The rheumatic patient's early needs and expectations

Patient Education and Counseling, 20 (1993) 77-91 Elsevier Scientific Publishers Ireland Ltd.

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The Rheumatic Patient’s Early Needs and Expectations Anita Samuelsson,

MSc”, Monica

AhlmCn, MD” and Marianne

Sullivan,

‘Rheumatology Section, Miilndal Central Hospital, 431 X0 Mtilndal and hHealth Care Research Gothenburg (Sweden)

Abstract During the last few years, studies have revealed that the need for psychosocial support and concrete social services are great in the early stages of the treatment of rheumatic diseases. The ability to keep a job, to do household chores, to participate in leisure activities and to maintain social relations is clearly impaired. Anxiety and depression are not unusual and often associated with weak support from relatives, loneliness and disturbed family relations. Nevertheless, the patients report resilience and determination to cope with the impacts of illness. Crisis intervention, vocational guidance and counselling about problems concerning the disease should be available and offered to the patients. As the patients seem to be unaccustomed to talking about their psychosocial problems, an empathetic and information-seeking attitude on the part of the health care staff is essential.

Key words: Rheumatic disease; Expectations of care; Independence; Coping; Psycho-social support. Design of and Satisfaction with Care For many patients, being suddenly afflicted with a rheumatological disease gives rise to apprehension and concern for the future. Pain combined with gradually increasing functional impairment conjures up threatening images of a life in a wheelchair. On his (For reasons of simplicity, patients will henceforth be referred to in the masculine form.) first visit to a rheumatologist, the patient undoubtedly has 0738-3991/93/$06.00 0 1993 Elsevier Scientific Printed and Published in Ireland

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great expectations that the medical treatment the physician and other medical staff can offer him will alleviate the symptoms of his disease. However, everyone who works in this type of medical care has at one time or another experienced that patients have not been satisfied with the care provided, despite the fact that we, in our own opinion, have made great efforts in various respects to satisfy the patient’s expressed needs of care as well as his psychological and medical needs during the period of treatment. But did we give our undivided attention to what the patient was saying? What were his thoughts about his disease and about the care we provided on his first visits to the outpatient clinic? Did we take care to find out what worried him most and what were his most urgent problems? Did we concern ourselves with the effect that an, in the patient’s view, unsatisfactory visit might have on his future visits to the outpatient clinic and how this negative experience might affect his future need of medical care, health perception and adaptation to his disease? The development of psychosocial knowledge has increased our awareness of the way in which a patient’s expectations and psychosocial needs of care are determined and expressed by his personality, living conditions and experience of life (Perlman, 196 1; Allport, 1964; von Bertalanffy, 1968; Antonovsky, 1980; Maslow; 1987; Genell-AndrCn and Rosenqvist, 1987; Donovan et al., 1989). At the same time, the development of holistic Ltd.

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care ideologies (Leigh and Reiser, 1980; Eisenberg and Kleinman, 198 l), theories about care (La Monica, 1979) and conventions on the equal rights of human beings to the best possible health (WHO, 1958) have further emphasized the importance of psychosocial knowledge about people’s personal circumstances in care planning and treatment processes. Therefore, the development of methods of assessing psychosocial effects on health and quality of life has increasingly been addressed within different disciplines (Sjiiberg et al., 1979; Bergner et al., 1981; Fries, 1983; Liang et al., 1985; Parker et al., 1988; Sullivan, 1991). Each patient who visits a rheumatological clinic possesses unique information about his circumstances and requirements. This information is vital for the efficient use of the treatment resources and may also result in improvements of the care provided. The purpose of this report is to increase our understanding of the psychosocial consequences of a rheumatological disease in its initial stage, to highlight practicable psychosocial methods of utilizing the patient’s own experiences of the disease and its various implications, and in this way to form the basis for continued discussions about treatment models in rheumatological care. Health and Need Mechanisms

According to the World Health Organization’s (WHO) definition, health “is a state of complete physical, mental and social wellbeing and not merely the absence of disease or infirmity” (WHO, 1958). The degree of functional impairment should be viewed in relation to the limitation of the individual’s functional ability as a consequence of a disease or injury. A person’s handicap is defined by the negative effects of the functional impairment experienced by him in relation to his immediate environment (WHO, 1980). Human actions are guided by the needs that arise as a result of various physical or

psychological states of deficiency (Festinger, 1957). Some needs are genetically conditioned, others are learnt. Because of the symptoms of the disease, a rheumatic patient’s possibility of satisfying a range of needs is reduced (Jacob et al., 1972; Andersson et al., 1985) and he continually revises his priorities according to the limitations imposed by the disease. In his book Toward a Psychology of Being, Abraham Maslow (1987) described six basic needs: those arising from a desire to function biologically, protect oneself or be physically and emotionally safe, belong or be accepted by others, have status or position among others, feel useful or productive and express oneself through creative activities. Maslow believes that each individual experiences selfactualisation when his needs are met. He holds that human beings realize their needs in the order given. This order of precedence is established early in life and its built-up structure changes very slowly. The external circumstances influence the way these needs are interpreted and the way they can be realized. A person who considers his life to be comfortable and financially secure does not emphasize the basic needs but gives priority to creative needs and the need to develop his personality. Care based on needs perceived by the patients

