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research-article2014
QHRXXX10.1177/1049732314551989Qualitative Health ResearchSmith et al.
Article
How Fatigue Influences Exercise Participation in Men With Multiple Sclerosis
Qualitative Health Research 2015, Vol. 25(2) 179–188 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049732314551989 qhr.sagepub.com
Catherine M. Smith1, H. Jane M. Fitzgerald1, and Lisa Whitehead2
Abstract Researchers have suggested that men with multiple sclerosis (MS) experience lower self-efficacy than women with MS and have linked women’s self-efficacy with a sense of perceived control over symptoms and activities. Self-efficacy— the belief in one’s own ability to achieve an outcome—has also been linked to engagement in healthy behaviors such as exercise. We sampled men with MS to better understand how MS-related fatigue influences exercise participation. Guided by the interpretive description method, we interviewed 18 men about their fatigue and exercise experiences. One overarching theme and three subthemes were developed through multiple readings, author comparisons, and participant reflections. The men described a process of goal readjustment with regard to exercise that helped them stay engaged in meaningful physical activity despite fatigue. Health care professionals might consider introducing goal readjustment strategies to help men with MS-related fatigue retain perceived control over exercise engagement and achieve greater self-efficacy. Keywords exercise / physical activity; fatigue / exhaustion; interpretive description; men’s health; multiple sclerosis (MS) People with multiple sclerosis (MS) frequently experience fatigue, a symptom that has been described as one of the most disabling experiences of the condition (Flensner, Ek, & Soderhamn, 2003). MS-related fatigue is caused by multiple factors; however, researchers have proposed that the primary trigger is an energy supply and demand mismatch in the central nervous system (Leocani, Colombo, & Comi, 2008). Fatigue has been described as a barrier to participation in exercise (Stroud, Minahan, & Surendran, 2009), yet there is growing evidence that engagement in regular exercise might improve perceived health-related quality of life, mood, physical strength, and cardiovascular fitness for this population (Motl, McAuley, Snook, & Gliottoni, 2009; Rietberg, Brooks, Uitdehaag, & Kwakkel, 2005). Researchers have offered some insight into the complex processes involved in exercising with MS-related fatigue, including how multiple factors influenced these experiences both positively and negatively (Dodd, Taylor, Denisenko, & Prasad, 2006). These findings supported a relationship well described in the literature: that perceived control over symptoms and circumstances appears to play a role in determining positive or negative health experiences (Smith, Hale, Olson, & Schneiders, 2009; Thorne, Con, McGuinness, McPherson, & Harris, 2004). With regard to exercising, perceived control over fatigue
can contribute to either positive or negative feelings associated with exercise. Perceived control has been linked to two theoretical concepts: self-efficacy (Bandura, 1997) and locus of control (Wassem, 1991). Self-efficacy in particular has been strongly associated with successful health behavioral changes such as increasing levels of exercise activity (Motl & Snook, 2008). Eighty percent of people diagnosed with MS have a relapsing/remitting type of condition—characterized by unpredictable episodes of worsening neurological function followed by partial or full recovery—that is represented more commonly in women than men, by a ratio of approximately 2:1 (Noseworthy, Lucchinetti, Rodriguez, & Weinshenker, 2000). Twenty percent of people with MS have a progressive form, either primary or secondary, that is represented by a roughly equal number of men and women. In a recent study, Fraser and Polito (2007) found that levels of self-efficacy in those with relapsing/remitting symptoms were lower in men than in women, and 1
University of Otago, Dunedin, New Zealand University of Otago, Christchurch, New Zealand
2
Corresponding Author: Catherine M. Smith, School of Physiotherapy, University of Otago, 325 Great King St., Dunedin 9016, Otago, New Zealand. Email: [email protected]
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self-efficacy was lower overall in people with progressive MS types. The authors suggested that men with MS might experience overall lower levels of self-efficacy compared with women with MS, which in turn might lead to more negative health experiences (Fraser & Polito, 2007). Researchers have suggested that men construct health and health behavioral experiences differently than women (Courtney, 2000). For example, women are more likely than men to seek and offer social support with regard to health behaviors (Evans, 2011). Furthermore, social support has been linked to higher levels of perceived control in women (Smith, Olson, Hale, Baxter, & Schneiders, 2011). We noted that men were underrepresented in previous studies such as Smith et al. (2009, 2011), and we questioned how fatigue in men with MS might influence self-efficacy and exercise participation. Our research questions were as follows: How does fatigue influence community exercise participation in men? Can we identify any potential differences between men’s and women’s responses to fatigue that might help guide future lines of inquiry?
Design We used interpretive description to guide data collection, analysis, and presentation of our inquiry. Thorne, Kirkham, and MacDonald-Emes (1997) developed this approach to recognize the unique way in which health care providers gather and use knowledge, and to encourage identification of themes with both theoretical and practical implications (Thorne et al., 1997). Thorne et al. (1997) recommended selection of data collection methods most appropriate for answering the research question; in this study, individual semistructured interviews were used. We used an inductive analysis approach to help us identify themes related to the research question (Thorne, 2008). Partway through the analysis, we also identified two interlinked, health-related theoretical frameworks that we used to help us make sense of our data (Carver & Scheier, 2000; Rasmussen, Wrosch, Scheier, & Carver, 2006). This study was approved by the University of Otago Human Research Committee.
Sample and Setting We recruited men with MS, above 18 years old, who had experienced energy changes since diagnosis, who walked independently (with or without assistive devices), and who had exercised in their community at least once per week within the last 2 months. Community exercise included any form of exercise performed within the home, in the neighborhood, in a sports club, or in a similar facility. The men gave examples such as
walking, cycling, swimming, boxing, using virtual interactive games, or participating in a group exercise class. Community exercise excluded activities in a rehabilitation gym, hospital ward, or other health care setting. Men were recruited from three New Zealand regions—Otago, Canterbury, and Southland—on the southern portion of the South Island, where MS is more prevalent. We felt that by recruiting from these areas, we would have the opportunity to talk to men in urban and rural areas.
Data Collection We placed an advertisement for volunteers in Multiple Sclerosis Society local branch newsletters in the Otago, Canterbury, and Southland regions. In addition, we placed an advertisement on the Facebook page of the National New Zealand Multiple Sclerosis Society. A research administrator mailed a detailed information sheet to men who expressed an interest in the study and asked them to reply within 2 weeks if they wished to participate. We contacted each of the 18 participants to arrange individual interviews at locations convenient to them. We interviewed two men by telephone, one man at the local Multiple Sclerosis Society branch facility, and the rest of the men in their homes. Interviews lasted no longer than 1 hour because we wanted to minimize cognitive fatigue. They were digitally recorded and transcribed word-for-word by a professional service. Initially, we did not wish to frame our questions within a theoretical framework, so we asked the men to describe their exercise and fatigue experiences within their wider experience of having MS. Interviews began with the prompt, “Tell me a story to help me understand what it’s like to have MS.” Follow-up prompts included, Tell me more about your experience of fatigue; how do you manage fatigue and exercise? how did you come to choose that particular exercise? how do you feel when you exercise or don’t exercise? tell me what it means to you to be able to exercise. We began interviews in February 2011 and completed them in September 2011.
