The life adjustment process in chronic pain: Psychosocial …downloads.hindawi.com/journals/prm/2004/373479.pdf · 2019. 8. 1. · The life adjustment process in chronic pain: Psychosocial

Pain Res Manage Vol 9 No 3 Autumn 2004 145

The life adjustment process in chronic pain:Psychosocial assessment and clinical implications

Ann-Christine Gullacksen PhD1,2, Jan Lidbeck MD PhD2

1Department of Social Work, School of Health and Society, Malmö University, Malmö, Sweden; 2Pain Management Clinic, Hospital ofHelsingborg, Helsingborg, Sweden

Correspondence: Dr Jan Lidbeck, Pain Management Clinic (Smärtrehab), Hospital of Helsingborg, Drottninggatan 3, SE-252 21Helsingborg, Sweden. Telephone +46-42-102840, fax +46-42-102845, e-mail [email protected]

A-C Gullacksen, J Lidbeck. The life adjustment process inchronic pain: Psychosocial assessment and clinical implications.Pain Res Manage 2004;9(3):145-153.

Previously, the subjective dimension of suffering from chronic pain hasonly infrequently been reported in the literature. However, in recentyears qualitative psychosocial research has added new perspectives thatdescribe how suffering from chronic pain affects life. The present paperrefers to a qualitative study on the subjective experience of womendiagnosed with chronic musculoskeletal pain. In a model for life adjust-ment, turning points and passages are described in three stages. InStage I, there was increasing pain, disability, and physical and mentalexhaustion. Alongside frustration and chaos there was a struggle torestore daily life; therefore, the picture of a healthy future was stillintact. Acknowledging that pain may not be temporary marked thetransition into Stage II, which was characterized by sorrow and loss,and the picture of the future faded. Once given an explanation ofpain (a ‘pain diagnosis’), a new understanding developed, with gradualimprovement of coping skills. Adjustment eventually progressed intoStage III with the constructive use of past experiences, and compe-tence and control increased. A new picture of the future emergedthat could be handled. However, living with pain still required regularmaintenance work.The outcome of qualitative investigations, including the one presentedhere, is discussed along with certain clinical implications. The follow-ing clinical implications are reviewed in the present study: distrust fromhealth professionals may obstruct the adjustment process, prolong sickleave and hinder rehabilitation; providing the patient with a diagnosis(eg, an explanation of pain mechanisms) will facilitate life adjustment;acknowledging the individual experience of suffering from chronicpain will make concepts related to pain behaviour, secondary gain andsick role liable to question; and vocational rehabilitation measuresshould be harmonized with the actual stage of life adjustment.

Key Words: Chronic pain; Life adjustment; Pain rehabilitation;

Psychosocial assessment; Qualitative studies

Le processus d’adaptation à la vie en cas dedouleur chronique : Évaluation psychosocialeet répercussions cliniques

Par le passé, on a rarement rendu compte de la dimension subjective de ladouleur chronique dans la documentation scientifique. Cependant, cesdernières années, des recherches psychosociales qualitatives ont apportéde nouvelles perspectives pour décrire l’influence de la douleur chroniquesur la vie. Le présent article porte sur une étude qualitative del’expérience subjective de femmes chez qui on a posé un diagnostic dedouleur musculosquelettique chronique. Dans un modèle d’adaptation àla vie, les points tournants et les passages sont décrits à trois phases. À laphase I, la douleur, l’incapacité et l’épuisement physique et intellectuelaugmentaient. En plus de la frustration et du chaos, on observait une luttepour retrouver la vie quotidienne. L’image d’un avenir en santé demeuraitdonc intacte. L’admission de la possibilité que la douleur ne soit pastemporaire marquait la transition à la phase II, qui se caractérisait par duchagrin et un sentiment de perte, tandis que l’image de l’avenir s’estompait.Après avoir reçu une explication de la douleur (un « diagnostic de douleur »),le patient gagnait une nouvelle compréhension, accompagnée d’uneamélioration graduelle des habiletés d’adaptation. L’adaptation finissaitpar favoriser le passage à la phase III, marqué par l’utilisation constructivedes expériences passées et par une augmentation de la compétence et ducontrôle. Une nouvelle image d’un avenir acceptable émergeait.Cependant, la vie avec la douleur continuait à exiger un travail régulierd’acceptation.L’issue de recherches qualitatives, y compris celle qui est présentée ici,s’accompagne de certaines répercussions cliniques. Les répercussionscliniques suivantes sont analysées dans la présente étude : La méfianceenvers les professionnels de la santé peut bloquer le processusd’adaptation, prolonger le congé de maladie et entraver la réadaptation;le fait de fournir un diagnostic au patient (p. ex., une explication duméca-nisme de la douleur) facilite l’adaptation à la vie; le fait de convenirde l’expérience personnelle de la douleur chronique permet de poser desquestions sur les concepts reliés au comportement révélateur de ladouleur, au gain secondaire et au rôle de malade et les mesures deréadaptation au travail devraient être harmonisées avec la phased’adaptation à la vie.

