P6030_Qual2_Adams1997

Pergamon

Plh S0277-9536(96)00333-4

Soc. Sci. Med. Vol. 45, No. 2, pp. 189-201, 1997 © 1997 Elsevier Science Ltd

All rights reserved. Printed in Great Britain 0277-9536/97 $17.00 + 0.00

MEDICATION, CHRONIC ILLNESS AND IDENTITY: THE PERSPECTIVE O,F PEOPLE WITH ASTHMA

STEPHANIE ADAMS, ]?,OISIN PILL and ALAN JONES

Department of General Practice, University o1' Wales College of Medicine, Llanedeyrn Health Centre, Maelfa, Llanedeyrn, Cardiff CF3 7PN, U.K.

Abstract--The issue of compliance with prescribed medication has traditionally been dominated by the perspective of the health professional although increasingly sociologists, using qualitative methods, have begun to present the patients' point of view. However, little has been published on asthma, despite the numbers of people suffering from this chronic condition and the amount of medication regularly prescribed. This paper focuses on the perspective of a sample of S. Wales (U.K.) asthma patients who have all been prescribed prophylactic medication in the last 12 months and explores their attitudes to medication in the context of their everyday lives, using inductive qualitative research methods. Two main groups were identified: the deniers and the accepters. They differed fundamentally in their readi- ness to accept the identity of asthma sufferer which, in turn, was associated with very different beliefs about the nature of their problem and the meaning of the medication prescribed for it. There was also marked differences in their strategies of self-presentation and disclosure and their pattern of medication use, particularly for prophylactic medication. A third group, the pragmatists, were also identified as a possible sub-group of the accepter category who are less open within self-presentation and less consist- ent in their beliefs about asthma but do not reject the label entirely. Identity work, i.e. the way the respondents interpreted the social identity of asthma sufferers and managed to reconcile it with other social identities, is proposed as the most useful way of understanding the observed variation in the way people diagnosed as asthmatic conceptualise and use their medication. © 1997 Elsevier Science Ltd

Key words--compliance, medication, asthma, identity

INTRODUCTION

Why patients do or do not take their prescrii~ed medication is a question that has been the starling point for a great deal of research and comment by frustrated clinicians and, more recently, social scien- tists. The medical literature on non-compliance has largely been devoted to documenting the exten! of the problem, identifying the causal factors for compliance and developing educational strategies and practical interactions to improve compliance. Thus, it has been estimated that about 50% of patients do not comply with doctors' advice on treatment (Cart, 1990; Haynes et al., 1979; Ley, 1988; Wright, 1993) but, despite the massive literature (Garrity, 1981; DiMatteo and DiNicola, 1982; Eraker et al.,

1984) there has been limited agreement about the causes of non-compliance (Donovan and Blake, 1992; Stockweli Morris and Schulz, 1992) and limited success in improving patient adherence, particularly for long-term treatments (Haynes et al., 1987).

The inconclusive and even contradictory na:ure of much of the work on this topic has been attr:bu- ted to the absence of a theoretical framework ~.nd/ or sufficient methodological rigour in many studies (Donovan and Blake, 1992; Stockwell Morris and Schulz, 1992) and also to the domination of the perspective of the health professional and the failure to take into account the patient's views. Trostle

has gone so far as to maintain the research literature about compliance is pre-eminently, although covertly, a literature about power and control (Trostle, 1988):

It is written largely by medical professionals about themselves and their clientele, and it reveals the medical profession's world view: the problem lies in patient's behaviour or in doctor/patient interaction; the solution lies in patient education, behavioural reinforcements and better doctor/ patient communication.

However, a body of sociological work is now available which suggests that patients evaluate professional instructions in a wider context than the purely medical one (Drummond and Mason, 1990; Cornwell, 1984; Calnan, 1987; Stimson, 1974) and there is also a small but growing literature which looks specifically at the issue of compliance with prescribed medication from the patients' point of view (Donovan and Blake, 1992; Stockwell Morris and Schulz, 1993; Conrad, 1985; Morgan, 1996).

