Self-care and multiple sclerosis: A view from two cultures

Sot. Sci. Med. Vol. 37, No. 3, pp. 315-329, 1993 Printed in Great Britain. All rights reserved

0277-9536/93 $6.00 + 0.00 Copyright 0 1993 Pergamon Press Ltd

SELF-CARE AND MULTIPLE SCLEROSIS: A VIEW FROM TWO CULTURES

JUDITH MCLAUGHLIN’ and IB ZEEBERG*

‘Department of Health Promotion and Behavior, Stegeman Hall, University of Georgia, Athens, GA 30602, U.S.A. and 2Neurological Department, Vejle Hospital, 7100 Vejle, Denmark

Abstract-The role of self-care in the management of chronic illnesses is essential to successful patient care. This paper compares and contrasts self-initiated self-care practices of 51 Danish and 35 American persons with multiple sclerosis at various levels of disability. Respondents were asked about ways they managed their symptoms and problems during periods of non-medical contact-including methods of following the medical regimen; alternative treatments; use of lay-referral systems; and, sources of information regarding physical, psychological, social, and environmental dimensions of coping with the illness. The two groups of respondents varied regarding adaptation strategies and primary sources of information used. The ultimate aim, however, of using these strategies was similar; to gain control over uncertainty, dependency, and physical and emotional decline. This study suggests that the empowering role of self-initiated self-care strategies in chronic illness may transcend differences in health care systems.

Key words-self-care, multiple sclerosis, adaptation, disability

INTRODUCTION

An ongoing interest in sociological and anthropological literature addresses issues pertaining to the lay referral system of health care [l-4]. This system is defined as the domestic, informal organization of health promotion, risk reduction, and disease management, and is sometimes referred to as the ‘hidden’ health care system [3]. Informal care givers within this system have been referred to as ‘hidden carers’ [5] and ‘natural health facilitators’ [6].

Self-care emerged as a growing social issue in the United States as the American health care system became increasingly technological, costly, and deper- sonalized in the last two decades [7]. Recently, self- care theorists have described the close relationship between self-care and health promotion [8,9] as well as the degree to which self-care is embedded in the matrix of cultural, social, and psychological factors that encompass the context of an individual’s specific situation [lo]. At the primary care level, studies indicate that the majority of activities undertaken by lay persons of self-observation, symptom perception, judgement of severity, and choice of treatment options are safe and relevant [ 111. Despite the variations in culture and accessibility of professional resources, research by social scientists of such cultures as the Danish [12], British [13, 141, and of Iranian, Salvadorian, and Vietnamese refugees [ 151 suggest that the majority of treatments for common, minor symptoms consists of self-care. On the other hand, recent studies have shown differences in attitudes toward self-care in different cultures, and among laypersons and physicians in the same culture [ 16, 171; findings of research in Israel indicate that self-care in health is not a particularly salient or widely advo-

cated behavior [17]. Thus, there is a need for comparative studies of self-care.

Self-care generally emphasizes activities to cope with illness as well as a range of health-related behaviors essential to general well-being [lo, 181. Self- care in chronic illness may be defined as the range of individual behavior involved in symptom recognition and evaluation, and decisions regarding symptom responses, including decisions to do nothing about symptoms, to treat the symptoms by self-determined actions, or to seek professional advice. It is viewed as essential to successful management of illness and the avoidance of incitement or aggravation of symptoms. However, it is often viewed by health professionals as compliance with the prescribed medical or treatment regimen [18, 191. Connelly stresses the difficulty of associating prescribed treatment recommendations with outcomes or health status, since many studies have found that patient adherence did not necessarily result in achieving treatment goals, and others find that some patients who are only partially compliant appear to improve (181. Self-care in illness appears to involve many facets of individual behavior influenced by one’s social, economic, political, and cultural environment.

While a burgeoning literature describes teaching of self-care activities to persons with various chronic illnesses, a few studies characterize lay-initiated self- care practices of those with chronic health problems. Thomas and Morse [20] and Klem and Creason [21] describe self-care practices of persons managing urinary incontinence. Conn [22] outlined the most common self-care actions for joint symptoms among independently living older Americans, and found that they were different from those ordinarily prescribed in the professional literature. Coulton et al. [23]

315

316 JUDITH MCLAUGHLIN and IS ZEEBERG

studied self-care and medical care practices for joint symptoms of three ethnic groups, and found that use of both practices as well as health care seeking behavior were influenced by ethnic group. They also suggested that there was no evidence that self-care in illness served as a substitute for medical care, a contention of other researchers [24].

Changes in disease and health care are central factors in increasing the importance of self-care in the management of chronic illnesses, and also in raising public and professional consciousness regarding the role and potential of self-care. Forty years ago, 30% of all diseases were chronic in nature [3]. Today, according to national statistics chronic disease is the most prevalent form of illness in the United States and all industrialized countries [25].

Multiple sclerosis

The management of chronic long-term condition such as multiple sclerosis (MS) significantly alters everyday behavior on a continuing basis. MS typically strikes adults between the ages of 20 and 40 years, a period in people’s lives associated with initiation of a career, establishment of intimate relationships, and inception of childbearing and child rearing. The illness damages the myelin sheath that surrounds and insulates nerve fibers of the central nervous system, delaying or blocking nerve signals. The nature and severity of symptoms that may present themselves in an on-again off-again manner, vary widely, and outcome in individual cases cannot be predicted. However, the outcome is rarely fatal and most are not severely disabled. The illness tends to conform to one of four types. About 20% of persons will have a benign form, with few exacerbations and complete or nearly complete remissions. A relapsing/remitting form is similar to the benign form except exacerbations include more severe symptoms; it accounts for about 25% of persons. Forty percent will experience a relapsing/progressive form, characterized by defined attacks and incomplete re- covery from such episodes. Only about 15% experience a slowly progressive disease without remissions

P61. Palliative treatments exist, but for the most part

persons with multiple sclerosis are left with problems adapting to their condition. Individuals and their families must adapt their lifestyle and daily social functioning to a less-than-normal health status. Chronic conditions can be. very intrusive into people’s lives. Problems of coping with illnesses such as MS include the management of medical crises, execution of the regimen, control of symptoms, management of anxiety and depression about new symptoms, the reordering of time, the management of social isolation, assessment of vocational status, and the management of often changed relationships with family members.

Health professionals should be aware of coping behavior that occurs during periods of non-medical

contact. Because of the unpredictable and ambiguous nature of MS, optimal health care should focus on the whole person with routine attention given to the interrelatedness of the behavioral, psychological, sociological, environmental, and spiritual aspects of coping with the illness as well as to the neurological management. Indeed, there is a growing consensus that self-care in persons with MS, away from hospital and medical care providers, is of utmost importance.