In recent decades, chronic pain has been studied intensely,and various disciplines of research have contributed to new

knowledge. Biomedical research has increased our under-standing of dysfunctional pain modulation mechanisms withinthe central nervous system (1-3), and psychological investiga-tion has added information about how to cope with everydaylife (4). The growing body of knowledge about the complexityof chronic pain has also included results from psychosocialresearch on treatment and rehabilitation (5,6).

Qualitative research and the subjective experience ofchronic pain as a processIn psychosocial research, a growing interest has arisen in thesubjective experience of chronic pain. Through a phenomeno-logical approach based on narrative accounts, a defined psy-chosocial perspective has been developed that describes theexperience of chronic pain as a process. Since the early 1980s,qualitative research has used the process perspective todescribe how disability and illness affect life. In this context,

ORIGINAL ARTICLE

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the term ‘biographical disruption’ has been proposed by Bury (7)to focus on the discontinuity of the life adjustment processthat may result from long-standing disability. Strauss andCorbin (8) have contributed to the understanding of thebiographical illness process by describing its two dimensions,‘illness trajectory’ and ‘life trajectory’, which continuously andmutually affect one another.

Previous qualitative studiesPreviously, pain research has paid little attention to the livedexperience of patients suffering from chronic pain (9).However, the value of qualitative research ‘as windows into themeaning that pain holds for individuals’ has recently beenemphasised in an article published in Pain: Clinical Updates(10). In recent years, an increasing number of qualitativeinvestigations have been reported in the literature (9,11-18).The essentials of some of these studies will be described below.

In a pioneer study by Schaefer (13), in depth interviewswere conducted over a period of one to two years with womendiagnosed with fibromyalgia. A process of ‘struggling to main-tain balance’ was described with the goal of finding an accept-able way to live with pain. That process involved a sequence ofthemes that were described as “Recalling perceived normality”;“Searching for a diagnosis”; “Finding out”; “Moving on”; and“Relinquishing the struggle”. Burckhardt et al (16) described asimilar course, also in a study of women with fibromyalgia. Thesubjects primarily reported “getting through a period of uncer-tainty, bearing about the illness and its treatment”, and finally“coming to terms with having a chronic problem, and estab-lishing new patterns of life”.

The view of the future plays a significant role in qualitativeresearch. Hellström et al (15) described the relationshipbetween chronic pain patients’ outlook on the future, theirpsychosocial features and coping on the multidimensional paininventory scale (19). ‘Dysfunctional’ copers and ‘interpersonallydistressed’ individuals exhibited a negative view of the future,whereas the ‘adaptive coper’ subgroup had a more positive view.The authors suggested that an adequate intervention might pro-vide patients with a more constructive view of the future andinitiate an increased motivation for health-seeking behaviour.

Walker et al (9) described the early lived experiences ofpatients suffering from chronic back pain. Similarly to Schaefer(13), some major themes were identified: “The pain takes over”;“Sense of loss”; “Being in the system”; “They (others) don’tunderstand”; and “Coming to terms”. The patients expressedgreat disappointment with the health care system, and felt mis-understood. They were frustrated because they were not pro-vided with an explanation of pain and they were frequently toldthat the pain “was in their minds”. The study described how thehealth care system encouraged powerlessness and contributed tothe development of chronic pain. These experiences made it dif-ficult for the patients to come to terms with their situation and,similarly to the description presented by Hellström et al (15),most could not see a future for themselves.

Finally, a study by Åsbring (17) illuminates the biographicalwork done by women with fibromyalgia and chronic fatigue syn-drome, including a re-evaluation of their former identity andlife. Åsbring described the following themes: “An earlieridentity partly lost” and “Coming to terms with a new identity”(17). The main findings were that the illnesses involved aradical disruption of the women’s biography, which had pro-found consequences for their identity, particularly in relation to

work and social life. Furthermore, the biographical disruptionwas partial rather than total, calling for different degrees ofidentity transformation. Many of the women also experiencedpositive “illness gains”, such as new insights, increased self-respect and greater personal integrity.

All the investigations referred to above describe adjustmentprocesses to everyday life in a broader perspective. The simi-larity of the life adjustment processes, as reported in part or inwhole in these previous studies, is striking.

BACKGROUND AND OBJECTIVESIn qualitative research into chronic pain, few studies describethe process of life adjustment as a whole model. There is still alack of sufficient answers to questions such as ‘which internalor external forces are active in the process of adjustment andhow are they interrelated? How can one learn to live withchronic pain?’ A previous sociopsychological qualitativeinvestigation (20) was designed by one of the authors (ACG)of the present paper to contribute some answers to these ques-tions. In that study, the specific objectives were as follows: todescribe and identify significant aspects and themes in thecourse of life change because of chronic pain; and to propose aclinically useful model for that adjustment. A summary of theessential findings formed the basis for the present paper, andthe methods, findings and discussion sections refer to thatqualitative investigation.

The practical application of the proposed model for adjust-ment to chronic pain in our setting has focused on the need tomodify the pain management program. Based on our experi-ences of the life adjustment model, a separate discussion relat-ing to some clinical implications has been included. In thatfinal section, certain issues that may be of importance forprofessional pain rehabilitation will be discussed.

METHODSA qualitative method was used to collect data. As in other quali-tative research, the ambition has been to present an intimateaccount of the ‘experienced inside perspective’ (21) by describingthe thoughts and beliefs of the participants. A phenomenologicalframework was used to analyze the data (22-24).

