Irritable Bowel Syndrome is a disorder which exists in every country where it has been lookedfor. The prevalence of IBS, and the types of symptoms, vary according to the country studied. InWestern societies, the prevalence rate of people suffering from symptoms consistent with a diag-nosis of IBS is roughly 15–20 %, with twice as many women as men reporting symptoms [1].The core symptoms of IBS are abdominal pain, a change in bowel habits, urgency to have abowel movement, flatulence and bloating. The symptoms of IBS vary both between patients,and within patients. The causes of IBS are almost certainly multifactorial and there is no consen-sus as to the aetiology of IBS, and the uncertainty surrounding the causes and triggers of IBSmean that pharmacological treatments are at best only partially successful.

The day-to-day variation of symptoms, with periods of remission and exacerbation, make theillness very difficult to deal with. Studies of people with chronic illness are consistent in showing

DOI: 10.1556/CEMED. 3.2009.3.10 2009 n Volume 3, Number 3 n 487–498.

Irritable Bowel Syndrome in Hungary: How Do Patients View their Illness?

CHRISTINE P. DANCEY, PAUL STENNER, ELIZABETH AATTREE, JOY COOGAN, ÁGOTA KOVÁCS, GYÖRGY BÀRDOS

SSzzeerrzzôôkk mmuunnkkaahheellyyeeii??!!

Irritable Bowel Syndrome is a disorder which exists in every country where it has been inves-tigated. The ways in which people understand the nature and causes of their illness may haveimplications for the way in which the patients relate to their doctors and the ways in whichthey manage their illness. The views of the causes and treatment of IBS may also depend onthe country in which it is studied, and in Hungary there is no published research on the wayin which patients understand the nature of their IBS. The present study used Q-methodolo-gy to investigate the ways in which Hungarian IBS patients view their illness. A taxonomy of5 distinct accounts were identified – these were labelled (a) IBS – a psychological problemcaused by worry and stress (b) a problem of body, not mind (c) IBS has many causes – butrelieving the symptoms is more important than knowing the cause (d) IBS is depressing andlinked to family dynamics and (e) IBS does not cause depression. The accounts are discussedin relation to similarities and differences between Hungarian and UK patients, and to impor-tant themes which emerged from the data.

Keywords: IBS, Q-sort, depression, irritable bowel

Corresponding address: Professor Christine P. Dancey, Ph.D., University of East London, UK.E-mail:

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that the illness intrudes into various aspects of the person’s life [2]. For people who suffer fromlong-term IBS, symptoms may be severe enough to adversely affect employment, leisure, andrelationships. Therefore, although not life-threatening, this disorder has the capacity to degradequality of life, with consequent social and economic costs [3, 4]. IBS has been a problematical ill-ness equally for patients and their doctors. Early work [5, 6, 7] found that many patients foundhealth professionals less than supportive, and that a high number of nurses held negative viewsabout people with IBS.

In a qualitative study of 14 patients with IBS and 12 doctors, Dixon-Woods and Critchley [8]found a disparity between the views of doctors and patients with IBS. Doctors distinguishedbetween “good” and “bad” IBS patients. “Bad” IBS patients were seen as being more demand-ing, and less accepting of the psychological factors which their doctors believed were important.On the other hand, patients tended to feel stigmatised and let down by doctors. These researchersconcluded that with ambivalent conditions such as IBS doctors may evolve their own person basedviews about IBS. Recognising these, and being aware that people with IBS are sensitive to thelabel of “neurosis” is essential for a successful doctor-patient relationship. A recent study [9}found that General Practitioners (GPs) had a limited understanding of the ways in which IBSintruded into everyday lives, and tended to take the view that IBS was a result of the ways in whichpatients reacted to stress. In a study using Q-sort methodology, Stenner, Dancey and Watts [10]found that people with IBS had a limited number of views on the nature and causes of their IBS.In analysing the accounts given by patients, they found that the main accounts could be summedup as (a) “IBS is caused by worry and stress”, (b) “IBS is a problem of body, not mind” (c)“depressed, stressed, and despairing of doctors” (d) “partly psychological with physical conse-quences” (e) “IBS is caused by past childhood trauma and present day stress and diet” and (f)“disillusioned and suffering, but strangely attached to IBS”. These researchers [10] found thatthose patients who agreed with their GPs’ view of the cause of their IBS were more positive abouttheir GPs than those who disagreed with their GPs. They concluded that the ways in whichpatients conceptualised their IBS may be a decisive factor in influencing the communicationbetween doctor and the IBS patient, and in affecting the quality of that relationship. This isimportant, as the quality of this relationship affects frequency of consultations [8].

