Lay care in illness

LAY CARE IN ILLNESS

02’7-9536 X6 Sj Oil f 0 00 Perpsmon Press Ltd

KATHRYN DEAX

Inst~tutr of Social Medicine. University of Copenhagen. 32. Juliane hlariesvej, DK-2100 Copenhagen. Denmark

Abstract-This paper discusses lay care in illness with special reference to research and development in Norrhern Europe. The discussion concentrates on two components of lay care: individual self-care in illness and self-help groups.

Individual self-care in illness is shaped in social environments. and in turn is a major determinant of the type and amount of health care services used. Self-help groups of all kinds have increased in recent yrars. Groups ‘next’ to the system and groups opposed to the system increased rapidly during the seventies. A form of self-help group that interfaces more directly with services is now being encouraged bq physicians. Major issues concerned with these developments are considered.

INTRODUCTION

The purpose of this paper is to examine lay care in illness, with special reference to the situation in Northern Europe. Due both to limitations of space and of available empirical data, the discussion will rely heavily on findings from Danish studies of self-care behaviour [I].

Lay care provided in the community constitutes the dominant proportion of care in illness [2]. This fundamental distribution of care in all populations has been complemented in recent years by a shift in lay attitudes and behaviour [3]. The reorientation in lay populations regarding the role of the individual in health care decision-making and practice, while differing in form and degree according to the structure of formal delivery systems and cultural concepts of health in different societies, appears to cover the range of health problems and is manifest at all levels of the provision of health care.

Decelopments in brief

About 200 years ago, a concept of social medicine arose which gradually replaced mystical explanations of illness with recognition of the importance for health of social conditions [4]. A parallel development during the nineteenth century was the rise of groups rejecting the explanations and caustic treatments of established medical practice [5]. However, rapid advances in natural science from the turn of the century resulted in the development of a biophysical concept of illness. Medical doctors achieved great status and assumed the role of an ‘autoritaer appar- atfejlsmekaniker’ (authoritarian fixer of mistakes in the machine) [4]. Medical doctors obtained a domi- nance in the care of all problems related to health and their treatments assumed a predominantly bio- medical and maximum intervention orientation.

Awareness of the dysfunctions and imbalances of this development in the evolution of health-service systems appears to be peaking. Renewed attention is directed to the role of social conditions in etiology and treatment. The public is openly opting for plu- rality in forms of treatment. Demands by individuals for health information. for control over their own bodies and treatment processes, and for the right to

die on the basis of private, rather than medical. priorities have escalated in multiple forms and con- texts.

Considerable academic focus is now being directed toward these developments. Interest in the study of lay behaviour in illness is, of course, not entirely recent. Earlier work concerned predominantly with factors shaping utilization of professional services established the importance of lay referral systems [6]. The shift toward informal care itself as a research subject of interest arises from an increasing concern with the functioning of health service delivery systems, dissatisfaction with current methods and outcomes and concern for policy and practice relevant findings regarding the range of care in illness [7].

Yet, the attention generated often has been contro- versial [8]. Professionals providing care in formal medical systems tend to view self-care, mutual aid and services provided by alternative providers as inferior to their own. This tendency persists even when these forms of care prove to be more appropriate and effective than those provided by professionals. Lay care continues to be viewed as residual and supplemental to professional care in spite of the well documented fact that professional care is the supplemental form of health care.

Elliot-Binns [9] pointing to the 96% of patients who obtained lay advice or care prior to consulting in his medical practice questioned the appropriateness of characterizing the family doctor as the primary source of health care. However, it is not only prior to consultation that the lay health resource is a major component of care. Lay care precedes, substitutes for, influences, evaluates and finally complies with (or does not comply with) professional directives. Fur- thermore, the active components of lay interaction with professional care appear to be increasing.

Helgesen and Borchegrevink [IO] have suggested that a movement demanding the democratization of health care services parallels broader social concerns regarding rigid public bureaucracies that threaten individual rights and fail to provide mechanisms for citizen participation in the development of social policies and programs, indiscriminate technological development and escalating production of military weapons. The perceived causes of the rapid growth of

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lay activation in health car2 have been discussed at length [I I].

Lay care in illness has not yet assumed a degree of conceptual clarity which allows a discussion in terms and definitions uniformly rscognized by social and medical scientists concerned with the subject [I?]. There are at least four components of lay car2 in illness: (I) individual self-care: (2) family care; (3) care from the extended social network; and (4) mutual aid responses to health problems (self-help groups).

