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ORIGINAL ARTICLES

Confronting the Diagnosis of Multiple Sclerosis: A Qualitative Study of Patient Experiences

Fallahi-Khoshknab, Masoud1; Ghafari, Somayeh2*; Nourozi, Kian3; Mohammadi, Eesa4

Author Information
doi: 10.1097/jnr.0000000000000058
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Abstract

Introduction

Multiple sclerosis (MS) is a chronic progressive degenerative neurological disease that produces demyelization of the central nervous system. MS afflicts over 2.5 million people worldwide (Multiple Sclerosis International Federation, 2013) and 60,000 in Iran. According to the Iran Neurology Society, statistics for people with MS have increased from 51.9 per 100,000 population in 2009 to 73 per 100,000 population in 2011, and the prevalence rate of MS in Iran is 20 times higher than in other countries in the region (Etemadifar & Abtahi, 2012). MS typically has its onset in early adulthood and affects women more than men. Although rarely fatal, MS produces a range of unpleasant and disabling symptoms. The course of MS is idiosyncratic and unpredictable, the exact causes are poorly understood, and there is no known cure (Arnett & Randolph, 2006). Very few patients diagnosed with MS are able to adapt to the disease and successfully live with it (McCabe, McKern, & McDonald, 2004). The complex nature of the disease and the multiple psychoemotional, physical, family, occupational, and social hardships and disabilities are major impediments to accepting the disease, making the diagnosis more difficult for the patient to face. Moreover, it takes longer for the patient to accept the disease. Sometimes, patients never acclimate to their disease. Therefore, consideration of the patient in confronting the disease is necessary (Arnett, Higginson, Voss, Randolph, & Grandey, 2002; Janssens et al., 2003; Kleiboer et al., 2007).

Background

Dennison, Moss-Morris, Silberb, Galea, and Chalder (2010) referred to the fact that, for most patients, a diagnosis of MS is associated with emotional trauma that leads to denial of the disease. The patient often initially does not accept their diagnosis and goes into a state of denial. Fear is a major factor caused by uncertainty regarding the disease, which may eventually have a greater negative impact on the quality life of patients with MS than the disease itself. Kleiboer et al. (2007) and McCabe et al. (2004) both mentioned that anxiety, sadness, and depression are common in patients confronting MS. Although grief is usually transient, depression is more stable and remains longer. Depression is more common among patients with MS compared with healthy people and those with chronic illnesses. Janssens et al. (2003) and Arnett et al. (2002) pointed out that most of the negative reactions exhibited by patients confronting MS persist and lead to failure to accept and cope with the disease. Thus, understanding the negative and positive reactions of patients faced with MS and supporting positive reactions are essential. Considering the complex nature of the disease and the many and varied experiences of patients in dealing with the diagnosis, it is hoped that the results of this study will increase awareness of families, communities, and health professionals regarding the general reactions of patients who are confronted with MS. Their help and support will enable faster and more effective acceptance of the disease by patients. The aim of this study was to elicit the experience of patients faced with an MS diagnosis and to explore its dimensions.

Methods

A qualitative method with conventional content analysis approach was selected. The naturalistic paradigm and qualitative methods are useful in the study of lesser-known areas of study because of their acceptance that reality is context based and of their acceptance of multiple realities (Streubert & Carpenter, 2011).

Participants

The participants in this study included 25 patients (18 women and seven men, aged 20–55 years) who had been experiencing MS for 4–20 years. They were selected using a purposeful sampling method from MS associations in Isfahan and Tehran (Iran) and from neurologists’ clinics. General inclusion criteria, following Holloway and Wheeler (1996), included awareness of the phenomenon under study and willingness and ability to communicate experience (Holloway & Wheeler, 1996). Specific criteria included having an MS diagnosis ≥ 1 year, no hearing or speaking impairments, and no history of other pathological or chronic diseases. Sampling was carried out as broadly as possible to capture the maximum variance in terms of age, gender, education, and duration of MS diagnosis to maximize the transferability of findings.

