adaptation to the disease or condition over time. As learning occurs, the individual often exhibits strategies and mechanisms to live with the challenges that come with having a health concern. Most of the participants felt that being proactive with how they handled the impact of MRSA was an important factor in adapting to the condition. Don't be afraid to ask questions, ask what they're doing, why they're doing it, because that way you get educated in what to do also [Edward] . . . if you've got any kind of problem, any kind of problem, you ask that doctor to take a culture and stay on top of it [Edward] . . . life is precious and we need to do everything we can right now [Nell] . . . it led me to wonder about people's responsibility and mindset about, you know, protecting society, because we are totally dependent on that [Mary] . . . any bites we get, ants, mosquitos, anything, we go and put alcohol on them immediately [Dora] . . . keep your fingernails clean, under your fingernails, wash your hands, wash your hands, wash your hands [Dora] . . . when these flare up we basically quarantine ourselves quite a bit [Alvin] . . . it put me a little over the top with cleanliness [Trene] . . . my husband and I don't share towels anymore, we don't share razors, we don't even share toothpaste, it has changed my life in those regards [Mary]. These comments show that the participants take MRSA seriously, they take responsibility for their own wound care as well as limiting their activities to minimize exposure for others, and they have modified their attitudes towards hygiene, infection control, and their environments.
Reliance on others
The relationships that participants formed with family, friends, and healthcare professionals were a crucial component to the adaptation process. The message of others helping them through the MRSA experience was echoed by all participants many times in this study. My wife goes with me on almost every visit - you need that extra set of ears there and somebody taking notes [Alvin] . . . [my] wife helped [me] through depression during the long antibiotic treatments [Edward] . . . I've been around doctors my whole life and my parents have just valued doctors and their opinions [Trene] . . . I have four good friends that are physicians, and a cousin who I am very close to that is a physician - it's a definite plus, a definite plus [Irene] . . . it's easy, you know, to have these people around you that you are close to that if you have a problem that feel like you can discuss it with, whether it be [daughter], whether it be a friend, whether it be a family member [Irene].
The participants' reliance and trust in healthcare professions was also evident in several of the interviews. These individuals who created a comfort zone for their patients, who were patient with their questions, and who provided thorough and comprehensive information on the course of treatment were an invaluable resource for the participants. Honest, unhurried doctor-patient interactions were an important mechanism that created trust and helped individuals adapt to a MRSA infection.
Reflections on the MRSA journey
As might be expected, those who had a more severe MRSA infection or had multiple reocurrences with the infection were often more insightful about their journey. Reflection occurred as part of the interviews primarily when the participants were questioned about (a) living with MRSA and how it may have changed their life, (b) advice they would give to someone diagnosed with MRSA, and (c) advice they would give to healthcare professionals to help individuals diagnosed with MRSA. These reflections were often cited by the participants as being helpful for their understanding and adaptation to their MRSA experience.
Living with MRSA seemed to influence the participants to become advocates for educating others about their experience. By educating others about this growing public health threat, the participants felt like it helped them to warn others while also letting them work through the adaptive phase of their infection. Each of the ten participants was in some way, large or small, an advocate for educating others about the dangers of MRSA. By being active in telling their story, the participants found it therapeutic for their own healing. Make sure you know what you're dealing with, don't take it lightly [Alvin] . . . be aware of [your] environment - clean everything for sure [Trene] . . . don't be passive with your physician [Trene] . . . do the culture [Alvin] . . . find out first what strain of MRSA it is [Edward] . . . there is a protocol to make sure that the loved ones are taken care of and protected from it so that you don't spread anything [Edward] . . . if you've got any kind of problem, any kind of problem, you ask that doctor to take a culture and stay on top of it [Edward] . . . don't skip on the pills [antibiotics], even if you think your infection's getting better [Erin].
Most of the participants discussed how healthcare professionals could improve the interaction between the two parties by offering examples of what they felt had worked or not worked for them during their experiences. By doing so, the participants all reiterated that the reflective advice was helpful to them that maybe our story will help others.
Several of the participants also discussed how spirituality and prayer helped them get through their respective MRSA experiences. For these participants, their relationship with God and their usage of prayer helped them to adapt and accept the trials they were going through. It also gave them strength to endure the pain and emotional rollercoaster they were on during the infection process.