Journal of Neuroscience Nursing:
Multiple Sclerosis Patients Talking with Healthcare Providers About Emotions
White, Mark; White, Carmel Parker; Russell, Candyce S.
Questions or comments about this article may be directed to Carmel Parker White, PhD, at firstname.lastname@example.org. She is an assistant professor in the Department of Child Development and Family Relations at East Carolina University, Greenville, NC.
Mark White, PhD, is an associate professor in the Department of Child Development and Family Relations at East Carolina University, Greenville, NC.
Candyce S. Russell, PhD, is Vera Mowery McAninch Professor in the School of Family Studies and Human Services at Kansas State University, Manhattan, KS.
The purpose of this study was to consider multiple sclerosis (MS) patients' experiences of talking with healthcare professionals about emotions and their emotional well‐being both at the time of diagnosis and while they are living with the illness. Relationships between talking about emotions and positive outcomes were examined. The 145 respondents completed a paper‐and‐pencil survey, an Internet survey, or a telephone interview. Forty‐four percent of respondents indicated that a healthcare provider had discussed their emotional well‐being at the time of their diagnosis. Fifty‐six percent of respondents reported that their healthcare professional had talked with them about their fears, sadness, and anger related to living with their illness. For those respondents who wanted to talk with their healthcare professional, doing so appeared to be associated with several positive outcomes. The small number (N = 22) of respondents who did not want to talk with a healthcare professional about emotions were also doing well on several measures. Nurses can help MS patients deal with their uncertainty and emotional challenges by being willing to inquire about emotions and emotional well‐being.
The process of receiving an unfavorable health diagnosis is likely to be emotionally difficult for almost any patient (Jan & Girvin, 2002; Salander, 2002; Schofield et al., 2001; Shields, 1998). While delivering the diagnosis of multiple sclerosis (MS), “when, how and what doctors tell patients about their illnesses can have profound effects on their lives” (Caplan, 1996a, p. 183). Addressing the issue of patients' memories of receiving their diagnosis of MS, Joy and Johnston (2001) noted that “it is a pivotal, life‐altering moment that remains vividly etched in their memories” (p. 179). Research on communication between healthcare professionals and MS patients has illustrated that communication can affect a patient's satisfaction with their health care during a particular encounter as well as the patient's long‐term overall well‐being (Kralik, Brown, & Koch, 2001; Levinson, 1999; Thorne, Con, McGuinness, McPherson, & Harris, 2004). Interactions with healthcare professionals may be the logical starting place to support patients and families in dealing with their emotions and providing them guidance on how to care emotionally for themselves (Hunt, Jordan, & Irwin, 1989).
One shortcoming of the research on receiving a health diagnosis is that patients have not been explicitly asked about the discussions they have had with healthcare professionals concerning their emotions and emotional well‐being. This study seeks to understand from the perspective of persons with MS how a healthcare professional addressed their emotional well‐being at the time of diagnosis and whether they felt they could talk about their fears, sadness, and anger about having MS. It is unclear whether discussions between healthcare professionals and patients about emotional well‐being are related to positive adjustment in patients with MS. Thus the present investigation sought to examine the relationship between patients' self‐reports of healthcare professionals' talking with them about emotional well‐being—both at the time of diagnosis and while they were living with the illness—and various positive outcomes.
MS is a chronic and progressive neurological illness, often with unpredictable and intermittent symptoms, that affects many in the prime of their personal and professional lives. At the time of an MS diagnosis, it seems crucial for health professionals to be attuned to patients' emotional well‐being and make appropriate referrals for support. In addition to the fact that the patient has just received a life‐altering and potentially debilitating diagnosis, several other reasons that healthcare professionals should be aware of patients' emotions exist. First, the patient may have spent months, or even years, living with confusing neurological symptoms that are frequently diffuse and may overlap with symptoms of other illnesses. During this time, patients may have received numerous tests to determine the cause of their symptoms and spent considerable time going from physician to physician trying to determine the underlying cause (Carter, McKenna, MacLeod, & Green, 1998; Thorne et al., 2004). Minden and Schiffer (1991) indicated that the average length of time from first symptom to diagnosis was 4 years. Thorne and colleagues (2004) observed that “encounters with health care professionals frequently revolve around the uncertainties and ambiguities that characterize the path to diagnosis” of MS (p. 6). How the medical community responds to patients' uncertainty and ambiguities will likely affect both the healthcare alliance and the emotional well‐being of the patient.
How the medical community responds to patients' uncertainty and ambiguities will likely affect both the healthcare alliance and the emotional well‐being of the patient.
A second reason that healthcare professionals should attend to patients' emotions is that a strong comorbidity with mental health problems exists for MS patients, specifically depression and anxiety (Gilchrist & Creed, 1994; Lynch, Kroencke, & Denney, 2001; Minden & Schiffer, 1990, 1991; Mohr & Goodkin, 1999; Schubert & Foliart, 1993). Minden and Schiffer (1991) reported that depressive episodes can precede the onset of other MS symptoms and may be considered an early sign of the demyelinization that occurs during an MS exacerbation.