The content of self-car2 is partially dependent on the information level of the population and on the methods and support available for solving health problems [ 131. Vagn-Hansen [4] has characterized primary self-car2 as that arising from the individual’s accumulated knowledge and experience, while secondary self-care is that based on information obtained in consultation or in study of a particular problem. Van Harberden and Lafaille [l2] have identified three levels of self-help:

(I) SecJ‘-help ideology referring to the ability of people to shape their own lives without dependence on. or control by, professionals.

(2) Self-treatmenf which includes both self- medicationhome remedies and ‘self-therapy’ or the therapeutic methods used by individuals to car2 for psycho-social and mental health problems.

(3) Self-help groups in which solutions to problems of individuals are sought through mutual aid provided in groups of persons experiencing the same condition.

This categorization mixes potential for self-help and types of action, and does not include forms of lay care other than car2 provided by individuals for themselves and car2 obtained in self-help groups.

Individual care in illness is embedded in family and extended networks. Members of an ill person’s family are generally involved in decision-making and therapeutic processes at every stag2 of illness [l4]. Whether or not the actual treatment decisions are made and carried out by the individual ill person alone, they are made and performed in the context of family socialization and support. The processes involved are extremely complex. They are determined by formalized social roles [ 151 and types of family functioning [16] which must be considered in any meaningful discussion of the subject. Likewise, the size. content and interaction of extended social net-

‘Self-care behaviour in illness is the subject of a multi-stage investigation in Denmark. In the first phase of the research project, data were collected on behayioural responses to common conditions: ‘colds’, lumbar pain. skin rash. depression. influenza and chest pain. A self-administrated mail questionnaire was used to collect the data from a random sample of the population. .V = 1461. In-depth interviews were conducted with a geographic sub-sample of 450 of the phase one respondents to collect illness response data regarding all symptoms experienced during a 6 month period. Details of study design and the characteristics of the sample are available in Dean et ~11. [I].

works influence both individual and t-lmil:, care in illness.

Lay-care thus is a social phenomenon [17]. It is shaped by social conditions and influences. and it in turn can assume forms of behaviour which influence the social situation. It is not possible. however. to consider all four components of lay care with any depth in the context of one article. Thsrefors. only individual self-care and self-help groups. both of which involve individual care of sslf rather than care provided by others. nil1 be included in this discussion.

INDIVIDUAL SELF-C,\RE IS ILLSESS

Self-car2 has been variously interpreted as: behaviour not performed by doctors [IS]: as behaviour which used to be performed by doctors [l9]: as self-treatment [l3]: and. as the range of health and illness behaviour at the level of primary health care [20]. Self-care includes all of these aspscts, but these conceptualizations fail to acknowledge thz self-care components of all levels of care. Self-care is a basic component of care obtained in families and extended social networks, in self-help groups and in professional treatment [?I]. Thus, self-care in illness may be defined as follows:

Self-care in illness is the range oi indr\tdual behaviour involved in symptom recognition and evaluation. and in decisions regarding symptom responses. including decisions to do nothing about symptoms. to treat the symptoms by self-determined actions or to seek advice regarding treatment. Self-care thus includes consultation in the lay. professional and alternative care networks as well as evaluation of and decisions regarding action based on the advice obtained in consultation.

The fundamental aspect of self-care behaviour in illness is the recognition and evaluation of symptoms. The extent to which alterations in bodily states are recognized as symptoms and the meanings ascribed to the symptoms once recognized are a function of cultural learning and life situation. Attention focused on symptoms differs according to social roles and aspects of the life situation such as type of work. Furthermore. it appears that social situational stress and social support are factors in the onset or the recognition of symptoms or both. Research findings seem to confirm the relationship between psychosocial stress and disease. Coping styles and social support may be important intervening factors in this relationship. In an investigation of self-care behaviour in Denmark* the number as well as the type of symptoms reported were related to both perceived stress and social support variables. It has not yet been possible to analyze all of the complex interactions among these variables.

Once symptoms are recognized and judged sufficiently serious for direct action. othsr components of self-care behaviour come into play. At this stage of self-care. lay referral assumes an important position, and on2 or more of four types of illness behaviour are undertaken:

Decisions to do nothing about symptoms; Self medication; Non-medication self-treatment; Decisions to consult professional providers.