Some researchers and clinical rheumatologists have shown an interest in treatment which is based on the needs perceived by the patients (Berglund, 1975; Lorig et al., 1985). Care planning designed in this manner means that the treatment efforts are directed towards a well-defined goal which takes the practical reality of the patient into account. By concentrating on the perceived needs of the patient, the care providers enter into the individual’s own conceptual sphere. Adaptation to new knowledge, new ways of living and changed circumstances takes place at a pace which is determined according to the individual’s own ability, thus reinforcing his self-confidence and belief in his ability to cope with his own life circumstances and personal care.

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Other researchers have also emphasized the importance of the patient’s own perception of his ability to influence his circumstances as well as the availability of resources for the patient’s rehabilitation and adaptation to his disease (Ferguson and Bole, 1979; Jette, 1982; Cohen and Syme, 1985). Another way of focusing on the perceived needs of the individual is to obtain information about the patient’s “self-efficacy” within specific areas that are closely related to the consequences he perceives to be a result of his disease (Bandura, 1977; Lorig et al., 1989). In the care process, the importance of focusing on the issues and problem areas perceived by the patient to be the most urgent is stressed. Through committed efforts by those close to him and by the health care staff, the patient may be helped to strengthen his weak areas of self-efficacy. Through the development of nursing theories, health care has increasingly been focused on the importance of analysing each individual’s physical and mental needs as a basis for utilizing the individual’s own resources and those of his immediate environment in order to preserve or regain maximal health (La Monica, 1979). According to these theories, nursing should be based on a holistic perspective and emphasize the importance of the patient’s own perceptions about health, ill-health and need of care. Well-being is achieved by developing the patient’s selfesteem and ability to manage on his own. The importance of the patient’s immediate environment is emphasized, based on the rules of systems theory (von Berthalanffy, 1968). For this reason, the members of the patient’s family and other people close to him should be involved in the care process. The influence of psychosocial factors on health perception

The importance of psychological factors for the perception of pain, state of health and well-being has become increasingly clear (Kazis et al., 1983; McFarlane and Brooks,

1988; Hagglund et al., 1989; Berglund and Persson, 1990). Factors such as weak social support, isolation and stress have been shown to increase the sensation of pain (Parker et al., 1988). In addition, different psychological defence mechanisms, such as denial and projection, may deter a person who has been taken ill from seeking care. The threat of an enforced change in one’s way of life is often perceived as such a mental strain that one would rather deny or reformulate one’s problems (Caplan, 1970). Moreover, persons suffering from joint complaints seem to associate their current pain or limitations of movement with age-related symptoms (Felts and Yelin, 1989). Furthermore, various studies have demonstrated that people who seek help in psychosocial matters turn to the somatic health care service (Kasl and Cobb, 1966; Genell-Andren and Rosenqvist, 1985; GenellAndrCn and Rosenqvist, 1987). Being somatically ill is regarded as more acceptable than seeking help from a psychiatrist or the social welfare service due to mental or social problems. It may also be difficult for the person seeking care to distinguish psychosocial needs from purely medical ones, as worry and anxiety easily cause physiological reactions, which may cause different somatic symptoms (Pelletier, 1984). At the same time, hints from the patients about problems in their daily lives may unconsciously make the care providers avoid eliciting information about these problems, as they may be a painful reminder of their own worries and frustrations. In consequence, the picture painted by the patient of his rheumatic symptoms may be difficult to separate from the influence of some other disease, dejection or mental and social factors. The design and testing of different methods of measurement have therefore in recent years engaged several researchers in the rheumatological field (Fries, 1983; Liang et al., 1985; Sullivan, 1991). The design of measuring instruments necessitates a comprehensive and descriptive representation of the rheumatic patient’s personal cir-

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cumstances. A combination of both subjective and objective measures appears to be needed. In the practical work, there is obviously also a need for a stronger psychosocial commitment from the health care staff to discover and understand the connection between somatic symptoms and psychosocial issues. Psychosocial effects of a rheumatic disease