Criteria for participationThe main criterion for participation was as follows: the intervieweeswere those who were referred to a tertiary pain rehabilitation setting(the pain management clinic) for participation in an outdoor painmanagement program during two weeks. The interviewees wereinformed that the investigation did not involve assessment of treat-ment. Further, they should have been diagnosed with commonchronic musculoskeletal pain syndromes (for a duration of six months ormore); specifically, the diagnosis was either myofascial pain syn-drome (25), synonymous with ‘trigger point syndrome’ as describedby the International Association for the Study of Pain (26), orfibromyalgia (27). Individuals with myofascial pain syndrome andfibromyalgia were included because these two disorders are amongthe few chronic musculoskeletal pain syndromes that haveproposed diagnostic criteria (25-27) and were among the mostfrequently diagnosed pain syndromes in the setting (28).

The subjectsThe sample investigated consisted of 18 subjects consecutivelyfulfilling the admission criteria.

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Pain Res Manage Vol 9 No 3 Autumn 2004146


Eleven subjects, all women, were diagnosed with myofascialpain syndrome and seven other women with fibromyalgia. Theparticipants ranged in age from 23 years to 55 years (mean, 42 years),and reported having the illness between one and nine years (mean,three years). Their current sick leave ranged from 0.5 to three years(mean, one year), and the majority (60%) were blue-collar work-ers. The sociodemographic characteristics were representative ofthe general patient population referred to the clinic (28).

Data collection methodsThe interviews were conducted in the women’s homes by one ofthe authors (ACG) who at the time of the investigation did notbelong to the staff of the pain management clinic. The first inter-view was done before the women took part in the rehabilitationprogram, and the second after the program had been completedand two months after the first interview. The interviews, whichwere taped, lasted 1 h to 2 h. The women were asked to describetheir feelings and thoughts about pain from the time when troublewas first experienced until the present situation. The main theme ofthe interviews focused on how pain had entered their life, andhow they coped with pain then and at the time of the interview.The interviews, which could be characterized as reflective dia-logues (29), were intended to stimulate the women to give theirlife story from this particular period of life (30,31). This interviewtechnique made it possible to describe the pain experience within alife context and from the person’s biographical perspective.

Data analysisThe interviews were transcribed verbatim and were analyzed by usingan inductive method (24,32). Themes that emerged in the first inves-tigative step were used as sensitizing concepts (33) in the analysis ofthe material. Examples of such concepts were different means orstrategies to conceal or acknowledge. Likewise, initial guides (34) wereused to explore the structure and emerging process of pain adjust-ment. Patterns and trajectories that could describe the life transitionas a consistent whole were tested. In the last stage of the analysis, thepreliminary model was tested for each of the interviewee’s stories andadjusted. Details, similarities and differences in the 18 stories finallyformed a synthesized structure, eg, the life adjustment model in threestages. All subjects gave informed consent to participate in the investi-gation, which was approved by the Ethics Committee of the MedicalFaculty of Lund University, Sweden.

RESULTSA model for life adjustmentThe proposed model for life adjustment is to be considered theframework for a complex process of change. Various aspects oflife adjustment can be followed in a longitudinal perspectivefrom the retrospective accounts in the interviews. To emphasize

turning points and passages along the course of the life adjust-ment, the process has been divided into three active stages ofchange, here denoted as Stages I, II and III (Table 1).

The concept ‘life adjustment’ and the expression ‘learningto live with’ chronic illness encompass changes in the rela-tionships between the person’s past, present and future life.This biographical perspective gives a natural link to lifebeyond illness and disability, eg, the healthy part of life thathas been or will come in the future. In the following, somecharacteristics of the stages of the adjustment process and thework of maintaining adjustment will be described.

STAGE IPreludeInitially, this stage contains no direct signs of a life transition,but can still be regarded as the beginning of the adjustmentprocess in patients with chronic pain. Stage I could cover sev-eral years, with periods of recovery and decline, gainful workand sick leave. What decided the length of it was how long itwas possible to maintain the hope that pain was temporary andwould disappear.

A slow beginning of the process of change was commonamong the interviewees, because the pain often appeared peri-odically, and was thus regarded as a temporary condition, eg, anatural interruption of a healthy life. Initially, such episodesdid not influence the way of life or plans for the future. Beingtemporarily ill also allowed the afflicted person to receive helpand support from others. Gradually, the healthy periodsbecame shorter and fewer, and everyday life was increasinglyinfluenced. It was no longer possible to maintain the idea thatthe pain was temporary. When the combination of increasingpain, disability, and physical and mental exhaustion reached acritical point, sick leave became the last resort for many of theinterviewed women.

Struggling to restore lifeIn this initial process, an obvious phenomenon was a force ofvarying strength, a restoring force, aimed at retaining a previouslife trajectory and holding on to one’s familiar identity and sociallife. When the women became aware that this return to thenormal life was not forthcoming, and when they were no longerable to cope with everyday life as before, their worries about theirhealth increased. Sick leave, and perhaps physiotherapy, at firstbecame a way out and gave rise to the hope of recovery.