There is a growing literature on patients’ experiences with and views about treatment. For example, Deaton’s study of pediatric asthma patients [27], Conrad’s study of persons with epilepsy [ 191, and Bellisari’s study of persons with cystic fibrosis and their families [28] indicate that such factors as evalu- ations of therapeutic efficacy, the impact of therapeutic costs on the family’s quality of life, destigmatization, and self-regulation are important considerations from the patient’s point of view, and that clinical professionals should understand the meaning of treatment regimens in people’s everyday life. Wynne and Monks’ study of how persons with MS decide to continue hyperbaric oxygen therapy or not illuminated the ways decisions concerning therapy are made. Patients appeared to perform their own investigation into the efficacy of the therapy, as well as judge the therapy’s effect on others with MS that they knew [29].

Levin and others have proposed that increased self-care competence can result in a more appropriate use of health professionals, optimizing the benefits of available professional resources [3, 11,251. The professional sector can offer supportive therapy but for the most part the person must adapt, using personal and family resources, to the myriad problems and challenges of daily living, as well as to the uncertainty of prognosis.

Cultural contexts of chronic illness and disability

In order to understand self-care as a coping behavior of any group, it is important to look at how a cultural ideology influences the group’s health care system and policies, which in turn can influence how easy or difficult it is to cope with an illness such as MS. Danish cultural ideology has been described as including the values of egalitarianism, inclusion, co- operativeness, and concern for the individual [30]. These characteristics are embodied in its social welfare state. The Danish willingness to give priority to intangibles such as social welfare contrasts with current trends in the United States. In government, business, and in environmental and social action groups, many social programs in the United States are being sacrificed to the American bottom-line approach [31]. Although Danes complain about high taxes, the use of the term ‘welfare state’ to refer to basic institutions and values in Denmark is mislead- ing. In American culture, welfare is closely identified with welfare programs that aid the poorest social

strata. Most Danish welfare state programs-

Self-care and multiple sclerosis 317

education, health, old age pensions-are available at almost no charge to everyone. In contrast, American welfare programs are widely viewed as institutionalized charity.

State welfare programs in Denmark, including health care, are recognized as social rights to which an individual is entitled, and are viewed as increasing, rather than decreasing, individual freedom. The na- tion also possesses exceptional ethnic and cultural homogeneity, which minimizes alienation from the state and facilitates consensus on social policies [32].

The style of Danish welfare focuses on the individ- ualization of care. The family physician is the first level in the primary health care system, similar to the United States. A person suspected of having a serious illness such as MS is sent into the hospital for further diagnosis and treatment by a specialist. Physician services and hospital care are provided through taxa- tion to every citizen; the Danish ‘lov om social bistand’ (social assistance act) provides additional benefits to disabled persons. Once the diagnosis of multiple sclerosis is made, the person applies to his or her local social service office where an overall evaluation based on the person’s disability status, living situation, and family membership is made. Evalu- ation for benefits is independent of the person’s economic situation [33].

This contrasts greatly with the U.S. system, where eligibility for programs and services is a major con- sideration. Eligibility is based on financial as well as physical considerations, and must be investigated on an individual case basis. Disability determination itself can be lengthy, difficult, and require consider- able documentation. Also government and medical assistance programs, as well as community and vol- untary services, vary considerably from area to area

1341. In the Danish System, those who own their own

homes or rent an apartment, and are confronted with a disabling condition such as MS can apply for an interest-free loan to make such improvements as widening doors to accommodate a wheelchair. For those who must move to a barrier-free residence, the community agency makes the effort to find and subsidize other housing; some buildings have apartments specially designed for the disabled, while other buildings are designated as being entirely for disabled. This special housing is subsidized and is suit- able for individual or family living. Nursing homes may be necessary for those who need constant care or who are extremely disabled or paralyzed, and this is also subsidized. Every effort is made to keep the person in his or her home situation with needed equipment, meals, day help or 24-hr home nursing care, child care, and home cleaning for as long as possible. The community agency will provide employer incentives to change the employment situation of the person with MS. Modifications at the work site can be made to increase accessibility or safety, and the social security act will provide funds to retrain a

person for another job if necessary. The act also provides funds for taxi use, car modifications, and other aids. If the occupational ability is reduced or job retraining is impossible, the Social Security Act provides an ‘invalid’ pension, and the amount is based on the degree of disability. If the disabled person receives little income from any source besides the ‘invalid’ pension, he or she can get such extra allowances as: (1) allowance for home care; (2) allowance for nursing care; (3) allowance for special personal situations not covered in the above pensions. These pensions and allowances are given in addition to other pensions, such as a widow/widower pension. The Social Security Act also provides 80% of the cost of physical therapy and occupational therapy, as well as 80% of the cost of recreational activities [35].

America is immensely more populous, hetero- geneous, individualistic, and complicated than Denmark. Analyses of works on American culture reveal common characterizations, including the importance of work, success, achievement, and the significance of the self-reliant individual as key factors in American life [36,37]. Individualism is a major focus in many current writings. Slater maintains that the growing bureaucratic concentration of government and private enterprise has moved the American culture toward a bottom-line mentality in the 1980’s, a factor contributing to the rift between the haves and the have-nots [38]. Further, the American ideology of individualism also contributes to the general convic- tion that Americans bear the responsibility for their own health, and have the right to choose their health services freely [25]. Many Americans shrink from ‘welfare state’ policies for many reasons. They fear that birth-to-death security will reduce competition and discourage risk-taking. High taxes not only cut into venture capital, but reduce the individual’s desire to work and his or her choices in the spending of his or her income. A common belief is that a large social role for the government will discourage individual creativity and promote national uniformity. There has been a move away from ‘paternalistic’ government programs [39].

In many ways it is more difficult to have a disease such as MS as an American. The United States’ health care system, one of the best in the world for acute or short-term illnesses, falls short of meeting many of the multiple needs of the chronically ill. With some exceptions, financial aid is lacking; services conflict, overlap, or have been cut; and many persons do not qualify for home health care. Counseling for the ill and for their families is not usually covered by insurance, and therefore may not be available [25].

American social stratification has furthered a two- tiered system of health care, but a chronic illness such as MS can result in economic catastrophe even for those with comfortable incomes. Moreover, people may not have savings, and they may lose their jobs

318 JUDITH MCLAUGHLIN and IB ZEEBERG

because of their disability or because of covert preju- dices of an employer. People who lose their jobs may therefore also lose their health insurance, or they may lose it anyway. Others have no health insurance at all, or not enough [25].