Since illness in general and IBS in particular may be seen in different ways by people, depend-ing on their cultural beliefs and experiences, it is important to elicit the views and understandingof patients in the country in which they are being treated – or managed. Recent research con-firms that approaches to IBS, views of the causes of IBS and the treatment given depends on thecountry in which it is studied [11]. According to Seifert et al. [11] “the wide variation betweenG.P.s both between and within countries partly reflects variations in health care systems but also dif-fering knowledge and awareness”. Whilst there is research on prevalence data for IBS in westernEurope [12, 13], Eastern Europe [11] and cross cultural studies which make comparisons insymptomatology and mind-body attributions [14], research focusing on patients in CentralEurope is lacking. For instance, in Hungary, there appears to be no reliable data on prevalence,although functional gastrointestinal (GI) disorders in the Hungarian population have been esti-mated at 12% [15]. It is likely that IBS makes up the larger part of this group. There also appearto be no reliable estimates of the economic costs relating to IBS in Hungary. However, theprocess of diagnosis, and hospital investigations, are similar to those in the UK, in that patientsare first seen by General Practitioners (GPs) who will carry out some preliminary investigationsbefore making a diagnosis of IBS and/or referring them to a GI clinic, where they may undergohospital investigations to rule out the possibility of more serious diseases (e.g. Inflammatory

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Bowel Disease, bowel cancer). Consultants have regular in-service and Continuous ProfessionalDevelopment on GI matters, and are therefore more likely to take a multifactorial approach toIBS than General Practitioners. GPs tend to believe that the causes of IBS are psychosociological[16], and advice tends to focus on changes to lifestyle, and the importance of stressors and relax-ation. It is therefore likely that Hungarian IBS patients would have assimilated this into theirviews of the nature and causes of their IBS, tending to interpret their IBS as psychosomatic inorigin. Furthermore, information and support from an independent organisation (such as theGut Trust – formerly The IBS Network – in the UK) is not yet available in Hungary. Hungaryhas a long tradition of psychosomatic medicine [17, 18] and studies have therefore focused onthe psychosocial concomitants of illness. For instance, Kovács and Kovács [16] stated that psy-chological factors play an important role in disorders such as IBS. They found that such patientswere characterised by significantly more severe depressive and anxiety symptoms compared toother groups. Seres and Bárdos [19] suggested that coping style and early attachment may alsoplay a crucial role in developing IBS.

A psychophysiological focus has always been strong in Hungarian medical schools [20].Ádám [21] raised the possibility that misperception of visceral signals may be instrumental inshaping IBS symptoms and Bárdos and colleagues supported this view by data on animal modelsof IBS [22, 23, 24].

However, there are no studies of the ways in which people with IBS make sense of their ill-ness, as there are in the UK [5, 6, 10]. In this latter study, the researchers stated that furtherresearch should be conducted to ascertain whether accounts may differ amongst people belong-ing to different ethnic, cultural or national groups.

The present study was designed in order to investigate the ways in which Hungarian patientswith IBS understand the nature of their illness. Thus, the study conducted by Stenner, Danceyand Watts [10] was repeated for Hungarian patients with IBS.

Method

Participants

Participants were 3 men and 17 women (mean age =48.1, SD=14.19) who were attending ahospital in Budapest, Hungary. Patients had been diagnosed by a consultant using the Rome IIIcriteria and were considered by the consultant as being similar to the population of IBS patientsin Hungary.

Q-sort methodology was used to identify and describe the different understandings that theseHungarian patients with IBS have of their illness. It is to be noted that large numbers of partici-pants are not required for a Q methodological study (it is not unusual for Q studies to involvebetween 12 and 20 participants) [25].

Q-Sort

The 58-item Q-sort used by Stenner, Dancey and Watts [10] was translated into Hungarian by anative Hungarian speaker fluent in English, and back-translated by a native English-speaker flu-ent in Hungarian. The back-translation showed that there were three items where the Hungarian

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wording did not quite reflect the meaning in English. Therefore the translators discussed theseitems and came to an agreement as to the correct wording in Hungarian.