Much of this work has been carried out using qualitative methods, such as in-depth interviews, to explore the meaning of the medicine and medication-taking behaviour in the day to day life of the respondent. The basic theme underlying these studies has been that the decisions taken are rational in the context of the beliefs, responsibilities and pre- ferences of the patients interviewed. For example, they weigh up the perceived costs and benefits of

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190 Stephanie Adams et al.

the medicine offered (Donovan and Blake, 1992; Conrad, 1985; Arluke, 1980; Hunt et al., 1989; Cooper et al., 1982; Morgan and Watkins, 1988) in accordance with desired outcomes which may not correspond to those planned by the health professional. Modification of the treatment regimen is very common often because of the patients' perceptions that the medication is ineffective and/or the side effects are too troublesome. Several other reasons have been advanced by researchers for self- regulation: desire for greater control over one's life; testing in order to evaluate severity of the condition; practical reasons to do with the daily routine.

Taking regular medication is often advocated for disease suppression: a common example is asthma which accounts for high morbidity in primary care affecting 5% of adults (Fleming and Crombie, 1987) and approximately 12% of children (Usherwood, 1987). The medical model of asthma management involves a complex set of strategies and advocates the use of regular inhaled preventa- tive or prophylactic medication in all but the more mild forms of the disease (British Thoracic Society, 1990) often necessitating the use of medication when the patient may be symptom free. Like diabetes (Peyrot et al., 1967), asthma forms a rich focus for potential mismatch between doctors' and patients" perceptions of compliance with medication and, not surprisingly, failure to adhere to treatment regime is common. However, its precise extent is poorly understood and barely investigated (Cochrane, 1992).

The approach adopted in this study was to explore asthma patients' attitudes to prophylactic medication using a patient-centred rather than a doctor-centred perspective. Accordingly, professional goals and instructions were not uncondi- tionally accepted as the objective standards. The problem, as defined by the clinicians, can be sum- marized as follows. The prevalence and impact of adult asthma is substantial but poor self-management, especially failure to adhere to treatment regi- mens, is common. Prevention is now recognised as an integral part of care and the inflammatory nature of the disease is well understood. But still there are unacceptably high rates of morbidity and mortality (Jones, 1991; Nevill et al., 1993). A per- sistent concern is that a major contribution to the continuation of these high rates is the overuse of beta-agonists (medication designed to relieve symptoms) combined with the underuse of anti-inflammatory medications (designed to prevent the onset of symptoms) (Costello and Mann, 1992; Spitzer et al., 1992; Tattersfield, 1994). Our assumption was that apparently non-rational beliefs and behaviours would "make sense" once the patients' social cir- cumstances, interpersonal and work relationships, and the meaning they attach to the disease itself had been taken into account.

In addition to the medication literature quoted above, this study is also informed by previous social research on chronic illness (Conrad, 1990; Strauss and Glazer, 1975). There is, however, comparatively little on asthma itself. Less than l0 years ago Anderson and Bury (1988) commented that they could not find a research account of living with a chronic respiratory illness. Since then there has been a handful of publications: a survey on the social impact of asthma using standardised interviews (Nocon and Booth, 1990); a study (using more qualitative techniques) of chronic obstructive airways disease (Williams, 1993) which covered some chronic asthmatics with considerable perma- nent and irreversible airway obstruction; and a study (drawing on the interactionist perspective within medical sociology) of the experiences and perceptions of chronic severe asthma in men of working age (Hewett, 1994).

Much of the sociological work on chronic illness has adopted a biographical approach: for example, in his overview of research and debate Bury (1991) conceptualised the career of the sufferer as passing through three key stages; onset, explanation and legitimization and finally adaptation. For Bury onset of chronic illness is associated with biographical disruption, i.e. the person experiencing the onset chronic illness not only suffers pain but also experiences the disruption of work and family relationships and future plans. This can lead in turn to "loss of sell", a sense of diminished identity (Charmaz, 1983, 1987). An important modifying factor here is the significance of the illness to the individual, particularly the negative connotations and stigma associated with the condition.