Analysis We interviewed 18 men with MS from three regions of the South Island of New Zealand and conducted follow-up interviews with 2 of these men. We received comments on the preliminary analysis from 6 men. The men’s ages ranged from 36 to 68 years old. Ten men had relapsing/remitting MS; 5 had primary progressive MS; and 3 had secondary progressive MS. Years since the diagnosis ranged from 3 to 21. Many participants had been aware of unusual symptoms months to years before their diagnosis. All participants identified with a New Zealand European ethnicity. In
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Smith et al. addition, 1 participant also identified as Croatian and 1 as Māori. We made notes as each interview transcript became available, and wrote reflections and summaries for each participant. In addition, the first author read a single transcript and made a detailed list of codes—some based on a single word, others on paragraphs or sections of text. The second author was given a blank transcript and a list of codes and asked how these codes fitted with her thoughts. As the interviews progressed, we added to the code list, and during our analysis meetings we explored how the codes might be grouped into categories. We identified preliminary categories that included progressive losses, control, compromise, routines, and exercising with fatigue. In addition, we used some of these early categories to inform subsequent interview prompts such as, “Some of the men we have interviewed have talked about having to compromise when it comes to exercise. Does this fit with your experience?” As we began to group categories, we were puzzled by the seemingly opposing categories of control and compromise. Furthermore, it seemed that fatigue had both physical and cognitive implications, and influenced aspects of the men’s self-identity. Thorne et al. (1997) encouraged use of supplementary data sources; therefore, we searched the scientific literature for ideas that would help answer this puzzle. We found the self-regulation model proposed by Rasmussen et al. (2006) and the response shift theory developed by Carver and Scheier (2000) useful in helping to explain our findings. These theories are interlinked in that Carver and Scheier first proposed response shift phenomena as adaptive strategies for successful goal readjustment in response to both internal feedback mechanisms and external drivers. Rasmussen et al. further developed this theory by proposing a hierarchy of goals in which lower level goals could be adjusted to maintain higher, or more meaningful, goals. As we analyzed how the men in our study managed to stay engaged with community exercise despite feeling tired, we identified one overarching theme: self-regulation processes in response to fatigue and exercise—in other words, how the men adapted to physical activity despite fatigue. We identified three subthemes that helped us to explain distinct aspects of this process: (a) complex expressions of fatigue, where we offer descriptive insights into what fatigue feels like, how exercise changes feelings of fatigue, and how fatigue seems to erode self-identity; (b) engaging in exercise and goal adjustment, in which we explain how we think the men’s adaptations to fatigue during exercise fit within Rasmussen’s theory of goal readjustment; and (c) emotional responses to fatigue and exercise, in which we reflect on the contribution of affective feedback in self-regulation processes, a process also described by Rasmussen et al. (2006).
Self-Regulation Processes in Response to Fatigue and Exercise: An Interpretive Description Complex Expressions of Fatigue In this subtheme, we describe a sense of how fatigue felt to men with MS with regard to both physical sensation and the erosion of self-identity. The men in this study experienced physical fatigue in the muscles, head, and entire body. Whole-body experiences were likened to “wearing a trench coat that goes down to your ankles and it’s made of lead.” One man described how fatigue following exercise affects sensation in the whole body: “After exercise you feel sort of emptied out and your . . . body’s sort of empty.” Head experiences were described as “brain-cheese,” a “hazy, out-of-body fatigue feeling,” and a “hangover.” A participant, who had experienced a persistent whining noise like a “puncture on a tire” from earlier hearing damage, described how this noise would increase and move from the usually affected ear to the usually unaffected ear when he was feeling exhausted. As his fatigue increased, this man also experienced a worsening visual problem that he described as a “rainbow.” One man’s description of muscle fatigue following exercise was typical of most participants: “I will go for a walk on the treadmill . . . and my legs will be all jellylike, but after a few minutes—10, 15 minutes—you recover again.” The men appeared to link fatigue to other symptoms of MS, including balance, cognition, pain, and visual disturbances. For example, if fatigue triggered deteriorating balance, men often described embarrassment about appearing drunk and were worried about how others identified them. Furthermore, it seemed that one experience of fatigue could trigger another. Many, but not all, of the men in this study described how fatigue posed a threat to their self-identity in the form of progressive losses that included meaningful work, youth, the authority to drive, strength and energy, and relationship roles. Such losses caused one man to say he felt “like I’m old before my time.” Loss of employment had a profound impact on another man, who made a decision to leave his job before he was fired. He described how the stress of this event triggered a relapse of his MS on arriving home afterward: “When I finished up, I come home . . . and something snapped here and I ended up on the floor. I couldn’t even walk.” A participant described driving as an integral part of himself and said that losing his driver’s license was “like having both legs cut off.” Twin losses of driver’s license and employment challenged men’s self-identities within the family. For example, one man lost his job and became more reliant on his wife for household income. As a result of this perceived
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dependency, he was unwilling to ask his wife to drive him to exercise classes in the city. Other participants felt they had progressively lost strength and energy, attributes they linked to “being a man.” The men closely linked loss of strength to low energy levels and described a desire to improve or maintain strength through exercise. Loss of energy was described in the context of slowing down as it always took longer to complete a task. One man described his experiences herding cattle: “I can’t go as quickly as I did in 2005; it takes me 3 times as long to do a job.” This link between loss of physical strength and the profound implications of the loss of work identity has been previously discussed by researchers about men with progressive disease (O’Brien, Hart, & Hunt, 2007). Some of the men described attributes associated with self-identity that either contributed to fatigue or helped them continue their exercise despite fatigue. A participant described one attribute as a “Scottish Capricorn male thing” and believed this “pig-headed [stubborn]” quality helped him continue with both work and exercise despite fatigue. Another participant felt that being raised in a farming family had influenced the way he managed fatigue in that he would often compromise on his exercise when he felt fatigued and yet occasionally would think “ah, no-bugger [an expletive] this” and continue with usual activities regardless of his exhaustion. The determination of both men worked positively toward achieving their goals and was consistent with Rasmussen et al. (2006), who propose that personality types influence health outcomes—particularly, that an optimistic personality will yield better health outcomes. In this case, determination was an equally useful personality trait to have when overcoming the barriers of fatigue.
Engaging in Exercise and Goal Adjustment The men explained that complex fatigue reduced the amount of control they had over their lives, including their ability to engage in prediagnosis levels of exercise and physical activity (both recreational and work related). Even so, most of the men eventually took a flexible, problem-solving approach to managing their symptoms in the context of exercise and were able to regain a sense of control. This approach, which appeared to be independent of any support from health care professionals, also was reported by Stuifbergen and Rogers (1997). We used the self-regulation model proposed by Rasmussen et al. (2006) to help explain how the men gradually adjusted their physical activity in response to fatigue symptoms in MS. Using this hierarchical model, the authors explain how an individual adjusts goals in response to successive discrepancies between intended goals or internal standards and actual input or behavior.
Furthermore, this hierarchy of goals is closely linked to a self-regulation process called a “response shift” proposed earlier by Carver and Scheier (2000). Rasmussen et al. developed a model (Figure 1), which helps to explain responses to symptoms in chronic disease where threats to health are often persistent and cumulative. In this model, the authors suggest that higher “be” goals directly contribute to a concept of “ideal self,” and we think these goals also are linked to self-identity. Because we have explored self-identity through the subtheme of complex descriptions of fatigue, here we will focus on specific types of exercise participation as “be” goals and explore how the unpredictable nature of complex fatigue causes a response shift with respect to “do” goals. We propose that in a condition like MS, with symptoms such as complex fatigue, the ability to adjust “be” and “do” goals is a necessary and ongoing skill that might help preserve aspects of self-identity and quality of life. “Be” goals. Some men described specific goals such as “I want to be able to mow my own lawns,” whereas others described more abstract ones such as, “I want to contribute to our relationship by continuing to work.” Both of these activities involved physical activity and were influenced by fatigue. One participant expressed a strong desire to be able to continue with martial arts because it “just kind of makes me feel better about myself, and I just like to know I can do it.” He went on to say, “I do find exercise is definitely important; it’s got to be one of the most important things.” Another man wanted to look normal; he felt that when he experienced fatigue his movements deteriorated, giving the appearance of being drunk. These goals—which can be conceived as “be” goals in the top level of the goal hierarchy proposed by Rasmussen et al. (2006)—appeared to be directed toward aspects of men’s self-identity and values. “Do” goals. More concrete “do” goals were related to how the men in this study would manage exercise in response to fatigue and low energy levels and described how the higher “be” goals would be accomplished. The participants were skilled in adjusting “do” goals, which Carver and Scheier (2000) refer to as a “response shift.” However, the men described experiences, usually from early in their diagnosis, when they had not been able to adjust. Symptoms of MS, particularly complex fatigue, necessitate frequent and ongoing response shifts, or readjustments of “do” goals, to prevent discrepancies between intended goals and the reality of current ability. Carver and Scheier described three ways in which this response shift is achieved: (a) the recalibration of an existing goal, (b) altered purpose or perspective, and (c) reprioritization of activities.