Procedure

Thirty-four people diagnosed with IBS by a qualified medical practitioner in one Hospital inBudapest were asked by one of the authors whether they wished to take part in a study wherethey would answer a few simple questionnaires and give their views on their illness. (All partici-pants agreed to attend the testing sessions, but 14 did not turn up. Reasons given for non-atten-dance included being abroad, being busy, and not thinking the study was very important.) Theywere given an information sheet which gave full details of the study, including a consent form.Once the signed consent form had been received, participants were given a date on which toattend the testing session, held at a University in Hungary. The people who attended the testingsession were greeted by the researcher and the translator and were shown to a seat around a largetable. The places at the table were spread out, so that each participant was not close to anotherparticipant. At each place on the table was a large Q-sort grid, 58 statement cards and a responsebooklet for recording any comments. The researcher gave each participant written instructionson how to complete the Q-sort (see appendix A). The researcher remained present throughoutthe process in order to ensure that participants were clear about the instructions and to answerany questions. Following the procedure of Stenner, Dancey and Watts [10], participants wereasked to sort the 58 statements into a distribution ranging from –5 (‘most disagree’) through 0(neutral/irrelevant) to +5 (most agree). They were asked to place the following number of itemsunder each of the 11 categories:

Once the participants had completed the Q-sort, they were asked to comment on their rea-sons for placing the statements that they placed on the furthermost most ends of the Q grid (i.e.placed at +5 and –5 on the Q grid). They were then thanked for coming and asked to completean envelope if they wished to be contacted again regarding the outcome of the study.

Results

Statistical Overview

The initial intercorrelation matrix expresses the relationship of each Q-sort with each other Q-sort (i.e. 20×20 matrix). Following standard Q methodological practice, the matrix was subject-ed to centroid factor analysis followed by varimax rotation. Factors with eigenvalues of >1 andwith at least one significantly loading Q-sort were selected for further interpretation. Q sortswhich load significantly on one factor only are called factor “exemplars” or “defining sorts”. Forexample, the Q- sorts of 6 participants loaded at over 0.5 (a very stringent significance level) on

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Table 1 Distribution of 58 statements

Disagree Agree

–5 –4 –3 –2 –1 0 +1 +2 +3 +4 +5

2 3 5 6 8 10 8 6 5 3 2

the first factor (A). We therefore assume that participants loading onto factor A have a sharedunderstanding of the nature and causes of their IBS. Q methodological practice involves gener-ating an “ideal” Q-sort (a “factor array”) by merging the Q-sorts of all the “exemplars” of agiven factor. Interpretation is based on the factor arrays of the “ideals” in combination with com-ments made by the factor exemplar participants. It is to be noted that there is a subjective ele-ment involved in interpreting factors.

20 Q-sorts were analysed using the statistical package Pqmethod2.11. This package subjectsthe data to a by person (rather than by item) factor analysis. Varimax rotation of five significantfactors (all with an eigenvalue over 1) yielded 5 interpretable factors which together accountedfor 61% of the variance. Of the 20 participants, all but four loaded significantly on one of thesefactors alone (these are referred to as ‘factor exemplars’). The Q-sorts of six participants loadedon the first factor; two on the second; five on the third; two on the fourth and the final factorhad a single exemplar (Q is concerned with exploration rather than testing, which means thatfactors with a single exemplar can be interpreted if theoretically meaningful). Factor scores wereused to reconstruct ideal Q-sorts (factor arrays) representing each factor. The section below pro-vides interpretations of each of these factor arrays, drawing upon comments from factor exem-plars where relevant. The relative position of all items was taken into account for each interpreta-tion, and in the summaries provided below, the numbers in brackets indicate the number of arelevant item and its ranking in the factor array under consideration. Hence (1: +5) indicates aranking of +5 (most strongly agree) given to item 1.

Factor Interpretations

Factor A: IBS – a psychological problem caused by worry and stress

Six participants defined this factor, two men and four women with ages ranging from 30 to 59years (mean age of 41.83 years).

The two items most emphatically agreed with by Factor A exemplars are a statement thattheir IBS is more of a psychological problem than a physical one (1: +5), and a statement thatpressure and stress worsen their Irritable Bowel symptoms (29: +5). Consistent with this ‘psy-chological’ focus is an affirmation that their personality type inclines them to IBS (36: +4), andthis idea is supported by the following comment from one of the factor exemplars:

Due to my personality I am an anxious, worrying nervy type. Maybe there’s also a problem withmy self-esteem, I’m always worrying that I’m failing. This in itself creates a stressful situation for me.The underlying causes of my complaints are definitely psychological in origin (participant 13)

The emphasis on the causal role of anxiety, worry and stress further emerges through a num-ber of item rankings. For example, it is affirmed that IBS is a result of trying to cope with the tri-als and strains of modern life (17: +3), and that anxiety is a trigger of IBS (42: +3). They feel thatmost doctors also believe IBS is connected with stress (24: +3).