Lay care in illness 277

No action responses fo synptoms

Very little is known about decisions to do nothing about symptoms. There is often an implicit assumption that symptoms should be treated. This is so even though having symptoms is regarded as normal and quite compatible with good or even excellent health [22]. Traditionally. thts subject when considered at all in illness behaviour research. has been referred to as ‘ignoring symptoms’ or ‘delay in seeking medical care’ and has been ascribed to some negative psychological trait of the individual.

In the first phase of the Danish self-care behaviour study concerned with behavioural response to common symptoms, the proportions of persons doing nothing about symptom episodes ranged from 7:, of the respondents who took no action in response to influenza to 290,; who did nothing about chest pains. In the follow-up study of behavioural reactions to all illness reported for a 6 month period, 379; of the conditions were not treated in any way. Furthermore, the tendency to do nothing about symptoms was not limited to only acute and rapidly passing conditions.

Similarly, in a Scottish study, Bell [23] found that chronic conditions frequently remain untreated. While the reasons for this lack of care vvere acknou- ledged to be unknown, it was still ascribed to some form of resignation on the part of the persons experiencing the symptoms. The possibility that an evaluation of symptoms results in a decision that the best treatment is no treatment is rarely considered. Therefore decisions to take no action are not given equal attention in the analysis of illness behaviour data.

In Denmark neither the type of symptoms nor perceived health status were related to the tendency to do nothing about illness episodes. The perceived seriousness of the individual symptoms was the variable most strongly related to whether or not some form of active treatment response was undertaken.

Self-medication

The use of medication during illness is known to be extensive [2, 231. Self-medication with nonprescribed medicines has been found in many investigations to exceed the use of prescription drugs. McEwen [23] has identified three levels of self-medication:

(I) The use of substances considered to maintain or promote health or prevent illness.

(2) Treatment of self-limiting conditions or the early ill-defined stages of more serious illness.

(3) Treatment taken in addition to professionally prescribed care and medication in more serious illness and chronic conditions.

Self-medication, however, does not only take place with non-prescription medications. Grahame-Smith [24] pointed out, that in addition to buying over the counter drugs, patients self-medicate by manipulating the medical profession. He sees this situation as especially problematic in relation to the use of psychotropic drugs among women. The extent to which this problem is a manipulation of the medical profession or a medicalization of a social problem is an open question. Nevertheless, the extent and seriousness of the problem cannot be denied. Thirty

per cent of all requests for repeat prescriptions are for psychoactive drugs [23]. Aside from the psychosocial aspects and consequences of the problem. the purely physical health etTects include both neurological and psychological toxic etTects [2-t] and the dangers of interactive effects vvith other drugs [25]. Besides the multiple drugs often used simultaneously. the drugs used may be multiple-ingredient preparations. Toxic effects are not the only concern. drug interactions may also be a causal factor in home and traffic accidents,

Psychosocial factors appear to be important variables influencing medication behaviour. More extensive use of medications has been associated with high scores on anxiety scales and on depression inventories [26]. Dunnell and Cartwright [27] found that persons who consult physicians with personal problems were more likely to take medicines. The latter finding was replicated in the investigation of behavioural responses to common illness in the Danish population. Further exploration of this relationship in a sub- sequent study of self-care responses to the range of morbidity suggests that the greater use of medication is not directly due to the tendency to rely on physicians for counsel of non-medical problems. but operates through the higher consultation rate of persons who discuss their personal problems with their doctors.

Alterations in the use of medically prescribed drugs are also a type of self-medication. This behaviour may range from not taking a medication at all to altering the dosage or duration of its use [23]. Non-compliance with physicians’ medication directives is known to be extensive. The extent to which non-compliance is the result of conscions decision- making arising from lay judgements and evaluations of physician directives is unknown.

Yet another type of self-medication with prescription drugs is the retention of drugs for later use. In a study of self-treatment prior to consultation in a Danish general practice, it was found that a large amount of the medicine used for self-treatment was prescription medicine obtained at an earlier time [28].

As suggested above in McEwen’s third category, self-medication is not limited to minor illness. A Norwegian study of the use of herbal medication among cancer patients suggests the extent of self- medication in serious illness. Gjemdal [29] found that 57 or 100 cancer patients had self-medicated with one or more herbal medicines after the diagnosis of cancer was made. This self-medication behaviour was more extensive than that found among a general group of patients on an internal medicine ward, and over twice that found in the general population.