Data Collection

The data for the study were collected using unstructured interviews from September 2011 to August 2012. After a first interview, a second interview might be scheduled to clear up ambiguities and probe participant experiences as needed. In total, 27 face-to-face interviews with the 25 participants were conducted. Each interview lasted from 45 to 75 minutes. The interviews began with general questions such as: “Would you please explain about when you were first told you had MS?” This question was followed with exploratory questions such as: “Can you give an example to clarify exactly how you felt, so that I can understand your feelings?” and “What happened then?” Participants were encouraged to speak openly and to relate their personal experiences facing MS. The interviews were continued to obtain more complete and in-depth data and stopped when no new information was obtained. In this study, the saturation point was reached at the 24th interview.

Data Analysis

A content analysis method was used to analyze the data in accordance with Graneheim and Lundman (2004). The interviews were audiotaped and then transcribed verbatim. Recordings were compared with the transcription to ensure accuracy. Participants also received copies of their transcripts to review for accuracy. Upon review of the transcripts, participants were given the opportunity to meet again with the researcher to clarify any issues they deemed important. Interpretation was ongoing during this time in line with the underlying purpose of the study. After reviewing the transcriptions several times to obtain a sense of the whole, the first author then extracted units of analysis. The text was divided into condensed meaning units that were abstracted and coded. The codes were then compared based on differences and similarities and sorted into categories and subcategories, which became the manifest content for this study. The tentative categories were discussed by three researchers and revised. Finally, the underlying meaning or latent content of the categories was formulated into themes (Table 1).

TABLE 1
TABLE 1:
Example of Analysis Process

Ethical Considerations

Before data collection, the authors obtained approval from the ethics committee of the University of Social Welfare and Rehabilitation Science. All of the participants were informed about the importance, purposes, and methods of the study and that interviews would be recorded. The participants were further informed that participation was voluntary and that they could refuse to participate or withdraw from the study at any time without being penalized or losing any benefits. Moreover, the participants were reassured about confidentiality and anonymity. Decisions about the time and place of interviews were made mutually. Finally, participants were informed regarding the background of the researchers and about how they intended to achieve their intended research results.

Rigor

In qualitative research, credibility, dependability, and transferability are concepts that have been used to describe various aspects of rigor or trustworthiness (Graneheim & Lundman, 2004). Rigor is the means by which integrity and competence are shown to confirm the legitimacy of the research process. Without rigor, there is a danger that research may become fictional journalism and worthless in terms of contributing to knowledge (Morse, Barrett, Mayan, Olson, & Spiers, 2002). Credibility deals with the focus of research and refers to confidence in how well data and analysis processes address the intended focus (Tobin & Begley, 2004). Another aspect of trustworthiness is dependability. According to Lincoln and Guba (1985), dependability “seeks means for taking into account both factors of instability and factors of phenomenal or design induced changes,” in other words, the degree to which data have changed over time and to which alterations have been made to the decisions of researchers during the analysis process (Lincoln & Guba, 1985). Trustworthiness also addresses the question of transferability, which refers to the extent to which findings may be transferred to other settings or groups. Although an author may provide suggestions about transferability, it is the decision of the reader as to whether particular findings are transferable to another context (Graneheim & Lundman, 2004). Similar to other qualitative approaches, content analysis findings should be as trustworthy as possible, and every study must be evaluated in relation to the procedures that were used to generate the findings (Polit & Beck, 2003). Prolonged involvement in the field from September 2011 to August 2012 helped establish some trust and rapport with participants, providing the opportunity to collect the data (Chiovitti & Piran, 2003; Graneheim & Lundman, 2004; Polit & Beck, 2008; Shenton, 2004). Data credibility was established with two supervisors (assistant professor of nursing) who conducted regular peer checking. After the authors coded and categorized the data independently, the emerged themes were compared. In instances where the authors disagreed, discussions and clarifications continued until a consensus was achieved. About 70% of the transcripts underwent revision to the point at which the study team achieved strong agreement. In addition, a summary of the interviews was returned to the participants for review, the results of which confirmed that the researcher had accurately reflected their ideas (Graneheim & Lundman, 2004).