A third reason to inquire about emotions relates to patients' stress and anxiety. Although the role that stress plays in the disease process of multiple sclerosis is still under debate (Mohr, Hart, Julian, Cox, & Pelletier, 2004), some believe that the diagnosis itself may cause so much stress and anxiety that some patients should not be told the complete truth about their diagnosis, especially in the early stages of the disease (Burnfield, 1984; Caplan, 1996b; Elian & Dean, 1985). Withholding a diagnosis from a patient does not seem prudent even if the rationale is to avoid causing stress. At the time of diagnosis, however, healthcare professionals can reduce stress by providing pertinent information, answering patients' questions about living with MS, and talking to patients about their emotional well‐being.
After the diagnosis, fear and uncertainty about the future and the possible disease trajectory can overwhelm patients at any stage of the illness (Kroencke, Denney, & Lynch, 2001; Thorne et al., 2004). According to Thorne and colleagues, fear was expressed by many respondents, and these researchers referred to “fear points” that occurred while someone was living with MS. Uncertainty was defined by Loveys and Klaich (1991) as a process of waiting and wondering. Uncertainty has also been conceptualized as the absence of a cognitive framework for understanding and predicting outcome (Weitz, 1989) and has been associated with depression in persons with MS (Lynch et al., 2001).
Devins and Seland's (1987) review of the literature on depression and emotional stress identified two situations for MS patients that were related to increased emotional distress. The first was functional loss that was caused by increased physical disabilities. This functional loss could also include fatigue, which can have a great impact on daily life (MacAllister & Krupp, 2005). Second, patients reported distress from disease activity caused by exacerbation or progression of MS symptoms. Patients experiencing an exacerbation reported four times the emotional distress levels of those of patients in remission (Dalos, Rabins, Brooks, & O'Donnell, 1983). Thus, an exacerbation that brings new symptoms, symptoms that do not resolve, the necessity of starting or changing treatment, and the unpredictability of MS could all be causes for emotional distress and uncertainty (Minden & Schiffer, 1991). It is believed that “fear points represent … modifiable moments and that health care communication is the context within which patients receive either support or obstruction” (Thorne et al., 2004, p. 18). It seems important for healthcare professionals to provide an opportunity for patients to express concerns and fears about the ongoing progression of the disease, the way they are living their life with disabilities, and various treatment options.
Feinstein and Feinstein (2001) have suggested that healthcare professionals should be sensitive to MS patients' complaints of irritability or sadness because, in their research, such complaints signaled levels of psychological distress approaching those of patients who were experiencing major depression. Understanding irritability and sadness as symptoms of psychological distress would allow health professionals to treat those symptoms through medication or by referral to a mental health professional. Discussions between MS patients and their healthcare professionals about sadness and anger would allow professionals to determine the nature and severity of these emotions. Minden and Schiffer (1991) have reported that depressed MS patients are often more angry, irritable, worried, and discouraged than they are withdrawn and disinterested.
We have identified four variables in the literature that seem relevant to the issue of healthcare professionals talking about emotional well‐being: illness cognitions, locus of control regarding health status, mental health, and overall quality of life. Illness cognitions are the beliefs that individuals hold about the cause of their illnesses, its consequences, and its trajectory (Leventhal, 1997). Beliefs that the illness cannot be predicted or controlled, as well as loss of hope, have been found to predict unfavorable outcomes in a variety of chronic illnesses (DeVellis & Blalock, 1992; Smith, Christensen, Peck, & Ward, 1994).
Working first with rheumatoid arthritis (RA) and then with both RA and MS, Evers and colleagues (2001) proposed a model that measures both positive and negative cognitions as a way of understanding why some individuals with chronic illness fare better than others over time. These researchers identified three components of illness cognitions that have been shown to be relevant to a broad range of chronic illnesses: helplessness, acceptance, and perceived benefits. Positive long‐term outcomes are associated with low levels of helplessness, high acceptance, and the ability to recognize at least one positive benefit of the illness.
Locus of control concerning health status and its relationship to chronic illness have been examined using populations facing a variety of chronic illnesses, including MS (Schwartz, 1999), lupus (Pfeiffer & Wetstone, 1988), breast cancer (Krasner, 2004), hypertension and diabetes (Frijling et al., 2004), end‐stage renal disease (Cvengros, Christensen, & Lawton, 2004), migraine headaches (Lampl et al., 2003), and sleep disorders (Vincent, Sande, Read, & Giannuzzi, 2004). The Multidimensional Health Locus of Control (MHLOC) scale (Wallston, Wallston & DeVellis, 1978) has been widely used to measure the degree of importance individuals place on themselves, luck, and powerful others (such as healthcare professionals) in determining health status. A strong belief in internal control has been found to be associated with health‐promoting behaviors and a higher socioeconomic status (Pfeiffer & Wetstone, 1988).
The mental health of MS patients is most often assessed with measures of depression and anxiety. A meta‐analysis of the literature on depression and MS found that MS patients have higher rates of depression than either the general population or people with other medical or neurological illnesses (Schubert & Foliart, 1993, cited in Mohr et al., 1999). People with MS also score high on measures of anxiety (Maurelli et al., 1992). Nevertheless, several researchers have reported that active problem solving and reframing are associated with lower levels of depression, whereas avoidance strategies are associated with higher levels of depression (Mohr, Goodkin, Gatto, & Van Der Wende, 1997; O'Brien, 1993; Wineman, Durand, & Steiner, 1994).