The situation also led to an inability to fulfill previously natu-ral and expected roles or tasks in life, such as being a mother or abreadwinner. Coping with the pain, while living an outwardly nor-mal life, required physical as well as mental exertions that led toan immense everyday stress load. In the end, their strength

The life adjustment process


TABLE 1The life adjustment model in women diagnosed with chronic pain (fibromyalgia or myofascial pain syndrome). The modeldescribes the transition from Stage I to maintenance in a biographical perspective

Past Present Future

Stage I When I was feeling well Feeling ill, struggle to restore daily life, chaos Picture of future still intact

Stage II Picture of the past fades Distress, understanding pain, Picture of future fades, threatening future

learning new coping skills, must manage

Stage III New store of experiences New picture of future feels natural

Maintenance Before and after the pain New ‘normal life’ Managing

and living with pain


Competence and control of self and pain, increases

merely sufficed to handle the most necessary everyday tasks.Hiding the stress experienced became a common coping strategyduring this period. As a rule, this only led to short-term solu-tions, because the body was exposed to further tensionsbecause of frustration and stress, which lead to an increasedexperience of pain.

Self-deceptionExamples of coping strategies used by patients to maintain previ-ous habits of life were a quick return to work regardless ofimprovement, avoiding repeated sick leaves, various ways ofhiding the trouble from others and explaining the symptomsaway. Many interviewees told of how they tried, for as long aspossible, to convince themselves and others that they did not feelill. Their coping strategies became necessary to survive socially.In the end they became a self-deception aimed at finding accept-able and natural explanations for the pain troubles, and hidingthem from the surrounding world. One woman told of such a self-deception, which lasted for several years, while the pain grewincreasingly worse. She had difficulties explaining this andregarded herself as a reasonable person. She concluded, “I musthave been wearing blinkers.”

The interviewees gave examples of how desperate they were touse denial as a common solution, which also precluded supportfrom others. In this stage, the women’s close family becameinvolved in the problems. The pain affected the feeling of com-munity and balance in their relations. The women’s worryincreased, and their life situation was influenced by the fact thatthey had to act and relieve the pressure without understanding thesituation and what the future would hold. They apparently haddifficulties in explaining the situation to others and felt isolatedwith their worry and sense of inadequacy.

ConfirmationThe great importance of professional support during theprelude is made clear by the accounts of the interviewees. Thisincluded getting a medical examination, an explanation and adiagnosis, either at some other place or at our clinic. Thiscould provide the information they required to explain to others,which in turn might generate increased understanding fromthe surrounding world.

The medical investigation and the physician’s attitude werevery important in facilitating personal adaptation in the lifeadjustment process. Some women desperately tried to ‘prove’ topeople around them and to doctors and coworkers that their bod-ies were in pain, with the result that others perceived them asbeing too obsessed by their troubles. Many of the women had theexperience of being disbelieved when they sought medical treat-ment, and that their troubles were neglected or regarded as a signof mental or social problems. They protested desperately: “I knowmy body well enough, and I am honest enough and capable ofunderstanding that this isn’t something in my head, this is some-thing that has happened to my body,” one of the womenexclaimed during the interview. The situation was described notonly as insulting but also in its ultimate consequence, as a threatto the person’s own reason. The doubts of the surrounding worldmade the situation even more difficult and became a drain ontheir already weakened strength.

AcknowledgementA crucial step in this early stage of the life adjustment process,which we encountered in all accounts, was acknowledgement

that the pain was not temporary. This signified an emotionaland cognitive understanding. It was thus necessary to give upthe aspiration to return to life as it had been before. Theacknowledgement sometimes grew as an inner certainty, as thecoping strategies aimed at hiding the seriousness of pain nolonger sufficed. The interviewees said that they no longer hadthe strength to explain away why the pains never lessened, nomatter what they did. The ambition to restore life to the way ithad been before was diminished.

Acknowledgement gave adjustment a new dimension,which meant that their eyes were turned toward the future.This gave rise to a new anxiety. What will happen, in the timeto come, with work, and other engagements and roles in life?The significance of life adjustment in a wider perspective start-ed to clarify. This turned the acknowledgement into a power-ful force that, for some, initially led to a crisis in life withfeelings of loss and worry about the future. Later, this forcemanifested itself as a striving for change and adjustment. It wasobvious that the women stopped actively searching for a mira-cle treatment and instead began to trust their own resources.The hope of recovery remained but was no longer an obstacleto alternative possibilities in the life situation. Thus, changeand adaptation had begun.

STAGE IIWorking throughThe admission that the pain was there and would remain wasvery prominent in all the accounts. This was a clear turningpoint in the life adjustment process. We regard this as thebeginning of the second stage, which entails an active emo-tional and cognitive adaptation, and an exploration of the newconditions of life imposed by the pain.

Sorrow and lossThe admission was often succeeded by an emotional crisis forthe interviewees. Although some of them felt relieved to havea medical explanation of their pain, the feeling of loss and sor-row in life could be strong. One interviewee described it as, “Agigantic mourning”. They missed the kind of life they wereused to. Some of them hid their sorrow by withdrawing, whileothers gave voice to it.