Turning to the negative rankings, the strongest disagreement is expressed towards statementssuggesting that IBS is connected with past sexual experience (38: –5) and that the symptomshave become such a part of their personality that they would be lost without them (55: –5).Apart from rejection of these ‘depth psychological’ propositions, there is also strong disagree-ment with propositions that suggest determinate physical causes such as food allergy (18: –4)

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and physical exercise (22: –4). Two comments from factor exemplars show the extent of theirdisagreement with item 22:

There’s no connection with physical exercise, so it cannot make it worse. Exercise is a healthy thing(participant 13)

Physical exercise does not make my condition worse, in fact it distinctly improves it. Realising this,I started doing yoga, finding the ideal form of exercise. For me yoga means not just exercise but anoutlook on life as well. It exercises you enjoyably but thoroughly, it relaxes you, rests you, fills you withnew energy. I recommend it to everybody (participant 9)

Factor B: ‘A problem of body, not mind’

Two women (aged 27 and 47 years) defined this factor.The most effective way to begin a description of Factor B is to directly contrast it with Factor

A. Where Factor A exemplars strongly affirm (1: +5) that their IBS has a psychological rather thana physical basis, Factor B exemplars firmly reject this same proposition (1: –3). Furthermore,where Factor A exemplars disagree (3: –2) that their IBS has a physical, medical cause that doc-tors have yet to discover, Factor B exemplars give this statement the second highest possibleranking (3: +4). Clearly with Factor B we are dealing with an account centered on the theme ofthe as-yet-undiscovered physical basis of IBS. Thus Factor B exemplars agree that IBS is some-thing of an umbrella term for various yet-to-be-identified illnesses (6: +3), where Factor A dis-agrees with this same item (6: –2).

This contrast can also be discerned in relation to opinions about doctors. Factor A exemplarsagree that doctors are familiar with the symptoms and causes of IBS (45: +2), but Factor Bexemplars disagree quite strongly with this proposition (45: –4). As one exemplar put it: “It isonly really the specialists who know the symptoms of IBS, not the local doctor. He only referred me forexamination at my own request” (Participant 19). This is consistent with the view expressed byFactor B exemplars that their diagnosis followed less from medical knowledge than from medicalignorance (28: +2). Again, this is a proposition with which Factor A exemplars disagree (28: –3).Finally, although the degrees of agreement / disagreement are of low intensity, unlike Factor A(19: +1), Factor B exemplars find doctors to be unsympathetic about IBS (19: –1).

The fact that Factor B exemplars believe IBS to have a physical basis does not mean that ‘psy-chological’ issues of stress and depression are irrelevant to this account. On the contrary, the twoitems most emphatically agreed with are statements about the depressing and stressful nature ofIBS (25: +5, 47: +5). It is important to note, however, that in both cases the negative psycholog-ical experiences are clearly thought to be the effect of IBS and not its cause. Both of these items,for instance, emphasise that the IBS symptoms came before and brought about the stress ordepression (and, significantly, both items, were ranked only in +2 in Factor A, and this despitethe ‘psychological’ nature of this account). Where items suggest the opposite relation of causali-ty, they are rejected. Item 42, for example, suggests that anxiety triggers IBS, and this is ranked in–1 in Factor B (compared to +3 in Factor A).

Factor B exemplars thus believe that their IBS actually causes, rather than results from, stress(20: +4), and that it prevents them from living the kind of life they would like to (20: +4). It fol-lows that they strongly disagree that anti-depressant medications (54: –5) or religious beliefs (50:–5) can help alleviate IBS, and they firmly reject non-medical explanations for IBS, including pastsexual experiences (38: –4) and lack of rest (10: –3). Interestingly, despite this, they affirm that

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childhood traumas can cause IBS (32: +3), an item rejected at –1 by the otherwise more ‘psy-chological’ Factor A. Finally, Factor B exemplars also agree that not eating enough fibre is acause of IBS (11: +3).