Quality of life (QOL) is a multidimensional concept, sometimes referred to as one's sense of wellbeing or satisfaction with life (Andrews & Withey, 1976; Campbell, 1981). Campbell and colleagues defined satisfaction as the gap between one's present situation and the situation aspired to or expected. Aronson (1997) found that people with MS who scored higher on acceptance of the illness were likely to report higher satisfaction with their QOL.
Purpose of the Study
The purpose of this study was to examine the frequency and content of health professionals' discussions about emotional well‐being at the time of a patient's diagnosis. We hypothesized that patients who had an opportunity to discuss their emotional well‐being at the time of their MS diagnosis would have healthier illness cognitions and higher levels of internal locus of control, would perform better on measures of mental health, and would report higher quality of life. The desire and frequency of MS patients to talk about their fears, sadness, and anger with a healthcare professional was also investigated. We also hypothesized that MS patients who discussed their fears, sadness, and anger with a healthcare professional while they were living with the illness would have similar positive outcomes.
The participants in this study were recruited through the South Central and Western Kansas Chapter of the National Multiple Sclerosis Society (NMSS). The national database from which they were drawn primarily consists of persons with MS but may include some family and friends who do not have MS.
The chapter requested from the NMSS national database a random sample of 1,000 names and addresses affiliated with the chapter. The initial mailing consisted of a letter introducing the study, along with a form that potential participants completed indicating that they had had a definite diagnosis of MS and whether they preferred to complete the study by telephone, Internet survey, or a mailed pencil‐and‐paper survey. Ninety‐two of these addressees were returned as undeliverable, and 185 individuals returned the form (an initial response rate of 20%). Of these 185, two were the family members of MS patients, and one had probable MS; thus these three were not included in the study. Data were obtained from 145 individuals, of whom 78% desired to participate.
Twenty individuals requested a telephone interview. These were individuals who had severe vision problems or who had difficulty writing. Telephone interviews typically were 1‐2 hours in length (although a few were completed in two sessions because the participants reported becoming fatigued). The response rate for the telephone interview was 100%.
Paper‐and‐pencil surveys were mailed to 137 individuals. The survey questions were contained in two booklets and took approximately 1 hour to complete. Reminder postcards were sent to those who did not return the survey after 3 weeks, and follow‐up telephone calls were made to those who did not respond to the postcard reminder. Of the original 137 individuals, 7 withdrew (because of increased health problems or a dislike of the questions or, in one case, a death), 27 did not return the booklets for various reasons (other things were going on, the booklets got lost in the mail), and 103 returned completed booklets. The overall response rate for pencil‐and‐paper surveys, including those who withdrew, was 75%.
A message with a link to an Internet survey was delivered to participants' e‐mail addresses, and they were given 3 weeks to complete the survey. Of the 24 who received the Internet survey, 22 (92%) responded. One declined after seeing the questions, and one e‐mail address was undeliverable.
Respondents who requested telephone interviews were older (53.8 years versus 44.8 years) and reported more physical limitations (16.3 versus 22.1 on the Short Form (SF)‐36® Physical Functioning Scale [lower scores reflect more limitations]) than those who requested to complete the survey online. Given that no significant differences were found for other demographic or outcome variables, we concluded that differences in mode of administration did not systematically bias the results.
Table 1 summarizes the demographics of the participants. Seventy‐three percent were female (n = 107); they ranged in age from 25 to 82 years (median age = 50; SD = 11.05), and most (92%) were Caucasian. Regarding the type of MS, 66% indicated that they had been diagnosed as relapsingremitting, 12% as primary‐progressive, and 9% as secondary‐progressive. Thirteen percent indicated that they didn't know what type of MS they had or selected “other” (e.g., “stabilized quad”). Participants had been diagnosed with MS for an average of 10.8 years (range = 1‐38 years).
Approximately two‐thirds of the sample was married (62%), and most did not have children living at home with them (65%). Participants reported household incomes that were fairly evenly distributed across the six income categories (median income range= $40,000‐$59,000) and were an educated group (high school graduate or less, 24%; some college or college graduate, 55%; some postdegree or completed postdegree, 21%). The majority of participants either were on disability (33%) or were employed full time (30%), and most identified their religion as either Protestant (60%) or Catholic (14%).
Participants were asked several general questions. They were asked whether a discussion of fear, sadness, and anger related to their illness seemed like a normal conversation to have with a healthcare professional. In addition, they were asked with whom they had been able to disclose their fears, sadness, and anger related to having MS.
At the Time of Diagnosis
Participants were asked one set of questions about their recollection of discussions of emotional wellbeing that might have occurred between themselves and their healthcare providers. Respondents were first asked, “During the time period of you receiving your diagnosis, was there any discussion between you and any of your medical provider(s) about your emotional well‐being?” If respondents indicated “yes,” then they were asked to describe what medical provider(s) (e.g., physician, nurse) addressed their well‐being and what was communicated to them. If respondents replied “no,” then they were asked to describe why they thought the medical provider(s) did not address issues related to their emotional well‐being.
