THE LIVED EXPERIENCE OF FATIGUE AND ADAPTATION1
The Lived Experience of Fatigue and Adaptation Among Persons with Multiple Sclerosis
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THE LIVED EXPERIENCE OF FATIGUE AND ADAPTATION1
Abstract
Multiple Sclerosis (MS) is a chronic autoimmune disease of the central nervous system that causes many problematic symptoms. Treatment focuses on reducing disease progression, treating exacerbations and managing symptoms. Fatigue is the most common symptom experienced. MS fatigue is widespread, complex, poorly understood and difficult to treat but can have a profound impact on every aspect of a patient’s life. To add to the research on the subjective experience of MS fatigue this paper proposes a study to describe the lived experience of MS fatigue and how those with MS adapt. A qualitative approach that is a descriptive phenomenological design will be used in this study. The steps of bracketing, intuiting, analyzing and describing will be done to provide a rich understanding of the phenomena. The setting will be a large neurology clinic on the South Side of Milwaukee. Maximum variation sampling will be used to choose participants. Semi-structured, in-depth interviews by nurse researchers will be completed. Reflexive journaling, careful listening and observation, prolonged engagement, and audio recording of interviews will be done to ensure trustworthiness. Data will be analyzed utilizing Colaizzi’s method as described in Polit and Beck (2012). A deeper understanding of the individual’s complex experience of fatigue will bring us one step closer to overcoming this devastating symptom.
THE LIVED EXPERIENCE OF FATIGUE AND ADAPTATION1
The Lived Experience of Fatigue and Adaptation Among Persons with Multiple Sclerosis
Multiple Sclerosis (MS) is a chronic debilitating neurological disease that affects 350,000-400,000 people in the United States, with 10,000 new cases diagnosed each year (Rumrill, 2009; Shah, 2009). Most people are diagnosed with MS between the ages of 20 and 40, with women being affected two to three times more than men (Rumrill, 2009). MS is an autoimmune disease of the central nervous system that causes demyelination of the nerve fibers. This demyelination eventually causes scarring which interrupts the nerve impulses traveling to and from the central nervous system, causing the symptoms of MS.
Some of the many symptoms of MS can include fatigue, paresthesias, ataxia, bowel/bladder problems, spasticity, vision problems, dizziness and weakness. Symptoms vary from person to person and within an individual on a day to day basis. There is no cure for MS, and treatment focuses on reducing disease progression, treating exacerbations, and managing symptoms. Fatigue is the most common symptom in people with MS and is often reported to be the most disabling symptom (Krupp, Serafin, & Christodoulou, 2010; Lee, Newell, Ziegler, & Topping, 2008; Rumrill, 2009; Shah, 2009). It occurs in 76% to 92% of MS patients, with some estimates as high as 96% of MS patients(Phelan, 2009; Shah, 2009).
MS fatigue can interfere with home life and social activities(Phelan, 2009; Shah, 2009). Fatigue makes it difficult to function on a daily basis and to plan social outings. It can cause problems with employment and is reported to be a major barrier to employment, causing decreased socio-economic status (Johnson & Fraser, 2005; Krupp et al., 2010; Phelan, 2009; Shah, 2009). Many people with MS fatigue need to nap during the day or take frequent rest breaks. This is not easy to accommodate in the work setting. Lastly MS fatigue has been shown to have an adverse affect on quality of life (Krupp et al., 2010; Phelan, 2009; Shah, 2009; Smith & Hale, 2007). It can cause cognitive problems, and decrease the ability of the MS patient to shoulder their responsibilities. A systematic review by Lee et al. (2008) found there is a positive relationship between fatigue and symptoms of pain, depression and sleep disturbances.
Current literature on MS fatigue points to the need for a better understanding of its pathophysiology and its treatment and management strategies (Krupp et al., 2010; Lee et al., 2008; Shah, 2009; Smith & Hale, 2007). The perception of MS fatigue is unique and subjective to the individual; this type of insight is gained from qualitative studies. Qualitative studies provide a deeper understanding of the subjective experience of MS fatigue. Smith and Hale (2007) propose that this understanding would improve the validity of quantitative outcome measurements of fatigue thus helping “…to overcome the difficulties encountered in establishing the efficacy and effectiveness of pharmacological and non-pharmacological interventions for this condition” (p. 50).