Factor C: IBS has many causes – but relieving the symptoms is more important than knowing the cause

5 women defined this factor. Their ages ranged from 31–64 with a mean age of 54.4 years.As with Factor B (and to a lesser degree, Factor A), Factor C exemplars strongly agree that

IBS is depressing (47: +5): “this illness is very depressing for me. At times I am incapable of payingattention to anything except my pains” (Participant 8). Unlike these other factors, however, thereis strong disagreement with the statement that depression is more likely amongst those with IBSsymptoms (5: –4). A further distinctive feature of Factor C is that its exemplars believe IBS tohave multiple causes that cut across the distinction between ‘mind’ and ‘body’ including diet(52: +4, 39: +3), lifestyle (12: +4), lack of exercise (15: +4), tiredness (10: +3), and, though withslightly less emphasis, stress and anxiety (51: +2, 42: +2). Thus, unlike Factor B, they are notattached to the idea that there is an as yet undiscovered physical cause to IBS (3: –1), and unlikeFactor A they are not attached to the proposition that IBS is first and foremost a psychologicalmatter (1: 0). Factor C exemplars are less interested in speculating about the causes of IBS thanin the practical question of how the symptoms can best be relieved (7: +5).

Unlike Factor B, Factor C exemplars believe that the doctors do know what is wrong withthem (45: +3), and they express confidence in their doctors’ knowledge and treatment of IBS:

My doctor knows exactly what is wrong with me…I have received good treatment…I have confi-dence in the doctors, and in their knowledge (Participant 8).

Factor D: IBS as depressing and linked to family dynamics

A 75-year-old man and a 54-year-old woman patient defined this factor.Of all the factors, Factor D exemplars most strongly agree that having IBS prevents them

from living the kind of life they would like to (20: +5). Also distinctive is the extent of disagree-ment with propositions that explain IBS in terms of personality type (36: –5) and anxiety (42:–5). Nevertheless, they agree quite strongly that their IBS is more a psychological problem thana physical one (1: +4), and they implicate their symptoms in the likely development of depression(5: +4). Of all the factors, they showed the most agreement with items implicating family dynam-ics into IBS. Thus they agree that strong support from close family members might prevent IBS(56: +3), and that, with different family relationships, the IBS may not have developed (57: +2).They strongly disagree that an unhealthy lifestyle causes their own IBS (21: –4), and this ispicked up in participant comments, such as:

Anxiety rarely causes IBS. I try to live healthily. I get lots of exercises, I swim and walk (Par tic i -pant 2).

Finally, as with Factor C, Factor D exemplars most strongly agree that the causes of IBS areless interesting than how the symptoms can be relieved (7: +5).

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Factor E – IBS does not cause my depression

One 71-year-old woman defines this factor.As only one participant loaded on Factor 5 this will be discussed only briefly. In extreme con-

trast to all other factors, the exemplar of Factor E strongly agrees that her IBS was brought aboutthrough particular medical treatments (41: +4). Also in extreme contrast to all other factors,there is strong disagreement with the proposition that IBS is depressing (47: –4), and indeed theparticipant adds the following clarification:

“I do not think that the symptoms of IBS, unpleasant as they are, lead directly to depression”(Participant 18).

Despite this, she also agrees that her IBS is more a psychological problem than a physical one(1: +5), and is a reaction of sensitive people to an unnatural way of living (33: +4).

Discussion

This study successfully reduced 20 Q-sorts from Hungarian IBS patients to a taxonomy of fivedistinct accounts or understandings of IBS. In the discussion attention will be directed to thefirst four of these because the fifth was defined by one exemplar only. The first step will be a con-sideration of the relationship of the current findings to those of Stenner et al [10].

The first account (‘IBS – a psychological problem caused by worry and stress’)is substantially similar to the first factor found by Stenner et al. [10] in their study of a UK sam-

ple. Indeed, in this case the two factor arrays correlate at 0.523 (which is significant at the 0.01level, two-tailed). In their UK study, exemplars of Factor A also expressed the definite view thatstress and worry was a major cause of their illness, and that their doctors agreed with them. Theyfound that the doctor-patient relationship for these exemplars was broadly positive, as there wasconcordance between the views of the patient and the doctor. In the Hungarian sample, there wasstronger agreement with the proposition that their IBS is ultimately psychological rather thanphysical, but a very similar rejection of physical and ‘depth psychological’ explanations.

Factor B ‘a problem of body, not mind’ is likewise substantially similar to the second factorfrom Stenner et al’s UK-based study [10] (although as Stenner et al’s original data is no longeravailable it was only possible to compute a statistical correlation in the case of Factor A which wasreproduced in full in their published report). In both cases exemplars reject any explanation ofIBS based on psychosocial causes, and believe that undiscovered physical or physiological factorsare to blame. Both thus reject explanations in terms of lifestyle and stress and strongly agree thatany stress and anxiety arises as a result of IBS, rather than the reverse. Furthermore, in both stud-ies the views of these Factor B patients do not accord with their perception of their doctors’views. A small but potentially important difference between the Hungarian Factor B and thatidentified amongst UK participants is that in the latter but not the former factor, diet and foodallergies were thought to be possible causal factors in IBS.