Although these measures are retrospective, receiving a diagnosis of MS is a major turning point in life. As such, the experience is likely to be retained in patients' memories, even after many years (Frank, 1995). In their discussion of communicating neurological bad news to parents, Jan and Girven (2002) emphasized the importance of sensitivity and responsiveness on the part of the healthcare professional and noted that “years later, parents will continue to remember exactly who and how the bad news was conveyed” (p. 80). Thus, we believed that most patients would remember what they were thinking and feeling at that time.
Living with the Illness
Two additional questions about conversations with medical professionals related to fears, sadness, and anger were asked. First, participants were asked, “Has a health care professional ever given you the opportunity to talk about fears, sadness, or anger related to your illness (yes or no)?” Because we did not want to assume that all individuals desire to talk about their emotions, respondents were asked, “If a health care professional has not provided an opportunity to talk about fears, sadness, or anger related to having MS, would you have liked to have such an opportunity (yes or no)?”
Illness cognitions were assessed using the Illness Cognition Questionnaire (ICQ), a scale designed to measure cognitions related to helplessness, acceptance, and benefit finding among those with chronic illness (Evers et al., 2001). Sample items include (a) Because of my illness, I miss the things I like to do most (helplessness); (b) I have learned to live with my illness (acceptance); and (c) Looking back, I can see that my illness has also brought about some positive changes in my life (perceived benefits). Participants responded to all statements using a 4‐point Likert scale (1 = not at all, 2 = somewhat, 3 = to a large extent, and 4 = completely). The internal consistency coefficients of the helplessness, acceptance, and perceived benefit scales were alpha = .89, .84, and .85, respectively.
The widely used Multidimensional Health Locus of Control (MHLOC) scale (Wallston et al., 1978) measures the degree of importance individuals place on themselves, luck, and powerful others (such as healthcare professionals) in determining health status. Form C of the MHLOC scale, which measures locus of control for a specific illness, was used. The internal locus of control subscale has six items, such as “I am directly responsible for my MS getting better or worse” and had an internal consistency alpha of .71. The chance subscale also has six items (e.g., “Luck plays a big part in determining how my MS improves”). The chance subscale had an internal consistency coefficient alpha of .78. The doctors subscale has three items (e.g., “If I see my doctor regularly, I am less likely to have problems with my MS”), and not surprisingly, a lower internal consistency coefficient of alpha = .57. The final subscale attributes locus of control to other people and has three items, including “Other people play a big role in whether my MS improves, stays the same, or gets worse.” Internal consistency for this subscale was also low (alpha = .63).
The Mental Health Inventory (MHI) has been widely used in other MS studies (Vickrey, 1995). The 18‐item MHI includes four subscales, which are assessed relative to the last 4 weeks: (a) anxiety (“Have you been a very nervous person?”), (b) depression (“Have you felt downhearted and blue?”), (c) behavioral control (“Have you been in firm control of your behavior, thoughts, emotions, feelings?”), and (d) positive affect (“Have you felt cheerful, lighthearted?”). The internal consistency alpha coefficients for these four subscales were .85, .86, .84, and .80, respectively. The total MHI had an internal consistency alpha of .92.
Global quality of life and life satisfaction were assessed with one question from the Multiple Sclerosis Quality of Life (MSQOL)‐54 Inventory (Vickrey, 1995): “Overall, how would you rate your own quality‐of‐life? Circle one number on the scale below (1 = worst possible quality of life to 10 = best possible quality of life).
Participants' perception of their degree of physical limitation was measured with the 10‐item Physical Functioning (PF) scale of the Health Status Questionnaire (SF‐36), a widely used measure of generic health status (Stewart, Hays, & Ware, 1988). The scale focuses on the degree of limitation in a variety of activities, such as lifting or carrying groceries, walking more than a mile, and bathing and dressing. The PF scale was internally consistent in this study, with a coefficient alpha of .95.
Responses to open‐ended questions were transcribed, and themes were identified to summarize how respondents described the way that medical providers had addressed their emotional needs at the time of diagnosis. Themes were derived from grouping comments that were conceptually similar. Labels for each theme were constructed to highlight providers' interaction styles regarding emotional issues and, in cases where emotional well‐being was not addressed, patients' beliefs about why providers had not provided an opportunity for such discussion. Two of the researchers read all responses and came to agreement on both conceptual clustering of responses (themes) and labels for each theme.
Talking About Emotions
Most participants (67%) reported that a discussion of fear, sadness, and anger related to their illness seemed a normal conversation to have with a healthcare professional. When asked about the interaction at the time of diagnosis, 44% of respondents (n = 61) reported that a medical provider discussed their emotional well‐being with them at this time. Respondents who reported a discussion of emotional well‐being at the time of diagnosis were asked to identify the medical provider who participated in that discussion with them. Though not all respondents answered the question fully, the medical providers listed in their responses included family physicians, primary care physicians, neurologists, nurses, and psychologists. A content analysis of responses yielded seven themes to describe the way providers interacted with patients concerning emotional issues at the time of diagnosis. These themes were normalization, provision of a psychological diagnosis, psychological referral, referral to a support group, referral to NMSS, encouragement and hope, and distancing or controlling. Some participants' responses received more than one code.