Many rheumatic patients have vividly described how pain and stiffness have unexpectedly struck them, changing their lives. Some of these patients received care quickly by rheumatologists, including intensive medication and physical treatment, but the symptoms were not alleviated as fast as desired and needed for them to be able to cope with the everyday problems caused by the disease. Many of these patients experienced this first period as a “nightmare”. In other cases, the joint symptoms started insidiously. In the beginning, the impact of the disease on the patient’s functional ability was small, making it possible for both him and those close to him to adapt slowly to the changing conditions. Most frequently, their first contact with the health service was not with a rheumatological clinic and, in most cases, a long time passed before their first visit to a rheumatologist took place. Psychosocial effects of a protracted rheumatic disease

Several studies have demonstrated that a protracted rheumatic disease entails a number of negative mental and social consequences for the individual and his immediate environment (Andersson et al., 1985; Frank et al., 1988; Hawly and Wolfe, 1988; Parker et al., 1988). As the rheumatic disease progresses, the patient’s gradually increasing functional impairment means that his relationship with his family, friends and colleagues changes. He has a growing need of the help of others, which diminishes his self-confidence and changes his sense of his own identity. The opportunities for meeting and being together with other people based on his own needs of

emotional closeness are reduced, while new relationships with health care personnel and other public servants are formed, although under different conditions. The everyday life of these patients is changed when time has to be set aside for visits to the doctor, specimentaking, mobility exercises and rest. Domestic and occupational work as well as leisure pursuits have to be adapted to the functional impairment caused by the disease. Expenses for care and reduced working capacity make inroads into the patient’s finances, at the same time as the reduced ability to be gainfully employed has a detrimental effect on his selfesteem, as for most people the performance of work tasks provides a frame of reference for their self-perception. The difficulty of predicting, at an early stage, the development of the disease poses great problems for patients and those close to them in planning for the future. Most people find this situation extremely trying, at the same time as information about an increased risk of mortality from chronic arthritis (Rasker and Cosh, 1989; Pincus and Callahan, 1989) raises the level of anxiety (Lipowsky, 1975). For this reason, symptoms of anxiety and depression are not uncommon. Crises continually occur, which is only natural as the patient repeatedly finds himself in situations where his earlier experiences and habitual reactions are inadequate (Caplan, 1970). However, through adjustment, step by step, to the different phases of a crisis (shock, emotional reaction, processing and reorientation), it is possible for the patient to build new models for solving problems. The cost to society of health care and social insurance is high and leads to a decrease in the gross national product, as a rheumatic disease impedes the individual’s role functions (Yelin et al., 1980; Felts and Yelin, 1989). The ability to be gainfully employed is progressively reduced during the course of the disease. However, the design of the work and the availability of gainful employment have been shown to determine the conditions for the pa-

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tient’s individual capacity to work (Yelin et al., 1987). Research on function and well-being in the initial stage of the disease Few studies have been made of the functional and psychosocial consequences emerging in the initial stage of a rheumatic disease. A Swedish study (Eberhardt, 1989) established that the majority of patients (70%) who had suffered from rheumatoid arthritis for a maximum of two years were to be found in Functional Class II, whereas 10% had a good Functional ability (Class I) (ACR, Steinbrocker et al., 1949). In the course of the twoyear follow-up study, the functional ability of 16% of the patients was improved. The level of anxiety and depression was shown to be low. Also, anxiety was reduced in the course of the study, as has also been found elsewhere (Hawley and Wolfe, 1988). In studies carried out since the mid- 1980s at the rheumatological clinics in Greater Gothenburg (Sahlgrenska Hospital, Gothenburg and Molndal’s Hospital, Miilndal, in cooperation with the Health Care Research Unit, Department of Medicine, Sahlgrenska Hospital), the emphasis has been on investigating the patients’ psychosocial needs and expectations before their first visit to a doctor at the outpatient specialist clinics. Moreover, the patients’ health perception and sickness impact as well as satisfaction with the care received six and twelve months after the first visit have been studied in unpublished studies by Samuelsson et al. At presentation, all patients had joint complaints consisting of pain and/or stiffness in at least one joint. Using various measuring instruments, the Sickness Impact Profile (SIP) (Bergner et al., 1981), the Hospital Anxiety and Depression Scale (HAD) (Zigmond and Snaith, 1983) and the General Health Rating Index (GHRI) (Allyson and Ware, 1981), results were obtained with regard to the patients’ mental and social functional levels, mental health, and health and sickness orientation. As we considered it important to gain a deeper