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Ideal Self
System concepts
Be Healthy
Principles
Programs
Take vitamins
Sequences
Remove Cap
“Be” goals
“Do” goals
Motor control goals
.. Figure 1. Rasmussen’s model of hierarchical goals.
Source. Rasmussen, Wrosch, Scheier, and Carver (2006). This material is reproduced with permission from John Wiley & Sons, Inc.
Recalibration of an existing “do” goal. The men in our study achieved a response shift by adjusting their “do” goals. To maintain his “be” goal of performing martial arts, one man made fewer moves at one time, and in this way avoided fatigue and pain while continuing his activity. Carver and Scheier (2000) describe this as a process of adapting an internal “rate standard.” This man achieved his “be” goal because there was no longer a discrepancy between the rate standard, or “do” goal, and the input, or exercise, behavior. This type of scaling back, or reduction in the intensity (rate) and duration of exercise, was a common response to reducing fatigue and this man changed his response because he was unable to achieve his previous intensity of martial arts skills. Carver and Scheier define this recalibration of an existing goal as an adaptive response to ongoing challenges in someone with chronic symptoms. One participant felt angry and frustrated about not being able to mow his lawns. He changed his response by “self-learning as to how to do things.” Initially, he completed the lawn work all in one session, but later he taught himself that it was “OK to do one lawn in 1 day.” He kept up with his lawn mowing goal but scaled back how much
he did at one time and felt subsequently more positive about it. Several men in this study held on to their passions for a particular form of exercise and adjusted their “do” goals to maintain engagement. For example, one man described his love of hunting: Because I love being outside, and I still want to do the things I used to do, and I know it’s going to be at a reduced capacity, . . . [m]y hunting’s a real motivator for me. I want to be able to still get out there and do it [hunt deer and wild pig] even though I know I can’t do what I used to.
Rasmussen et al. (2006) describe scaling back of intensity as a “do” goal that might allow individuals to stay engaged in valued activities. Adjustment of exercise intensity was a strategy frequently used by the men. One participant worked at home and found this useful because he could exercise and work “at his own pace.” This helped him control tiredness. Another man experienced fatigue that made his “brain all fuzzy” and felt a “sort of fatigue in muscles” with physical activity. He took small breaks when he might “sit down and have a cup of tea” to
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recover before he continued with an activity. One man described how he could manage his physical activity if he did things slowly, as doing things quickly “brings it [the fatigue] on really quickly.” Exercising with frequent breaks and at a slower pace or intensity seemed to reduce complex fatigue symptoms for men with MS. This is an important “do” goal that could be incorporated into the practices of health professionals.
losing motivation. A dog helped maintain engagement with walking, and several men implied they would not walk for exercise without a dog. In a prior study, women had described walking either alone or in groups with other human companions (Smith et al., 2011). Dog walking could be a useful intervention to explore, for example, the usefulness of dog-walking groups for men with MS.
Reprioritizing activities. By choosing to walk for exercise, one man explained how he could “control how much energy I was using” compared with other options such as going to the gym. This process of deciding how best to use the “finite energy in the tank” was a common theme and involved the men choosing one activity over another. Another man describes this dilemma: “I can work less if I walk for about an hour . . . It’s all about compromise.” This is an example of another response shift strategy, or reprioritization of activities. Another man had a similar experience with a definite limit of energy available for exercise. He described having only “three blocks of energy in a day” and could tell how much he could expend and how much he would have left over. When this man felt he was nearing his limit, he slowed his cycling speed or got off his bike and walked until he felt better. This strategy allowed him to achieve his “be” goal of continuing to be a cyclist.
Adaptive accessories. Some “do” goals included the use of adaptive accessories, which allowed men to continue with their desired exercise activity. For example, a participant decided to minimize his symptoms while cycling by using cleats. He described the rationale for this strategy,
Altered purpose or perspective: Recalibrating the “be” goal. One participant, a keen bodybuilder and butcher, changed his perspective toward working because of the effect of fatigue and reduced energy levels on his work and exercise. After a period off work, he decided to reenter the workforce as a butcher but with reduced hours. He said before he had MS, “it was important how much you could get done in a space of time; now it’s more like, what you can get done. It doesn’t matter how long it takes.” This change in perspective relates to a third type of response shift described by Carver and Scheier (2000) that operates at the “be” goal level proposed by Rasmussen et al. (2006). In addition to the three response shift behaviors described by Carver and Scheier (2000), we identified several “do” goals that appeared to facilitate ongoing engagement in exercise activities. These approaches included dog walking, the use of adaptive accessories, cooling strategies, active recovery, and exercising alone. We think these strategies might complement the goal readjustment approaches described in previous sections. Dog walking. Several men chose to walk with their dog because it helped them stick to exercise routines. One participant described needing “dog power” when he was
My feet are locked in and they can only go one way, and I’m not having to control it; all I’m having to do is push . . . I don’t have to judge how far the ground is away, so it’s easy. Yeah, there’s less variables that you have to look out for.
This strategy afforded a degree of control for him both on a daily basis and in the longer term. It also appeared to minimize the mental fatigue that often accompanied the intense concentration required to control his legs. For this man, cycling was a lifelong passion and appeared closely related to his self-image. Cooling strategies. Several men described how extremes of temperature, particularly heat, could influence fatigue levels and subsequently limit the amount of exercise they could complete. Most men referred to environmental heat and sunlight as key triggers for fatigue; however, others described how extreme cold also could influence energy levels. One man described how swimming several times a week allowed him to stay cool during exercise. He also described how he enjoyed walking on frosty days because he did not tire as quickly as on warm days. Although heat sensitivity is a well-recognized symptom of MS and several authors have already demonstrated the benefits of cooling strategies (Schwid et al., 2003), and this man offered additional insight into the potential for cooling strategies to increase perceived control over fatigue and exercise: Cycling—you do get hot, and the way to cool down is to drink cold water or go downhill, just have the wind cooling your body down. Or going diving, and just being in a cold environment, you can’t really heat up, so you’re sort of, you’re controlling it; you’re taking steps to control it.
In previous studies, cooling strategies during exercise were also important for women, who described the negative impact of hot and cold extremes on their capacity for exercise (Smith et al., 2011).
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Smith et al. Active recovery. After a busy day in the garden, one participant described a “hazy, out-of-body fatigue feeling” and being unable to function normally for a few days. He found that complete rest after these exhausting periods was not helpful, and if he could motivate himself to go for a swim or do some exercise, he could get through that feeling of fatigue. Another man used the analogy of a “wee [small] generator or dynamo in your body” when after a period of fatigue you just “keep going in little bits at a time and build it back up,” rather than rest. Both these men self-regulated their complex fatigue symptoms through learning and experimenting over time. Not all attempts to prevent fatigue during or after exercise were successful, but recovery was sometimes helped by gentle exercise. One man lost control of his fatigue at times but could regain control by adopting a technique that is promoted in sports science—gentle exercise during recovery from intense exercise (Barnett, 2006). Prolonged rest after an episode of exercise-induced fatigue did not appear to help recovery, and future studies might compare complete rest to gentle exercise as a fatigue recovery strategy in this population. Exercising alone. Several men chose to exercise alone rather than go to a gym or a group exercise setting because they could stop and rest easily or shorten exercise duration without being embarrassed in a public place. Choice of exercise setting enabled the men to self-pace activities, which seemed more important for those whose fatigue resulted in weakness and balance difficulties. Preferred exercise settings differed between men in this study and women in a previous study who appeared to be more comfortable exercising in a group (Smith et al., 2011). However, a small group of men in our study from one geographical region found strength and shared meaning at a yoga class hosted by the Multiple Sclerosis Society. We think this might be an example of a response shift involving altered perspectives in those men, who previously had preferred to exercise alone yet found additional benefits exercising in a group.
