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Social Aspects of Multiple Sclerosis
Social aspects of life for multiple sclerosis
From:Journal of Neuroscience Nursing. April 1998; 30(2)
By:Helena Leino-Kilpi, Eija Luoto, Jouko Katajisto


Abstract: Social aspects of life for multiple sclerosis (MS) patients have an important impact on their sense of empowerment. Empowerment is a sense of personal control, made up of cognitive, experiential, functional, ethical, economic, biophysiological, and social elements. Researchers in Finland surveyed 64 MS patients, and found that the disease had both positive and negative impacts on life. Loss of the ability to work and strained social relationships negatively effect the life of patients. Home health services and a helpful social network contribute to patient empowerment.

Introduction

This article identifies and describes the elements that are crucial to the efforts of nurses in promoting and encouraging empowerment in multiple sclerosis (MS) patients. The choice of subject is based on the role that nurses play in helping MS patients; that role, by definition, is a supportive one and it is up to the patients themselves to take control and assume responsibility for their health.

This overview of the elements of empowerment is based on the literature and on data collected from 64 MS patients at the Masku Neurological Rehabilitation Center, Finland. The article begins with a brief description of the concept and elements of empowerment. The purpose of the data collection was to describe the most important elements of empowerment, and their empirical illustrations by MS patients. The results of earlier research are compared with the present findings in the discussion of each element of empowerment.

Theoretical Premises

There are two main theoretical approaches to the care of patients with chronic illness such as multiple sclerosis. The first is known as the trajectory approach, the other is the empowerment approach.30,33 The term trajectory was coined in the 1960s. This framework is based on the notion that chronic illness varies over time and has a course that may be shaped or managed. The trajectory management process corresponds to the nursing process as described by Smeltzer in 1991.7,33 The trajectory model, as Smeltzer points out, is particularly useful in that it allows for a wide range of multiprofessional collaboration.33

The concept of empowerment is used in numerous contexts. Power refers to the ability to influence what happens to oneself; the process is regarded as empowering if it helps people develop skills for independent problem-solving and decision-making. Empowerment comes close to the concepts of mastery, management, coping, adjustment and locus of control, but gives special emphasis to the inner feeling of having control over one's own life. Crigger uses the concept of mastery and says it is only recently that it has begun to attract more systematic research attention.9 No MS research has been reported that explores mastery specifically, but several MS researchers have studied locus of control. Their results, however, are conflicting. For example, Halligan and Reznikoff found a significant inverse relationship between internal control and depression.18 Marks and Millard on the other hand, reported no significant correlation between internal locus of control and positive mood states or life satisfaction in a sample of 31 men and women with MS.27,37 The empowerment approach has been applied more recently in evaluations of quality of health care and nursing care. In this sense empowerment also touches upon issues of patient satisfaction.25,26
Elements of empowerment can be defined in many different ways. The definition applied in this article is based on the views and notions of Finnish hospital patients as expressed in our quality studies.25,26 The dimensions of empowerment are thus defined as follows:

experiential, the origin of power lies in earlier experiences and self-esteem
functional, the origin of power lies in the function of one's own body and mind
ethical, the origin of power lies in the feeling of being valued and respected as an individual human being
economic, the origin of power lies in the patient affording the technical aids and other support available
biophysiological, the origin of power lies is in knowing one's own body, its biological changes and symptoms
social, the origin of power lies in social interaction and contacts with other human beings
cognitive, the origin of power lies in knowledge. Patients must have enough knowledge and the ability to put that knowledge to use for purposes of maintaining and improving their health
These perspectives were used to organize an analysis of a written data of MS patients. The research question was: What are the elements of empowerment? For solving the problem, the meaning of MS disease, control of health problem and support needed were analyzed.

Methods

The data were collected by a questionnaire at one rehabilitation center in Finland in 1996. The study included 64 randomly selected MS patients. The patients voluntarily answered the questionnaire during the two-week rehabilitation course. The data were collected in collaboration with the nurse manager of the center: She explained the purpose of the study and distributed the questionnaires to the patients.
In the questionnaire, there were structured and open-ended questions. In the structured ones, the background factors were asked. These were gender, age, level of education, living ways, need for help, time of diagnosis, health status and level of satisfaction with health care.