MS fatigue is widespread, complex, poorly understood and difficult to treat but can have a profound impact on every aspect of a patient’s life. To add to the research on the subjective experience of MS fatigue this paper proposes a study. The purpose of this study is to describe the lived experience of MS fatigue and how those with MS fatigue adapt. The data gathered will contribute to the knowledge and understanding of people living with MS fatigue. The patient’s perception of MS has been found to play a role in how they will adjust to their diagnosis (Phelan, 2009). With a better understanding of this perception nurses can forge deeper and more meaningful relationships with their patients and possibly provide more appropriate interventions to help them adapt.
Research Questions
- What is it like to live with MS fatigue?
- What is the impact of MS fatigue on the life of those diagnosed with MS?
- What is the effect of MS fatigue on the activities of people with MS?
- How do people with MS adapt to the life altering concept of MS fatigue?
- What strategies do people with MS use to manage their fatigue?
Theoretical Framework
This will be a qualitative study and no theoretical or conceptual framework is needed as the research design is descriptive phenomenology. See the design section for further information.
Definitions
Ms fatigue is subjective and difficult to understand. There are various definitions in the literature and it has sometimes been described as lassitude. In this study the following definition will be used: “Fatigue in MS is defined as an abnormal sense of tiredness or lack of energy, out of proportion to the degree of effort or level of disability that significantly interferes with routine physical or intellectual functioning” (Phelan, 2009, p. 7).
For the purpose of this study all of the participants must have clinically definite MS to participate. Clinically definite MS is defined by Poser et al., (2004) as “two attacks and clinical evidence of two separate lesions” or “two attacks; clinical evidence of one lesion and paraclinical evidence of another, separate lesion” (p. 229). “The two attacks must involve different parts of the CNS, must be separated by a period of at least one month, and must each last a minimum of 24 hours” (Poser et al., 2004, p. 229).
Ms attacks are also called exacerbations, flairs, and relapses. “Exacerbations have been typically defined as episodes of focal neurological disturbance lasting more than 24 h, without an alternate explanation, and with a preceding period of clinical stability lasting at least 30 days” (Ontaneda & Rae-Grant, 2009, p. 265).
Assumptions
Assumptions are based on the constructivist paradigm and inductively from my own experience. The first assumption is “Reality is multiple and subjective, mentally constructed by individuals; simultaneous shaping, not cause and effect” (Polit & Beck, 2012, p. 13). The perceptions of MS fatigue and how people with MS adapt is very subjective and their reality in its context is individualized. The second assumption “The inquirer interacts with those being researched; findings are the creation of the interactive process” (Polit & Beck, 2012, p. 13). This relates to the study in that the researcher and informant work together. The researcher must be able to keep the interview on track while not influencing the informants’ answers. The third assumption is that human beings have an awareness of their experiences that makes them significant. The participants in the study will have to remember and articulate their experiences regarding MS fatigue. The last assumption is that human beings are adaptive. I am choosing to study how the participants will adapt to MS fatigue, because I am assuming they will attempt to adapt in some way.
Research Literature Review
A research literature review was conducted to identify current knowledge about the lived experience of MS fatigue. The search included the use of three electronic databases; CINAHL from EBSCO, Medline from Ovid and PubMed from the National Institutes of Health. All databases were accessed from Marquette University Raynor Memorial Library. Only English language, research articles were reviewed. Keywords included: multiple sclerosis, fatigue, qualitative research, lived experience, experience, perception, cope, coping and adapting. Original time frame for the search was 2002 to the present, but this did not produce a sufficient number of studies. After reviewing the reference lists from these studies the time frame was changed to 1994 to the present. This provided nine articles for review.
The first article by Flesner, Ek and Soderhamn, (2003) is a phenomenological study conducted to describe the lived experience of MS-related fatigue by those diagnosed with MS. Interviews with nine individuals were conducted using open-ended questions such as “Please tell me about your experience of fatigue” (Flensner, Ek, & Soderhamn, 2003, p. 708). MS-related fatigue was described as “time-consuming and all absorbing” involving the whole body (Flensner et al., 2003, p. 713). It was found that individuals with MS think about fatigue often, have perceptions of lowered self-worth, helplessness, and shame. They also experience feeling completely drained and limited in their daily life. Lastly this study by Flesner et al., (2003) found that individuals with MS also change the way they view life and adjust their goals to find a balance in living with MS.