Respondents (56%, n = 78) who had not discussed their emotional well‐being with a medical provider at the time of their diagnosis were asked to attribute the medical provider's reason for not addressing these issues. These reasons can be found in Figure 1. Several participants indicated that they did not know why the issue had not been discussed or that it had been so long since their diagnosis that they did not remember. Some patients attributed the lack of discussion to factors related to themselves (for example, emotional well‐being was not an issue for them, they were already receiving treatment for depression, they were in denial or shock, or their healthcare provider believed that they were already experienced in dealing with MS because a family member of theirs had MS). Other patients focused on the medical profession, stating that medical professionals did not have enough information or that they targeted physical rather than emotional symptoms, they were interested in getting started on treatment, or they lacked concern for the patient.
Those respondents in the distancing or controlling category (n = 4; Fig 2) were eliminated from the t‐test comparisons on the outcome variables because they explicitly indicated that talking about emotional well‐being was not a favorable experience. Respondents who indicated that their emotional well‐being was discussed at their diagnosis had significantly higher levels of acceptance (17.3 versus 16.1, t = 2.1, df = 131, p > .05) and positive benefits (17.8 versus 16.1, t = 2.5, df = 132, p > .05) on the ICQ.
Talking About Emotions While Living with the Illness
In order to better understand differences between participants relative to discussions of emotions with healthcare providers at any time beyond diagnosis, participants were divided into three groups: those who had wanted to talk with healthcare providers about fears, sadness, and anger and who had had an opportunity to do so (n = 67), those who had wanted to have such a discussion but had not been given an opportunity (n = 49), and those who had not wanted to talk with a healthcare provider (n = 22). One‐way analysis of variance was then used to compare the three groups on several positive functioning variables, including illness cognitions, locus of control, mental health, and quality of life (Table 2). Seven of the 14 analyses were significant, identifying differences in acceptance (F = 9.4, df = 2, p = .00) and recognition of positive benefit (F = 3.1, df = 2, p = .05) on the ICQ, locus of control attributed to doctors (F = 5.6, df = 2, p = .00), total mental health (F = 4.4, df = 2, p = .04), depression (F = 3.3, df = 2, p = .4), behavioral control (F = 4.3, df = 2, p = .02), and positive affect (F = 4.6, df = 2, p = .01). A post hoc Tukey's honestly significant difference test was conducted for the seven variables where a significant main affect was found (Table 3). In general, the post hoc analyses indicated that those who wanted to talk with their healthcare provider about their emotions and were able to do so were better off than those who wanted to and did not have the opportunity (i.e., they had higher acceptance and better mental health). In addition, the former group attributed greater locus of control over managing their illness to doctors than those who did not want to discuss their emotions with their healthcare provider. The group who did not want to discuss their emotions with a healthcare provider typically reported higher levels of mental health than either group who wanted this discussion, but their scores were significantly different only from the group who wanted this discussion to happen but did not have the opportunity (in terms of the total mental health and behavioral control subscales).
This study investigated MS patients' view of the process of healthcare providers' discussing emotions with them at the time of diagnosis and at any time while they were living with the illness. The majority of study participants felt that talking about fear, sadness, and anger seemed a normal conversation to have with a healthcare professional. However, only 44% of respondents indicated that they had discussed emotional well‐being with their healthcare provider at the time of their diagnosis, while about 58% of participants reported that they had ever talked with their provider about their fears, sadness, and anger related to having MS while living with the illness.
Over half of the participants reported that no discussion of their emotional well‐being occurred at the time of their diagnosis. Based on previous research (Kralik et al., 2001; Thorne et al., 2004), this omission could be problematic. As one of our participants stated, “I could have used some education and counseling sessions.” When asked why they believed that this conversation did not occur, several themes emerged that have implications for both patients' thoughts about their illness and their relationship with the medical profession. Two themes appear to be related: the patient's being in denial and the patient's emotional well‐being at the time of diagnosis not being an issue (i.e., the patient denies that receiving a diagnosis of a potentially disabling neurological disease like MS was emotional). Given that both themes are somewhat related to the patient's being in denial, these participants are not likely to accept and formulate a new identity that includes MS. Those patients who reported having a family member with MS are most likely to have information about MS but may also feel more frightened about what they know and have difficulty finding positive benefits of an illness that they have observed affecting a member of their family.
Patients' attributions that focused on the medical profession included the belief that medical professionals did not have enough information; that they were focused on physical rather than emotional symptoms; that they were interested in getting started on treatment; and—the least favorable attribution —that they were not concerned about the patient. It is not clear in our study whether the respondents felt that medical professionals did not have enough information on MS in general or that they did not know how to talk about emotional wellbeing specifically related to living with MS. In a study of oncologists, physicians felt that it was their responsibility to address the patients' physical symptoms but not necessarily their psychosocial issues (Detmar, Aaronson, Wever, Muller, & Schornagel, 2000), and the theme that getting started on treatment was a priority has been reported in a study of cancer patients (Salander, 2002). Respondents who believe that a healthcare professional is not concerned about them may be less likely to form a good working relationship with that healthcare professional (or indeed any others), to discuss sensitive topics (e.g., mental health, sexuality, bladder and bowel control), or to obtain treatment for mental health issues.