In the open-ended questions, the patients answered in the freeform written way following three questions:

1. What is the meaning of MS to you in your life?
2. How do you control your health problem?
3. How could you be supported?

Content analysis of the data was framed by the empowerment elements determined above. The content areas appearing within each empowerment element were inductively labeled and coded with numbers in margins. The results of the labeling are illustrated in. The numbers were used for descriptive statistics.

Results

Over half of the respondents were women (Table 1). Most of them were middle-aged and had a professional education. Their MS had been diagnosed in the 1980s and 1990s, and one half of them described their health as very or rather poor or rather good. For the main part they were satisfied with their treatment and nursing care. Most of them needed help with their activities of daily living (ADL), typically provided by the spouse or a child.

Meaning of MS
The meaning of MS was described in both negative and positive terms. In the category of negative descriptions the patients referred most often to the various limitations that the illness caused in their lives. They told for example, that "everything is limited" or "there are just limitations." Also insecurity and giving up were identified. Part of the patients described being a burden to others.

As for positive aspects, the most common meanings attached to MS were value clarification and personal growth, as is illustrated by the following quotation:

"This has obviously taught me a great deal. I am sure I have grown up to be quite different had I not had this illness. And that's not at all bad."

Also the functional element was meaningful for many patients. In the functional element, mainly the problems in daily activities (dressing, eating, shopping) were mentioned. In the experimental element, the patients described their feelings and earlier experiences, and how they knew many things based on their earlier experiences. The biological element comprised references to weakness and fatigue, which have been previously pointed out.5,20,39 Indeed Hubsky and Sears suggest that fatigue should be accepted as a nursing diagnosis and taken into account in the planning of nursing care.20 Economical, ethical and cognitive elements were rarely mentioned.

The dominant element of empowerment in the patients' responses was the social aspect. In the social meaning, there are positive and negative sides. The main sources of negative social meanings attached to MS are loss of work, loss of hobbies and loss of contacts in general. In Canada, Jackson et al studied the impact of MS on occupational roles and career patterns in a sample of 210 MS patients.21 Only 24% of them were employed on a full or part-time basis at the time of the study. The sharpest decrease in employment occurred in health-related professions and service industries. The disabilities and symptoms with the greatest effect on employment were fatigue and muscle weakness. Work-related problems included the inability to work full-time and inaccessible environments. The same difficulties were also raised in the present data, as is clear from the following excerpt:

"I am sure I could still cope at work if I did not have to work full-time. In the afternoon I feel completely exhausted and simply have no energy left at all. My employer has been very good and flexible, but it is hard always to have to go and ask for understanding."

"I can't work and that's a big problem. And I could actually cope with the job itself but I can't even get in with my wheelchair! So I had to give it up although that was a hard thing to do."

Gulick et al have carried out a major study into conditions that impede or enable the performance of work.15 The population comprised some 500 people: those working outside the home (n = 104), homemakers (n = 204), unemployed people (n=92) and a retired group (n=70). Qualitative and quantitative methods were used to identify 53 conditions or situations that make it difficult to perform work. Six conditions, fatigue, balance, standing, walking, weakness and vision problems, were mentioned by all groups. Some 10% also mentioned pain, back pain in particular, as an impeding factor. Fatigue, however, was the dominant problem in all groups. A total of 27 conditions or situations were identified that made it easier to perform work. Five conditions, specifically assistance with tasks, family and friends, intermittent rest periods, adaptive aids, self-pacing and positive attitude, were mentioned by all groups. Physiotherapy was rarely mentioned. According to the authors these findings suggest that family members, employers and health professionals need to place more credence in the adaptive abilities of MS patients. They stress the role of patients in drawing up realistic plans for their total treatment and care. Leaning on this and other studies, Gulick has developed a model for work performance among MS patients.12