Even though both Denmark and the United States utilize a Western bio-medical approach to health care and rehabilitation, the system of funding for each is quite different. Given the fact that costs for health care in Denmark are subsidized, and that funding for chronic illness in the United States is born by individuals or their insurers, one would expect that self-care practices are more prevalent in the U.S. than in Denmark. The report that follows compares the extent of self-care behaviors of groups with MS in Denmark and in the United States. Danes and Americans who have multiple sclerosis were asked how they adapted to the illness during periods of non-medical contact. In particular, respondents were queried regarding how they carried out the medical regimen, alternative therapies and diets they may have discovered, how they modified their physical environment, how they coped with fatigue, how they maintained their mental health in the face of isolation and depression, changes experienced in body image, and fears they had about the possible progression of the illness and the future.

RESEARCH STRATEGY

The purpose of this cross-cultural, ethnographic study was to determine the extent and reasons behind self-care practices among groups of MS patients in Denmark and in the United States. Data collection occurred in Denmark between January 1979 and July 1980, and again in July through September 1982. The Danish study was housed at the University of Copenhagen’s Institute of Social Medicine and at the Kommune Hospital, Copen- hagen. Data were collected from Americans with MS from March 1983 to September 1988. As a qualitative study [40], it emphasizes the description of behavior and the generation of empirically grounded hypotheses rather than the rigorous testing of a priori explanations [41]. Our goal was not to establish likely frequencies in a representative population, but rather the discovery and understanding of the range and variety of self-care behaviors, as well as to compare and contrast the reasons for and determinants of self-care from the perspective of the person with MS. The principal data collection techniques were participant observation, semi-structured interviews and structured interview- ing using the Self-Care Behavior for Multiple Sclerosis (SCB-MS) Inventory developed for the study [42].

The SCB-MS inventory had originally been developed using grounded theory methods [43] by asking open-ended questions to learn the most prevalent

symptoms and the universe of self-care behaviors for various symptoms of MS. The inventory is a content valid assessment inventory designed to obtain information on twelve areas of coping with MS: backache, weakness of limbs, fatigue, visual disturbance, bowel and bladder problems, loneliness and alienation, depression, changes in diet, changes in living space, changes in employment, changes in the marital relationship, and changes in religious beliefs. Respon- dents were asked what self-care behaviors were utilized, how the behaviors were carried out, who performed the behaviors, where or in what setting the behaviors took place, what source of information for various behaviors, and where or under what circumstances the respondents performed the behaviors. The inventory was useful in the present study for cata- loguing responses for comparative purposes. In order to understand the meaning of self-care to the persons with MS, as well as why they undertook it, a semi- structured interview schedule of open-ended questions was used. To the extent possible, researchers observed respondents during therapy sessions and at home with their families. Supplementary data were utilized from the Danish National Multiple Sclerosis Registry and from interviews with patients’ physicians.

Data analysis strategies included the compilation and comparison of frequency data of both groups from the inventory. In addition, content analysis of answers obtained from the open ended questions was accomplished using the qualitative strategies of Glaser and Strauss [43,44].

The interviews, which were between l/2-5 hr dur- ation, occurred in participants’ homes or work places. In the U.S., interviews were conducted by the first author. In Denmark, interviews were conducted in Danish by a trained interviewer who was also fluent in English, or, alternatively, in English by the first author if the respondent preferred. All interviews were tape-recorded and transcribed with respondents’ permission.

Composition of the study groups

The Danish sample consisted of 51 persons with multiple sclerosis in various states of disability [45]. All were Danish citizens between 22 and 58 (mean =40.8; SD = 7.5) years of age, with 60% females and 40% males comprising the study group. Sixty-two percent were married, 26% were divorced, and 12% were never married. Fifty-one percent were employed, mostly in professional, skilled, or semi-skilled occupations. Most (71%) lived in the city of Copenhagen or its environs, while the remainder lived in or near the city of Aarhus (20%) or other areas (9%). Most lived in homes or apartments which they owned (82%) while others lived in rented apartments or rooms (1 SO/,). Sixty-five percent lived with a spouse, partner, parent, or children, while 35% lived alone. Sixty-eight percent were ambulatory, or mobile with walking aids (27%) or a


wheelchair (25%). Respondents reported they had lived with MS for 3-18 years (mean = 11 years). Difficulties of transportation or home help were rarely mentioned by Danish respondents, since ve- hicle modification, taxi use, and home help are all subsidized by the social welfare system.

The American sample consisted of 35 respondents. Fifty-five percent were females, 45% were males, and ages ranged from 19 to 65 (mean = 42.4; SD = 9). Most respondents were white (91%) 9% were black. Fifty-three percent were married, 3 1% were divorced or widowed, and 16% were never married. Fifty- seven percent were employed in professional or ‘white collar’ occupations (55%), skilled ‘blue-collar’ occupations (30%) or unskilled occupations (IS%), on at least a part-time basis. Eighty-five percent of the respondents lived within 100 miles of the Atlanta area, while the remainder resided in North Georgia (11%) or other areas (4%). The majority lived in their own homes (69%) while others lived in rented accommodations (20%) or in their parents’ homes (11%). Eighty-one percent lived with a spouse, partner, parent, or children, while 19% lived alone. Sixty-five percent were ambulatory, or mobile with walking aids (25%) or a wheelchair (21%). The majority (59%) mentioned problems with obtaining transportation for such events as medical appoint- ments, while the remainder (41”/) were able to drive, in some cases with modified vehicles. Respondents in both groups were solicited from support groups, physician referral, and word-of-mouth information. All respondents voluntarily participated and are not necessarily representative of similarly disabled people.

Research questions

Interviews addressed the following research questions:

To what extent do respondents practice self-care behavior?

What are the most common behaviors regarding the physical, psychological, environmental, and spiritual aspects of coping with the illness in the two groups of respondents?

What reasons are given by respondents with MS for using self-care skills?

From which sources does the knowledge of self- care practices come?

Do Americans when compared with Danes differ regarding the reasons, extent, variety, and sources of information used regarding self-care behaviors?

RESULTS

Frequency of self-care practices

Both cultural groups practiced a range of self-care behaviours that varied greatly from individual to individual. Areas of coping most frequently noted and for which self-care behaviors were utilized most often were fatigue, weakness of limbs, depression,

SSM ,713-n

changes in living environment, loneliness or alienation, backache, changes in diet, changes in employment, bowel or bladder problems, and vision problems. Data collected on changes in the marital relationship and changes in religious beliefs will be reported at a later date. Table 1 summarizes the percentage of person in each sample who engaged in one or more self-care behaviors related to each of the ten problem areas. The most common self-care behaviors were in response to fatigue, weakness of limbs, and depression. Comparisons between the two samples show relatively few differences in terms of the ten general problem areas (Table 1). The percentages of Danes and Americans in this sample engaging in behaviors to cope with the various problem areas were significantly different only for weakness of limbs (x2 = 23.84, df = 1). Ninety percent of Danish respondents who reported having weak limbs actively coped using self-care practices, as compared to 74% of American respondents. A Danish respondent explained:

Everybody has been helpful in helping me deal with my weak legs, my physician and all my therapists. I fall easily because I lose my balance. I asked my physiotherapist ‘how’ to fall. The trick is to let yourself relax and drop. .