Results

The 25 participants in this study included 18 women and seven men with a mean age of 32 years. Participants had a mean of 10 years of experience with MS. Two participants held master’s degrees in education, six held bachelor’s degrees, four held associate degrees, eight had a high school diploma, and five had a level of education under the level required for a high school diploma. Seventeen participants were married, and eight were single.

Data analysis elicited from the experiences of participants four main themes and 11 subthemes related to their initial reaction to the diagnosis of MS (Table 2).

TABLE 2
TABLE 2:
Patients’ Experiences of Confronting Multiple Sclerosis

Knowledge Deficit

This theme was derived from three subthemes: information seeking, false perceptions, and fears and worries.

Information seeking

Most patients stated that MS was a completely unfamiliar disease at the time of their diagnosis. Therefore, they sought to understand their disease before taking action.

P5: “When I found out that I had MS I didn’t know it at all. I bought and read some books about MS. I attended MS societies meetings and seminars. I also searched in the Internet.” (man, aged 27 years)

False perceptions

Most participants had false perceptions about MS. On the basis of what they knew, the cause of these misunderstandings or false perceptions was inadequate information and the generally negative public attitudes toward MS. Like the general public, participants initially held incorrect perceptions regarding MS.

P8: “When I knew that I had MS I thought that I was going to die within 6 months. I had a stupid view about the disease. It was just paralysis and death in my mind like other people.” (woman, aged 38 years)

Concealing the Disease

Most participants hid their illness from others because of the lack of awareness and the widespread misperceptions about MS. Participants were disgusted by reactions such as pity or rejection expressed by others.

Disgust at others’ pity and rejection

P15: “I hid my disease from others because they did not have enough information about MS. In addition, if they knew, they might show inappropriate pity or reduce their contact with me. It was frustrating for me.” (man, aged 24 years)

Some participants expressed the belief that the behaviors of others are a source of negative energy that undermines morale. Furthermore, these behaviors cause these outsiders to be more involved with the disease.

P14: “I hid my disease from others because I knew they would undermine my morale. As an example, one of our relatives has MS, when they see him they constantly ask him: are you ok? Do you have any problems? I know that all these words have negative energy.” (woman, aged 33 years)

Fear of job termination or unemployment

Another reason for concealing the disease was fear of job termination or unemployment.

P4: “I might be dismissed from work if my coworkers or my boss knew that I have MS. Actually, it would be a disaster, as I am the midst of highly expensive treatments.” (man, aged 40 years)

P13: “I hid my disease in the workplace. I feared that my boss would fire me if he knew that I had MS. Having MS when you lose your job is a disaster.” (man, aged 36 years)

Religiosity

Religiosity, in its broadest sense, is a comprehensive sociological term used to refer to the numerous aspects of religious activity, dedication, and belief (Bègue, 2002). This theme is composed of two subthemes: faith in God and resort to prayer.

Faith in god

Most of the participants, when they find themselves alone with a refractory disease, trust in God and submit to him to reach peace.

P8: “I trust in God and accept this disease as God’s will and a blessing, so I can accept it and manage it.” (woman, aged 38 years)

P17: “I was crying constantly for a week. I was destroyed. Finally, I gave myself up to God and tried to get closer to Him. I knew it would be better for me and nobody could help me but Him.” (woman, aged 27 years)

P1: “Being diagnosed with MS caused me to become closer to God. Therefore I know the disease as God’s grace. Since I’ve been sick, I have surrendered completely to God, and I can feel the presence of God every moment and everywhere.” (man, aged 39 years)

Resort to prayer

In this study, reading and listening to prayer were mentioned by participants as an effective factor in gaining peace and calm and accepting the disease

P22: “I read prayers, I read Ziarat Ashura, I listen to Komeil prayers on the TV. Through these actions I am able to manage my disease during difficult times.” (woman, aged 45 years)

Emotional Reactions

The initial reaction to being diagnosed with MS is unique to each person. Whatever he or she is experiencing, whether it is shock, fear, denial, anxiety, anger, or some combination of all of these, the reaction should be considered “normal.” Furthermore, patients and their caregivers may expect to reexperience some variation of these experiences whenever MS brings new symptoms and challenges into their life (Janssens et al., 2003).