Sexual dysfunction or reduced sexual contacts is another problem that deserves separate mention here, even though the MS patients in this study did not raise it very often.10,35 Sexual problems in MS seem to be the combined outcome of the neurological consequences of the disease and the reactions to the condition at a personal level and in society at large. There is much anxiety among patients about their sexual performance. Some individuals and couples may have concerns about fertility, pregnancy and birth control. Kalb et al described three aspects of the relationship that may be disrupted:23

Level of intimacy. The couple who was previously close and sharing is not able completely to "share the disease," giving rise to experiences of alienation and abandonment which may intrude on sexual intimacy.
Gender roles. Traditional gender roles may be highly valued and will therefore not be changed. Role changes may make the disabled person feel less masculine or feminine and hence less attractive in the partner's eyes.
Caretaking activities. The partner who bathes, dresses and catheterizes the disabled person may harbor feelings of anger (perhaps accompanied by guilt) which may interfere with sexual activity.

Some of the patients in this study also identified positive social meanings in their illness, the opportunity to make new contacts and take on new roles. Most often new contacts were other MS patients.

In the experiential element, our patients spoke about depression, sorrow, uncertainty and their fear of the future. All of these experiences have been discussed in earlier research as well.31 For instance, in a qualitative study involving 10 MS patients and their partners, Hainsworth explored the phenomenon of chronic sorrow.16,17 Eight of these patients reported experiences of chronic sorrow, which was triggered by certain life events. These events were categorized as social norm, personal norm, management, development and anniversary issues. Social norms were events that forced the participants to compare their lives to those of healthy others; personal norms were reminders of life prior to their or their spouse's disease. Issues included caregiving and interruptions in the pattern of the normal life span. Anniversaries were defined as stressful events surrounding the patient's initial diagnosis.
The experience of uncertainty has been extensively researched.5,9,36,38,41,42 Uncertainty is a mental state involving both cognitive and emotional aspects. It has been described as the sense of being out of control, of feeling less than certain and not feeling safe.19 Weeks described MS as a "malignant uncertainty."39 On the basis of a study of 90 women with MS, Crigger reported that relationships among family and friends had primacy in the uncertainty experience.9 Spiritual well-being appears to play a significant role in adaptation to uncertainty. Life stressors, in addition to disease, have a major impact on women's sense of mastery. The following quotations from our material illustrate the element of uncertainty:
"The worst thing of all is this uncertainty. You do not really want to make plans because you never know whether you will be able to walk. And in general you have this awareness of the unexpected. I myself had a friend who all of a sudden became bed-ridden. You don't even want to plan any holidays."

"This is a life of uncertainty. And the worst sort of uncertainty, because the uncertainty factor lies within yourself. You can never be sure whether you are going to cope."

Wineman et al studied 61 married couples in which one spouse had MS.41 Spouses, either well or with MS, reporting higher levels of uncertainty were more likely to have lower moods and feel more dissatisfied with their family life. This finding held true regardless of the level of functional capacity of the affected spouse.

Controlling MS

Most of our patients' responses to the question of how they control their health problems referred to the experiential, social and functional components. There are two different sides to the experiential dimension. The patients refer to their efforts to control their condition on the strength of their previous experiences, knowledge of themselves, knowledge of hospital staff, knowledge of the previous "bad spell" and of how to cope with those spells. This is in fact a common finding; patients with chronic illness and their families often develop a high degree of expertise in the management of symptoms and disabilities.41

In the other aspect of the experiential dimension the patients talk about controlling their health problems, about their refusal to give up, their sense of humor and imagination.5

"At the end of the day you can make a big difference by not giving in. No matter how difficult it all is and everything seems to be going wrong, there is always that strength in yourself. If you try to think in positive terms, to find that positive aspect, it's not all gloom and doom, although very often it is!"

"Imagination is a great help. I imagine that this does not exist. I have this cottage on an island but I can't get there any more. Every now and then I make the trip in my imagination, I can remember every stone and every rock. And I sit down for a while on the jetty. Afterwards I feel like I have really been there and I feel like I have fresh strength to live again."