A useful refinement of the concept of stigma comes from the work of Scambler and Hopkins (1986) on epilepsy. By making the distinction between enacted stigma (experienced from others) and felt stigma (self-maintained) they point out that it may well be the latter rather than the former that makes for disruption in patients' lives. Similar themes have emerged from many of the studies exploring the social and psychological aspects of living with chronic illness and it was anticipated that such concepts might illuminate significant aspects of the experience of asthma patients and the place of medication in their daily life.

The main purpose of the paper is to provide an explanation (using inductive qualitative research methods) for the observed variation in the way people diagnosed as asthmatics conceptualise and use their prescribed medication. A secondary aim is to generate hypotheses to account for the findings, developing and extending concepts already used in the chronic illness literature.

First, the methods are outlined, followed by the main findings presented in the form of a descriptive typology. Finally, a hypothesis is advanced to explain why the people in our sample adopted their

Medication, chronic illness and asthma 191

particular attitude to the diagnosis (with all its associated consequences for medication practice).

METHODS

The methods utilized were guided by the inten- tion that the research would be an inductive hypothesis generating study that brought 1he individual asthma sufferer's perceptions and assumptions to centre stage to enable an exploration and generation of hypotheses that had validity to the asthma sufferers themselves. In common with other qualitative studies the sample was small (N ~ 30) and drawn from a single general practice in South Wales serving 10,000 patients. The six- partner practice is based in modern purpose-built premises in a town that has been traditionally dominated by heavy industry and mining, though the pattern is changing as elsewhere in South Wales. Respiratory problems and chest diseases are therefore familiar to the general population. The practice has a designated nurse-run, doctor-sup- ported weekly asthma clinic.

The number of subjects was intended to allow in- depth exploration of the topic while permitting sufficient time to analyse, re-order and reflect on the data. The choice of subjects was determined by the research question itself in order to maximise the variety of responses, an appropriate strategy where little is known. It was decided to interview only adults over the age of 18 years who have been diagnosed as asthmatic. There is no gold standard for defining asthma, but in this practice a pragmatic approach was accepted where the diagnosis is made if episodic cough and/or wheeze presents in a clinical setting and asthma is the most likely cause ~'ith other causes having been excluded.

In the year before the study started a practice audit (using the practice computer) had examined all inhaled reliever and preventer medication prescribed during the 12 month period. Patients had been classified into five groups according to the ratio of "reliever" and "preventer" medication requested on a repeat prescription basis. ("Relievers" were defined as any selective beta-agonist medication either in dry powder form or metered dose inhaler via any of the current delivery systems available. "Preventers" are maintenance prophylactic treatment, i.e. any inhaled steroid either in dry powder or metered dose inhaler ~tlso via any of the currently available delivery methods.) Taking advantage of this data, a representative number from each group was selected controlling for gender and age. This was done by the social scientist who undertook the fieidwork: none of the partners were involved in the selection process and none knew which patients were interviewed.

All the patients in the study had been labelled as asthmatic and had documented evidence in their notes of a prescription for prophylactic medicalion

in the year prior to the commencement of fieldwork. In the eyes of their medical practitioners they therefore had a certain minimum level of severity of the disease. All patients with mixed obstructive airways disease or who were prescribed maintenance oral steroids were excluded from this sample so that any difficulties in relation to the possible stigma of taking oral steroid medication were avoided. The categories produced by the audit data allowed sampling across a range of patients who had been prescribed both reliever and prophylactic medication but were apparently using their medication in different ways, ranging from those taking relievers only to those achieving a balance. There is no consensus on what constitutes good clinical practice in terms of ratios of reliever to preventer medication in asthma. Nevertheless it is probable that if a patient takes in excess of twice as much reliever as preventer medication that there is either excessive use of beta-agonist reliever or sub-optimal usage of prophylactic inhaled steroid medication.