Factor C (‘IBS has many causes – but relieving the symptoms is more important than knowingthe cause’) shares clear features in common with Factor D from the UK study (‘A partly psycho-logical problem with definite physical consequences’), although the former places more empha-sis upon the contrast between causal explanation and symptom relief. In both factors the depress-ing nature of IBS is emphasised, and both factors are characterised by a rather ‘non-dualistic’view of IBS as both the cause and the effect of multiple factors that cut across the distinction

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between mind and body. Furthermore, both factors evidence a generally confident and trustingattitude towards doctors, whom they defend from critical statements.

Factor D (‘IBS as depressing and linked to family dynamics’) does not map so neatly onto thefindings of Stenner et al. [10]. In particular, the Factor D emphasis on the causal relevance offamily dynamics did not feature in any of the UK factors. Apart from this important emphasis,however, there are similarities with UK Factor C ‘Depressed, stressed and despairing of doctors’.Both factors emphasised the depression-inducing and socially intrusive nature of their IBS symp-toms, and strongly expressed that it prevented them from living the kind of life they would liketo. The Hungarian Factor D exemplars, however, are relatively neutral about their doctors, anddo not believe they worsen the situation (as did the exemplars from UK Factor C).

Following Stenner et al. [10], there are thus overarching and interrelated themes that clarifythe contrasts and similarities between the accounts identified in the present study. One clearlyconcerns the understanding of the relationship between bio-medical and psychosocial factors inmaking sense of IBS and a second concerns the feelings expressed about doctors and medicalpractice more generally (Dancey and Rutter [26] indicate that the doctor-patient relationship isknown to be problematic in the case of IBS). These will be further discussed together, since theyare mutually implicated.

Some of the psychological problems associated with IBS were clearly visible from theseaccounts from IBS sufferers. Whether the participants considered the worry, stress or depressionto be a cause or effect of IBS was linked to their views as to whether IBS was psychosocial in ori-gin, or physical, and these views in turn can be seen to interact with perspectives imputed tomedical practitioners. The worries about relatives and children, problems in relationships and astressful environment were seen by Factor A exemplars to cause, and trigger, episodes ofincreased symptom severity. On the other hand, Factor B exemplars, who reject psychologicalexplanations for IBS, opine that their IBS causes the psychological problems they experience.

Some of these points can be best illustrated by showing how the different factors respond tocertain key statements in the item set. Below, for example, the rankings given to item 1 in thecontext of each factor array are indicated to the right of each statement:1. I think my IBS is more a psychological Factor A Factor B Factor C Factor Dproblem than a physical one. +5 –3 0 +4

Consider in this light also the following item rankings:3. I think my IBS has a physical, medical Factor A Factor B Factor C Factor Dcause that doctors have not yet discovered. –2 +4 –1 +1

Further, although all of the factors agree that pressure or stress can worsen IBS symptoms, thisagreement is particularly strong for factor A:29. When I feel I am under a lot of pressure, Factor A Factor B Factor C Factor Dor I am subject to stress, my symptoms +5 +1 +1 +2get worse.

The issue of attributing causality to IBS is of course related to the broader question of whatand who is responsible for causing and also treating or managing IBS. Compared to the other fac-tors, Factor B exemplars are keen to avoid having responsibility for their IBS attributed to them(their lifestyle choices or character type, for instance). Factors A and C are more accepting of suchattributions, and indeed Factor C exemplars assert that their condition is caused by psychosocialfactors such as diet and lack of exercise. It seems that although most experts in IBS now believe

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the causes to be multifactorial, for patients themselves, there is always a tension between beliefs inrespect of causation – if they are uncertain as to the cause(s) of their IBS (which most of them are)and the extent to which they are responsible for their illness, then there will always be underlyingunresolved tensions which, unsurprisingly, can manifest as anxiety, worry, depression and perhapsas an aggravation of symptoms. It is in this context, of course, that perceptions of the views of doc-tors become directly relevant, since a disagreement with one’s doctor in this context may not bean academic matter, but a disagreement over the allocation of responsibility for illness and recov-ery, and possibly over appropriate forms of conduct and lifestyle.