Whatever factors are shapmg medication behaviour and whether or not it is undertaken on the basis of solid information and judgement. the use of medicines is clearly under the duect control of the lay individual.

Non-medication self-treatmem

McEwen noted in relation to the three levels of self-medication mentioned above that at all three levels there are other forms of behaviour which “achieve the same aims-alteration in diet, more or less exercise, taking a rest, having a holiday. reduc-

tion in work, warmth. fresh air. bread poultices and so on” [23].

Some form of non-medication self-treatment is the most frequent behavioural response to common illness conditions. In Denmark one or more behaviours of this type were reported for 76:‘; of 3100 common illness episodes. Influenza was the condition included in the investigation for which the greatest number of non-medication/self-treatment responses were reported.

Increasing fluid intake and rest were the most frequently reported responses to influenza and colds. Avoidance behaviours related to lifting or stooping and the use of a heating pad were the most frequent responses to lumbar pain, although increased rest, some form of exercise and obtaining massage were also frequently reported for this symptom. Chest pain was treated most often by reduction in the pace of activities and/or reducing smoking.

Some treatment-responses are directed toward possible causes of symptoms rather than aiming only to relieve or reduce the symptom. Responses of this type were related to the age and sex of the respondents. Younger persons more frequently undertook preventive and/or protective type responses to back pain such as exercise and avoidance behaviours, especially the avoidance of stooping movements. Older persons, especially older women tended, however, to take medications and used a heating pad to treat lumbar pain.

Education and social status appeared to have independent effects on these differences in behaviour. While younger persons more often reported that they responded to depression by discussing problems un- derlying the symptom with someone in their social network, those in social class groups l-3 and those with more education, most often reported this response. Similarly, level of education was positively associated with preventive responses such as exercise for lumbar pain and relaxation for chest pain.

When the entire range of symptom experience is included in the study of self-care in illness, the proportion of non-medication self-treatment behaviours appears to drop. In the second phase of the Danish Self-Care Behaviour research project, 37% of the 1405 symptom episodes reported were treated with one or more non-medication care responses. The data were collected in interviews, however, rather than with mail questionnaires, and the questions concerned with self treatment were less structured than those used to collect the data on responses to common illness. Thus the methods allowed less time and provided fewer stimuli for recall in the study of all types of symptoms.

A Norwegian investigation of behavioural responses to eight illness conditions found that 35% of the respondents who experienced one or more of the eight conditions in a 14 day retrospective period had practised some form of self-care [30]. The definition of self-care in this investigation included advice from the lay network and consultation with non-medical providers of services along with use of medicines and a few types of non-medication self-treatments. There- fore, the proportion of non-medication self- treatments cannot be separated from the other forms of care.

A secondary analysis of U.S. tilness behaviour data. not collected specifically to study self-care, found that only joO of the illness responses were self-treatments [3 I]. ‘Home’ treatments, however, in this investigation only included the use of appliances and homemade dietary or other preparations. thus excluding important forms of treatment like rest, exercise. relaxation techniques. etc. Furthermore, only relatively serious episodes of illness were studied.

The relative proportion of non-medication self- treatments compared to other forms of response to symptoms cannot be assessed from the very limited data available. What is certain is that the range of behviours which are considered therapeutic is very broad. Some people may work in the garden or listen to music as methods of reducing physical or mental discomfort and restoring equilibrium and well-being. Freer [32] has identified a category of social non- medical activities. He found that 53:/, of ‘non- medical’ responses recorded in a diary study of self-care behaviour required the presence of at least one other person. These social remedies included activities such as spending time with family or friends and going out for lunch.

Limiting the concept of self-treatment to home appliances, herbal medications and various forms of home concoctions is a way of approximating self-care to the medical model and may exclude some of the most beneficial forms of self-care.

Before taking up the fourth category of self-care responses to illness, some attention should be directed toward the subject of remaining at home and reducing normal activity when ill. Disability days have generally been considered a ‘need’ variable indicating the seriousness of illness. Although very little is known about the factors that lead to sick role behaviour, reducing normal activity or remaining in bed when ill are perhaps more appropriately characterized as beneficial forms of self-care rather than indicators of poor health.