Losing oneselfThe women described how previously natural things like shop-ping, sitting in the car, receiving guests at home, performingtasks at work or running the household no longer could beaccomplished automatically. They surprisingly found thatactivities demanded energy, thought and time. Uncertaintyabout what the body was capable of in its present conditiondisrupted self-esteem and self-confidence. This constituted amajor threat to the self-image. The interviewees described thesituation as confusing, and questions like: “What’s happeningto me? What have I become? What am I good for?” or rather:“Can my body do what I want it to do?” scared them.

Leaving the role of being sickAs long as the pain was considered to be temporary, it was ade-quate to receive support from significant others. As time wentby, however, the role of being sick, with its possibilities of rest,withdrawal and being cared for by others became more andmore troublesome. The expectations of a return to active lifehad not been fulfilled. This situation was described as confusing.




The sick role behaviour thus became less and less desirable,and the interviewees defended themselves against theirdependence on others. They tried to re-establish their self-confidence by creating new patterns and routines in everydaylife. This became an important part of their strive for inde-pendence and a normal life. Some described how those thatwere close to them found it difficult to accept that providingpractical support could not always be allowed by the painsufferer. Therefore, during the course of life adjustment, theimportance of support from significant others were re-evaluated.The best support, according to many, was empathic under-standing, such as emotional support with a confirming function.

Defining the problemsThe understanding that the pain could have consequences forthe entire life situation became an important driving force inthe adjustment process during the second stage. It was clearfrom the accounts that the focus eventually and increasinglywas moved from the pain and the body to important parts of lifesuch as family life, social fellowship, working life and leisuretime. How would these areas of life be influenced?Furthermore, it was clear that the medical explanation of painplayed an important role in the problem-solving process of thesecond stage. The medical explanation of pain dispelled themystery surrounding the situation, making it possible to estab-lish control of the pain. Knowledge regarding the bodily condi-tion played a decisive role in understanding the situation inthe context of a new wholeness in life.

Finding solutionsIn time, the attention of the women was directed towardschanging, building up a new experience base and repairingtheir existence. They sought new ways of functioning withtheir bodies from everyday details, like running the home, tomore complicated tasks in working life. Much had to berelearned. Certain roles, such as that of a friend among friends,might not have to be abandoned but could be performed in anew way. It is now that they are fully occupied with the task of‘learning to live with’ the new conditions of their life, thatthey have acquired an insight into what these new roles are.For many of those interviewed, a period of sick leave becamethe starting point for this process.

Picture of the future affects copingThe relation between the past, present and the future, ie, thebiographical course, was fundamental for the adjustmentprocess in our study. The women’s acknowledgement at theend of Stage I led to the abandonment of the previous familiarbiographical base line. At this stage, it was obvious that thepicture of the future blurred and became threatening for some.Later, (Stage II), when a new trust in the body and a self-identitywere forming, a new picture of the future developed. This stagewas a ‘farewell to the past’, which we would consider the firststep toward a ‘biographical reinforcement’ (7). Thus, an attuned,but somewhat positive, perspective on the future will havegreat importance for continuing life adjustment. The transi-tion from the second to the third stage was gradual, and intheir accounts, the interviewees made it clear that they oftenoscillated between them (Table 2). Even if they had restoredmeaning and security to their existence, they could relapseinto despair or feel that their self-image was threatened again.

STAGE IIIEstablishing the new course of lifeThe purpose of the concluding stage could be seen as a gather-ing together of the experiences made thus far during the courseof life adjustment. The restoration of self-image and continuityof life, the establishment of a new attitude toward life, andchanges realized in social and working life, started to emerge asa whole with which one could feel comfortable. The adjustedself-image was increasingly used in various roles, primarily inthe role of being mother and spouse, thus, allowing a founda-tion for new goals to be created, and the picture of the futurereturned. The expectations of the surrounding world werehandled purposefully once the women got to know themselvesin their new situation. With the return of faith in their ability,the scope for action in life also increased.

However, for most it took time to change the beliefs andpatterns of behaviour deeply rooted in their own personality.For instance, slowing down was not easy when they were usedto doing things simultaneously. The old coping strategiesincreasingly changed, becoming part of the everyday adjustmentpotential. The women’s accounts indicate how they could“see” their new lives and how they had found a perspective onwhat they had gone through during life adjustment.

MAINTENANCE – LIVING WITH PAINThe study has also made it clear that after the three stagesof this active period of life transition described here, thework of maintaining the adjustment reached is continuous.Living with pain becomes a natural part of life, and is thusnot considered part of the adjustment process. The inter-views revealed that a successful life change was important inorder to live a good life in spite of the pain. In this section,we shall briefly focus on how the women described ‘themaintenance work’.

Competence of handling future changesThose who had gone through the three stages of life adjust-ment described in detail how life had been normalized in spite



TABLE 2 Position of the interviewees in different stages of theadjustment process

Stage I Stage II Stage III

Sabina Carin

Annika Cecilia

Marita Linda

Astrid

Lena

Irene

Katja

Signe

Vivi

Barbro

Anna

Elsie

May

Unnie

Margaretha

Arrows indicate the direction of transition


of the pain. They described skillful coping, which enabledthem to re-establish their quality of life. This capability can bedescribed as continuous maintenance work, ie, extra everydaylabour to handle pain and disability. The accounts indicatedthat this labour was carried out on the private backstage, awayfrom the outside world. In this way, the women learned andincreasingly became aware of what the body was capable of.This led to increased self-knowledge.