P6: “When I found out that my disease is MS, I was shocked. I walked for several hours on the streets without purpose or destination.” (man, aged 34 years)

P14: “When the doctor told me: ‘Unfortunately you are suffering from multiple sclerosis.’ I took the MRI paper from him angrily and told him ‘You are wrong.’ I didn’t let anyone talk to me about the disease. For a few weeks I denied everything.” (woman, aged 33 years)

Deny

For some participants, stress was so severe at the time of diagnosis that it caused them to deny that it had happened.

P21: “After the diagnosis of MS, I went to several doctors because I didn’t believe that I had MS and, at that time, I vigorously denied my disease.” (man, aged 32 years)

Anger

Anger is among the strategies used by most patients to pacify themselves. Some participants blame themselves for their illness, whereas others feel anger toward others.

P14: “I believed that I was guilty for being diseased, because I had a nervous personality before being ill. I hated myself and I was full of anger. I gradually came to accept the disease.” (woman, aged 33 years)

P21: “At first, I was constantly shouting and insulting. I even told my mother that I hated her and that she should not come to my room.” (man, aged 32 years)

Fear and anxiety

Most patients experienced initial fear and anxiety about being wheelchair bound, about paralysis, and about experiencing an early death because of their lack of initial information about MS.

P23: “I said, what if my hands and feet become paralyzed? What if I wake up in the morning and am blind? I was so afraid and apprehensive because I had heard these things about MS. My ignorance and that of my family made the situation worse.” (woman, aged 34 years)

P16: “My fear and anxiety for the future was doubled due to knowing nothing about the disease.” (woman, aged 35 years)

Consternation and confusion

Participants who mentioned this factor expressed feeling dismayed upon hearing their diagnosis.

P4: “When the doctor told me that I had MS, I felt my heart in my throat. I could not even cry or laugh. I was shocked. It seemed that I was connected to a 200v a/c outlet…as if I was completely dry.” (man, aged 40 years)

In this study, some participants expressed being confused from the onset of symptoms to diagnosis, with the confusion continuing even after the diagnosis.

P7: “When I heard the name of the disease I was confused because it’s somehow a new disease and has various medications and alternatives.” (man, aged 48 years)

Being demoralized

Patients expressed experiencing a sense of hopelessness and ruin in facing the disease.

  • (1) Feelings of despair and destruction

P16: “When I found out that I had MS, I was crushed. Oh my God! What will happen? Everything seemed at an end for me. For a few months, I had no hope for survival.” (woman, aged 42 years)

  • (2) Feelings of depression

In this study, depression was the first reaction of most participants to MS. Furthermore, some symptoms of depression were still apparent in some, even many, years after their initial diagnosis.

P22: “I cried every day in private and confined myself to the house. I feel the same now too. When I think of my disease, my tears fall. I’m always in a bad mood and cry all the time. I prefer to be alone.” (woman, aged 45 years)