Berkman [33] found, in a prospective study of 6928 adults, an unbroken pattern of greater mortality among respondents spending no sick days indoors in comparison to those spending l-3 sick days at home during the year. The greater mortality of persons with no disability days was found regardless of sex, age, ‘objective’ and subjective health status and positive health habits. Berkman concluded that indulgence in sick role behaviour should perhaps be considered health care rather than an indicator of morbidity or disability. The possibility of psychological denial was also posited due to the findings regarding persons who maintained that they were never bored or restless, those who characterized their health as better than that of their peers, and those who said their physical activity levels were much higher than their peers. All three groups had higher mortality rates than the ‘sometimes’ bored and restless and persons who considered their health status and activity levels similar to that of their peers. The need for elaboration of these findings in the context of work-ethic addic- tion and situational pressures was concluded.

Situational constraints appear to be important factors to consider in the study of sick role behav-iour. In the Danish self-care investigation. persons with

Lay care in illness ‘79

lower family incomes. less education and in the lower social status groups more often maintained their normal routines when ill with influenza. while persons in the higher categories of these social- situational variables, more often remained at home or went to bed with influenza. Similarly, skilled workers and salaried employees (both with strong union protected incomes during illness) tended to remain in bed with influenza, while independent business- persons, housewives and unsillled workers more often mainained normal routines when ill with influenza. These trends, seen also for other illnesses, were most consistent in relation to income and strongest in relation to women [34].

Decisions to consult professional prociders

Symptoms and signs of illness are a normal part of life. and even relatively many symptoms are quite compatible with good health. Huygen [22], in a study of persons selected from the files of his medical practice, found that 88?,; of the respondents regarded their health as ‘good’. At the same time, 957; of these persons had one or more symptoms at the time. Forty-six per cent reported between four and ten symptoms and 20% named eleven or more symptoms. Replications of this investigation produced similar results.

In a somewhat different type of investigation, an analysis of 30,000 visits to primary care physicians revealed that a clear somatic diagnosis could be made in only 417; of the cases. Problem behaviour and psychological reactions accounted for 31% of the consultations, while 107; of the visits were for admin- istrative purposes and l8”/, for ‘vague’ reasons [25]. Clearly a great deal of professional consultation takes place for non-medical reasons and/or for conditions about which other people do nothing, provide self- care or obtain some other form of care.

Physician consultation for common symptoms in Denmark increased with age and were more prevalent among women. The influence of age and gender on consultation behaviour varied however according to the type of symptoms. For example, although proportionately more women than men contacted doctors for skin rash and depression, it was older women who sought help when depressed and younger women who consulted more often for skin rash.

Other variables independently related to physician consultation for common illness were being unemployed or pensioned, a reliant attitude toward physicians and perceived health status. The major differences in consultation behaviour according to employment status were for lumbar pain, chest pain and depression. Unemployed men contacted doctors more often for lumbar pain and chest pain, while unemployed women more often consulted their doctors for depression.

Persons who discuss non-medical problems with their physicians consulted them considerably more often for each of the common symptoms studied. Those persons who considered themselves to be in poor health also contacted doctors for the common conditions more often.

When behavioural responses to the entire range of morbidity experience were examined, a reliant attitude towards physicians continued to exert strong

influence on consultation behaviour. second only to

the perceived serious of the symptoms (;, = 0.60,

P = 0.000 for perceived seriousness of symptom epi- sode and physician consultation: 7 = 0.27, P = 0.000 for seeking counsel of non-medical problems and physican consultation for symptom episodes). There were also modest relationships between consultation behaviour and female gender, low confidence in one’s own capacity to influence health, increasing age and residence in larger cities. Finally. the distance away of the nearest residing members of the extended family was modestly correlated with consulting physicians for symptoms [35].

The direct interface between individual self-care in illness and medical care takes place in the context of the doctor-patient relationship, and lay behaviour in regard to compliance with physician directives. Dis- cussing patient behaviour in medical care, Barofsky [36] observed that “when a patient is said to be compliant there is a suggestion that he has been coerced, when he is said to be adherent it appears that he is conforming to some norm or standard set for him, while when he forms an alliance it seems he has negotiated what it is he will do to care for himself’.

This continuum of coercion, conformity and nego- tiation which represents the degree to which the patient is active in discussions about treatment is considered to be a major determinant of patients’ perceptions of the quality of professional medical care. Discussing an exchange model of self-care Barofsky further observed:

The patient faced with what he considers to be inadequate treatment has two options-he can attempt to comince the provider of the inadequacies of the treatment. or modify the treatment to suit his own view of what is adquate. Often a patient does both. and self-initiated changes become the commodity of exchange. Thus, the more the patient feels that a treatment is inadequate, or that he lacks the knowledge to deal with the consequences of treatment. then the more he will be willing to do (i.e. self-care behaviours) before he decides to drop out of treatment. Self-care is a product of these negotiations, and represents a rational choice based on a patient’s past and current history of exchange [36].