Emotions can overwhelm MS patients and their families at any stage of the illness (Thorne et al., 2004). For some, concerns over the future path of MS may create symptoms similar to posttraumatic stress disorder (Chalfant, Bryant, & Fulcher, 2004). In our study, participants were divided into three groups, (a) those who indicated that they wanted to talk about their fears, sadness, and anger related to having MS and had been given an opportunity to do so, (b) those who indicated that they wanted to talk and had not been given an opportunity, and (c) those who did not want to talk about their fears, sadness, or anger. One‐way analysis of variance indicated differences between these three groups on the illness cognitions‐acceptance and positive benefit, locus of control‐doctors, total mental health scale, and the subscales of depression, behavior control, and positive affect. Post hoc comparisons found differences between the (a) and (b) groups on illness cognitions‐acceptance, total mental health, and the positive affect measure of mental health. Those who were given the opportunity to talk about their fears, sadness, and anger with a healthcare professional had greater acceptance and overall better mental health, especially on the positive affect subscore. These findings are noteworthy because asking about fears, sadness, and anger can be a fairly simple intervention by nurses. Patients who believe that they can share fears, sadness, and anger with healthcare professionals may feel that they can discuss many other sensitive topics that they will deal with as they live with MS.
The third group was a small subset of participants who reported that they did not want to talk with a healthcare professional about their fears, sadness, and anger related to living with MS. In general, this group reported higher well‐being than either of the groups who wanted to have had such a discussion, but most differences were not statistically significant. In addition, this group was also significantly less likely to give the locus of control to their doctors. Further research needs to be conducted on these individuals. It is not clear whether these individuals have had previous negative interactions with medical professionals, are uncomfortable discussing emotions, or are doing very well on their own without having to discuss emotions with a healthcare professional. This group may also differ in their interactions with medical professionals in other important ways.
Given the high comorbidity of mental health problems with MS and the unpredictability and uncertainty of living with MS, emotions are an important issue for nurses to discuss with MS patients. Nurses should also be prepared to collaborate with mental health professionals and to refer their patients to them. Previous research has considered the quality and nature of MS patients' communication with physicians (Kralik et al., 2001; Levinson, 1999; Thorne et al., 2004), but this study is the first to explicitly examine MS patients' perceptions of the discussion of emotions with their healthcare provider.
The period of searching for a diagnosis and then finally receiving one may be especially difficult for MS patients. In a qualitative study of MS patients, the prediagnosis and diagnosis period were difficult because waiting for information from healthcare professionals heightened fear. The study found that “timely, relevant, and accurate information were essential to minimizing fear” (Thorne et al., 2004, p. 13). Kralik and colleagues (2001) reported that women who were being diagnosed with a longterm illness felt alone, vulnerable, and in need of information in order to formulate a new identity that incorporated their new illness. Our research found that when healthcare professionals inquired about patients' emotional well‐being at the time of diagnosis, these patients had higher scores on acceptance of and finding positive benefit from their MS. Participants reported that healthcare professionals normalized the emotions they were experiencing; provided referrals to psychologists, support groups, or NMSS; expressed concern; and provided encouragement and hope. These responses seemed appropriate and were considered helpful by participants. When emotions were normalized and referrals made, healthcare professionals were providing relevant and needed information about living with MS and potentially encouraging patients to begin to accept their illness and formulate an identity that included their illness. Expressions of concern, encouragement, and hope likely helped patients feel less alone and may have included a discussion of positive benefits that could occur from having MS. For a small number of participants, the discussion of emotional well‐being was not viewed as a positive experience and was described as distancing or controlling. It is likely that this group of participants continued to feel distressed by their diagnosis of MS and were not empowered to take control of their illness.
One limitation of this study is that the specific details of the interaction that occurred with healthcare professionals were not assessed; only the patients' perspective was considered. Although we believe that patients remember clearly the interactions from their perspective (Frank, 1995; Jan & Girven, 2002), it may be that patients are misinterpreting healthcare professionals' motives, intent, or communication. The initial response rate to the invitation to participate in the study was also lower than desired, but the results obtained seem consistent with the extant literature. Thus, the generalizability of the results appears probable, although replication of the findings with other samples of MS patients is certainly warranted.
Considering the nonverbal and contextual factors that are involved in any communication, we recommend further research that studies communication between patients and healthcare professionals at the time of diagnosis, during patients' exacerbations, and at times when patients are clearly emotional. In order to train nurses and other healthcare professionals in how to engage in this communication, it will be necessary to more completely understand what patients find supportive and helpful as they deal with the inevitable fears and sadness of living with MS.