It was anticipated from the beginning that the pattern of prescribing might bear little relation to actual use and this indeed proved to be the case. For example, we found people ordering prophylactic along with reliever medication "out of habit" but never actually taking any or continually losing their reliever inhalers and therefore ordering far more than they actually took. However, the audit categories were useful in identifying the potential range of respondents in keeping with our wish to achieve a sample that would maximise variety of response to prophylactic medication.

The 30 patients selected consisted of 14 women (10 working class and four middle class) and 16 men (eight working class and eight middle class). Their ages ranged from 19 to 57 years of age. The length of diagnosis ranged from two to 22 years.

Data collection

Fieldwork was carried out in 1994. Respondents were first contacted by a letter from their surgery informing them that they would be receiving a request to be interviewed about their chest problems by a non-medical researcher and asking for their co-operation. (Asthma was deliberately not men- tioned in the letter so that those who had not accepted the diagnosis did not refuse to be interviewed on the grounds of ineligibility). Letters were followed up by a telephone call requesting an interview. All were assured of confidentiality, that any information given would not be traced to individual respondents, and that refusal to accommodate this request would not in any way affect their medical care.

In-depth interviews (average length 1-1.5 hours) were carried out with each respondent in their own home and tape-recorded with permission. Each interview was later transcribed. An "interview guide" was devised and covered all factors pertain-


ing to patients' attitudes to asthma, medication, coping strategies, normalisation and the effects of these on their everyday lives. Each patient, however, set his/her own agenda(s) of what was important to them about their condition and of its meaning in their lives.

Validation of the analysis

The fietdwork and bulk of the initial analysis was carried out by the first author. However, all the transcripts were read and discussed by both the first and second authors and the emerging analyses debated by all three. Key themes and earlier versions of the analysis given here were also presented to both patient asthma groups and professional meetings. Their feedback has provided us with some validation for the typology described here.

MAIN FINDINGS

Initial inspection of the transcripts for underlying themes demonstrated that the sample could be broadly divided into those who did and did not accept the diagnosis of asthma. Further analysis showed this split to be associated with different coping strategies as well as different approaches to medication and its use, so these two polar groups form the basis of the typology described here. However, among those who accepted the diagnosis there was a further division into those who accepted the label wholeheartedly and those who adopted a more pragmatic approach. The findings are accordingly presented under three main headings: deniers and distancers; accepters; and pragmatists. At the end of each section there is a brief discussion relat- ing the empirical data to concepts developed in other chronic illnesses.

DENIERS/DISTANCERS

Self-presentation and disclosure

These respondents comprised half the sample (N = 15) and it was very striking how keen they were to impress on the interviewer that they themselves did not have asthma. Several claimed that "The first they had heard of being asthmatic was when they had the letter" and were convinced they had somehow "got on the wrong list". Many would not respond to questions containing the word "asthma" and had to be interviewed in terms of what they called their "bad chests". Others would allow the interviewer to refer to "asthma" occasion- ally provided they, in turn, periodically claimed that they did not really have asthma or at least not "proper asthma".

Several respondents denied that their doctor had told them that they had asthma, "He didn't actually use the word asthma" (male, aged 22, welder, Int. No. 17), or "She said I had bronchial asthma, so

it's bronchial I am" (woman, aged 52, unemployed, Int. No. 7) or "I've been told I've got an asthmatic condition. I don't think that's the same as asthma" (woman, aged 22, unemployed, Int. No. 19). The patients in this group fell into two (sometimes overlapping) categories; one of which we have termed "deniers", who claim that they do not have asthma at all ("just a bit of chest trouble") and the "distancers", who did admit at times throughout the interview that they had "slight" or "not proper" asthma etc.