Olsson, Lexell, and Soderberg, (2005) found some of the same perceptions in their qualitative study using a phenomenological hermeneutic method. Interviews conducted with 10 women who experience MS fatigue produced two main themes of “Experiencing the body as a barrier” and “Experiencing a different absence” (Olsson et al., 2005, p. 10). Under these themes MS fatigue was described as encompassing the whole body, which ruled their lives and caused disappointment with not being able to do what they used to be able to do. MS fatigue for these women was ever present, invisible and caused them to feel absent while physically present in their activities.
Moriya and Katsumi, (2010) conducted a qualitative, exploratory and descriptive study using semi-structured interviews with nine people who have MS. Seven concepts emerged showing that MS fatigue affects the lifestyle of those with MS and decreased their ability to be themselves. To cope with MS fatigue these participants rested, planned their activities and devised unique strategies for coping. Many times however these coping strategies were found to help only minimally and participants have come to accept fatigue as a part of their lives. Lastly the participants in this study by Moriya and Katsumi, (2010) felt that MS fatigue was poorly understood by health professionals and their family and friends. This poor understanding of MS fatigue lead to feelings of isolation for some of the participants.
Courts, Buchanan, and Werstlein, (2004) conducted a focus group study with eight women and four men to “investigate the lived experiences of people with MS and examine their needs from their perspectives” (p. 42). Four themes emerged from this study. The first theme, “nobody’s listening”, pertained to the participants feeling unheard by medical professionals in regards to their symptoms (Courts et al., 2004, p. 43). The second theme, “symptom devastation”, reflected how the participants felt MS has dramatically altered their lives (Courts et al., 2004, p. 44). The third theme, “picking and choosing”, meant that participants have to carefully plan their activities. The fourth theme, “fight your own fight”, described the need of the participants to be their own advocate (Courts et al., 2004, p. 45). In regards to fatigue specifically it was stated that “Fatigue led them to refocus their priorities, plan their activities, and choose carefully what they wanted to do” (Courts et al., 2004, p. 46).
A descriptive survey study of 120 people with MS was completed by Mollaoglu and Ustun, (2009) to describe fatigue and the factors that affect fatigue. This study determined that fatigue is a significant symptom that was experienced by all participants. Many factors that affect fatigue were found. “About 90% of the patients reported that their level of fatigue increased by having another MS attack, feverish illness, hot/humid weather, taking a hot bath/shower, increase in daily activity, and experiencing stressful situations” (Mollaoglu & Ustun, 2009, p. 1234). Many of these factors that increase fatigue could occur on a daily basis, thus it was determined that fatigue has a significant effect on the lives of those with MS. (Mollaoglu & Ustun, 2009).
Continuing with the sentiment that fatigue has a significant impact on the daily lives of those with MS is a study by Stuifbergen & Rogers, (1997). This qualitative study of 13 people provides a description of the experience of fatigue, including factors determined by the participants that precede fatigue and strategies to manage their fatigue. Fatigue is described as being unrelenting, even after rest, causing lifestyle changes. It is increased by physical, emotional and mental stress and can stop a person in their tracks. Participants reported preceding factors including physical exertion, poor nutrition, lack of rest, heat/humidity, and stress. Strategies to manage fatigue in this study by Stuifbergen & Rogers, (1997) include decreasing activities, making choices, rest, medications, and staying cool.
The previous studies have all shown that MS fatigue impacts many aspects in the life of a person living with MS. This study by Blaney and Lowe-Strong, (2009) looks specifically at the relationship between fatigue and communication. A phenomenological approach with in-depth interviews of 10 participants revealed three themes. The first theme, “revealing communication changes”, speaks to how fatigue causes communication symptoms to appear or become worse. (Blaney & Lowe-Strong, 2009, p. 174). Problems with slurred speech and dysarthria become more apparent with fatigue. The second theme, “concealing and coping”, discusses how participants use covert and overt coping strategies to deal with communication problems caused by fatigue (Blaney & Lowe-Strong, 2009, p. 174). Covert methods include written notes and planning ahead, while overt methods included taking rest breaks and using humor The third theme, “barriers to participation”, is reported by the participants to be related to the many symptoms of MS, not just fatigue.