Discussion

The experiences of participants reveal the primary dimensions of being confronted with MS. These dimensions include knowledge deficit, concealing the disease, religiosity, and emotional reactions. Study findings indicate that the process of care and treatment planning for patients with MS should be handled differently than for other patients because of the wide diversity in patient perceptions toward life with MS. This planning should work to reinforce the positive reactions of patients and eliminate the negative reactions. The experiences of most participants in this study indicate that patients know little about MS and thus seek to research the disease. Sometimes, this lack of awareness caused misunderstanding and fear in participants. A study by McCabe et al. found that general knowledge of MS among patients at diagnosis is significantly less than general knowledge of other chronic diseases such as renal failure, diabetes, and rheumatoid arthritis. Therefore, the reaction of patients at the time of MS diagnosis is significantly affected by inadequate disease information. Dennison, Moss-Morris, and Chalder (2009) noted that patients with no information about MS at the time of diagnosis tended to be more confused and thus attempted to obtain information about the disease in various ways such as reading relevant books and magazines, attending conferences and seminars, asking questions from health professionals, and doing online information searches. The false perceptions about MS among participants in this study were rooted in the general lack of public awareness about this disease. Patients said that hearing the name MS immediately evoked images of wheelchairs, disability, death, and blindness. This phenomenon reflects inadequate knowledge about MS and its widespread reputation as a terrible disease. It should be noted that public ignorance about MS has not been identified in studies conducted outside Iran. This may be because of different levels of information about MS and differences in perspective on the disease in different communities (Ghafari et al., 2009; Yousefi, Shaghaghi, Dehestani, & Barghi Irani, 2012). Therefore, based on this finding, sufficient public education about MS appears to be necessary. Most participants reported experiencing severe fear and worry because of lack of sufficient information about the disease. They assumed that MS would lead inevitably to blindness, wheelchair dependence, and disability. Boeije and Janssens noted that most patients with MS experienced severe fear and worry of adverse consequences such as wheelchair dependence; death; incontinency; and losses of vision, hearing, and speech. The fears and concerns of patients were decreased by increasing their knowledge about MS (Boeije & Janssens, 2004). Therefore, caregivers providing information to patients about the potentially adverse consequences of the disease is very important. Raising the awareness of patients about MS and its consequences will help these patients cope with the disease better and faster (Boeije & Janssens, 2004). In addition, many of the participants in this study said that, after being informed of their condition, they preferred to hide their disease from others because of the notoriety of MS in the community and their own unwillingness to face others’ expressions of pity (Skerrett & Moss-Morris, 2006). Hosseini, Sharif, Ahmadi, and Zare (2010) concluded that patients with epilepsy concealed their disease from others as a disease-coping strategy. On the basis of the literature reviewed for this study, this phenomenon is less prevalent in other countries (Grouios, 2006; McNulty, Livneh, & Wilson, 2004; Seze, Borgel, & Brudon, 2012). Thus, it seems that inadequate information and incorrect public perceptions regarding MS in Iran are attributable partly to insufficient information from the media and healthcare system and partly to cultural factors. Similar to many other studies on this topic (Ebadi, Ahmadi, Ghanei, & Kazemnejad, 2009; Ismail, Wright, Rhodes, Small, & Jacoby, 2005; McCabe et al., 2004), religiosity was the major reason for patient acceptance of this chronic disease. In this study, a patient’s religious faith was beneficial in that it encouraged acceptance of and coexistence with the disease. Various researchers have suggested an association between spirituality and better adjustment to illness. This is possibly because of the sense of coherence and meaning provided by religion, which define the role of the individual in the universe and purpose of life and help individuals to develop the courage to endure suffering (George, Larson, Koenig, & McCullough, 2000). Religiosity provides an avenue to viewing the illness experience differently. Soundy et al. (2012) studied the phenomenon of hope in 11 patients with MS and found that patients who actively used their faith gained a sense of hope through seeing the purpose and benefits of their disease. Considering the fact that most of the Iranian population (about 98%) is Muslim and that religious culture dominates daily life, religious beliefs play an important role in the daily life of most individuals, especially during times of crisis (Hassankhani et al., 2010). More than 80% of related studies in Iran have established the importance of religion in providing mental and physical health, especially in terms of reducing perceptions of lack of control over chronic diseases (Choumanova, Wanat, Barrett, & Koopman, 2006). Kalb (2007) noted that acceptance of disease was much easier for patients with MS who felt the disease was God’s will and who put their faith in Him. Similar to a study by Farsi, Dehghan Nayeri, and Negarandeh (2010), participants in this study expressed emotions including anger, denial, and consternation in the face of the disease to attain a sense of self-peace. Lazarus (1991) wrote that emotion is part of the coping process and reflects the weight that a person gives to personal experience. Emotions are reactions to certain situations in one’s daily life that are considered as part of a person’s long-term attempts to survive and to achieve certain goals. Although denial is used as an adaptive reaction in times of crisis, denial may intervene to take a conscious decision for treatment by patient. In addition, individuals who deny their disease will experience feelings of failure and guilt as their disease progresses. Bishop (2006) refers to the fact that many patients with MS deny their condition and being affected by any disability. In these circumstances, patients require support from their family and educational support from healthcare professionals. Anger and pessimism directed either inward or at family members were expressed by some of the participants in this study. In in-depth interviews conducted with patients with MS by Power (1985), the experiences of participants indicated that anger was their main reaction to their disease diagnosis. Some patients have reported experiencing a severe feeling of anger toward themselves and their family for a significant period after their diagnosis. Whereas grief represents a person’s feelings after a loss or crisis, mourning focuses more on the social and cultural expression of grief. Previous research has shown that culture has a significant impact on the grief process (Winegard, Reynolds, Baumeister, Winegard, & Maner, 2014). In this study, many participants were unwilling to display negative emotions because of fear of eliciting negative perceptions from those around them. Iranian culture frowns upon public displays of emotion, especially negative emotions such as grief (Ghaffari-Nejad, Ahmadi-Mousavi, Gandomkar, & Reihani-Kermani, 2007; Rosenblatt, 2013). In this case, it is important to remember that a lack of demonstrative emotion—crying, for example—does not imply a lack of grief. Other cultures, however, are more accepting of public displays of grief. For example, African-American culture is more accepting of public emotional expression. This is also true of many Middle-Eastern cultures where people are permitted and even encouraged to express their emotional pain. It is important to remember that cultural factors only influence what is deemed to be acceptable expressions of grief. Therefore, in cultures where negative emotional expression is discouraged, the bereaved will often experience their pain through conversion of their emotional distress into physical complaints. This is clearly seen in some Asian cultures that have few words to describe emotions and tend to describe sadness or depression in terms of physical symptoms (Rosenblatt, 2013; Winegard et al., 2014). Physical disorders impair the functional abilities of patients, thereby creating a frustrating situation that leads to loss of confidence and hope. In this study, some participants experienced feelings of hopelessness and depression after disease diagnosis. After diagnosis, participants reported thinking constantly about the end of life, death, and handling their new life with a disability. At this stage, patients need to know themselves and their abilities. Those who experience disappointment and see everything crumbling into decay and ruin may choose to quit all their previous activities and withdraw into grief. This is normal as long as the patient passes through this stage quickly (Janssens et al., 2003). In addition, Kroencke, Denney, and Lynch (2001) highlighted in their review of related studies that depression was the most prevalent reaction to a diagnosis of MS. Other studies have also indicated that depression in patients with MS is more severe than in those with other diseases and physical disabilities (Arnett & Randolph, 2006). A limitation of this study was that we assessed the experiences of the patient only. We recommend that future studies also examine the experiences of families in confronting the diagnosis of MS in a family member. Future research should create a holistic picture of the full spectrum of opinions from the perspectives of the patient, family members, society, and health professionals that shape the reactions of patients to a diagnosis of MS.