In the early stages of the interviews all respondents in this group claimed that their condition had no effect on their lives and that they rarely took their reliever medication. It was only by means of in-depth interviewing that contradictions such as "I used my ventolin everyday last week but some days I actually don't use it at all" were elicited, and that the actual (often quite severe) effects of asthma upon their lives emerged. It became clear, however, that respondents' "bad chests" were indeed affecting their lifestyles and all had developed strategies to avoid physical symptoms. All avoided particular situations such as smoky pubs, barbecues, running, going out if a neighbour had been cutting the grass, staying in as much a possible in certain seasons, rushing etc. Most avoided a combination of such situations. For example, one woman, who claimed that asthma did not affect her life in any way, had difficulty even going into the garden to put out her washing because of the change in atmosphere, and was genuinely concerned that she might lose her husband as it was all she could do to keep breathing during sexual intercourse let alone exhibit signs of enthusiasm or pleasure. The result was that she avoided marital relations as much as possible.

The respondents in this group did not fall into what Goffman (1963) terms the "discredited" who assume that their stigma or disability is immediately evident to others. Indeed, they made considerable efforts to ensure that this was not the case. They fell rather into the "discreditable" category who could pass muster as non-asthmatics. They thus saw themselves as having a choice about disclosure of their "bad chests" and exercised a strict strategy of information control. Partners and close family were unavoidably aware of the respondents' "bad chests" but respondents had developed ways and means of concealing their condition from others. Six respondents took reliever medication before it was necessary just in case they demonstrated symptoms in social/public situations. In other words, they were using their relievers as a preventer.

Relievers were used by all (often frequently) e.g. "behind the machinery in work", "in the toilet" or "by sneaking into the kitchen if we have visitors". With the exception of seven respondents who spon- taneously volunteered the information, each was asked where they kept their inhalers. All but two of this group claimed to take a reliever inhaler with

Medication, chronic

them wherever they went and went on to describe how they had devised strategies of concealing use whether in or outside the home. Most explained their reasons in terms of "embarrassment", "discretion" and "privacy". The desire to present oneself as leading as normal a life as possible and the strategies adopted were found to be integr~Jiy related to their attitudes to asthma, their prescribed medication and to the ways in which they saw the issue of control in respect to their physical condition.

Respondents' notions of asthma and medication

Exactly what are the deniers/distancers refusing to accept? What did they think asthma was, ~.nd what, therefore, did they think "being an asthmatic" entailed?

All deniers/distancers shared the view that the self-image available for acknowledged asthmatic~; is negative. When asked how they knew they did ~aot have asthma or not "proper asthma" or what it would be like to have asthma, all were forthcoming with negative images of what "asthmatics" were like, "Someone in a wheel-chair with an oxyj;en mask on", or "someone who can hardly walk" etc. and words like "weakling" and "wimp" were common place. Such descriptions were often follov~ed by observations that a particular interviewee "was not a bit like that" so could not possibly be suffering from asthma. All wanted to avoid membership of what they clearly thought of as a stigmatised group. They rejected the identity as part of their self-image and viewed the role of "asthmatic" as merely an imposed, meaningless and often tra~asi- tory label or social identity. As one woman explained, "I 've always been chesty, but since last year they stuck the label of "asthmatic" on me. But I 'm no different now and neither is my chesr ' (woman, aged 22, housewife, Int. No. 8). As with all deniers/distancers however, the woman in question was having to come to terms with her awareness of how others may react to this label if known, and with having to try and reconcile the label with her own self-image.

No respondent in this group claimed to know exactly what asthma was (not suffering from it themselves) but all could explain what their "bad chests" meant to them. These representations can be generalized into a "tightening of the chest", "a narrowing of the tubes that help you breath" or "a clogging up of the tubes with mucus". These interviewees were clear that "having a bad chest" did not mean that they were "ill" although asthma could make other people ill. As one respondent expressed it, "It [his "bad chest"] isn't an illness. It 's a condition like having a bad knee. It's goinl; to play you up sometimes but you're not ill" (nmn, aged 20, university student, Int. No. 5).

Many had "been ill" in the last year with c:on- ditions such as tonsillitis or passing a kidney stone,

illness and asthma 193

but none, despite suffering (usually regular) distress with their asthma had "been ill" with asthma. Several respondents admitted that they were "a bit poorly" but only for the duration of their breathing difficulties. Viewing asthma in this way enabled them to see asthma more in terms of an acute form of being unwell, which was clearly (like tonsillitis etc.) more acceptable to them than accepting the label or social identity of someone who had a chronic illness.