Emotional Responses to Fatigue and Exercise Rasmussen et al. (2006) proposed that adjustment of previous “do” goals provokes emotions, or affect. In our study, this adjustment was a gradual process, and often followed a repeated lack of success that resulted in frustration and anger and threatened attainment of the men’s higher “be” goals. Those men who were able to engage in highly valued activities—even if the intensity was less, or if they achieved them through a different route—experienced positive feelings and a sense of control. One man
described a “buzz [a good feeling]” and a sense of control when he performed fewer martial arts moves for a shorter time. Another man loved biking because, he said, “I can travel a hell of a lot further than would be capable on my feet.” He said “that if I hadn’t been passionate about biking or cycling, it would have been a limiting factor.” To reinforce men’s confidence in their ability to readjust “do” goals, health professionals might consider integrating activities that men with MS are passionate about into exercise advice. Conversely, those who are unable to successfully make goal adjustments can disengage from highly valued activities, resulting in negative feelings. This man described feelings of frustration when he was unable to carry out his planned exercise: If I take the dog for a walk, I pick out how far I’m going to go, . . . and some days it’s a cool day and you can go down there and I can walk quite well for 500 meters . . . [but] other days, if you haven’t had a good sleep, then you can walk a 100 meters.
He goes on to say that “some days I think, you know, it’s a waste of time because I’d rather just go and sit on the couch, because after exercise, “you’re back to square one [to the beginning].” Despite this frustration, he was motivated by his love of the outdoors, an illustration of how strong “be” goals are for these men. Frustration, if ongoing, can lead to depression in some people, and Carver and Scheier (2000) point out that “the depression response is most likely to occur when the frustrated goal is deeply connected to the core of the self. Such a goal is not easily abandoned or even scaled back” (p. 1721). Carver and Scheier also suggest that lapsing into depression might be a reflection of slower recalibration of goals. Being aware of this possibility, health professionals might facilitate a faster process by establishing mentors to guide men in the process of recalibrating their goals. The men in this study appeared to intuitively use self-regulation as a survival mechanism. The importance of having goals that were highly valued and related to activities and work prior to diagnosis allowed the men to feel a sense of achievement and optimism despite their losses. Recalibrating “do” goals involved many strategies, decisions, and exercise choices. The ability to recalibrate appeared not only related to the intensity or type of exercise but also to the value the men placed on the activity. All of the men in our study continued engaging in exercise while experiencing complex fatigue, which caused us to question whether a wider group of men with MS disengage with exercise early, following diagnosis, because of some of the barriers we have discussed.
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Discussion Smith et al. (2009, 2011) have linked perceived control to self-efficacy and have proposed that perceived control might influence exercise experiences. Sloan, Gough, and Conner (2010) identified control and autonomy as attributes that facilitated health-promoting activities in men, yet Fraser and Polito (2007) found men with MS might have overall lower levels of self-efficacy than women with MS. In our study, men who were able to stay engaged with exercise demonstrated an ability to readjust goal-orientated behaviors on a continual basis, a process we felt was closely aligned to the goal hierarchy model (Rasmussen et al., 2006). It is possible that this ability to adjust goals is linked to levels of self-efficacy and therefore should be considered by health care professionals and exercise scientists as a potential strategy to help men with MS remain engaged in meaningful exercise. In the last section of this discussion, we suggest practical ways this might be achieved; however, these suggestions are tentative and will require more development and evaluation. Researchers have indicated that for women, feeling supported is a key factor influencing health-seeking behaviors such as exercise (Courtney, 2000). Men are less likely to seek this support, perhaps in part because health care providers offer solutions perceived as having feminine connotations, such as group exercise classes. However, Kasser (2009) suggested some men prefer to exercise in groups, and three men in our study regularly participated in a coed group exercise activity at a local branch of an MS support group. In this group, they found it helpful to talk to others about health topics such as having MS, exercising, and eating healthy foods. It would be useful to know more about how group dynamics influence perceived benefits of group exercise—for example, whether men are more comfortable discussing health issues in a group consisting solely of men. Health care providers might consider talking to men in the context of the passions and activities that shape their identity as men and suggest ways to adjust their “do” goals and achieve their “be” goals, perhaps using the three strategies of goal readjustment proposed by Carver and Scheier (2000) and, trying other approaches such as dog walking, the use of adaptive accessories, cooling off, active recovery, and exercising alone. Men in this study appeared to be passionate about particular types of exercise and activities, whereas women in a previous study tended to show more passion for the environment in which the activities occurred. For example, in a study by Smith et al. (2011), one woman with MS talked about how walking along a particular beachfront that the family had been visiting for years was less exhausting than walking down her street. Researchers
have discussed how important it is for women to be engaged in activities they are passionate about; however, descriptions in one study by Reynolds and Pryor (2003) seemed to indicate that women were able to adapt and find new passions, or “be” goals, to replace previously meaningful pursuits that often were more physically active. To more fully illustrate how well goal readjustment would help men with MS continue exercising, we would need to explore the issue with men who are not currently exercising but possibly considering activity. Courtney (2000) proposed that current health care systems play a key role in constructing gender differences, and that men might perceive a challenge to their masculinity by engaging with these systems. In our descriptions of complex fatigue, we noted that men often used what could be thought of as traditionally masculine metaphors, such as a “punctured tire,” a “lead trench coat,” and “like a hangover.” Metaphors also were used by women in previous studies, but in contrast to the men’s descriptions, fatigue was likened to “menstruation” (Smith et al., 2011). We propose that health care providers might carefully consider their choice of language when offering advice about exercise as one strategy to more fully engage men. Preserving self-identity might encourage men to remain engaged in long-term exercise, which has been shown to deliver health benefits in a wider MS population (Rietberg et al., 2005). Researchers have found that selfidentity is influenced by fatigue and exercise in women with MS (Courtney, 2000; Reynolds & Pryor, 2003; Smith et al., 2011). However, we felt that the men in our study provided more descriptions of how complex fatigue affected aspects of their self-identity, including the kinds of work they did (through employment and around the home), their family roles (drivers, providers), and their exercise activities (mostly sports-related). We think this is an area where goal recalibration or response shift might be a useful way for health care professionals to help men stay engaged in physical activity because this model is very much linked to self-identity through the hierarchy of goals. Although it might be useful for health care professionals to consider goal readjustment strategies when recommending exercise for men with MS, in this study we have only skimmed the surface of how men and women with MS might experience fatigue, exercise, and perceived control over these constructs. We propose to explore these differences within a framework of gender and health construction in future studies. Acknowledgments The authors thank Multiple Sclerosis Otago, the Southland Multiple Sclerosis Society, and the Multiple Sclerosis and Parkinson’s Society of Canterbury for their support of this study.
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Smith et al. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The study was funded by a University of Otago Research Grant.
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Author Biographies Catherine M. Smith, PhD, is a research fellow at the Centre for Health, Activity and Rehabilitation Research, School of Physiotherapy, University of Otago, Dunedin, New Zealand. H. Jane M. Fitzgerald, MSc, is a research assistant at the Centre for Health, Activity and Rehabilitation Research, School of Physiotherapy, University of Otago, Dunedin, New Zealand. Lisa Whitehead, PhD, Fellow of the College of Nurses Aotearoa, is an associate professor at the Centre for Postgraduate Nursing Studies, University of Otago, Christchurch, New Zealand.