As discussed in relation to medication behaviour, there are various self-care modifications of professional directives, but these are seldom deliberately negotiated in a process of decision-making between patients and providers of care.

Illness behaciour as a form of coping

Self-care responses to illness are a synthesis of learning and experience. There appear to be aspects of self-care in illness that might be characterized as coping behaviour, not in the sense of dealing with threatening conditions, but in the general management of stress. This process is manifested in the interplay between the life situation and the inter- pretation of and attention given to all types of symptoms. Perceptions regarding the seriousness of symptoms appear to be a fundamental component of this process.

In the Danish Self-Care Behaviour study perceptions regarding the seriousness of symptoms were more strongly related to three of the four types of behavioural responses discussed in this paper. than

x0 KATHRYN DEA.L

any other variable included in the investigation. Only medication responses were not directly related to the symptom perceptions. In turn. symptom perceptions were influenced by general habits of coping with stress and health beliefs as well as by variables representing stressful life situations and social support.

Persons who reported experiencing stressful life problems during the period for which data were collected. as well as those widowed or divorced, the unemployed, those living alone and those living on low incomes, more often perceived their symptoms as serious. There was a positive relationship between satisfaction with social support and the number of symptom episodes reported as ‘mild’. On the other hand, persons who relied on physicians for counsel of non-medical problems more often considered their symptoms serious.

Habits of stress reduction and beliefs regarding the factors which determine health also influenced the symptom perceptions and thus the illness behaviour. Persons who usually discuss their problems with others in their social network and those who find vvavs to rest and relax when feeling stressed reported serious symptom episodes considerably less often than persons who attempt to reduce stress by taking medications or trying to forget their problems. Simi- larly, persons with high confidence in their own capacity to influence health reported serious symptoms proportionately less often than persons who scored low on a scale of internal health locus of control. On the other hand, respondents with strong beliefs in the capacity of medical science to protect health more often considered their symptoms serious than those with less faith in the potential for medical cure.

Patterns of coping with stress thus appear to interact with life situation factors and social learning in complex ways to shape symptom perceptions vvhich in turn are the primary immediate deter- minants of individual self-care responses to illness.

Psychosocial support has emerged as an important variable in the study of morbidity. Evidence suggests that social support modifies the effects of stress on health [37]. The Danish data suggest that social support plays an important role in responses to illness as well. As mentioned above, family structure, the number of adults living in the household and satisfaction with social support were all related to whether or not symptoms were interpreted as serious. Fur- thermore, having someone to assume one’s regular responsibilities during illness, independent of perceived seriousness of the symptoms, was related to whether or not they were treated. At the same time, 13% of the adult population sample reported that they have no one to assume their responsibilities when ill. Fifty-one per cent of the respondents reported that they do not interact socially with any of their neighbours.

Patterns of support within social networks thus becomes a key factor in self-care practices in illness. Elliot-Binns [9] found that wives were considered the source of soundest advice regarding the treatment of symptoms. Further evidence of the central familial role of the wife:mother in family functioning was found by Litman [38]. The supportive and nurturing

behaviour nomen provide in irlmilies is a major lay care resource. Husbands. on the other hand. tend to suggest professional help for their wives’ complaints [9]. Perhaps this is one explanation for the gender differences found in consultation and medication behaviour.

People coping with highly stressful health conditions or problem situations. elderly disabled and single mothers with small children are examples of groups especially vulnerable to inadequate social support. One response to unmet needs in existing social structures is the formation of self-help groups. In this form of lay care. groups o’f people who experience common problems come together to provide mutual aid. information and support [39].

SELF-HELP GROUPS

The mushrooming of self-help groups in recent years suggests that many needs are not satisfied in personal social networks or by publicly created services. The proliferation of groups focusing on health conditions during a period when ever more professional services are provided, \\ould seem to indicate that self-help groups address problems which are either neglected or not helped by the professional services directed tovvard particular conditions [JO].

Perhaps the greatest benefit of self-help groups is that, as van Harberden and Lafaille have illustrated, they provide a form of assistance which unites certain positive aspects of primary and secondary sources of help, thereby filling gaps in existing systems of helping [ 121.