A new attitude to lifeThe women were aware of the everyday changes with whichthey had learned to live and perceived them as a natural part oflife. Their physical strength often had to be deliberately dis-tributed and rationed to suffice for the things in life they wantedto prioritize. A specific kind of uncertainty had become anatural part of life. This was based on the fact that they had totake into account the possibility that the pain could suddenlyand unexpectedly worsen and upset all planning. Adapting tosuch changes in the conditions of life required them to balancewhat the body was capable of against the desires of the mind.As an example of this, many of the women said that they oftenchose to accept a temporary worsening of the pain to be moresocially active. One woman told of how she participated in alarge family gathering, well aware of the fact that it wouldovertax her strength: “I had decided that I would damn wellparticipate. No matter what the cost. I was ill for a fortnightafterwards. But, of course, the feeling of having been therewas fine.”

Regular self-careThe women were aware of the importance of this maintenancework being done regularly. They had to regularly carry out theirprograms of exercise, relaxation and training. One of the womentestified that this could not be done without self-discipline andsacrifice. She regarded this regularity as a straitjacket: “If I skipmy training because I don’t have the time or the strength, mycondition gets worse.” In spite of this, they gave voice to thesecurity of knowing that there are measures they can take tohandle pain. By having a choice of their own they were also ableto control their situation. Many of the women expressed wonderat having learned to live with the pain: “When the pain started,I thought that was impossible.” Moreover, during the transitionprocess and in our experience, there was often a reduction ofdrug use, resolving depression, and an overall enhanced qualityof life (Table 3).

DISCUSSIONThe interviews helped us reconstruct a life adjustment processthat described different stages from a biographical perspectiveof the women’s lives. The investigation of adjustment focusedon the importance of the individual’s biographical wholenessfor understanding the adjustment to chronic pain and its con-sequences. It also demonstrated that the women had power oftheir own to change and create a new satisfying life role.Simultaneously, the power to adjust signified the ability to self-heal, a process that may take time and should be allowed to doso. However, before further discussion of the main findings andcertain clinical implications, some methodological issues willbe considered.

Methodological issuesQualitative investigation does not involve objective compari-son of measurements as in biomedical (quantitative) research.In qualitative research, with narrative accounts applied to alimited sample of interviewees, using inductive interpretationin a phenomenological framework, the findings are subjectedto a reconstructive process (9,35). However, the validity of theresults may be questioned due to the possibility of subjectivebias in the process of interpretation. Nevertheless, the findingsin qualitative investigation based on inductive analysis mayhave general validity (36). Referring to life adjustmentprocesses in chronic pain, the similar findings of several previ-ous and independent qualitative reports (9,13,15-17) add sup-port to the validity of qualitative methodology.

However, a limitation for a more general application maybe that only women were included in this study. Nevertheless,the Walker et al (9) investigation included a majority of maleswith chronic back pain, and the results were similar to those ofour study. Recently, qualitative research on males diagnosedwith fibromyalgia has demonstrated that males express a similarpattern of life change (18,37). However, additional futureresearch will need to confirm whether the life adjustmentmodel also applies to males suffering from chronic pain.

Another limitation was unintentional selection bias. It iswell known that patients presenting with complex and refrac-tory chronic pain, including certain individuals withfibromyalgia, are selected to tertiary care (38), including spe-cialized pain clinics such as our setting. This patient category ismore frequently characterized by dysfunctional coping andemotional chaos (38) and can be assumed to be at the earlystage of the adjustment process (Stage I). Thus, we do notknow whether all individuals diagnosed with fibromyalgia ormyofascial pain syndromes develop features characteristic ofStage I or even pass through an adjustment process. We assumethat there are individuals with chronic musculoskeletal painthat never become patients, perhaps due to constructivecoping from the beginning.

Professional distrust obstructs the adjustment processIn the present study the interviewees stressed the importanceof support provided by significant others throughout theadjustment process. During the early stage, vulnerabilityincreased and professional support was of great importance.Information about the body and pain (being part of thecognitive/pedagogical treatment program) and increasingknowledge provided vital support for coping with chronicillness and its negative consequences.



TABLE 3Some empirical observations of the clinical featuresrelating to the early and late stages of the life adjustmentprocess

Stage II Stage IIIStage I Distress, understanding Growing competence

Feeling ill, pain, new coping skills, and control, struggle, chaos must manage new picture of the future

Unexplained pain Understanding pain

Frustration, fear Coming to terms, accepting

Regular drug use Reduced drug use

Poor coping (dysfunctional) Constructive coping (adaptive)

Depression Resolving depression

Poor quality of life Fair quality of life

Return to work no priority Motivation for return to work


However, patients suffering from complex pain disordersare frequently met with little sympathy in modern health care(17,39). In the qualitative study, many of the intervieweesexpressed their frustration about being misunderstood anddistrusted early in the adjustment process. They felt rejectedby the health care system, but sometimes also by relatives andemployers, which added to their suffering and stigmatization(9,12,40). The early lack of support from the health caresystem and dealing with disbelief created powerlessness andanger (9,40). In the present study, it was evident that profes-sional mistrust often obstructed the life adjustment process fora long time.