Respondents' notions of reliever medication. All respondents in this group were taking more than optimal amounts of relievers only but, as described in the methods, had been prescribed prophylactic treatment. When discussing their prescribed medication these interviewees reconciled their denial of asthma with their use of relievers in a straight-for- ward manner. For example, "Ventolin is used by asthmatics, but it's good for bad chests too" (woman, aged 22, housewife, Int. No. 8). Their model of asthma was essentially a mechanical one--"closing or blocking up the tubes". This was paralleled by an equally mechanical explanation of the effectiveness of reliever medication which was seen as "opening or clearing the tubes".

The fact that both types of asthma medication are delivered by means of an inhaler had both pluses and minuses. For most, taking medication from an inhaler was seen as less serious than taking tablets as it "only goes into your lungs rather than into your system as a whole". On the other hand, there was sometimes an expressed fear of a "strangeness" about inhalers for significant others who may see them. No respondent expressed fears of becoming reliant upon reliever medication for, as seven pointed out, although they may have taken it several times that day they "might not take it again for a few days", thereby largely dispelling any fears of dependency.

Respondents' notions of prophylactic medication. All the respondents (except three) admitted to having been prescribed prophylactic medication but none were taking it. Their reasons for not doing so were complex. Only three respondents were una- ware that prophylactic medication contained steroids and there was much evidence of what has been termed "steroid phobia" (Price, 1994). Slightly varying versions of the following quote were common, "It 's stuff boys use to build muscles up. And they die of it sometimes. They're illegal steroids are" (man, aged 49, machine operator, Int. No. 20). All respondents in this group thought that steroids would have negative side effects. Despite the fact that all respondents admitted to sometimes taking ventolin every day it was also significant that pre- ventative medication had to be taken on a routine daily basis. The respondents' objections took two main (sometimes overlapping) forms. Many feared they would become dependent on any medication that had to be taken daily. All claimed that such


fears would exist if the medication contained steroids or not and regardless of the form of its admin- istration (inhalers, pills, or liquid medication). In addition, the meaning these respondents had placed upon both their condition and its medication--the way they had constructed their illness and its relation to their medication--was equally, if not more, significant. Accepting the need to take regular, daily medication was synonymous with accepting that one was "asthmatic" and/or "bad enough to have to take that sort of stuff". Such daily medication was seen as for those "with proper asthma" and they were pleased that their "bad chests" did not require such treatment.

Furthermore, all respondents considered themselves in control of their condition with the aid of their relievers and while all but two were aware that their surgery provided an asthma clinic none attended. As one respondent expressed it, "OK. I like a few drinks but I 'm not an alcoholic so I don't go to an alcohol anonymous clinic. Same again, I've got a bit of a cough but it doesn't mean I go to an asthma clinic. I wouldn't belong" (man, aged 52, clerical worker, Int. No. 3). It was clear that general practices could provide endless educational programmes and two asthma clinics a day but these patients would not attend for the simple reason that they did not consider that they had asthma.

To sum up, the analysis of the themes emerging from the accounts given by this group confirmed the strong linkages between the meanings given to asthma and its treatment and strategies of normalisation and self-presentation/disclosure. All were refusing to accept the identity of "asthmatic" and were normalising their lives to the best of their abil- ities. They were not just dissociating themselves from specific behaviour but from the whole role of "asthmatic". It is argued that such denial constitutes "a wedge between the individual and his role, between doing and being" (Goffman, 1961) and is likely to result in identity confusion or a "diminished identity".

All wished to avoid membership of what they perceived as a stigmatised group and had recon- structed their asthma in ways that allowed them to deny the label or social identity of "asthmatic". Viewing their asthma as "bad chests" (interpreted as an acute condition) allowed them to use reliever medication. The use of daily prophylactic medication, however, was not acceptable since that was synonymous with acceptance that one was "asthmatic". (The steroid content was also an ad- ditional cause for concern.)