understanding of the patient’s difficulties and problems caused by his disease as described by him, the studies were complemented by a special questionnaire. This questionnaire dealt with the patient’s perception of what problem he perceived to be the most difficult, what his thoughts were about the future and what was most important to him in order to be able to cope with his disease. The results obtained were in one of our studies (Samuelsson et al., to be published) compared with the corresponding findings from earlier studies of groups of patients suffering from rheumatoid arthritis in different functional classes, according to Steinbrocker (Steinbrocker et al., 1949). Although 50% of the patients had had their rheumatic symptoms for less than two years, the study revealed that the circumstances of the patients had changed in many respects. Two-thirds of the patients had some form of chronic arthritis. The level of their functional ability (according to SIP) was equal to that reported by arthritic patients when they had suffered from the disease for 8-10 years (Ahlmen, 1990). Further, their level of anxiety (Anxiety, HAD) was equal to that of rheumatoid arthritis patients in Functional class IV. Their current health status (Current health, GHRI) was perceived to be deteriorated when compared with a general population group (Allyson and Ware, 1981). However, the patients in our study reported a lower degree of sickness orientation (Sickness orientation GHRI) than the control group. Their ratings of quality of life were in general on a high level (VAS scale: 0- 10) despite the changes already caused by the disease and the worry expressed by many patients. This result, however, compares well with other studies where dissatisfaction with one’s living circumstances has been shown not to have any obvious connection with difficulties in coping with everyday life (Felton et al., 1984; MC Farlane and Brooks, 1988; Parker et al., 1988). Those persons who in the interviews stated that they had relationship problems reported con-

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sistently lower ratings. Further, the patients expressed specific expectations of the specialist care to be received in terms of improvement, continuity (i.e. seeing the same doctor) and participation in the treatment. Hence, the study showed that there is a need of psychosocial support in the initial stage of the care of rheumatic patients, although the work to provide psychosocial treatment appears to require a different design from that provided in the later stages of a rheumatic disease. What Effects of the Disease Does the Patient Consider to be the Most Diffkult?

Several studies carried out with regard to rheumatic patients have described that it is worry about their functional impairment, pain and uncertainty about the future that are perceived to be the most depressive factors (Andersson et al., 1985; Parker et al., 1988; Frank et al., 1988), which was also confirmed in our study (Samuelsson et al., to be published). The desire to be free of pain was great but it was less at the time of the follow-up investigation after six months. The patients in our study repeatedly talked about their limitations of movement. Their bodies felt old and ungainly and it was a mental strain not to be able to do those things they were accustomed to doing any longer and to feel prevented from performing activities they wanted to perform. It was also a source of dissatisfaction that they did not have the strength or time to take part in as many activities as before and to have to decline taking part in various activities together with relatives and friends. Often the fatigue and pain felt was considerable. They feared the implications of the progression of the disease and becoming dependent on others. Many of the tasks they were used to performing had to be performed by other members of the family or by colleagues, which lowered their selfesteem. For the younger of them and for those on sick-leave, being inactive was difficult. They

did not know what to do in their spare time. At the same time, uncertainty about the progression of the disease and the perceived long wait for the next appointment with their doctor increased their mental tension, despite the fact that this period for most of them did not exceed three weeks. It was most important to them to receive an explanation for their pain and fatigue. The sense of not being useful was more often mentioned by those who had suffered from the disease for a long time and who were retired and elderly. It was difficult to find a task that could inspire feelings of self-esteem and appreciation and in some cases these patients felt that they had nothing to wait for but death. Not being able to make plans for taking part in different activities was perceived as a considerable mental strain. The patients’ rheumatic symptoms had in many cases prevented them from booking holidays or visiting friends and they felt uncertain about pursuing plans concerning education/gainful employment and marriage/having children. Their feelings of guilt towards their family, especially their children, experienced when they felt that their functional impairment changed their family’s way of life, habits and expectations for the future to a large extent, were signiticant. Another cause of frustration was the fact that their outward appearance was healthy and that they therefore were looked upon by other people as such, whereas they themselves did not feel well at all. It was easy to start thinking that the symptoms might be imagined and this affected their sense of identity. Resentment at having to be exposed to other people’s lack of understanding of the functional impairment caused by the disease was not uncommon, and the resulting state of irritability felt unfamiliar and was perceived as mentally distressing. Facilitating Factors