Fatigue. The fatigue associated with having MS was described by most respondents as overwhelming. Fatigue is a special problem for people with MS and is frustrating because there are not necessarily any physical signs of it; fatigue is often invisible to family and friends. Respondents noted, however, that it can be severely disabling.

The most frequent self-care practices for both Danes and Americans in the study groups (Table 2) were learning to recognize one’s limits, planning activities when one has the most energy, organizing the home to conserve energy, and resting. There were, however, notable differences in the frequency of various behaviors used to cope with fatigue. Americans in the sample used a variety of coping measures, while Danes stayed with one or two practices they believed worked for them. For example, 78% of American respondents delegated household duties, while 47% of Danish respondents did so. This might be explained by the availability of household

Table 1. Percentages of persons with MS in each group who engaged in self-care behaviors

Danes (51) Americans (35)

Problem N % N %

Episodes of fatigue 4s 88 32 91 Weakness of limbs* 46 90 26 74 Episodes of depression 36 69 30 85 Changes in living environment 40 78 25 71 Loneliness or alienation 35 69 21 60 Episodes of backache 31 61 20 57 Changes in diet 32 63 I8 51 Changes in employment 26 51 20 57 Bowel or bladder problems 12 24 15 43 Vision problems 13 25 I 20

*x2 value for weakness of limbs was 3.84 (d/= 1). x2 values for remaining behaviors were non-significant.


Table 2. Patients’ responses to episodes of fatigue

Category

Da”eS Americans

N %* N % * Total = 45 of 51 88 Total = 32 of 35 9 I

Learn to recognize limits Plan most active hours when

have the most energy Organize my home Rest Delegate Household Duties Sleep regular hours and do

not stay up late Undertake prolonged tasks

in steps Use cane or wheelchair to

conserve energy Take medicine Take as much physical

activity as I can Avoid pushing self to

exhaustion Avoid stress No action Contact physician

33 73

31 69 31 69 23 51 21 41

21 47

19 42

I4 31 12 27

9 20

4 9 I 2 5 II I I6

30 94

30 94 31 91 31 91 25 78

26 81

23 72

18 56 I5 47

I7 53

25 78 8 25 4 I3 8 25

*Percentages have been rounded.

help provided by the social welfare system to Danish citizens who need it. Other differences include: 81% of American respondents make an effort to sleep regular hours and not stay up late, as opposed to 47% of Danish respondents; 72% of Americans undertake prolonged tasks in steps, in contrast with 42% of Danes; and 78% of Americans avoided pushing themselves to exhaustion, whereas only 9% of Danes did so. Americans, in general, had read patient education books and other literature written by physicians, and appeared to be well informed on suggestions for coping with fatigue and other problems.

More Americans (56%) than Danes (31%) in the study used a wheelchair to conserve energy. A Dane explained: “I don’t want people to look at me and feel sorry for me.” Some American respondents expressed the same feelings but said that the wheelchair or motorized scooter made more activities available to them. An American said: “ My wheelchair enables me to get out more, meet more people, shop longer, and tire less easily”.

Additionally, 53% of American respondents engaged in physical activity as a way to cope with fatigue, as opposed to 20% of Danes in the study. This may reflect the fact that Danes exercise for reasons other than fatigue, as well as the recent widely publicized energizing effects of exercise in the American lay press. More Americans (47%), than Danes (27%) in the study, took medication prescribed by their physicians to relieve their fatigue. This may be related to a generally more conservative approach of Danish respondents’ physicians as well as Danish respondents’ attitudes about taking drugs. This Dane’s explanation was typical: “I don’t take more drugs than is necessary. I don’t like the side effects.”

Of the respondents, 13% of Americans and 11% of Danes took no action for some episodes of fatigue;

25% of Americans and 16% of Danes contacted their physicians, in most cases because of the degree of disability caused by the fatigue episode.

Weakness of limbs. Loss of strength and endurance is a prominent manifestation of MS that can be sudden and extensive, or gradual and continuing. For respondents in this study weakness varied among upper and lower extremities at different times of the illness.

When arms, legs, or hands are weakened by MS, 80% of American respondents and 63% of Danish respondents wear clothing that is easy to manage (Table 3). In addition, 50% of Danes and 35% of Americans use special leg braces; 50% of Danes and 46% of Americans use walking canes to aid ambu- lation. American respondents obtained physiotherapy for limb weakness more often than did Danes (73% vs 43%), but this may reflect the ready availability of this specialist to the Americans with MS in the sample rather than other reasons:

My neurologist prescribed treatment by a physical therapist to counteract the weakness in my right leg. My insurance policy paid for it so why not?

and

The physical therapy department was right in the same building as the doctor, so I could combine two trips.

American respondents also rearranged their living environment to prevent falls more often than did Danes (65% vs 43%). This practice is often shared through books and support groups which Americans were more likely to avail themselves of than Danes in this sample. An American respondent explained:

In my group, I heard about a way to prevent falls when my legs are weak. I place my furniture so I can grasp it for support when I walk through a room. That way I can move faster and not have to use crutches.


Table 3. Patients’ response to weakness of limbs

Americans used medications more often than did Danes (38% vs 13%). Other responses for weak limbs included obtaining massage (D = 26%, A = 34%), using an appliance to fasten clothing (D = 22%, A = 27%), using a wheelchair (D = 22%, A = 23%), using home exercises (D = 6%, A = 8%), and using appliances to make eating easier (D = 6%, A = 12%). None of the respondents reported ‘no action’ as an alternative to limb weakness, and 13% of Danes and 19% of American respondents contacted their physician for this problem.

Category

DaneS Americans

N %* N % * Total=46 of 51 Total = 26 of 35 74

Wear clothing that is easy to manage

Use special leg braces Use canes or sticks Obtain physiotherapy Rearranged living environment

to prevent falls Obtain massage Use appliance to fasten clothing Use wheelchair Use specific home exercises Take medicine Contact alternative health

care provider Use appliances to make

eating easier No action

29 63 20 80 23 50 IO 38 23 50 12 46 20 43 19 73

20 12 IO 10 IO 6

43 26 22 22 22 13

17 65 9 34 7 27 6 23 3 12

10 38

3 6 2 8

3 6 0 0

3 12 0 0 5 19 Contact physician 6 13

*Percentages have bee” rounded.

Depression. Depression and/or grief that encom- passes many different psychological states is common with MS. Some depression episodes may be grief reactions to the illness, or it may predate MS. In some cases, it may be associated with personality changes associated with brain lesions. Exacerbations of the illness can be extremely stressful, and normal grieving may occur when the person’s condition changes or when disability increases.