Professional care is affectively instrumental. specialized, neutral and impersonal. Individual problems, however, sometimes call for caring which is both instrumentally skilled and emotionally supportive. For example, problems related to behavioural control or to adjustment in crisis situations perhaps are best helped by supportive caring based on an understanding of the problem arising from personal experience with it.

The best definition of self-help groups remains that of Katz and Bender:

Self-help groups are voluntary, small group structures for mutual aid and the accomplishment of a special purpose. They are usually formed by peers who have come together for mutual assistance in satisfying a common need, over- coming a common handicap or life-disrupting problem. and bringing about desired social and or personal change. The initiators and members of such groups perceive that their needs are not, or cannot be. met by or through existing social institutions. Self-help groups emphasize face-to-face social interactions and the assumption of personal responsibility by members. They often provide material assistance, as well as emotional support: they are frequently “cause”-oriented. and promulgate an ideology or values through which members may attain an enhanced sense of personal identity [II].

Due to the rapid, growth of self-help groups in recent years. their visibility and the recent attention focused on them by researchers and professionals this form of caring like individual self-care in illness is frequently considered a new development. This is not the case for either form of care. Common interest associations play a key role in the social and cultural evolution of society. They form continually and are


“the vanguard, the forerunner and the gadfly in almost every field of endeavor” [U]. The extent to which mutual aid groups have formed in the health area is probably due to: (I) the nature of many contemporary problems which are better resolved by this form of caring, which combines positive aspects of personal caring and professional servies; (2) mal- functioning in existing health service delivery systems: and (3) unavailable services for specific types of problems or for specific populations. Indeed, in a survey of groups in the United Kingdom, Robinson found three main themes emphasized in accounts of their origins: failure of existing services, recognition of the value of mutual help and the role of the media

]431. The formation of self-help groups is not necessarily

a spontaneous lay phenomenon as is sometimes assumed. Groups are often either initiated by or supported by critical members of the established professions. Boreman [42] has identified characteristics of professional founders:

(1)

(3 (3)

rJe;rstioning of conventional theories in the

Broader definition of the affliction. Recognition of a broader repertoire of skills and techniques than is conventionally utilized.

(4) Focus on neglected stages of the condition.

(5) Concern for neglected populations.

(6) Altered view of the role of the professional.

(7) Innovations in recruitment of clients.

(8) Fees minimized.

These characteristics are instructive to consider, not only in relation to the development of self-help groups themselves, but also in relation to their influence on the evolution of health care services.

Kickbusch [44] classifies self-help groups in health according to their relationship to professional services. Groups in rhe system are characterized by participation of patients in the group process on the basis of the therapeutic concepts of professionals. A second type of groups operates next to the system,

‘separate but compatible’ providing services which are not available from professionals, or for problems that are not helped by professional services. These groups identify their own problems, approaches and priorities, but use professionals as consultants and advisers to the group. Finally, groups opposed to the s_vstem reject the theories, approaches and practices of the conventional services.

One of the major problems in the functioning of specialized. high technology medical care systems is the lack of control lay persons have over their own treatment [45]. While most self-help groups originate from a position of powerlessness [46], the control which members have over the operation of the group is basic to the meaning and function of this form of care. Using Kickbusch’s typology. a continuum of control exercised by members can be recognized, ranging from least control in groups functioning within professional set-vices to maximum control by the members of groups organized outside the system.

The number of self-help groups of all kinds has increased in recent years [47]. Groups next to the system and groups opposed to the system increased

rapidly during the seventies. In the health field, groups opposed to the system increased during this time predominantly in the context of the womens’ movement. A form of self-help groups that interfaces more directly with medical services is now being encouraged by physicians [48]. The extent to which these groups can function as self-help groups as defined above and thus offer the advantages of this form of caring to their members, depends on the ability of the members to maintain control of the group.

The content of professional involvement in groups which interface directly with medical services varies. Moeller [49] defines the role of professionals in these groups as fellow-counsellors on an equal footing, as a link between the two forms of care. Barath [SO] identified characteristics of self-help groups of hyper- tensives in Croatia: (1) decisions to establish and join the groups come from the patients themselves: (2) the groups elect their own management: (3) professional involvement must be unobtrusive; and (4) group activities emphasize social learning regarding hypertension by mutual teaching and advice, exchange of opinions and social activities.