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QHRXXX10.1177/1049732314551989Qualitative Health ResearchSmith et al.
Article
How Fatigue Influences Exercise Participation in Men With Multiple Sclerosis
Qualitative Health Research 2015, Vol. 25(2) 179–188 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049732314551989 qhr.sagepub.com
Catherine M. Smith1, H. Jane M. Fitzgerald1, and Lisa Whitehead2
Abstract Researchers have suggested that men with multiple sclerosis (MS) experience lower self-efficacy than women with MS and have linked women’s self-efficacy with a sense of perceived control over symptoms and activities. Self-efficacy— the belief in one’s own ability to achieve an outcome—has also been linked to engagement in healthy behaviors such as exercise. We sampled men with MS to better understand how MS-related fatigue influences exercise participation. Guided by the interpretive description method, we interviewed 18 men about their fatigue and exercise experiences. One overarching theme and three subthemes were developed through multiple readings, author comparisons, and participant reflections. The men described a process of goal readjustment with regard to exercise that helped them stay engaged in meaningful physical activity despite fatigue. Health care professionals might consider introducing goal readjustment strategies to help men with MS-related fatigue retain perceived control over exercise engagement and achieve greater self-efficacy. Keywords exercise / physical activity; fatigue / exhaustion; interpretive description; men’s health; multiple sclerosis (MS) People with multiple sclerosis (MS) frequently experience fatigue, a symptom that has been described as one of the most disabling experiences of the condition (Flensner, Ek, & Soderhamn, 2003). MS-related fatigue is caused by multiple factors; however, researchers have proposed that the primary trigger is an energy supply and demand mismatch in the central nervous system (Leocani, Colombo, & Comi, 2008). Fatigue has been described as a barrier to participation in exercise (Stroud, Minahan, & Surendran, 2009), yet there is growing evidence that engagement in regular exercise might improve perceived health-related quality of life, mood, physical strength, and cardiovascular fitness for this population (Motl, McAuley, Snook, & Gliottoni, 2009; Rietberg, Brooks, Uitdehaag, & Kwakkel, 2005). Researchers have offered some insight into the complex processes involved in exercising with MS-related fatigue, including how multiple factors influenced these experiences both positively and negatively (Dodd, Taylor, Denisenko, & Prasad, 2006). These findings supported a relationship well described in the literature: that perceived control over symptoms and circumstances appears to play a role in determining positive or negative health experiences (Smith, Hale, Olson, & Schneiders, 2009; Thorne, Con, McGuinness, McPherson, & Harris, 2004). With regard to exercising, perceived control over fatigue
can contribute to either positive or negative feelings associated with exercise. Perceived control has been linked to two theoretical concepts: self-efficacy (Bandura, 1997) and locus of control (Wassem, 1991). Self-efficacy in particular has been strongly associated with successful health behavioral changes such as increasing levels of exercise activity (Motl & Snook, 2008). Eighty percent of people diagnosed with MS have a relapsing/remitting type of condition—characterized by unpredictable episodes of worsening neurological function followed by partial or full recovery—that is represented more commonly in women than men, by a ratio of approximately 2:1 (Noseworthy, Lucchinetti, Rodriguez, & Weinshenker, 2000). Twenty percent of people with MS have a progressive form, either primary or secondary, that is represented by a roughly equal number of men and women. In a recent study, Fraser and Polito (2007) found that levels of self-efficacy in those with relapsing/remitting symptoms were lower in men than in women, and 1
University of Otago, Dunedin, New Zealand University of Otago, Christchurch, New Zealand
2
Corresponding Author: Catherine M. Smith, School of Physiotherapy, University of Otago, 325 Great King St., Dunedin 9016, Otago, New Zealand. Email: [email protected]
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self-efficacy was lower overall in people with progressive MS types. The authors suggested that men with MS might experience overall lower levels of self-efficacy compared with women with MS, which in turn might lead to more negative health experiences (Fraser & Polito, 2007). Researchers have suggested that men construct health and health behavioral experiences differently than women (Courtney, 2000). For example, women are more likely than men to seek and offer social support with regard to health behaviors (Evans, 2011). Furthermore, social support has been linked to higher levels of perceived control in women (Smith, Olson, Hale, Baxter, & Schneiders, 2011). We noted that men were underrepresented in previous studies such as Smith et al. (2009, 2011), and we questioned how fatigue in men with MS might influence self-efficacy and exercise participation. Our research questions were as follows: How does fatigue influence community exercise participation in men? Can we identify any potential differences between men’s and women’s responses to fatigue that might help guide future lines of inquiry?
Design We used interpretive description to guide data collection, analysis, and presentation of our inquiry. Thorne, Kirkham, and MacDonald-Emes (1997) developed this approach to recognize the unique way in which health care providers gather and use knowledge, and to encourage identification of themes with both theoretical and practical implications (Thorne et al., 1997). Thorne et al. (1997) recommended selection of data collection methods most appropriate for answering the research question; in this study, individual semistructured interviews were used. We used an inductive analysis approach to help us identify themes related to the research question (Thorne, 2008). Partway through the analysis, we also identified two interlinked, health-related theoretical frameworks that we used to help us make sense of our data (Carver & Scheier, 2000; Rasmussen, Wrosch, Scheier, & Carver, 2006). This study was approved by the University of Otago Human Research Committee.
Sample and Setting We recruited men with MS, above 18 years old, who had experienced energy changes since diagnosis, who walked independently (with or without assistive devices), and who had exercised in their community at least once per week within the last 2 months. Community exercise included any form of exercise performed within the home, in the neighborhood, in a sports club, or in a similar facility. The men gave examples such as
walking, cycling, swimming, boxing, using virtual interactive games, or participating in a group exercise class. Community exercise excluded activities in a rehabilitation gym, hospital ward, or other health care setting. Men were recruited from three New Zealand regions—Otago, Canterbury, and Southland—on the southern portion of the South Island, where MS is more prevalent. We felt that by recruiting from these areas, we would have the opportunity to talk to men in urban and rural areas.
Data Collection We placed an advertisement for volunteers in Multiple Sclerosis Society local branch newsletters in the Otago, Canterbury, and Southland regions. In addition, we placed an advertisement on the Facebook page of the National New Zealand Multiple Sclerosis Society. A research administrator mailed a detailed information sheet to men who expressed an interest in the study and asked them to reply within 2 weeks if they wished to participate. We contacted each of the 18 participants to arrange individual interviews at locations convenient to them. We interviewed two men by telephone, one man at the local Multiple Sclerosis Society branch facility, and the rest of the men in their homes. Interviews lasted no longer than 1 hour because we wanted to minimize cognitive fatigue. They were digitally recorded and transcribed word-for-word by a professional service. Initially, we did not wish to frame our questions within a theoretical framework, so we asked the men to describe their exercise and fatigue experiences within their wider experience of having MS. Interviews began with the prompt, “Tell me a story to help me understand what it’s like to have MS.” Follow-up prompts included, Tell me more about your experience of fatigue; how do you manage fatigue and exercise? how did you come to choose that particular exercise? how do you feel when you exercise or don’t exercise? tell me what it means to you to be able to exercise. We began interviews in February 2011 and completed them in September 2011.