For respondents with depression, the most frequently cited self-care options were talking with someone about their problems, making an effort to go out and be with people even though they do not discuss their problems, keeping their sense of humor, filling their time with tasks, activities, and hobbies, trying to forget problems, and trying new things rather than giving up (Table 4). American respondents also listed “avoiding fatigue” as a coping device more often than did Danes (53% vs 1 l%), which may reflect more understanding of the role of fatigue in contributing toward depression, as this American noted:

When I get too far beyond my limits, I get over-tired, and when that happens I get depressed. I try to avoid fatigue because I feel overwhelmed and out of control.

Danes were more likely than Americans to contact their physician (42% vs 17%), whereas Americans were more likely than Danes to utilize meditation,

Table 4. Patients’ resoonses to eoisodes of deoression

Category

Talk with someone about problems

Make a” effort to go out, eve” if don’t talk about problems

Keep my sense of humor Fill time with other tasks;

activities, hobbies Try to forget problems Try new things rather than

giving up Participate in exercise Try meditation, yoga, or

mind relaxing exercises Avoid fatigue Contact alternative health

care provider No action Contact uhvsician

Danes Americans

N %* N % l Total = 36 of 51 69 Total = 30 of 35 85

31 86 26 a7

29 81 21 70 27 75 21 70

27 75 23 77 23 64 21 70

18 50 22 73 14 39 10 33

4 II 14 47 4 II 16 53

2 6 4 13 2 6 1 3 5 42 5 17



yoga, or mind exercises to cope with depression 20% of Americans took no action for their back- (47% vs 11%). For example, a Danish respondent aches, while 16% of Danes and 35% of Americans said: contacted their physician.

My physician is the only one I can discuss my feelings with. My family does not want to discuss this at all, nor do I want to depress them.

and an American said:

I just can’t talk with my doctor about depression. He prescribed a drug for it. I read about it in a book on stress, and am now trying to use affirmations, which I think help me feel better.

One notable difference between the two groups was in the use of medications; 50% of Americans took both prescription and over-the-counter drugs to control backache while only 11% of Danes used medication. American respondents more commonly emphasized the normality of drug-taking behavior:

When I get a backache or a headache, I just take an aspirin. If it doesn’t go away I take two more aspirins.

and another American said:

My doctor is very caring and concerned, but doesn’t have time to deal with my anxious feelings. He sent me to a psychologist, who has been very helpful.

Over-the-counter medications are not available in Denmark, a possible reason for their infrequent use among Danes.

Other mechanisms for coping with depression listed by both groups were participating in exercise (D = 39%, A = 33%) and contacting an alternative health care provider (D = 6%, A = 13%). Six percent of Danes and 3% of American respondents took no action.

Changes in diet. There have been a variety of diets proposed for the treatment of MS, but to date no diet has been systematically studied to support or refute its claims. Nevertheless, respondents had tried various diets and supplements in the hope of interrupting the progress of the illness.

Backache. People with MS do not necessarily have back pain from the illness itself. Rather, it may be secondary to spasticity, posture, or coordination difficulties, or because of disuse during a relapse. Nevertheless, 61% of Danes and 57% of Americans associated episodes of backache with MS.

For backache, 50% or more of respondents in both groups avoided stooping and lifting movements and used a heating pad (Table 5). Additionally, 53% of Danish respondents and 40% of American respondents had contacted a non-allopathic practitioner such as a chiropractor for treatment of back problems. An American explained:

The majority of individuals in both groups who had changed their diets noted that they now eat a balanced diet, use a diet low in animal fat, and high in polyunsaturated fatty acids, have decreased their intake of alcohol, and take a vitamin or mineral supplement (Table 6). Less commonly reported changes were using linoleic acid supplements (D = 27%, A = 22%), and using a gluten-free diet (D = 20%, A = 11%). Seven percent of Danish respondents reported an increase in alcohol consump- tion because they believe it lessened their anxiety. None of American respondents reported this, and in fact most respondents decreased their alcohol intake since for most individuals queried alcohol worsened an already shaky coordination.

With all the other problems I’m having, my chiropractor makes me feel better after my treatment. It doesn’t stop the illness but at least I feel better.

Other respondents included obtaining massage (D = 42%, A = SO%), staying at home, but not in bed (D = 42%, A = 20%), staying in bed (D = 37%, A = IS%), and swimming or other exercise (D = 16%, A = 25%). Eleven percent of Danes and

Changes in employment. Fifty-one percent of Danes and 57% of Americans were employed at the time of the study. Most respondents in both groups who were employed had adjusted their working hours to take advantage of their most productive time of day, had made modifications of the tools they use or the position in which they work to accommodate their degree of health, or allowed time in the day to rest

Table 5. Patients’ self-care responses to episodes of backache

Danes Americans

N %* N % * Category ,’ Total=31 of 51 61 Total = 20 of 35 57

Avoid stooping and lifting movements 24 79 15 75

Use heating pad 24 79 13 65 Contact non-allopathic

practitioner 16 53 8 40 Obtain massage 13 42 10 50 Stay at home, not in bed 13 42 4 20 Stay in bed 11 37 3 15 Go swimming or other exercise 5 16 5 25 Take medicine 3 11 IO 50 No action 3 11 4 20 Contact ohvsician S 16 7 35

*Percentages have been rounded


Cateaorv

Table 6. Patients’ responses to changes in diet

Danes Americans

N %’ N % * Total = 32 of 51 63 Total = 18 of 35 51

Eat a balanced diet now Use diet low in animal fat Decreased intake of alcohol Take vitamin and mineral

supplement Use linoleic acid supplements Use a gluten free diet Increased intake of alcohol

28 87 16 89 26 80 14 78 21 67 15 83

21 67 16 89 9 27 4 22 6 20 2 11 2 7 0 0


even for short periods (Table 7). Additionally, 60% of American respondents, some of whom noted they had benefitted from National Multiple Sclerosis Society’s career training courses, had organized their work space to conserve energy. Other responses included delegating tasks (D = 3 I%, A=45%), changing to a less demanding job (D = 15%, A = 20%), and working at home (D = lS%, A = 20%).

Bowel or bladder problems. MS is responsible for several problems related to urinary functioning, such as frequency, urgency, and hesitancy, among others. The illness MS causes incontinence in some persons, and can be responsible for depression, withdrawal from others, fear of traveling, and loss of confidence. This problem prompted respondents in both groups to locate and/or use the toilet at places they go immediately when they arrive, to limit fluid intake before going out, to wear rubber undergarments or pads to minimize accidents (Table 8). Additionally, the majority of American respondents took medication for this problem (53% vs 25% of Danes), and had learned to recognize symptoms of urinary tract infection to avoid dangerous complications (67% vs 25% of Danes). These figures may have changed as more neurologists recognize the patient’s role in self-management and as bladder problems are more adequately handled by intermittent catheterization and medication. Individuals share their information in support groups, as this American respondent said:

I heard you could keep a two-week record of the time, amount, and kind of liquid you drink and see the effect it has on you, then you can change your habits and avoid those things that cause problems, which for me is coffee.