The most important aspects of the functional dimension are rehabilitation and physiotherapy; the patients usually just mention these, without any detailed descriptions. Referring to the control of sexual dysfunction, Dewis and Thornton make several suggestions for nurses.10 The most important is to help people learn about their own bodies and to convey to their partners what is and what is not pleasurable.

The role of the family is clearly evident in the social dimension. Friends, hobbies and MS Association also seem to have an important role to play in patients' lives. The importance of other people has been indicated in many other studies as well. Miles and Maybury and Brevin, for instance, stress the importance of contacts with healthy people; these contacts help MS patients cope.28,29 Gulick reported on the social support of MS patients in the United States.13 The findings of this study involving 200 MS patients indicated that gender, marital status and personal and situational changes over time are related to specific social support functions and/or network structure. Men perceived higher levels of affect, affirmation and aid support than women. This result is consistent with earlier observations that women in both their family and work roles, generally give more support than they receiver.2,4 Gulick suggests that nurses and health care workers should have an active role in building up a social network for MS patients.13 Wineman has described the social network of MS patients on the basis of a study of 38 men and 80 women in the United States.40 The average network size was about 9 people. Socially stressful events also deserve special understanding on the part of nurses.

There are numerous studies that have concentrated on the spouses of MS patients. Many have reported overwhelming dependency needs among persons with MS.14,32 In a study of the coping strategies of 156 spouses or significant others, Gulick identified six coping factors.14 Two of them were problem-focused, i.e., Planning and Confronting, and three were emotion-focused, i.e., Ambivalence, Escape and Distancing. Finally, one coping factor was problem- and emotion-focused, i.e., Accepting. Problem-focused coping strategies were used significantly more than emotion-focused strategies, indicating that spouses cope on a more cognitive level.
A special group is represented by parents with MS.3 A major concern for them is the effect that their illness may have on their children. This stress can be a factor in exacerbating parental illness, but there is little conclusive research on this population of children. Children with chronically ill parents have been described as constrained, depressed and antisocial. However, Blackford has found that these children are more empathetic and advanced in friendship concept development than the general population.3 Blackford concludes that more nursing research is needed in this area. Some of the mothers in our Finnish material also expressed concerns about their children:

"And then there are the children. At first I felt the family simply was not going to cope with this. I had always done everything for them and then suddenly they didn't dare ask me to do anything. The situation has steadied to some extent now, but I still feel I'm not a good enough mother for my children, they keep me wrapped up in cotton wool and try to please me. I wonder whether they will learn what real life is."

"I have two children, aged 3 and 5. At the moment they don't quite understand yet, but I wonder what it will be like in the future, what sort of picture they will get. I want to try and control this by thinking that in any case I am the best possible mother for them, no one can love them more than I do. That helps to calm me and makes me feel I am somehow in control. But the future makes me feel nervous, the thought that when the girls are grown up."

Little was mentioned about the biophysiological element. In the biophysiological element the patients rely on medication for symptom control.

How to Support

The participants in this survey seemed to be satisfied with the support given by professionals (Table 1). This is consistent with the results of satisfaction studies in general and in other clinical areas.26
The social component is again dominant in the patients' responses regarding sources of support. Reference is made to the importance of home help services, providing help for the spouse, having one's own doctor, training courses as well as the MS Association. However, the functional, ethical and economic components also play a role in supporting the MS patient. In the functional component the emphasis is on rehabilitation and technical aids. As for the ethical component, the patients would like to see more reliance, acceptance, listening and understanding - all elements of qualified nursing care.24

In the economic element, patients tell about the lack of money. It means that MS patients in Finland are deprived of several services and leisure activities. The same appears to be the case in many other countries as well.8,34 Catanzaro and Weinert, for instance, conducted a nation-wide survey in the United States with 604 families living with MS.8 Family income was well below the national median income. In their literature review, Catanzaro and Weinert say that much of the focus on the economic aspects of long-term illness has been directed toward the societal burden that results when a productive member of society is no longer able to continue usual work patterns. Far less is known about the economic impacts of MS on the individual family. Reports in the literature are based on data obtained 15 or more years ago, or are limited to a single population, such as a clinic or people living in a narrow geographic area.