Conclusions

This study highlights several key reactions among participants to their MS diagnosis, religiosity, and information seeking. In addition, prolonged and severe emotional reactions, disease concealment, and false perceptions suggest that psychosocial maladjustment and nonacceptance of the disease are key challenges for patients with MS to successfully treat and coexist with their disease. Therefore, another study to assess how the opinions of patients, family members, society, and health professionals foster or exacerbate negative reactions in patients with MS is necessary. Increased awareness of reactions in confronting the diagnosis of MS may help nurses and families recognize the needs of patients with MS and encourage positive reactions. It is hoped that this study will draw attention to the paucity of good quality evidence, improve the quality of future research, and highlight areas in which future studies may be usefully directed. Finally, we hope that these steps will lead to improved patient support from families and health professionals to provide faster and better ways of coping with MS and effectively alleviate the problems, limitations, and stresses in patients’ daily lives.

Implications for Practice

This study offers insights to nurses and other healthcare experts regarding how to better help patients with MS confront their disease and improve their quality of life after diagnosis. In addition, the findings create a framework for developing nursing care procedures; planning education on psychoemotional and behavioral skills; and establishing counseling and support programs that take into consideration the religious, ideological, and cultural backgrounds of patients.

Acknowledgments

We sincerely appreciate all participants who cooperated with us in this study. We thank the University of Social Welfare and Rehabilitation and MS Society of Tehran and Isfahan (Iran) for their support.

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Keywords:

diagnosis of multiple sclerosis; confronting; lived experiences; content analysis

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