A variant of this form of group organization developed in The Netherlands, operates on a modified professional model. Bremer Schulte [j I] describes groups for chronically ill and handicapped persons which operate with two facilitators, a professional and a lay person. The lay facilitators have the particular problem, have been a member of a group, and have received training to assist in the group. The professional facilitators are supposed to hold themselves available in a complementary fashion. They are not ‘regulators’, nor are the lay persons ‘assistants’. Clearly, however, this form of group functioning is more influenced by professionals than the ones described by Moeller and Barath.

DISCUSSION

Certain issues are repeatedly raised in discussions of lay health care. The issue of effectiveness in relation to self-treatment is often raised in terms of its potential dangers, while medical care is generally discussed in terms of quality (521. This continues to be the case in spite of the fact that medical care is often exceedingly dangerous, while self-treatment with its less intensive interventions, methods of relaxation and use of social forms of therapy is probably rarely dangerous. The obvious exception is when serious conditions for which there is a known medical cure are not presented in consultation. Empirical evidence of the extent to which this happens, and of comparative outcomes, is lacking. The limited evidence available suggests that self-care decisions are generally appropriate and self-treatments helpful [53].

Helgesen and Borchgrevink [54] point out that there are many illnesses which patients care for just as well as doctors and other quite serious conditions for which lay treatment is better. Even in regard to those conditions which are more effectively treated by professionals, they emphasize the importance to protect individual integrity and responsibility.

252 KA~RYN DEAN

The investigation of self-care behaviour in the Norwegian population found that persons practising self-treatment had shorter illness episodes. The benefit of home throat cultures and urine cultures has been demonstrated [55]. General practitioners’ evalu- ating the effectiveness of self-medication in a British study of self-treatment found 7%; of the self- medication completely or partially adequate and only 5Si potentially harmful [56].

A major indicator of the quality and effectiveness of care obtained in self-help groups is their use by both lay populations and in professional referrals. In a study of the effectiveness of 20 self-help groups in 748 outpatient psychiatric facilities in the United States, it was found that SS”/A of the respondents answering an evaluation question considered the effectiveness of the groups to be at least average and that 487: of the agencies made frequent or occasional referrals to self-help groups. Furthermore. 47% of the respondents felt that self-help groups may be an important or very important part of a comprehensive mental health delivery system [57]. Some specific instances of effectiveness of outcomes also have been demonstrated [58].

Rather than the danger of self-care, perhaps the most important issue is the quality of health care systems which do not effectively utilize the most basic primary health care resources and appropriately integrate the levels of care.

In a number of instances the subject of self-care has become politicized [59]. Political conflicts regarding self-care generally focus on two subjects. One major issue is the possible use of self-care arguments to reduce health expenditures. The other is concern over the ‘victim blaming’ potential of emphasizing self- care/self-help.

While some special interest groups have un- doubtedly attempted to use the subject of self-care for their own purposes, it is a mistake to see the current controversy over health expenditures and increased interest in the subject of self-care as a cause and effect relationship. Lay activation in matters regarding health care, criticism of the technological imperative in medicine and the economic crisis in health care sectors were logical parallel developments. Indeed, the first two developments preceded the latter. Fur- thermore. there is no basis for assuming that rational and effective utilization of lay health resources would reduce the size of health budgets. It is only certain that a reallocation of health expenditures is necessary to address the present imbalances and that a more effective and beneficial use of public monies would result.

The issue of the victim blaming potential of mis- placed emphasis on self-care/self-help should not be ignored. Focus on life-style and the benefits of lay care cannot substitute for addressing structural and environmental factors which produce disease. Some self-help groups are “inner-directed, authoritarian. victim-blaming and manipulated by dominant forces” [60]. The purpose of both professional help and self-help is “to do something to. or with, people who have problems in order that they might be better able to find their way around in the world as it is” [43]. Medicalization of social problems is among the stronger forces operating to maintain the status

quo [I31 and could work more to hinder social reforms than even the most inner directed mutal aid endeavors which in any case emphasize individual capability and integrity.

Finally, health knowledge and opportunities for effective self-care decision-making are not equally distributed in the population. People actively engaged in obtaining health information, more often young and highly educated, are not always those who need it most. Similarly, those persons most in need of mutual aid groups may be unaware of their existence or find them inaccessible [61]. Each type of professional care as well as the various forms of lay’care has its ‘radius of action’. Inappropriate substitution of professional care for lay care will always “be de- fective or, in many cases, even harmful. quite apart from the high expenditure aspect” [Xl.

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