Another response was wearing a catheter or a bladder bag (D=O%, A = 7%). Thirteen percent of American respondents and 8% of Danes took no action while 13% of Americans and 13% of Danes contact their physician for episodes of this problem.

Vision problems. Diplopia, scotoma, and tempor- ary blindness are problems that afflict some persons with MS. Most respondents who were affected in both groups coped by organizing their home so they know where things are, and utilized mechanical devices such as typewriters or tape recorders for writing and reading (Table 9). Others, 38% of Danes and 42% of Americans, used a plastic shield over one eye to aid problems with double vision. Additionally, a majority of Americans (57%) took medications for eye problems as opposed to 15% of Danes, whose health care system appears to be more conservative in medicine-taking and prescribing than that of the United States. In fact, only 23% of Danish respondents in the study contacted the physician for repeat episodes of visual problems as opposed to 42% of Americans. A Dane said:

My episodes of double vision come and go. I use a plastic shield and it helps. There’s no reason to see my doctor for this unless it gets worse.

Changes in living environment. Weakness, spasticity, and coordination loss can cause difficulty walking

Table 7. Responses to changes in employment

Category

Danes Americans

N %+ N % * Total = 26 of 51 51 Total = 20 of 35 57

Adjusted working hours to take advantage of most productive time of day

Made modification in tools used or position in which I work

Allow time in day to rest Have organized work space

to conserve energy Delegate tasks Changed to less

demanding job Work at home Stay at home

20

16 16

10 8

4 4 4

77 10

62 12 62 13

39 12 31 9

I5 3 I5 4 15 3

50

60 65

60 45

15 20 15



Table 8. Patients’ self-care responses to bowel or bladder problems

Cateeorv

Danes Americans

N %* N %* Total = 12 of 51 24 Total = 15 of 35 43 -~ -s-~.

Locate toilets when going out IO 83 15 100 Limit fluids before going out IO 83 13 87 Wear rubber undergarments 5 42 5 33 Use toilets immediately when

I arrive at destination Take medicine Recognize symptoms of

urinary tract infection Wear catheter or other

medical device No action Contact physician

5 42 10 61 3 25 8 53

3 25 10 67

0 0 I 7 I 8 2 13 4 33 2 13


and using the hands for persons with MS, resulting in problems with the activities of daily living.

The majority of respondents in both groups had remodeled their existing living space to accommodate their degree of disability, rearranged furniture in order to move about easily or for ease in cleaning, organized possessions to reach them easily, removed area rugs to prevent falls, and installed safety bars in the bathroom (Table 10). Also, 80% of Danes had moved to a house or flat on the ground floor, or to one with a lift, whereas only 8% of Americans had done so. Housing to accommodate an individual’s degree of disability is subsidized in Denmark, while American respondents were more likely to adapt current housing to their needs, since housing for the disabled is not ordinarily available. Another difference. between the groups was the installation of safety bars in other areas of the home, with 40% of Danish respondents taking advantage of their government’s provision for this. Sixteen percent of Americans had done so, though it is not subsidized.

Asking for help with things they could no longer do was listed by 36% of Danes and 24% of Americans. Four percent of Danes had acquired a portable toilet, although none of the American respondents had. A special bed had been obtained by 8% of Danes and 4% of Americans.

Loneliness or alienation. Family upheaval and shifts in personal relationships with partners, family and friends is commonplace with MS. If there is easy fatiguability or problematic disability, this may limit

sociability with others. The interpretation of out- siders’ attitudes toward one’s physical disability can also cause great anxiety and minimize a desire for contact with other people.

To cope with loneliness or alienation, the majority of respondents in both groups said they participated in group activities with other persons who have MS (Table 11). For Danes, this primarily took the form of activity groups, where participants rode horseback, swam, and traveled together. Support groups were less widely available and/or utilized. Conversely, Americans described their major group activities as mutual aid groups, whose members provided support, encouragement, and information to each other. Both groups believed their respective group activities helped them alleviate feelings of aloneness or alienation. A Danish respondent said: When we go on trips together, we are able to joke and have a good time. An American respondent said: “There’s a lot you don’t have to explain to another person with MS. They understand many of your feelings and try and accept you. They listen to you.”

There was a great difference among the two groups regarding talking with a spouse or another person with 90% of American respondents answering that they found this an effective coping mechanism, while only 43% of Danes did so. There is a possible cultural explanation for this, because Danes in the sample denoted an unwillingness to express their negative feelings, a factor commented upon by other social

Table 9. Patients’ responses to vision problems

Category

Use plastic shield on one eye

Learning to use typewriter and/or tape recorder

Organize home so I know where things are

Take medicine Contact alternative health

care provider No action

Danes Americans

N %* N % l Total= 13 of 51 25 Total = 7 20

5 38 3 42

5 38 6 86

5 38 6 86 2 15 4 57

1 8 0 0 2 15 2 29

Contact physician 3 23 3 42

*Percentages have been rounded


Table 10. Patients’ reswnses to changes in living environment

Category

Danes Americans

N %* N % l Total=4Oof 51 78 Total = 25 of 35 71

Moved to a house or flat on ground floor or one with a lift

Remodeled existing living space to accommodate my degree of health

Rearranged furniture to move easily and clean easily

Have removed area rugs to prevent falls

Have organized possessions so I can reach them easily

Have installed safety bars in bathroom

Have installed safety bars in other areas

Have learned to ask for help with things I cannot do

Have obtained a special bed Have acquired a portable

toilet

32 80

32 80

32 80

24 60

22 56

22 56

16 40

14 36 3 8

2 4

2 8

20 80

23 92

18 72

23 92

I5 60

4 16

6 24 I 4

0 0


scientists [ 15,201. The spouse of a Danish respondent explained:

The illness is always there. Its presence is always there but we don’t talk about it. We don’t want to dwell on it and make it worse than it already is.

Another difference among the two groups was noted in the response item: “I try to understand more about my illness by reading and talking to others about it.” Seventy-one percent of Americans listed the response as a way to cope with loneliness and isolation, while 37% of Danes did so. The use of information sources by American respondents may reflect the consumer movement in the United States with its emphasis on learning as much as possible about one’s illness.

Other less frequently mentioned responses to depression were supporting research to find a cure

and/or treatment for MS (D =43%, A = 33%), learning to view canes and other walking aids as a way to greater mobility and independence (D = 31%, A = 38%), traveling (D = 29%, A = 43%), joining a sports group (D = 1 l%, A = lo%), and joining a hobby group (D = 1 l%, A = 23%). Eleven percent of Danish respondents and 19% of American respondents occasionally took no action to cope with loneliness or isolation.