In order to gain a deeper understanding

of

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what factors the patients in our study (Samuelsson et al., to be published) perceived to facilitate their lives, the patients were asked to describe them freely. The descriptions were often given spontaneously by the patients in the course of the interviews. In the next few paragraphs, the main results of the study are reported. A weil-jiinctioning

network

of contacts

Lack of social support, feelings of loneliness and family problems all have a negative influence on the perception of pain in rheumatic patients (Parker et al., 1988; Frank et al., 1988). In our study, the perception of pain was substantial. A feeling of being alone with their problems seemed to increase the patients’ anxiety and level of depression (HAD, P < 0.01). Furthermore, the level of depression, in turn, seemed to have a strong influence on the patient’s general perception of his quality of life (VAS, P c 0.01; a larger number of depressive symptoms - a lower level of quality of life). However, the patients reported that they received the practical help they needed from others, at the same time as they considered their mental and practical need of help to be low. They stressed the importance of being able to solve everyday problems themselves. Only through specific questions in the questionnaires (SIP) did it become apparent that there in fact was a need of help and that the patient’s everyday life did not function in the same way as before. The importance of the support of relatives and friends has been emphasized in many studies (Cobb, 1976; Berkman and Syme, 1979; Ferguson and Bole, 1979; GenellAndren and Rosenqvist, 1985). A person’s social network, i.e. his network of contacts with individuals in his environment, is of considerable importance to his recovery as well as to his falling ill or dying. There is also a risk that any changes in this network and in the pattern of relationships will affect a person’s sense of his own identity, as every human being is influenced by the way others see him (Laing, 1984). A negative self-perception increases the risk of a feeling of hopelessness as well as weariness of life.

Since a patient’s social contacts have been shown to decline continually in number during the progression of his disease and since the level of survival is lower for persons with chronic arthritis (Rasker and Cosh, 1989), it seems essential to facilitate his making new contacts and to reinforce existing relationships. Understanding from persons in the patient’s environment

The majority of the patients (85%) in our study considered their home conditions to be very good. However, they found it essential to receive support and assistance from those close to them without having to ask for it and also that these persons should listen to and take their wishes into consideration. The need for integrity was strong. The patients did not wish their relatives to be present at the visit to the doctor nor that these should be informed about the disease unless they themselves were present. On the other hand, the patients expressed the wish that groups of relatives should receive information in order to improve their knowledge of the disease and its treatment. It was important to have someone to turn to, whom one could trust. More than half of the patients said that they had someone to talk to when they needed it. In addition, most of them perceived that their colleagues were understanding towards them. For the selfemployed, the burden of responsibility was felt to be heavy. Half of the patients expressed a wish to meet with others with similar problems on a group basis. The need for contact with other patient groups had increased six months after the first visit to the rheumatologist. Resilience and fighting

spirit

The majority of patients were clearly hopeful about the future; “I shall become better”, “I intend to finish my education”. They talked about the necessity to take each day as it comes and to search actively for solutions to the practical problems caused by the pain and stiffness.

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Having a specific goal was also important. “I have to cope for mother’s sake”, “I have made up my mind to pursue this education and I shall succeed!“. At the same time there was a need to feel useful: “The children need me”. The ability to struggle hard was regarded as an important quality. Moreover, it was considered necessary to have the courage to take a bright view of the future, to be happy and to keep one’s sense of humour: “I am not in the habit of giving up”. The idea of being able to hope for something, to be free from pain and sometimes also to feel that the pain was less acute and “to become so well that I shall be able to manage on my own” were other thoughts that seemed to keep these patients’ spirits up. In general, rheumatic patients have been shown to find it difficult to look ahead on account of intervening psychological defence mechanisms (Andersson et al., 1985). Also, those patients in our study with a relatively recently diagnosed disease tried to brush aside their anxiety and preferred not to talk about their life circumstances in the context of their symptoms. They seemed to project their worries concerning themselves and their disease on others; “How will my husband be able to manage if my condition deteriorates?“, “I only wish that my children will be happy”. Many wanted to avoid thinking about the future: “I have no thoughts about the future, only dreams”, was not an uncommon answer. Expectations of the Specialist Care in the Initial Stage of the Care Process Expectations concerning the design of the treatment

In the majority of the cases in our study (Samuelsson et al., to be published), the patients hoped to receive help that would alleviate their pain and increase their mobility. Moreover, they hoped to take part in the design of an acceptable rehabilitation programme. Most of them had expectations that the treatment would make it possible for them to continue in gainful employment and that

they would be able to remain independent of others. They all harboured clearly expressed hopes of continuing their visits to the specialist clinic and to continue seeing the same doctor. In their view, it was important that the care was easily available both with regard to visiting and telephone hours and it gave them a feeling of security to be given detinite times for their next appointments with their physician. It was also desirable to be able to reach the health care staff at all hours to obtain information of one sort or another. The follow-up measurements revealed that the patients were satisfied with the information they had received concerning their disease, but that there was a strongly felt desire to have the opportunity to discuss alternative forms of treatment. Moreover, for many of them questions about their disease still remained unanswered. Furthermore, they emphasized the importance of receiving written information about clinic routines with regard to, for example, specimen-taking and telephone hours, while they considered the oral information received on how to continue the, treatment in the home to be sufficient. Desired psychosocial support from the health care staff