Participants in a study by Hainsworth identified three important nursing roles, categorized as caring professional, teacher expert and competent professional.17 The caring professional is sensitive, respectful, nonjudgmental, accepting, tactful, patient, nonassuming, compassionate and positive. The teacher expert provides situation-specific information, practical tips for care and technical skills in a manner that is current, honest and understandable. Nurses who were knowledgeable and accountable, and who provided continuity of care, exhibited behaviors classified in the role of competent professional. These can also be identified in our Finnish material:

"It's also important that the nursing staff know how to work with this kind of patient, Sometimes you're crying all the time and for that reason nurses should be sensitive and also honest. At least I want to know what they know about me."

"A great deal of information is needed, at least in the beginning. There is never too much information and the nursing staff should always start from the assumption that at each stage new information is needed, the old information is of no use as the situation changes. This does not mean just handing out papers, no one wants to read papers."
Summary

Multiple sclerosis has different meanings to different people; coping strategies are also different. The evidence from this survey suggests that the most important element of how patients define the meaning of the illness, how they control their situation and what support they expect is represented by the social dimension. Indeed MS is a very social disease. This must he borne in mind in the planning, implementation and evaluation of nursing care. The key aspects within the social element are work and the patient's own family. At the workplace even limited opportunities can help the patient cope with the disease. However, it seems to be extremely difficult to provide such opportunities, particularly in the many countries where unemployment is at a high level.

Cognitive, ethical and economic aspects of empowerment seem to be less important to MS patients. However, all these elements involve certain problems of which nurses must be aware. The ethical element is very clearly related to professional nursing and supporting patients. The economic element, by contrast, is usually a broader issue and therefore, beyond the control of the individual nurse.

The population of this study was fairly small. However, the results are generally consistent with earlier findings and therefore probably provide a reliable picture of the patients' views. In Finland, there has been very little nursing research concerned with MS patients; for instance, there is not a single doctoral thesis on the subject. The present study provides an important basis for further patient-oriented research into MS nursing.

The data were collected by a questionnaire during a rehabilitation course. Open-ended questions were used for getting understanding on the meaning of health, control and need for support. Open-ended questions allowed patients' own descriptions. Some patients, however, answered with very short responses and on the surface level. It may be caused by difficulties in expressing thoughts by writing. In the future it is necessary to use different methods, like interviews and observations for a better understanding of the elements of empowerment. Especially important would be to concentrate on the dimension of support. Repeated data collection among MS population is also needed.

Patients' everyday practices and self-care activities are an important part of the nurse's work.22 It is therefore important that nurses have a close understanding of the thinking of MS patients and of how they see disease and that they can support patients toward greater empowerment. For this to be possible nurses cannot look simply at the present; we also have to understand the meaning of past and future.

In the future different nurses may have different roles in the care of MS patients.6,11 For example, the British Society of Rehabilitation Medicine suggests that primary health care workers, who are best placed to give day-to-day assistance, have little knowledge of MS.6 With this in mind, one hospital in Manchester, UK, set up a position of MS liaison nurse. The only way forward is to increase investment in development and research projects, to publish more and to increase the number of nurses with a special research interest in the care of patients with MS.

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Questions or comments about this article may be directed to: Helena Leino-Kilpi, Ph.D., R.N., Associate Professor, Head of the Department, University of Turku, Department of Nursing, 20014 Turku, Finland.
Eija Luoto is a Nurse Manager at Masku Neurological Rehabilitation Center in Masku, Finland.
Jouko Katajisto, M.S.S.C., is a Statistician in the Department of Statistics at University of Turku.
Copyright © 1998 American Association of Neuroscience Nurses. Copyright © 1998 Information Access Company