Responses to the following statements, for example, clearly distinguish factor B from the others:45. In my experience the majority of doctors Factor A Factor B Factor C Factor Dare aware of the symptoms and causes of IBS. +2 –4 +3 028. I was diagnosed with IBS because my Factor A Factor B Factor C Factor Ddoctor doesn’t really know what’s wrong. –3 +2 –3 0

Although we can only speculate, it is possible that such a situation of discordance betweenpatient and doctors’ (perceived) views contributes to the problems at play (as was explicit inStenner et al’s third factor) [10]. It can be seen that if any one theme runs through the accountsof the Hungarian patients, it is the depression associated with IBS. Whether they see the depres-sion as resulting from their symptoms, aggravating their symptoms or being implicated in thecause, the depressing nature of their illness is highlighted in all accounts, and in this sense, theperception that depression is a part of their illness – and a part of them – is recognised. Apartfrom this heightened theme of depression, and the emphasis on family dynamics that characteris-es Factor D, the results from the Hungarian sample are remarkably similar to those from the UKsample.

Conclusion

It is generally accepted that there is no cure (as yet anyway) for IBS, and that patients need tomanage their condition. To what extent is the patient responsible for their condition? Factor Bexemplars do not know the causes of their IBS, but they are sure the causes are located in themedical domain – something which they have no control over. They feel that they cannot rely ondoctors – who believe stress is a cause of their IBS. Thus managing their condition is very diffi-cult indeed. Exemplars of the other factors do not have the same degree of uncertainty surround-ing their condition. Rather than searching for causes and cures, the focus is thus on managingthe condition, and being able to rely on the doctors expert knowledge, and being able to fightback. Here, patients take some responsibility for their illness.

This is not to say, of course, that patients should or should not take responsibility for their ill-ness – despite years of research, the causes of IBS are still unclear. Stenner et al stated that studiessuch as these do not aim to be definitive, but to “explore the contours of the dominant narrativesthat circulate amongst this population”. As they put it: “new accounts are always possible, andindeed such studies as this would be fruitless were it not for the possibility of change in the sto-ries we – both as professionals and patients – tell about ourselves and others” [10]

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References

[1] Heaton, K. W., O’Donnell, L., Braddon, F. et al.: IBS in a British urban community: consultersand non-consulters. Gastro enterol., 1992, 102, 1962–1967.

[2] Faresjo, A., Grodzinsky, E., Johansson, S. et al.: A population-based case-control study of work andpsychosocial problems in patients with irritable bowel syndrome – Women are more seriouslyaffected than men. Am. J. Gastro enterol., 2007, 102, 2, 371–379.

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AAppppeennddiixx AA:: IInnssttrruuccttiioonnss ffoorr ccoommpplleettiinngg tthhee QQ--ssoorrtt

Please take the 58 statements and then sort them into three piles below according towhether you agree, disagree or neither agree nor disagree with the statements on thecards.

Agree Neither Agree DisagreeNor Disagree

Take the cards that you Agree with and spread them out on the table.

Select the one statement that you most agree without of those spread out on the table.Place it in the +5 column on the Q Grid

-- 55 -- 44 -- 33 -- 22 -- 11 00 ++ 11 ++ 22 ++ 33 ++ 44 ++ 55

You then select the next most agreed with statement and place that in the other box inthe +5 column. You continue to find the statement that you most agree without ofthose left and you fill up the columns from +4 moving down towards -5 ensuring thatall boxes are filled in each column before moving on to the next column.

You then take the cards that you Disagree with and spread them out on the table.

Select the one statement that you most disagree without of those spread out on thetable. Place it in the -5 column on the Q Grid. You then continue (as before) but thistime moving from the -5 column towards the +5 column ensuring that all boxes arefilled before moving on to the next column.

You are then left with all the 'neither agree nor disagree' with statements. These areplaced in any boxes that are left. Place any that you slightly agree with in any spare(+) boxes and any that you slightly disagree with in any spare (-) boxes.

You can move statements around if you feel that they should be in a different place.Once you are happy with the placing of the statements and the grid is complete, pleasewrite the statement numbers into the grid on the back of this sheet. Thank You.

[3] Quigley, E. M., Bytzer, P., Jones, R. et al.: Irritable bowel syndrome: the burden and unmet needsin Europe. Dig. Liv. Dis., 2006, 38, 717–723.

[4] Longstreth, G. F., Wilson, A., Knight, K. et al.: Irritable bowel syndrome, health care use, andcosts: a U.S. Managed care perspective. Am. J. Gastro enterol., 2003, 98, 600–607.