Previously, the stigmatization inflicted by health care onpatients diagnosed with chronic pain has been infrequentlyand insufficiently reported in the literature (40). This maylargely be because reports of the patient’s experience of suffer-ing, such as ‘the insider perspective’ (41), have been neglectedin pain research (9). In the Åsbring and Närvänen (40) report,women with fibromyalgia and chronic fatigue syndromedescribed that “questioning of their morality” (of not being ill,lying or being work-shy) was experienced as deeply violating.It constituted a threat to their identity and was sometimes aheavier burden than the illness itself.

Pain behaviour a response to frustration and mistrust?Oversimplified conceptions about pain behaviour in patientswith chronic pain are common among health care professionals,such as “there is little/no pain but exaggerated pain behaviourto obtain secondary gains”, and “inappropriate pain behaviouris part of a maladaptive and irreversible sick-role”. In the pres-ent sociopsychological study, some women in the early phase(Stage I) did report that they sometimes expressed their frustra-tion in eye-catching behaviour. However, they often reportedthat their frustration was a consequence of not being under-stood or acknowledged. The women were also aware that othersmisjudged their pain behaviour, but they found no other strategyto attract attention to their suffering. Once acknowledgementwas obtained (by getting an appropriate medical examinationand an explanation of pain), frustration decreased, and therewas little further need to express suffering in terms of deviantbehaviour. Thus, according to the life adjustment model basedon the present sample of pain sufferers, pain behaviour wasrarely maladaptive or irreversible. On the contrary, it appearedto be a temporary and rational reaction.

CLINICAL IMPLICATIONSUnderstanding chronic pain sufferers from their own perspec-tive has important clinical implications relating to the modi-fication of certain routines in their rehabilitation program.Essentially, this applies to: providing patients with an under-standable diagnosis; focusing on cognitive intervention(rather than on behavioural deconditioning related to painbehaviour and sick-role), and in co-operation with thepatient; and planning the adequate time for vocationalrehabilitation and return to work. The adjustment of therehabilitation program to the subjective perspective shouldlead to a better outcome (42,43).

The diagnosis as an explanationAs demonstrated in this qualitative study, it is important forchronic pain sufferers to be provided with a clinical diagnosisto progress in the adjustment process. However, there is still a

widely held opinion among doctors that presenting theproblematic pain patient with a diagnosis (such as fibromyalgia)will increase symptoms, pain behaviour and secondary gain,and promotes a chronic sick-role (44,45).

We consider this belief to be false. Because of the experi-ence we gained from the life adjustment process we considerthat providing the patient with an understandable diagnosisshould be mandatory for initiating cognitive restructuring.Åsbring and Närvänen (40) reached the same conclusion, andthere is much additional support for this standpoint in the lit-erature: patients not receiving a pain diagnosis continue toregard pain as ‘mysterious’, are more frustrated, more likely tocatastrophize (due to fear of inexplicable pain), conserve a pes-simistic picture of the future, do not use constructive copingstrategies and have a poor outcome (12,39,42,46-48).Significantly, Schaefer (13) pointed out that individuals whowere diagnosed found the explanation of pain to be a relief andfound themselves at “the beginning of a whole new process anda long period of healing.”

In a biopsychosocial framework, it is essential to underlinethat providing a diagnosis does not imply ‘diagnostic labelling’,in a negative sense. In addition, the patient does not primarilywant a diagnostic label, which implies disease. Instead, andbased on the results of the present qualitative study, we con-cluded that there is a need for an explanation of pain and itsmechanisms. Thus, from the subjective perspective, the under-standing of pain is essential, not the ‘diagnostic label’.Previously, this important distinction appears to have receivedlittle attention.

Today, dysfunctional pain processing in the central nervoussystem (central sensitization and/or dysfunction of descendingpain inhibition) is considered to be an essential mechanism incommon chronic pain illnesses such as fibromyalgia andmyofascial pain syndromes (2,49-51). Dysfunctional centralpain processing can be explained within a suitable pedagogicalmodel. Therefore, where we primarily use a neurobiologicalframework to explain chronic pain, it is our experience thatmost patients will accept information about the importance ofemotional factors that may affect central pain processing aswell (3). In the past, contributing psychological and social fac-tors may have been rejected when presented as the main causesof pain.

A new perspective confronts operant theoryOne finding from the study was that emotional support playedan essential role during the adjustment process. However, therewas no general tendency for the women to seek support from sig-nificant others for reasons due to secondary gain. When pain didnot decrease, dependence on others became a burden (Stage II).Instead of developing a sick-role, it became necessary to resumethe responsibilities at home that were essential for their selfcon-fidence and female identity. Thus, there was little support for theconcept of overprotective spouses enhancing secondary gain andpain behaviour originally relating to early operant conditioningtheory (52,53). In contrast, many patients chose to conceal theirsuffering. Being dependent on others was experienced as apredicament and resulted in feelings of guilt and a threat to theirselfesteem.

A similar observation was made by Hellström et al (15),who reported that support from significant others was a nega-tive experience. This was most evident in situations whenthere was a desire to conceal disability or to manage by oneself.