Additionally, 43% of Danes contacted their physician to help them deal with feelings of alienation and loneliness, whereas only 23% of Americans did so. A Dane clarified a possible reason:

I can’t discuss it with my family, my doctor is the only one that listens to me. It’s all right to talk about it with the doctor but no one else.

Table I I. Patients’ responses to episodes of loneliness or alienation

Category

Participate in group activities with other patients

Talk about it with my spouse or other persons

Support research to find cure/ treatment for my illness

Try to understand more about the illness by reading, talking

Am learning to view canes and other aids as a way to greater mobility and independence

Travel or take short trips Joined sports group Joined hobby group No action Contact physician

Danes Americans

N %* N % l Total = 35 of 51 69 Total = 21 of 35 60

30 86 19 90

I5 43 I9 90

I5 43 7 33

I3 37 15 71

II 31 8 38 IO 29 9 43 4 II 2 IO 4 II 5 23 4 II 4 I9

15 43 5 23



Sources of information

The knowledge of various self-care skills and techniques was derived from a variety of sources for both groups (see Table 12). Danes tended to learn about self-care behaviors from family, friends, health care professionals, as well as from books or their own experience. Americans learned mostly from support groups, books, family, friends, and to a lesser extent, health care professionals. Differences in sources of information may reflect a cultural difference in each system’s accessibility to health care, with Americans more likely to consult non-medical sources rather than utilizing health professionals as often as did Danes in this study. Another possible explanation for the American sample’s use of non- medical sources is the American growth in con- sumerism, which resulted in part from high costs, inaccessibility, and disenchantment with the U.S. health care system.

Other findings

Two findings are undergoing further study and will be reported in later publications. The majority of American persons with MS (60%) and 20% of Danes noted that they had altered the dosage of their prescribed medications, added over-the-counter drugs (Danes having obtained them from other countries), or stopped taking prescribed drugs. Some regulated medications rarely, others occasionally, and most often dosages were reduced or abandoned. The rationales given most often were a perception of the medications’ ineffectiveness or because of un- pleasant side effects, as this American who had stopped taking an antianxiety medication stated: “I hated the feeling of sleepiness, and I still was anxious.” The second factor was the issue of gender. For most behaviors, and in both cultures, women were more likely to engage in self-care behaviors, to utilize a lay-referral system, and to participate in self-help groups. Spouses or partners of men with MS who were interviewed were more likely to explore ways for coping with the illness than the men themselves.

Table 12. Percentage of responses of sources of information

Danes Americans Category % %

Own experience 51 54 Magazine or books 43 88 spouse 22 20 Mutual aid group 22 60 Home help and social services 18 14 Physicians 14 20 Other health care providers 14 17 Other MS patients 14 54 MS society information I2 63 Parents 8 12 Children 8 3 Friend 8 32 Radio or television 3 6


Why self -care?

Individuals in both groups expressed similar reasons for their self-care approaches in dealing with MS. The most prevalent reason for utilizing self-care practices for individuals in both groups was that it gave them a feeling of independence. Other reasons included the belief that some practices may keep their symptoms from getting worse, having a feeling of security and the reassurance of knowing they were helping themselves, and having a routine to follow. An American explained:

Every day I can, I go to the health spa to swim in the pool. I look forward to going at least every other day, because I think it strengthens my arms which are weak. I’m glad I can still do this for myself.

Some stated they feel better because of their self- initiated self-care practices, while others could not delineate a specific reason for their behaviors. Only a minority believed the practices would arrest the progress of the illness. A Dane explained:

Many times I have discussed with my doctor if anything can be done to stop the progression (of the illness). . He is negative but I think that not all the answers are there, especially about diet.

There appears to be a Danish cultural belief that one did not tap into pension resources unless they were needed. However, the cultural ethic was that there was no loss of pride if it was necessary to apply for the pensions and allowances. A Danish man said:

I have had to have the bathroom modified to make it easier to bathe myself, but that’s all I’ve had to do so far. One person I know had to move to a ground floor apartment as she got worse, but I’m lucky I have not needed to do this.

A Danish woman (employed in a bank) said:

My office and the entry way to the bank had to be changed when I had to use a wheelchair, but that’s all I have had to request.

Danes in this sample were not likely to practice self-care for cost reasons, or because of impersonal health care providers. Rather, Danes, and Americans as well, practice self-care because it empowers them. A Dane said: “I don’t know if yoga will make me better, but it could possibly keep me from getting worse.” An American said: “I feel like I need to do something to get a handle on this. I can’t just sit here and let this thing get the best of me.”

The study revealed that in both cultures, whether or not self-care was practiced by this sample of respondents appears to depend on such individual factors as readiness, which is determined by the stage of acceptance of the illness, the number of acute episodes of the illness, and the length of time between illness exacerbations. Other factors include awareness of the behaviors, such as having read about self-care practices or seeing a demonstration display, having opportunities to engage in self-care behaviors, such as for an American having child care and transportation to stress management or other classes, and social


support of family and friends who are perceived as being favorable towards, or at least not overwhelm- ingly against, self-care practices. Similar findings are suggested by Connelly [18], whose self-care model identified a system of predisposing and enabling factors. Predisposing factors included variables that influence the inclination or likelihood of engaging in self-care based on pre-existing perceptions and patient experiences, while enabling factors included variables related to the ill person’s situation as well as issues directly related to the care process.

DISCUSSION

The highly industrialized nature of the American economy results in great support for technological and organizational innovations in acute care, which can be very helpful in a crisis exacerbation of MS. But people with chronic illness more or less fend for themselves during times of non-medical contact. Meanwhile, persons with MS are likely to resort to self-care routines that they have found to help, or believe may help, mitigate the manifestations of the illness. Sometimes the routines work, sometimes they do not, and the person may try something else. Sometimes these individuals discussed their actions with their physician, but many times they did not. Additionally, some respondents asked their friends or relatives who have MS for suggestions or advice. If they were available, many turned to self-help groups, where they reported finding support and suggestions for other things to try. Some tried an alternative care practitioner, in order to seek relief from symptoms or from anxiety, or in an effort to find humane, focused care given to them. Another reason besides cost that Americans in this sample reported trying alternative therapies is that they lost confidence in their physician, who may have been perceived as abstract, inflexible, or uncaring. As opposed to Danish physicians, American physicians tend to denigrate other non-allopathic forms of care.

It is important to note that the fears and concerns of having a chronic illness such as MS are universal, as this study suggests. Both Danes and Americans expressed similar concerns about the progression of the disease and loss of independence. This suggests that the empowering mechanism of self-care is a way to gain control over the illness in the face of unknowns about the future.