A qualitative descriptive study by Barton, Magilvy, and Quinn, (1994) focuses on how veterans with MS describe health, everyday life and the meaning of their illness. Three major domains were found (a) trajectory of illness, (b) social support, (c) strategies used in coping with MS. Under the domain of trajectory of illness is the category of symptoms, which discusses fatigue. Fatigue is perceived by the participants to be a “major problem” and “a prime cause of lost time in accomplishing daily tasks” (Barton et al., 1994, p. 90). Participants felt fatigue had a significant impact on interpersonal relationships, and caused them to be unable to work. One participant reported that fatigue ruined his marriage. The consensus from the participants is that “fatigue was one of the most discouraging symptoms of this chronic illness” (Barton et al., 1994, p. 90).
The last qualitative study by Lohne, Aasgaard, Caspari, and Naden, (2010) was conducted to study how persons with MS experience dignity. One of the three main themes found was being “invisibly captured in fatigue” (Lohne et al., 2010, p. 304). Since fatigue is not visible to others the participants felt captured and overwhelmed by fatigue, but did not want to let it stop them. “The narratives highlight a lonely battle of fighting both their fatigue, which was rooted in the illness, as well as a hopeless battle fighting for help with their fatigue” (Lohne et al., 2010, p. 308). Fighting MS and MS fatigue left the participants feeling alone.
Critique of the Literature
The nine articles selected for review are all qualitative studies with varying designs. The chosen designs allow for a rich description by the participants of their experiences about the phenomenona in the study. This fits well with the descriptive phenomenological design in this proposed study. A major finding from the research review is that MS fatigue has caused significant changes to the daily lives of the participants (Barton et al., 1994; Courts et al., 2004; Flensner et al., 2003; Mollaoglu & Ustun, 2009; Moriya & Katsumi, 2010; Olsson et al., 2005). Participants have had to change life goals and plan activities in advance (Blaney & Lowe-Strong, 2009; Courts et al., 2004; Stuifbergen & Rogers, 1997). Another finding consistent in many of the studies is that MS fatigue totally encompasses the participant (Flensner et al., 2003; Lohne et al., 2010; Olsson et al., 2005; Stuifbergen & Rogers, 1997). A couple studies found participants feeling that MS fatigue is poorly understood, especially by health professionals and that MS fatigue caused feelings of isolation (Courts et al., 2004; Lohne et al., 2010; Moriya & Katsumi, 2010). The study that I am proposing will add to the research on MS fatigue and fill in an existing gap on how those with MS adapt to fatigue.
Using the SORT criteria from Ebell et al., (2004) the individual studies would be rated a level 2; in that they are of limited quality, but patient oriented. All the studies have small sample sizes and some of the studies were done on a very specific sample of the population. With such a narrow sample generalizability is decreased. Using the SORT criteria the body of evidence is given a B strength recommendation (Ebell et al., 2004). According to Ebell et al., a B recommendation is “based on inconsistent or limited-quality patient-oriented evidence” (2004, p. 551).
Methodology
Human Subjects Protection
Approval from the Institutional Review Board of Aurora St. Lukes Medical Center will be obtained prior to the study. Informed consent from all participants will be obtained. The participants will be told they are free to withdraw at any time. Confidentiality of all participants will be maintained throughout the study.
Design
A qualitative approach that is a descriptive phenomenological design will be used in this study. Phenomenology is rooted in philosophy and was developed by Husserl and Heidegger and is focused on the meaning of the individual’s lived experience (Polit & Beck, 2012). Subjective experiences are unique to each individual and are perceived differently by each person. Phenomenology strives to gain an understanding of a life experience and what it means to the individual having the experience. This insight is gained mainly from in-depth conversations with those experiencing the phenomenon of interest. Researchers and informants work together, but researchers must not bias the informant with leading questions (Polit & Beck, 2012). A variant of phenomenology is descriptive phenomenology, which will be used for this study.