Analysis We interviewed 18 men with MS from three regions of the South Island of New Zealand and conducted follow-up interviews with 2 of these men. We received comments on the preliminary analysis from 6 men. The men’s ages ranged from 36 to 68 years old. Ten men had relapsing/remitting MS; 5 had primary progressive MS; and 3 had secondary progressive MS. Years since the diagnosis ranged from 3 to 21. Many participants had been aware of unusual symptoms months to years before their diagnosis. All participants identified with a New Zealand European ethnicity. In
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Smith et al. addition, 1 participant also identified as Croatian and 1 as Māori. We made notes as each interview transcript became available, and wrote reflections and summaries for each participant. In addition, the first author read a single transcript and made a detailed list of codes—some based on a single word, others on paragraphs or sections of text. The second author was given a blank transcript and a list of codes and asked how these codes fitted with her thoughts. As the interviews progressed, we added to the code list, and during our analysis meetings we explored how the codes might be grouped into categories. We identified preliminary categories that included progressive losses, control, compromise, routines, and exercising with fatigue. In addition, we used some of these early categories to inform subsequent interview prompts such as, “Some of the men we have interviewed have talked about having to compromise when it comes to exercise. Does this fit with your experience?” As we began to group categories, we were puzzled by the seemingly opposing categories of control and compromise. Furthermore, it seemed that fatigue had both physical and cognitive implications, and influenced aspects of the men’s self-identity. Thorne et al. (1997) encouraged use of supplementary data sources; therefore, we searched the scientific literature for ideas that would help answer this puzzle. We found the self-regulation model proposed by Rasmussen et al. (2006) and the response shift theory developed by Carver and Scheier (2000) useful in helping to explain our findings. These theories are interlinked in that Carver and Scheier first proposed response shift phenomena as adaptive strategies for successful goal readjustment in response to both internal feedback mechanisms and external drivers. Rasmussen et al. further developed this theory by proposing a hierarchy of goals in which lower level goals could be adjusted to maintain higher, or more meaningful, goals. As we analyzed how the men in our study managed to stay engaged with community exercise despite feeling tired, we identified one overarching theme: self-regulation processes in response to fatigue and exercise—in other words, how the men adapted to physical activity despite fatigue. We identified three subthemes that helped us to explain distinct aspects of this process: (a) complex expressions of fatigue, where we offer descriptive insights into what fatigue feels like, how exercise changes feelings of fatigue, and how fatigue seems to erode self-identity; (b) engaging in exercise and goal adjustment, in which we explain how we think the men’s adaptations to fatigue during exercise fit within Rasmussen’s theory of goal readjustment; and (c) emotional responses to fatigue and exercise, in which we reflect on the contribution of affective feedback in self-regulation processes, a process also described by Rasmussen et al. (2006).
Self-Regulation Processes in Response to Fatigue and Exercise: An Interpretive Description Complex Expressions of Fatigue In this subtheme, we describe a sense of how fatigue felt to men with MS with regard to both physical sensation and the erosion of self-identity. The men in this study experienced physical fatigue in the muscles, head, and entire body. Whole-body experiences were likened to “wearing a trench coat that goes down to your ankles and it’s made of lead.” One man described how fatigue following exercise affects sensation in the whole body: “After exercise you feel sort of emptied out and your . . . body’s sort of empty.” Head experiences were described as “brain-cheese,” a “hazy, out-of-body fatigue feeling,” and a “hangover.” A participant, who had experienced a persistent whining noise like a “puncture on a tire” from earlier hearing damage, described how this noise would increase and move from the usually affected ear to the usually unaffected ear when he was feeling exhausted. As his fatigue increased, this man also experienced a worsening visual problem that he described as a “rainbow.” One man’s description of muscle fatigue following exercise was typical of most participants: “I will go for a walk on the treadmill . . . and my legs will be all jellylike, but after a few minutes—10, 15 minutes—you recover again.” The men appeared to link fatigue to other symptoms of MS, including balance, cognition, pain, and visual disturbances. For example, if fatigue triggered deteriorating balance, men often described embarrassment about appearing drunk and were worried about how others identified them. Furthermore, it seemed that one experience of fatigue could trigger another. Many, but not all, of the men in this study described how fatigue posed a threat to their self-identity in the form of progressive losses that included meaningful work, youth, the authority to drive, strength and energy, and relationship roles. Such losses caused one man to say he felt “like I’m old before my time.” Loss of employment had a profound impact on another man, who made a decision to leave his job before he was fired. He described how the stress of this event triggered a relapse of his MS on arriving home afterward: “When I finished up, I come home . . . and something snapped here and I ended up on the floor. I couldn’t even walk.” A participant described driving as an integral part of himself and said that losing his driver’s license was “like having both legs cut off.” Twin losses of driver’s license and employment challenged men’s self-identities within the family. For example, one man lost his job and became more reliant on his wife for household income. As a result of this perceived
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dependency, he was unwilling to ask his wife to drive him to exercise classes in the city. Other participants felt they had progressively lost strength and energy, attributes they linked to “being a man.” The men closely linked loss of strength to low energy levels and described a desire to improve or maintain strength through exercise. Loss of energy was described in the context of slowing down as it always took longer to complete a task. One man described his experiences herding cattle: “I can’t go as quickly as I did in 2005; it takes me 3 times as long to do a job.” This link between loss of physical strength and the profound implications of the loss of work identity has been previously discussed by researchers about men with progressive disease (O’Brien, Hart, & Hunt, 2007). Some of the men described attributes associated with self-identity that either contributed to fatigue or helped them continue their exercise despite fatigue. A participant described one attribute as a “Scottish Capricorn male thing” and believed this “pig-headed [stubborn]” quality helped him continue with both work and exercise despite fatigue. Another participant felt that being raised in a farming family had influenced the way he managed fatigue in that he would often compromise on his exercise when he felt fatigued and yet occasionally would think “ah, no-bugger [an expletive] this” and continue with usual activities regardless of his exhaustion. The determination of both men worked positively toward achieving their goals and was consistent with Rasmussen et al. (2006), who propose that personality types influence health outcomes—particularly, that an optimistic personality will yield better health outcomes. In this case, determination was an equally useful personality trait to have when overcoming the barriers of fatigue.
Engaging in Exercise and Goal Adjustment The men explained that complex fatigue reduced the amount of control they had over their lives, including their ability to engage in prediagnosis levels of exercise and physical activity (both recreational and work related). Even so, most of the men eventually took a flexible, problem-solving approach to managing their symptoms in the context of exercise and were able to regain a sense of control. This approach, which appeared to be independent of any support from health care professionals, also was reported by Stuifbergen and Rogers (1997). We used the self-regulation model proposed by Rasmussen et al. (2006) to help explain how the men gradually adjusted their physical activity in response to fatigue symptoms in MS. Using this hierarchical model, the authors explain how an individual adjusts goals in response to successive discrepancies between intended goals or internal standards and actual input or behavior.
Furthermore, this hierarchy of goals is closely linked to a self-regulation process called a “response shift” proposed earlier by Carver and Scheier (2000). Rasmussen et al. developed a model (Figure 1), which helps to explain responses to symptoms in chronic disease where threats to health are often persistent and cumulative. In this model, the authors suggest that higher “be” goals directly contribute to a concept of “ideal self,” and we think these goals also are linked to self-identity. Because we have explored self-identity through the subtheme of complex descriptions of fatigue, here we will focus on specific types of exercise participation as “be” goals and explore how the unpredictable nature of complex fatigue causes a response shift with respect to “do” goals. We propose that in a condition like MS, with symptoms such as complex fatigue, the ability to adjust “be” and “do” goals is a necessary and ongoing skill that might help preserve aspects of self-identity and quality of life. “Be” goals. Some men described specific goals such as “I want to be able to mow my own lawns,” whereas others described more abstract ones such as, “I want to contribute to our relationship by continuing to work.” Both of these activities involved physical activity and were influenced by fatigue. One participant expressed a strong desire to be able to continue with martial arts because it “just kind of makes me feel better about myself, and I just like to know I can do it.” He went on to say, “I do find exercise is definitely important; it’s got to be one of the most important things.” Another man wanted to look normal; he felt that when he experienced fatigue his movements deteriorated, giving the appearance of being drunk. These goals—which can be conceived as “be” goals in the top level of the goal hierarchy proposed by Rasmussen et al. (2006)—appeared to be directed toward aspects of men’s self-identity and values. “Do” goals. More concrete “do” goals were related to how the men in this study would manage exercise in response to fatigue and low energy levels and described how the higher “be” goals would be accomplished. The participants were skilled in adjusting “do” goals, which Carver and Scheier (2000) refer to as a “response shift.” However, the men described experiences, usually from early in their diagnosis, when they had not been able to adjust. Symptoms of MS, particularly complex fatigue, necessitate frequent and ongoing response shifts, or readjustments of “do” goals, to prevent discrepancies between intended goals and the reality of current ability. Carver and Scheier described three ways in which this response shift is achieved: (a) the recalibration of an existing goal, (b) altered purpose or perspective, and (c) reprioritization of activities.