[5] Dancey, C. P., Backhouse, S.: Towards a better understanding of patients with irritable bowel syn-drome. J. Adv. Nurs., 1993, 18, 9, 1443–1450.

[6] Dancey, C. P., Backhouse, S.: IBS; A complete guide to relief from Irritable Bowel Syndrome,1997, Robinsons, London.

[7] Letson, S., Dancey, C. P.: The perceptions of nurses towards irritable bowel syndrome (IBS) andsufferers of IBS. J. Adv. Nurs., 1996, 23, 969–974.

[8] Dixon-Woods, M., Critchley, S.: Medical and lay views of irritable bowel syndrome. FamilyPractice, 2000, 17, 2, 1–8–113.

[9] Casiday, R. E., Hungin, A. P. S., Cornford, C. S. et al.: ‘GPs’ explanatory models for irritablebowel syndrome: a mismatch with patient models? Family Practice, 2009, 26, 1, 34–39.

[10] Stenner, P., Dancey, C. P, Watts, S.: The understanding of their illness amongst people withIrritable Bowel Syndrome: a Q-methodological study. Soc. Sci. Med., 2000, 51, 3, 439–452.

[11] Seifert, B., Rubin, G., de Wit, N. et al.: The management of common gastrointestinal disorders ingeneral practice. A survey by the European Society for Primary Care Gastro enterology (ESPCG)is six European countries. Dig. Liv. Dis., 2008, 40, 8, 659–666.

[12] Hungin, A. P. S., Whorwell, P. J. Tack, J. et al.: The prevalence, patterns and impact of irritablebowel syndrome: an international survey of 40 000 subjects Aliment Pharmacol. Ther., 2003,17, 643–650.

[13] Talley, N. J., Holtmann, G., Agreus, L. et al.: Gastrointestinal symptoms and subjects cluster intodistinct upper and lower groupings in the community: a four nations study. Am. J. Gastro -enterol., 2000, 95, 1439–1447.

[14] Gerson, M. J., Gerson, C. D., Awad, R. et al.: An International Study of Irritable BowelSyndrome: Family Relationships and Mind-Body Attributions. Soc. Sci. Med., 2006, 62,2838–2847.

[15] Health Care Factual Database. Source of prevalence data. (in Hungarian) EgészségügyiStratégiai Kutatóintézet (ESKI) 2005. http://hawk.eski.hu:8080/Tea/

[16] Kovács, Z., Kovács, F.:Depressive and anxiety symptoms, coping strategies in patients with irrita-ble bowel syndrome and inflammatory bowel disease. Psychiatr. Hung., 2007, 22, 3, 212–221.

[17] Kaplan H. I., Sadock B. J.: Synopsis of Psychiatry, Behavioral Sciences, Clinical Psychiatry.Baltimore, MD, Williams & Wilkins, 1991, 498–504.

[18] Newson, S. W. B.: Pioneers in infection control – Ignaz Phillipp Semmelweis. J. Hosp. Infec.,1993, 23,175–187.

[19] Seres, G., Bárdos, Gy.: Psychological factors in irritable bowel syndrome: coping and attachment.(in Hungarian) Magy. Pszichol. Szmle, 2006, 61, 373–397.

[20] Kopp, M. S., Skrabski, Á., Székely, A. et al.: Chronic Stress and Social Changes: SocioeconomicDetermination of Chronic Stress. Ann. N.Y. Acad. Sci. 2007, 1113, 325–338.

[21] Ádám, G.: Visceral Perception: Essay on the Doorstep of Cognition. Plenum Press, New York,1998.

[22] Bárdos, G.: Behavioral consequences of intestinal distension: aversivity and discomfort. Physiol.Behav., 1989, 45, 79–85.

[23] Bárdos, G.: Visceral pain and Nociceptors. Letters to the editor. Trends in Neurosci., 1993, 16,138–139.

[24] Bárdos, G., Gyetvai, B., Móricz, K. et al.: Discomfort: Not pain but still unpleasant feelings fromthe gut Acta Biol. Acad. Sci. Hung., 2002, 53, 423–433.

[25] Webler, T., Danielson, S., Tuler, S.: Using Q method to reveal social perspectives in environmen-tal research. 2009 Greenfield MA: Social and Environmental Research Institute. Downloadedfrom: www.serius.org/pubs/Qprimer.pdf

[26] Dancey, C. P., Rutter, C. L.: Take Control!; Insights into Irritable Bowel Syndrome. TFMPublishing, Shrewsbury, 2005.

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n 498 n2009 n Volume 3, Number 3 CEMED