The patients did not wish to talk to their physician about their circumstances and personal problems but stressed that it is important that other health care staff show psychological and personal commitment. This has been supported by other studies (Wright and Hopkins, 1990). The patients in this investigation primarily wished to discuss the medical consequences of their disease as well as suitable treatment with their doctor, whereas they wished to receive emotional support from the nurses or other paramedical staff. It felt more natural for them to turn to these groups of staff when it came to personal problems. Only one of the patients had earlier been referred to or himself contemplated contacting a psychologist or medical social worker

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because of the psychosocial problems he experienced as a result of his disease. The majority of patients found it highly satisfactory to be given the opportunity to talk to a medical social worker during the interview. “Getting it off one’s chest” gave them a feeling of satisfaction and they expressed a wish to continue the dialogue. Knowledge of the support offered by society to handicapped people was scant. Half of the patients being of working age regarded it as essential to discuss their professional and educational prospects. At the interview, if the patient had any questions about social support, this kind of information was supplied. The need for information seemed to be fairly well satisfied, according to the follow-up questionnaire, as only a few of the patients considered that they needed additional information. However, knowing where to turn for further information gave them a sense of security, if the need should arise further on. Psychosocial Treatment in the Initial Stage of the Care Process The framing of the implications of the symptoms of the disease as perceived by each patient has to be considered in relation to his specific diagnosis and the current phases of his life, crisis and disease. However, some common factors can be distinguished with respect to the patients’ experiences regarding the psychosocial effects of the specific symptoms of the disease on their everyday lives. It ought to be possible to use the results arrived at in the above investigations in practical clinical work. To be offered and to accept responsibility

Greenfield et al. (1985) and Lerman et al. (1990) established that patients appeared to be more or less satisfied with the way they were treated in the initial stage of the medical treatment, even if stress and lack of time were considered to have a negative influence on the contact with their doctor. This was also found in our study (Samuelsson et al., to be publish-

ed). However, several of the patients expressed a clear wish to be treated like an “adult” fellow human being and to be able to feel that it was permissible to express one’s thoughts about the proposed treatment. While they, to a great extent, wished to solve any mental and social problems themselves without interference from their family and the health care staff, they expressed a desire to receive personal and committed psychological support from the health care staff when they themselves wanted it. The need for gradually increasing assistance from the rheumatic patient’s network of contacts as well as from the health care staff easily generates a lack of independence in the continued care process. In the course of this process, other people learn more and more details about the patient’s everyday life. The balance between independence and dependence changes (Hamilton, 1980), at the same time as the increasingly frequent role changes create uncertainty about one’s own identity. Frequently, confidence in one’s ability to manage one’s own life is shaken (Miller and Norman, 1979; Garber and Seligman, 1980). There is a risk that, in the course of the treatment, the patient will either become extremely dependent or extremely independent, aggressive, defiant and self-asserting. Thus, it is essential to try to decide, together with the patient, to what extent he needs support in order to be able to maintain his self-esteem and independence. In this, the sense of security, participation and trusting support on the part of those who provide the care have been shown to be important (Lerman et al., 1990). Being offered responsibility and being able to put forward demands reduce the risk of being caught in a sick-role pattern of behaviour. The need for realistic, encouraging information

The majority of the patients in our study expected to receive answers to their questions about the symptoms of the disease and its treatment. In spite of the fact that our followup studies showed that, to a large extent, the patients were satisfied with the information

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received, many questions regarding recovery, prognosis and alternative methods of treatment still remained unanswered. Their hopes for improvement and recovery were considerable before their first visit to the doctor but were significantly lower six and twelve months later. It can be difficult to give realistic information to a patient about a chronic disease and its prognosis without reducing his hopes and weakening his mental strength. At the same time, it is necessary that he should accept reality in order to be able to adapt to the new circumstances. Information enables the patient to gain a realistic insight into his own resources and limitations by gradually raising his level of knowledge. However, the patient’s use of psychological defence mechanisms (e.g. denial) is an important aid in his step-by-step adaptation to the disease (Caplan, 1970). In this way, he can learn to accept the changes to his life gradually and in pace with his changing frame of reference. The extent to which the patient himself is able to influence the state of his disease has been shown to have an effect on his search for information (Janis and Mann, 1977). If the patient is unable to influence the state of his disease, denial of the information makes him more satisfied with the care received (Bandura, 1977). In general, persons who do not believe themselves to be capable of solving situations which they find unpleasant have more negative expectations about these and thus avoid them. Only by reinforcing the individual’s sense of self-efficacy within the current problem area, can his behaviour of avoidance be changed into a more active adaptation to the repeated changes to his life (Bandura, 1977). A large number of researchers (Lazarus and Folkman, 1984; Felton et al., 1984; Parker et al., 1988; Berglund and Persson, 1990) have attempted to develop explanatory models for analyzing the progress of a patient’s readjustment process. The patients’ expectations of the rheumatic care were exceedingly high in our study. Too