Overall, our study confirmed what previous research had suggested about the value and importance of compassionate communication between MS patients and healthcare professionals as being “effective in supporting the attitudinal and psychological state that is most likely to buffer the emotional morbidity commonly associated with MS” (Thorne et al., 2004, p. 18). Understanding the losses that MS brings to a patient's life may make it difficult for healthcare professionals to talk about the fears and sadness that accompany the diagnosis (Hauser, 1996). However, nurses who respectfully inquire about the MS patient's emotional well‐being at diagnosis and their fears, sadness, and anger while living with the illness may play an important role in addressing the inevitable fears that will arise, increasing overall mental health, and helping to maximize acceptance and finding positive benefits from having MS. It seems especially important for nurses to be sensitive to the emotional well‐being of patients who report having had frustrating or negative interactions with other healthcare professionals. If, after listening with concern and empathy, nurses feel that the patients have additional unmet emotional needs, nurses can refer these individuals to mental health professionals who have had experience with MS patients.
Andrews, F. M., & Withey, S. B. (1976). Social indicators of well-being.
New York: Plenum.
Aronson, K. J. (1997). Quality of life among persons with multiple sclerosis and their caregivers. Neurology, 48
Burnfield, A. (1984). Doctor-patient dilemmas in multiple sclerosis. Journal of Medical Ethics, 10,
Campbell, A. (1981). The sense of well-being in America: Recent patterns and trends.
New York: McGraw-Hill.
Caplan, L. R. (1996a). What to tell patients with their first attack of multiple sclerosis: Introductory comments. European Neurology, 36
Caplan, L. R. (1996b). What to tell patients with their first attack of multiple sclerosis: Concluding comments. European Neurology, 36
Carter, H., McKenna, C., MacLeod, R., & Green, R. (1998). Health professionals' responses to multiple sclerosis and motor neuron disease. Palliative Medicine, 12
Chalfant, A. M., Bryant, R. A., & Fulcher, G. (2004). Posttraumatic stress disorder following diagnosis of multiple sclerosis, Journal of Traumatic Stress, 17,
Cvengros, J. A., Christensen, A. J., & Lawton, W. J. (2004). The role of perceived control and preference for control in adherence to a chronic medical regimen. Annals of Behavioral Medicine, 27
Dalos, N. P., Rabins, P. V., Brooks, B. R., & O'Donnell, P. (1983). Disease activity and emotional state in multiple sclerosis. Annals of Neurology, 13
Detmar, S. B., Aaronson, N. K., Wever, L. D., Muller, M., & Schornagel, J. H. (2000). How are you feeling? Who wants to know? Patients' and oncologists' preferences for discussing health-related quality of life issues. Journal of Clinical Oncology, 18
DeVellis, B. M., & Blalock, S. J. (1992). Illness attributions and hopelessness depression: The role of hopelessness expectancy. Journal of Abnormal Psychology, 101
Devins, G. M., & Seland, T. P. (1987). Emotional impact of multiple sclerosis: Recent findings and suggestions for future research. Psychological Bulletin, 101
Elian, M., & Dean, G. (1985). To tell or not to tell the diagnosis of multiple sclerosis. Lancet, 2,
Evers, A. W. M., Kraaimaat, F. W., van Lankveld, W., Jongen, P. J. H., Jacobs, J. W. G., & Bijlsma, J. W. J. (2001). Beyond unfavorable thinking: The illness cognition questionnaire for chronic diseases. Journal of Consulting and Clinical Psychology, 69
Feinstein, A., & Feinstein, K. (2001). Depression associated with multiple sclerosis: Looking beyond diagnosis to symptoms expression. Journal of Affective Disorders, 66
Frank, A. W. (1995). The wounded storyteller
. Chicago: University of Chicago Press.
Frijling, B. D., Lobo, C. M., Keus, I. M., Jenks, K. M., Akkermans, R. P., Hulschler, M. E. J. L., et al. (2004). Perceptions of cardiovascular risk among patients with hypertension or diabetes. Patient Education and Counseling, 52
Gilchrist, A. C., & Creed, F. H. (1994). Depression, cognitive impairment and social stress in multiple sclerosis. Journal of Psychosomatic Medicine, 38
Hauser, S. L. (1996). What to tell patients with their first attack of multiple sclerosis: Opinion 2. European Neurology, 36
Hunt, L. M., Jordan, B., & Irwin, S. (1989). Views of what's wrong: Diagnosis and patients' concepts of illness. Social Science and Medicine, 28, 945-956
Jan, M. M. S., & Girvin, J. P. (2002). The communication of neurological bad news to parents. Canadian Journal of Neurological Sciences, 29
Joy, J. E., & Johnston, R. B., Jr. (Eds.). (2001). Multiple sclerosis: Current status and strategies for the future
. Washington, DC: National Academies Press.
Kralik, D., Brown, M., & Koch, T. (2001). Women's experiences of “being diagnosed” with a long-term illness. Journal of Advanced Nursing, 33
Krasner, M. (2004). Mindfulness-based interventions: A coming of age? Families, Systems, and Health, 22
Kroencke, D. C., Denney, D. R., & Lynch, S. G. (2001). Depression during exacerbations in multiple sclerosis: The importance of uncertainty. Multiple Sclerosis, 7
Lampl, C., Heuberger, B., Haas, S., Yazdi, K., Buzath, A., & Kemetzehofer, P. (2003). Relationship of locus of control in women with migraine and healthy volunteers. Headache: The Journal of Head and Face Pain, 43
Leventhal, H. (1997). Illness representations: Theoretical foundations. In K. J. Peterie & J. A. Weinman (Eds.), Perceptions of health and illness: Current research and applications.