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Ideal Self
System concepts
Be Healthy
Principles
Programs
Take vitamins
Sequences
Remove Cap
“Be” goals
“Do” goals
Motor control goals
.. Figure 1. Rasmussen’s model of hierarchical goals.
Source. Rasmussen, Wrosch, Scheier, and Carver (2006). This material is reproduced with permission from John Wiley & Sons, Inc.
Recalibration of an existing “do” goal. The men in our study achieved a response shift by adjusting their “do” goals. To maintain his “be” goal of performing martial arts, one man made fewer moves at one time, and in this way avoided fatigue and pain while continuing his activity. Carver and Scheier (2000) describe this as a process of adapting an internal “rate standard.” This man achieved his “be” goal because there was no longer a discrepancy between the rate standard, or “do” goal, and the input, or exercise, behavior. This type of scaling back, or reduction in the intensity (rate) and duration of exercise, was a common response to reducing fatigue and this man changed his response because he was unable to achieve his previous intensity of martial arts skills. Carver and Scheier define this recalibration of an existing goal as an adaptive response to ongoing challenges in someone with chronic symptoms. One participant felt angry and frustrated about not being able to mow his lawns. He changed his response by “self-learning as to how to do things.” Initially, he completed the lawn work all in one session, but later he taught himself that it was “OK to do one lawn in 1 day.” He kept up with his lawn mowing goal but scaled back how much
he did at one time and felt subsequently more positive about it. Several men in this study held on to their passions for a particular form of exercise and adjusted their “do” goals to maintain engagement. For example, one man described his love of hunting: Because I love being outside, and I still want to do the things I used to do, and I know it’s going to be at a reduced capacity, . . . [m]y hunting’s a real motivator for me. I want to be able to still get out there and do it [hunt deer and wild pig] even though I know I can’t do what I used to.
Rasmussen et al. (2006) describe scaling back of intensity as a “do” goal that might allow individuals to stay engaged in valued activities. Adjustment of exercise intensity was a strategy frequently used by the men. One participant worked at home and found this useful because he could exercise and work “at his own pace.” This helped him control tiredness. Another man experienced fatigue that made his “brain all fuzzy” and felt a “sort of fatigue in muscles” with physical activity. He took small breaks when he might “sit down and have a cup of tea” to
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recover before he continued with an activity. One man described how he could manage his physical activity if he did things slowly, as doing things quickly “brings it [the fatigue] on really quickly.” Exercising with frequent breaks and at a slower pace or intensity seemed to reduce complex fatigue symptoms for men with MS. This is an important “do” goal that could be incorporated into the practices of health professionals.
losing motivation. A dog helped maintain engagement with walking, and several men implied they would not walk for exercise without a dog. In a prior study, women had described walking either alone or in groups with other human companions (Smith et al., 2011). Dog walking could be a useful intervention to explore, for example, the usefulness of dog-walking groups for men with MS.
Reprioritizing activities. By choosing to walk for exercise, one man explained how he could “control how much energy I was using” compared with other options such as going to the gym. This process of deciding how best to use the “finite energy in the tank” was a common theme and involved the men choosing one activity over another. Another man describes this dilemma: “I can work less if I walk for about an hour . . . It’s all about compromise.” This is an example of another response shift strategy, or reprioritization of activities. Another man had a similar experience with a definite limit of energy available for exercise. He described having only “three blocks of energy in a day” and could tell how much he could expend and how much he would have left over. When this man felt he was nearing his limit, he slowed his cycling speed or got off his bike and walked until he felt better. This strategy allowed him to achieve his “be” goal of continuing to be a cyclist.
Adaptive accessories. Some “do” goals included the use of adaptive accessories, which allowed men to continue with their desired exercise activity. For example, a participant decided to minimize his symptoms while cycling by using cleats. He described the rationale for this strategy,
Altered purpose or perspective: Recalibrating the “be” goal. One participant, a keen bodybuilder and butcher, changed his perspective toward working because of the effect of fatigue and reduced energy levels on his work and exercise. After a period off work, he decided to reenter the workforce as a butcher but with reduced hours. He said before he had MS, “it was important how much you could get done in a space of time; now it’s more like, what you can get done. It doesn’t matter how long it takes.” This change in perspective relates to a third type of response shift described by Carver and Scheier (2000) that operates at the “be” goal level proposed by Rasmussen et al. (2006). In addition to the three response shift behaviors described by Carver and Scheier (2000), we identified several “do” goals that appeared to facilitate ongoing engagement in exercise activities. These approaches included dog walking, the use of adaptive accessories, cooling strategies, active recovery, and exercising alone. We think these strategies might complement the goal readjustment approaches described in previous sections. Dog walking. Several men chose to walk with their dog because it helped them stick to exercise routines. One participant described needing “dog power” when he was
My feet are locked in and they can only go one way, and I’m not having to control it; all I’m having to do is push . . . I don’t have to judge how far the ground is away, so it’s easy. Yeah, there’s less variables that you have to look out for.
This strategy afforded a degree of control for him both on a daily basis and in the longer term. It also appeared to minimize the mental fatigue that often accompanied the intense concentration required to control his legs. For this man, cycling was a lifelong passion and appeared closely related to his self-image. Cooling strategies. Several men described how extremes of temperature, particularly heat, could influence fatigue levels and subsequently limit the amount of exercise they could complete. Most men referred to environmental heat and sunlight as key triggers for fatigue; however, others described how extreme cold also could influence energy levels. One man described how swimming several times a week allowed him to stay cool during exercise. He also described how he enjoyed walking on frosty days because he did not tire as quickly as on warm days. Although heat sensitivity is a well-recognized symptom of MS and several authors have already demonstrated the benefits of cooling strategies (Schwid et al., 2003), and this man offered additional insight into the potential for cooling strategies to increase perceived control over fatigue and exercise: Cycling—you do get hot, and the way to cool down is to drink cold water or go downhill, just have the wind cooling your body down. Or going diving, and just being in a cold environment, you can’t really heat up, so you’re sort of, you’re controlling it; you’re taking steps to control it.
In previous studies, cooling strategies during exercise were also important for women, who described the negative impact of hot and cold extremes on their capacity for exercise (Smith et al., 2011).
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Smith et al. Active recovery. After a busy day in the garden, one participant described a “hazy, out-of-body fatigue feeling” and being unable to function normally for a few days. He found that complete rest after these exhausting periods was not helpful, and if he could motivate himself to go for a swim or do some exercise, he could get through that feeling of fatigue. Another man used the analogy of a “wee [small] generator or dynamo in your body” when after a period of fatigue you just “keep going in little bits at a time and build it back up,” rather than rest. Both these men self-regulated their complex fatigue symptoms through learning and experimenting over time. Not all attempts to prevent fatigue during or after exercise were successful, but recovery was sometimes helped by gentle exercise. One man lost control of his fatigue at times but could regain control by adopting a technique that is promoted in sports science—gentle exercise during recovery from intense exercise (Barnett, 2006). Prolonged rest after an episode of exercise-induced fatigue did not appear to help recovery, and future studies might compare complete rest to gentle exercise as a fatigue recovery strategy in this population. Exercising alone. Several men chose to exercise alone rather than go to a gym or a group exercise setting because they could stop and rest easily or shorten exercise duration without being embarrassed in a public place. Choice of exercise setting enabled the men to self-pace activities, which seemed more important for those whose fatigue resulted in weakness and balance difficulties. Preferred exercise settings differed between men in this study and women in a previous study who appeared to be more comfortable exercising in a group (Smith et al., 2011). However, a small group of men in our study from one geographical region found strength and shared meaning at a yoga class hosted by the Multiple Sclerosis Society. We think this might be an example of a response shift involving altered perspectives in those men, who previously had preferred to exercise alone yet found additional benefits exercising in a group.