Additionally, Morley et al (54) reported that chronic painpatients exercise caution about how and when they disclosetheir pain. According to their investigation, over 50% of thepatients talked about pain only when asked, and a vast majority90%) tried to hide their pain from others. Fear of being judgednegatively and perceived as a burden influenced the decisionnot to talk about pain. Åsbring and Närvänen (40) came to asimilar conclusion. Not disclosing pain was a strategy for main-taining a positive relationship, and “suffering in silence wassocially necessary”. In contrast, the patients felt it safe to com-municate their distress (including pain behaviour) to doctorsbecause of their professional roles. Therefore, assessment in theclinic may falsely diagnose ‘exaggerated pain behaviour’ whichotherwise does not have a significant role.

The findings of a qualitative study by Newton-John andde C Williams (55) relating to pain communication have alsoquestioned a simplified use of the operant conditioning model.It was found that spouses exhibited a wide variety of responses,such as “not responding-observe only”, “offering help butallowing the patient to reject the offer”, and “ignoring anddistracting”. Others (42) have demonstrated that when signif-icant others did provide support, it facilitated constructivecoping as opposed to reinforcing pain behaviour and secondary

gain. In a quite recent critical review of the operant behav-ioural literature, Newton-John (56) focused on severalmethodological weaknesses, and claimed that the interactionsof chronic pain couples are more complex than a purely behav-ioural model can accommodate, and suggested that qualitativemethods should be used to study the interactions of chronicpain couples over time.

Thus, as supported by the findings in modern qualitativeresearch, common concepts relating sick-role, pain behaviourand secondary gain based on an operant conditioning modelmay have limited validity for subgroups of patients sufferingfrom chronic pain (Table 4).

Vocational rehabilitation at appropriate timePreviously, we discussed the importance of having an image ofthe future in order to proceed in the adjustment process and thesignificance of initiating vocational rehabilitation at the appro-priate time (55). Many of the women in the present study expe-rienced that they had not taken part in decisions concerningtheir own vocational rehabilitation and return to work. Oneexplanation is that the planning of rehabilitation had generallybeen done prematurely when the women still lacked a con-structive picture of the future (Stage I). For example, differentrehabilitation measures, such as occupational training, hadoften been undertaken too early in the adjustment process.Vocational rehabilitation that is too early and unplanned mayhave disastrous consequences, one being the disengagement ofthe rehabilitation program (57-60).

Accordingly, in professional pain rehabilitation it should becrucial to evaluate what extent the image of the future has beenadapted to to life with pain and its consequences. The planningof vocational rehabilitation should be harmonized with theactual stage of life adjustment that the patient is going through.A pain rehabilitation program that only answers questions suchas why, what and how is not sufficient. Instead, the fundamentalquestion should be when, eg, at what time should certain meas-ures be taken? Only the individual concerned owns the answer.

Finally, a common truism in this context is that extendedsick leave should always be avoided since it may result in a per-manent sick-role. In our experience, and based on the lifeadjustment model, we believe this assumption to be too sim-plistic. In fact, legitimate sick allowance might be necessary toprovide the time required for certain individuals in the earlychaos to proceed in the adjustment process, for cognitiverestructuring, and to regain motivation for a return to work.

CONCLUSIONSThe life adjustment model has increased our understanding ofwomen suffering from chronic pain. Its clinical implications haveplaced focus on the importance of the patient’s own perspec-tive, the stigmatization inflicted by the health care system, thesignificance of providing the patient with an understandablepain diagnosis, and the need to adjust treatment and rehabili-tation routines. It has also made us aware of the limitations ofthe traditional operant conditioning model and the need to planvocational rehabilitation in harmony with the ongoing lifeadjustment process. We believe that the integration of routinesbased on psychosocial qualitative research into clinical prac-tice should facilitate rehabilitation and return to work. We lookforward to the reporting of other qualitative investigations, ofwhich there is an urgent need.



TABLE 4Qualitative psychosocial research findings confrontcommon operant conditioning concepts relating to painbehaviour, secondary gain and sick-role

Common behavioural concepts – professional myths?

They just keep on talking about their pain

They are sometimes in pain but not all the time

They become dependent on others

They take advantage of the situation

Their spouses and family get too much involved

Presenting the patient with a pain diagnosis will only promote a sick-role

Allowing sick leave will make her passive and more ill

Vocational rehabilitation should be started without delay

The subjective perspective as described by qualitative research

Living with pain is hard work. It is accomplished without insight from others

Pain behaviour can be a rational consequence of suffering and distrust

Persons suffering from chronic pain are aware that others misjudge their

behaviour

Secondary losses* are of greater importance than secondary gains

Dependence on others is no option; independence is that which is desirable

The sick role is temporary. It will spontaneously be abandoned in due time

Mistrust shown by health care professionals hinders the life adjustment

process, prolongs sick leave and delays return to work

The explanation of pain diagnosis (and pain mechanisms) will initiate

constructive coping

Empathetic understanding is the best support

Within the patient there is a power to change and to create a new,

satisfying quality of life

Vocational rehabilitation should be carefully planned and permitted to take

the time required

Sick allowance may sometimes hasten the life adjustment process and

return to work

*Secondary losses refer to issues such as loss of physical and mental health,function, social relations, confidence in health care, loss of job and finances,life control and quality of life




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