high expectations may involve a risk of disappointment. On the other hand, a patient with positive expectations is more satisfied with his treatment than a patient who expects many problems (Rosillo and Vogel, 1970; Johansson and Sullivan, 1975; Kiyak et al., 1988). Negative expectations lead to more pain and a perception of inability (Roberts et al., 1986). Information based on facts of future risks appears to generate a more stable mental balance and a higher level of satisfaction with the care received. However, few patients in our study seemed to be aware of the necessary routines for diagnosing a rheumatic disease and for its treatment. Crisis intervention Denial that the disease has an impact on their ability to perform occupational work or work in the home, or on their ability to continue to perform recreational activities, occurred in the majority of the patients in our study, which is consistent with theories of crisis and stress (Caplan, 1970). There are clear indications that an unmistakable reaction of crisis does not take place until the patient’s disease is diagnosed as a “serious, chronic disease”. Instead, it appeared as if the worry about the symptoms of sickness before the first visit to the doctor was often projected on social problems. Among other things, earlier relationship problems surfaced during the interview and the patients’ openness about both mental and social problems proved to be surprisingly great. In this way, the interview frequently had a psychotherapeutic effect, as the patient was given the opportunity to talk about grief and disappointment experienced earlier. However, the patients emphasized that it did not feel natural for them to raise the subject of personal problems with their doctor. Therefore, it seems to be necessary for the health care staff to adopt an empathetic and information-seeking approach towards the patients.

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It is important to tackle social issues and related experiences of crisis in the initial stage of the disease, when they are perceived to be urgent by the patient, in order to avoid repression. If any underlying mental and social problems are not properly tackled then, increased mental problems may appear later (Caplan, 1970). Thus, the patient must receive help to express his feelings of grief, pain, guilt and anger at the same time as the person who provides the care reinforces his hopes that a change for the better is possible (Caplan, 1970). However, further research is needed to better understand this process and how the therapy should be designed in order to be as effective as possible. Individual counselling

Because of the impact of the disease on the balance between dependence and independence, support is needed to retain the strength of the patient’s perceptions of his own resources as well as of those around him. Quite frequently, the patient’s sense of dependence disappears when his condition improves or when the system of which he is a part has reached a state of equilibrium (von Berthalanffy, 1968). The purpose of counselling is to reduce symptoms, such as anxiety and worry, without changing the underlying structure of the individual’s character and without dealing with the causes of basic conflicts. In most cases, however, this leads to an increased insight into these conflicts. The methodology of the support provided is designed “to have a person on one’s arm”, at the same time as the patient should be given the opportunity to try his own strength. The patient should be made to feel that the care provider believes in his ability to manage his own life and for this purpose it is important that a trusting relationship is built with one of the health care staff during repeated talks. The care provider’s attitude should be characterized by understanding, permission and firmness (Rogers, 1955). When the symptoms are depressive, triggered by a somatic disease, the patient should

be offered support and closeness. The conflicts causing the negative self-perception and the anxiety have to be tackled. It may be necessary to use ataractic drugs or antidepressants. Through counselling, the individual receives help to become aware of situations in which his self-deprecating feelings are repressed. A social environment that does not provide stimulation and satisfaction reinforces the negative self-perception patient’s (Cullberg et al., 1981) and it is thus important that his personal circumstances are investigated. It may sometimes be necessary to change the patient’s external conditions. Family support

Despite the fact that relationship problems were accentuated among couples and that there was uncertainty among relatives as to the development of the disease and its treatment, the majority of the patients in our study wished to tackle these problems themselves without help from the health care personnel. However, the relationship problems may become aggravated if, for instance, earlier problems are activated during the early stage of the disease which are not tackled. In the resulting deeper crisis, the patient may then retrogress (revert to an earlier, primitive pattern of reaction), become more passive and his sense of helplessness be further strengthened (Garber and Seligman, 1980). This reinforces the reaction of crisis and perception of powerlessness among those close to him, that is, of being unable to help the sick person. It is not uncommon that feelings like these lead to inadequate reactions from people close to the patient, such as consciously or unconsciously averting expressions of affect from the sick person or giving him an excessive amount of assistance. Persons suffering from rheumatoid arthritis have been shown to have a higher divorce rate and a lower marriage rate than other people (Medsger and Robinson, 1972). It is therefore essential that relationship problems are noticed as early as possible. There is reason to assume that information to groups of relatives