Emotional Responses to Fatigue and Exercise Rasmussen et al. (2006) proposed that adjustment of previous “do” goals provokes emotions, or affect. In our study, this adjustment was a gradual process, and often followed a repeated lack of success that resulted in frustration and anger and threatened attainment of the men’s higher “be” goals. Those men who were able to engage in highly valued activities—even if the intensity was less, or if they achieved them through a different route—experienced positive feelings and a sense of control. One man
described a “buzz [a good feeling]” and a sense of control when he performed fewer martial arts moves for a shorter time. Another man loved biking because, he said, “I can travel a hell of a lot further than would be capable on my feet.” He said “that if I hadn’t been passionate about biking or cycling, it would have been a limiting factor.” To reinforce men’s confidence in their ability to readjust “do” goals, health professionals might consider integrating activities that men with MS are passionate about into exercise advice. Conversely, those who are unable to successfully make goal adjustments can disengage from highly valued activities, resulting in negative feelings. This man described feelings of frustration when he was unable to carry out his planned exercise: If I take the dog for a walk, I pick out how far I’m going to go, . . . and some days it’s a cool day and you can go down there and I can walk quite well for 500 meters . . . [but] other days, if you haven’t had a good sleep, then you can walk a 100 meters.
He goes on to say that “some days I think, you know, it’s a waste of time because I’d rather just go and sit on the couch, because after exercise, “you’re back to square one [to the beginning].” Despite this frustration, he was motivated by his love of the outdoors, an illustration of how strong “be” goals are for these men. Frustration, if ongoing, can lead to depression in some people, and Carver and Scheier (2000) point out that “the depression response is most likely to occur when the frustrated goal is deeply connected to the core of the self. Such a goal is not easily abandoned or even scaled back” (p. 1721). Carver and Scheier also suggest that lapsing into depression might be a reflection of slower recalibration of goals. Being aware of this possibility, health professionals might facilitate a faster process by establishing mentors to guide men in the process of recalibrating their goals. The men in this study appeared to intuitively use self-regulation as a survival mechanism. The importance of having goals that were highly valued and related to activities and work prior to diagnosis allowed the men to feel a sense of achievement and optimism despite their losses. Recalibrating “do” goals involved many strategies, decisions, and exercise choices. The ability to recalibrate appeared not only related to the intensity or type of exercise but also to the value the men placed on the activity. All of the men in our study continued engaging in exercise while experiencing complex fatigue, which caused us to question whether a wider group of men with MS disengage with exercise early, following diagnosis, because of some of the barriers we have discussed.
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Discussion Smith et al. (2009, 2011) have linked perceived control to self-efficacy and have proposed that perceived control might influence exercise experiences. Sloan, Gough, and Conner (2010) identified control and autonomy as attributes that facilitated health-promoting activities in men, yet Fraser and Polito (2007) found men with MS might have overall lower levels of self-efficacy than women with MS. In our study, men who were able to stay engaged with exercise demonstrated an ability to readjust goal-orientated behaviors on a continual basis, a process we felt was closely aligned to the goal hierarchy model (Rasmussen et al., 2006). It is possible that this ability to adjust goals is linked to levels of self-efficacy and therefore should be considered by health care professionals and exercise scientists as a potential strategy to help men with MS remain engaged in meaningful exercise. In the last section of this discussion, we suggest practical ways this might be achieved; however, these suggestions are tentative and will require more development and evaluation. Researchers have indicated that for women, feeling supported is a key factor influencing health-seeking behaviors such as exercise (Courtney, 2000). Men are less likely to seek this support, perhaps in part because health care providers offer solutions perceived as having feminine connotations, such as group exercise classes. However, Kasser (2009) suggested some men prefer to exercise in groups, and three men in our study regularly participated in a coed group exercise activity at a local branch of an MS support group. In this group, they found it helpful to talk to others about health topics such as having MS, exercising, and eating healthy foods. It would be useful to know more about how group dynamics influence perceived benefits of group exercise—for example, whether men are more comfortable discussing health issues in a group consisting solely of men. Health care providers might consider talking to men in the context of the passions and activities that shape their identity as men and suggest ways to adjust their “do” goals and achieve their “be” goals, perhaps using the three strategies of goal readjustment proposed by Carver and Scheier (2000) and, trying other approaches such as dog walking, the use of adaptive accessories, cooling off, active recovery, and exercising alone. Men in this study appeared to be passionate about particular types of exercise and activities, whereas women in a previous study tended to show more passion for the environment in which the activities occurred. For example, in a study by Smith et al. (2011), one woman with MS talked about how walking along a particular beachfront that the family had been visiting for years was less exhausting than walking down her street. Researchers
have discussed how important it is for women to be engaged in activities they are passionate about; however, descriptions in one study by Reynolds and Pryor (2003) seemed to indicate that women were able to adapt and find new passions, or “be” goals, to replace previously meaningful pursuits that often were more physically active. To more fully illustrate how well goal readjustment would help men with MS continue exercising, we would need to explore the issue with men who are not currently exercising but possibly considering activity. Courtney (2000) proposed that current health care systems play a key role in constructing gender differences, and that men might perceive a challenge to their masculinity by engaging with these systems. In our descriptions of complex fatigue, we noted that men often used what could be thought of as traditionally masculine metaphors, such as a “punctured tire,” a “lead trench coat,” and “like a hangover.” Metaphors also were used by women in previous studies, but in contrast to the men’s descriptions, fatigue was likened to “menstruation” (Smith et al., 2011). We propose that health care providers might carefully consider their choice of language when offering advice about exercise as one strategy to more fully engage men. Preserving self-identity might encourage men to remain engaged in long-term exercise, which has been shown to deliver health benefits in a wider MS population (Rietberg et al., 2005). Researchers have found that selfidentity is influenced by fatigue and exercise in women with MS (Courtney, 2000; Reynolds & Pryor, 2003; Smith et al., 2011). However, we felt that the men in our study provided more descriptions of how complex fatigue affected aspects of their self-identity, including the kinds of work they did (through employment and around the home), their family roles (drivers, providers), and their exercise activities (mostly sports-related). We think this is an area where goal recalibration or response shift might be a useful way for health care professionals to help men stay engaged in physical activity because this model is very much linked to self-identity through the hierarchy of goals. Although it might be useful for health care professionals to consider goal readjustment strategies when recommending exercise for men with MS, in this study we have only skimmed the surface of how men and women with MS might experience fatigue, exercise, and perceived control over these constructs. We propose to explore these differences within a framework of gender and health construction in future studies. Acknowledgments The authors thank Multiple Sclerosis Otago, the Southland Multiple Sclerosis Society, and the Multiple Sclerosis and Parkinson’s Society of Canterbury for their support of this study.
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Smith et al. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The study was funded by a University of Otago Research Grant.
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Author Biographies Catherine M. Smith, PhD, is a research fellow at the Centre for Health, Activity and Rehabilitation Research, School of Physiotherapy, University of Otago, Dunedin, New Zealand. H. Jane M. Fitzgerald, MSc, is a research assistant at the Centre for Health, Activity and Rehabilitation Research, School of Physiotherapy, University of Otago, Dunedin, New Zealand. Lisa Whitehead, PhD, Fellow of the College of Nurses Aotearoa, is an associate professor at the Centre for Postgraduate Nursing Studies, University of Otago, Christchurch, New Zealand.
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