Our purposes for conducting this investigation were several. First, we hoped the results would help health professionals act as catalysts in the adaptation process. In the management of chronic medical diseases, the ill person’s own contribution to the outcome is great, for their behaviors may profoundly affect the course of the illness. These individuals execute much of the therapeutic regimen, perceive and monitor their symptomatic management status, and judge when to consult the physician. The doctor-patient relationship can evolve into one of

mutual participation in which persons with illnesses such as MS and their families share responsibility for the day-to-day care. Under these circumstances the physician becomes a consultant who helps these individuals adapt to their illness. The findings also suggest that individuals with a disease such as MS typically engage in and benefit from seeking information from other individuals regarding coping behavior. One implication from this finding is that a manual or handbook describing self-care practices would be beneficial to individuals with MS. Some self-care behaviors appear simple and common sense to those of us who take our health for granted, but to someone with MS they can make the difference in whether a day is successful or a disaster. For example, Robinson explored and described how persons with MS discover simple coping strategies through exper- imentation in order to recreate a tolerable normalcy

1461. The behavioral observations from the study could

be used as a framework for determining where health education can be offered with optimal benefits, and with minimal side effects of dependency and erosion of the family’s self-initiated and self-sustained health contribution. Generally, inquiry into health behavior limits itself to those attributes that are judged profes- sionally relevant. However, the professional’s view of what constitutes health and coping behavior may not necessarily coincide with what the individual with MS and his/her family define as health and coping behavior.

One of the basic goals of self-care is independence. According to Levin and Idler [3] self-reliance is an expression of growth and dignity which satisfies the need for fulfillment and identity. They note that it optimizes human potential as a constructive social resource, and that mistrust of the health establishment or disappointment with its effectiveness is of less importance. Rather, in a more positive sense, they believe that self-care is the most effective, safest, most available, most acceptable, most economical way of meeting health needs of the majority of people. Most of the usual barriers to medical care are avoided in this way, notably lack of communication between professional and consumer. Moreover, there are corollary benefits such as the potential reduction of iatrogenic effects of professional care, particularly dependency. They further note that self-control of one’s health by self-care reduces undue reliance upon the medical care system. At the same time it enhances the health care contributions of the community’s natural care-giving resources of family, extended family, friendship networks, mutual aid groups, religious organizations, and in some situations, the entire community.

Segall [47] and others [48,49] suggest that an individual’s culture prescribes whether a person per- ceives feelings of illness as discomfort, how symptoms are perceived and evaluated, whether and from whom the individual decides to seek medical care. Culture is


critical in shaping people’s ideas about health and illness and their subsequent treatment modes

WI.

Self-care and compliance issues

The majority of this study’s respondents in both cultures enjoyed relationships with their physicians which they termed ‘fair,’ ‘good,’ or ‘excellent.’ Only about 20% of Americans and 5% of Danes said they were displeased or dissatisfied with their patient- physician relationship. The self-care strategies of respondents in this study indicate that self-care in illness was used in conjunction with medical care, and was not a substitute for it. Additionally, the breadth and range of self-initiated self-care strategies and behaviors of the respondents of this study indicates a need for looking at the issue of compliance from perspectives other than that of physicians and health care providers. Stimson [5 1] pointed out that much of the compliance literature reflects the nature of patient ‘flaws’ that account for failure to comply, and that non-compliance is not explained by allowing for departures from the ideal of the non-critical, obedient patient. Gochman [52] suggests that it is implicit in these studies that compliance is normative and ‘good’ and that non-compliance is deviant and ‘bad,’ and that they end with suggestions for interventions to bring about normative, good, compliant behavior. The perspectives of the persons with MS in this study suggest that these persons thought carefully about their treatment regimens, and as a consequence of that analysis, sometimes modified or abandoned medical advice. Their statements imply that they made continuous, critical assessments of what they were being told to do, and judged whether to comply or to do something else based on perceptions of whether it worked, fit into their lifestyle, or melded with previously held beliefs of efficacy.

Compliance or non-compliance may be an outcome of negotiations between the individual and physician and may reflect the individual’s dissatisfac- tion with the treatment, as Hayes-Bautista concludes in his study of Chicano females [53], or it may reflect the person’s own conceptions of therapeutic efficacy, as Arluke’s study of rheumatoid arthritis patients suggests [54].

Whether persons with chronic illness respond to medical or health regimens, or choose other forms of therapy appears to be more multi-faceted than previously thought. Ninety percent of Danish and 94% of American MS persons in this study said that one of the reasons they engaged in self-initiated self-care strategies was because it gave them feelings of independence. This suggests that the decision to select regimens and strategies from among allopathic, non- allopathic, and lay sources is one way to gain control over the illness. Self-initiated self-care strategies are empowering, according to most respondents. Non-compliance has been termed ‘adaptive non-compliance’ by some authors [27, 281, who

suggest non-compliance may be an appropriate means of adaptive behavior from the ill person’s perspective. Persons with illnesses of uncertain trajectory such as MS must deal with feelings of overwhelming fear, loss of independence, feelings of alienation and loneliness, as well as uncertainty about the future. Health care providers who understand these persons’ needs for independence will appreciate the need for negotiation of medical advice, including both diagnosis and treatment plans, as Haug and Lavin [55] suggest. Qualitative data from this study suggests that persons with MS who followed health care professionals’ advice were more likely to have a physician who was open about estimates of treatment efficacy, who shared details about their clinical condition, and who asked the person’s opinion about matters concerning the regimen. Respondents’ perspectives in this study imply that rejection of physician authority is not as big a factor in choosing self-initiated self-care strategies as much as the asser- tion of patient autonomy. Self-care as an empower- ment strategy was evidenced by MS patients in both the cultures studied. The objective of this study was discovery of self-care practices and why they occurred in order to illuminate the process from the perspective of the person with MS. Further randomized population studies are planned to confirm these findings. The process may be different with other illnesses and with other actors. Further research in this ongoing study will delineate where, in the illness trajectory, this behavior is most likely to occur, and how health professionals can assist with this adaptive process, and when dangers for the patient exist. It is important to ask what families are doing to cope with the stress of living with a chronic illness, and to ask them how they can be helped according to what they view as their needs.

Acknowledgements-This research study was funded in 1978-1980 by a George C. Marshall dissertation award of the American-Scandinavian Foundation, the Danish Medical Research Council, and the Ole Jadobsen Multiple Sclerosis Foundation, and from 1982-1988 by the Univer- sity of Georgia Faculty Grants Program. The authors wish to thank Dr Torben Fog, Dr Erik Hoist, Dr Lowell Levin, and Dr Marsden Wagner for their helpful assistance, as well as the researchers at the Institute of Social Medicine, particularly Kathryn Dean, Kirsten Emborg, Bente Ilver, Lisbeth Shore Palludan, and Neils Rasmussen.

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Self-care and multiple sclerosis: A view from two cultures

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