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can be perceived as less threatening and less directed to one special person and may therefore be more acceptable to the patients. If more information were given at visits to the doctor or in contact with the health care staff about the fact that the symptoms and consequences of the disease give rise to psychological reactions both in the person who has been taken ill and in those close to him, and thus exert a strain on all relationships, it would, in all probability, be more natural to talk about these matters with one’s family. Counselling with the patient’s family and with couples should be regarded as a means of releasing and utilizing more effectively the collective energy of those who belong to the individual’s social system (Lippitt et al., 1958). Social information

Knowledge of social support measures with respect to rheumatic diseases was shown in our study to be scant. It is therefore important to continually provide the patients with information on available social support measures, based on the specific medical, mental and social consequences of the disease. In addition, the patient should also be encouraged to take up new interests as well as be reassured that he is capable of abandoning his preoccupation with the losses suffered due to the disease. It should be possible to provide the patient with better opportunities for gradual adjustment to his own resources by supplying information about the possibilities of receiving help to find new aims in life in the initial stage of the disease (Parker et al., 1988). Additional practical, social resources are successively needed during the treatment process in order to enable the patient to satisfy various basic needs, although these can probably only be received and accepted when his adaptation to the disease has begun. Group discussions and group education

Different models for learning to live with one’s disease have been developed and tested. Half of the patients in our investigation took

a positive attitude towards meeting with others to discuss their experiences and problems caused by the disease and to receive information about the prognosis and treatment. Most people reported that it was essential to take an active part in one’s changed circumstances. Patient group discussions, in which the members can share their experiences with others, and in which time is allocated to psychological intervention of the psychosocial consequences of the disease as well as to information about related medical, physical and social aspects, have created in these patients an increased sense of security, improved adaptation ,and less anxiety and pain (Bradley et al., 1987; Paulsen, 1990). Also other methods have been developed (Lorig et al., 1985.) for enhancing a group’s ability to give support and for raising the level of knowledge among the members concerning rheumatic diseases. Here, the purpose of the education is mainly to provide training for the patients in adapting their lives to the limitations of their functional impairment, to develop routines for training and to motivate them to make active, concerted efforts to attain a higher quality of life. There are thus good reasons, in the initial stage of the treatment, to make use of the patient’s obvious need of support and understanding from others, and his eagerness to learn more as well as of the fact that he is used to being able to start new activities whenever he wants to. Need for Continued Research It is difficult to make a general interpretation and description of people’s living circumstances, wishes and psychosocial needs on the basis of the results of scientific investigations. Questions about the physical and psychosocial consequences of a disease generate worry, which may influence the pattern of response. The issues related to mental and social aspects may seem confusing from the viewpoint of the patient’s expectations of his impending visit to the hospital. Furthermore,

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each patient possesses unique information about the psychosocial consequences of his rheumatic disease, based on his specific experience of life, personality, and experience of the phases of crisis and disease he is currently undergoing. However, some psychosocial consequences appear to be common even if the patients are in an early stage of the rheumatic disease. Our studies (Samuelsson et al., to be published) included interviews with patients with joint complaints concerning their needs and expectations before the diagnosis of a rheumatic disease had been established. Six to twelve months after their first visit to a doctor, 50-75% of the studied patient groups were diagnosed as having a rheumatic inflammatory disease. Research on the psychosocial consequences of a rheumatic disease has hitherto consisted largely of studies of patients who during a long period of time have had a specific diagnosis, e.g. rheumatoid arthritis, SLE or Morbus Bechterew. Extended studies are required in order to determine whether our findings should be adapted to diagnosis-oriented health care planning. In addition, further research is needed in order to explore how patients’ expectations of the design of health care influence their satisfaction with the care provided as well as their quality of life, and to establish whether improved psychosocial care at an early stage of the disease will speed up and/or facilitate the patients’ adaptation to their disease. References Ahlmen, M. (1990). Overall health status in women with rheumatoid arthritis. A comparison between patients and a population. Effects and outcome predictors of multi-disciplinary team outpatient care. Thesis. Department of Rheumatology and Medicine l/Health Care Research Unit, Sahlgrenska Hospital, Gothenburg, Sweden. Allport, G.W. (1964). Personality and social encounter. Boston: Beacon Press. Allyson, R.D. and Ware, D.J.E. (1981). Measuring Health Perceptions in the health insurance experiment. Santa Monica: The Rand Corporation, Department of health and human services. Andersson, K.O., Bradley L.A., Young, L.D., MC Daniel, L.K.

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Correspondence to: Anita Samuelsson, MS, Rheumatology Section, Milndel Central Hospital, 431 80 Miilndal, Sweden.