Amsterdam: Harwood Academic.
Levinson, W. (1999). In context: Physician-patient communication and managed care. Journal of Medical Practice Management, 14
Loveys, B. J., & Klaich, K. (1991). Breast cancer: Demands of illness. Oncology Nursing Forum, 18
Lynch, S. G., Kroencke, D. C., & Denney, D. R. (2001). The relationship between disability and depression in multiple sclerosis: The role of uncertainty, coping, and hope. Multiple Sclerosis, 7
MacAllister, W. S., & Krupp, L. B. (2005). Multiple sclerosis-related fatigue. Physical Medicine and Rehabilitation Clinics of North America, 16
Maurelli, M., Marchioni, E., Cerretano, R., Bosone, D., Bergamaschi, R., Citterio, A., et al. (1992). Neuropsychological assessments in MS: Clinical neuropsychological and neuroradiological relationships. Acta Neurologica Scandinavica, 86
Minden, S. L., & Schiffer, R. B. (1990). Affective disorders in multiple sclerosis: Review and recommendations for clinical research. Archives of Neurology, 47
Minden, S. L., & Schiffer, R. B. (1991). Depression and mood disorders in multiple sclerosis. Neuropsychiatry, Neuropsychology, and Behavioral Neurology, 4
Mohr, D. C., Dick, L. P., Russo, D., Pinn, J., Boudewyn, A. C., Likosky, W., et al. (1999). The psychosocial impact of multiple sclerosis: Exploring the patient's perspective. Health Psychology, 18
Mohr, D. C., & Goodkin, D. E. (1999). Treatment of depression in multiple sclerosis: Review and meta-analysis. Clinical Psychology: Science and Practice, 6
Mohr, D. C., Goodkin, D. E., Gatto, N., Van Der Wende, J. (1997). Depression, coping, and level of neurological impairment in multiple sclerosis. Multiple Sclerosis, 3
Mohr, D. C., Hart, S. L., Julian, L., Cox, D., & Pelletier, D. (2004). Association between stressful life events and exacerbation in multiple sclerosis: A meta-analysis. British Medical Journal, 328
O'Brien, M. T. (1993). Multiple sclerosis: The relationship among self-esteem, social support, and coping behavior. Applied Nursing Research, 6
Pfeiffer, C. A., & Wetstone, S. L. (1988). Health locus of control and well being of 53 patients with systemic lupus erythematosus. Arthritis Care and Research, 1
Salander, P. (2002). Bad news from the patient's perspective: An analysis of the written narratives of newly diagnosed cancer patients. Social Science and Medicine, 55,
Schofield, P. E., Beeney, L. J., Thompson, J. F., Butow, P. N., Tattersall, M. H. N., & Dunn, S. M. (2001). Hearing the bad news of a cancer diagnosis: The Australian melanoma patient's perspective. Annals of Oncology, 12
Schubert, D. S., & Foliart, R. H. (1993). Increased depression in multiple sclerosis patients: A meta-analysis. Psychosomatics, 34
Schwartz, C. E. (1999). Teaching coping skills enhances quality of life more than peer support: Results of a randomized trial with multiple sclerosis patients. Health Psychology, 18
Shields, C. E. (1998). Giving patients bad news. Primary Care, 25,
Smith, T. W., Christensen, A. J., Peck, J. R., & Ward, J. R. (1994). Cognitive distortion, helplessness and depressed mood in rheumatoid arthritis: A four year longitudinal analysis. Health Psychology, 3
Stewart, A., Hays, R. D., & Ware, J. E. (1988). The MOS short-form general health survey: Reliability and validity in a patient population. Medical Care, 26
Thorne, S., Con, A., McGuinness, L., McPherson, G., & Harris, S. R. (2004). Health care communication issues in multiple sclerosis: An interpretive description. Qualitative Health Research, 14
Vickrey, B. G. (1995). Multiple sclerosis quality of life (MSQOL)-54 instrument.
Los Angeles: University of California-Los Angeles.
Vincent, N., Sande, G., Read, C., & Giannuzzi, T. (2004). Sleep locus of control: Report on a new scale. Behavioral Sleep Medicine, 2
Wallston, K. A., Wallston, B. S., & DeVellis, R. (1978). Development of multi-dimensional health locus of control (MHLC) scales. Health Education Monographs, 6
Weitz, R. (1989). Uncertainty and the lives of persons with autoimmune deficiency syndrome. Journal of Health and Social Behavior, 30
White, D. M., Catanzaro, M. L., & Kraft, G. H. (1993). An approach to the psychological aspects of multiple sclerosis: A coping guide for healthcare professionals and families. Journal of Neurological Rehabilitation, 7, 43-52.
Wineman, N. M., Durand, E. J., & Steiner, R. P. (1994). A comparative analysis of coping behaviors in persons with multiple sclerosis or a spinal cord injury. Research in Nursing and Health, 17,
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