It is suggested that the respondents' refusal to accept that they were suffering from a chronic condition was based on a refusal to accept a sick role of this character which could not be readily reconciled with their other social identities and consequently not readily assimilated into their personal

identities. The relevance of such "identity work" is illustrated in the following example.

Alan was a professional man (aged 42, Int. No. 1) who would not accept that he was an "asthmatic". He claimed that he was "very disap- pointed when I was told I had asthma. I'd always been so fit. I'd never had it before so I couldn't see why I should have it now." As well as being in a position of some authority and status in his occupational life, Alan was involved in the management of sports clubs and on high status social association and played golf, squash and football. He was clearly having difficulty in reconciling the social identity of "asthmatic" with his other social identities of "successful professional", "secretary of several sports clubs" and "fit executive" which were integral elements of his personal identity. To admit the social identity of "asthmatic" into his "role-set" or set of social identities would affect not only the pre-existing social identities but also his sense of self: his personal identity. As he expressed it, "Well people would be very shocked if they knew I had asthma. That's why I've never told them though the doctor suggested that I did. Though I haven't of course. It's just not the way people see me. It's not the way I see myself come to that. I don't know if I could cope if I really had it." The relevance of this identity problem was clear in the way that Alan used his medication, "The ventolin is something I use when I need it to sort out a problem. But the other one, taking it every day .... well, its really admitting to yourself that you are an asthmatic with a real problem here." In common with all the deniers/distancers then, Alan was concerned with his self-image as well as the perceived inevitable effects that others' knowledge of his illness would have on his social identities and the consequent diminishment of his self-identity brought about by the expected reactions of others.

Such identity concerns were not restricted to professional men. Two women nurses who were also mothers and grandmothers, prided themselves on "coping" and "always being able to help others" and found the identity of asthma sufferer unaccep- table. So did younger men and women who perceived a conflict with their image of themselves as successful/attractive to the opposite sex. The nature of the identity problems could vary even when respondents' primary social identity or identities were the same. For example, one woman who had three children under the age of five years of age and whose main identity was that of "mother" could not reconcile the identity of "asthmatic" with the meaning she placed upon her identity of "mother". Another woman whose primary identity was also that of "mother" and who had children of similar age, felt that accepting the new identity of "asthmatic" was relatively unproblematic as she was coping, and seen to be coping, with her family. Whatever the variations, it would seem that when-


ever acceptance of the social identity of "asthmatic" threatens to lead to a perceived diminished self, denial or distancing (which was seen to be integrally linked to use of prescribed medication) is likely to occur.

ACCEPTERS

Self-presentation and disclosure.

The accepters were the second largest group in the sample (N = 9). In contrast to the deniers/distancers all respondents in this group had valida:ed the doctor's diagnosis, freely admitting to be:rig asthma sufferers and accepting the necessity to take both prophylactic and beta-agonist medication. The accepters had completely accepted their condition into both their lives and their self-images. The data contain quotes from each respondent explaining that "asthma is part of me like my bad temp,:r" (woman, aged 38, housewife, Int. No. 22) or "it 's part of my life. Part of me really" (man, aged 22, university student, Int. No. 26). Although all had accepted the label of "asthmatic" at diagnosis they were just as aware as the deniers/distancers of how others (and indeed, they themselves prior to diag~ao- sis) viewed asthma and were far from valuing their association with this social identity. Like the deniers/distancers they had to come to terms in some way with this new label.

Some of the respondents in this group "Felt sort of strange to be told I was asthmatic because you think you are sort of decrepit if you're asthmatic. And I didn't like using the inhaler" (man, aged 45, businessman, Int. No. 23). Others who had b:en suffering symptoms for some time expressed relief "At least I knew what was wrong with me then" but also had to come to terms with the fact that "It wasn't going to go away. Wasn't anything teml:,or- ary" (woman, aged 32, shop worker, Int. No. 10). None had considered themselves ill when they presented to the doctor and their various social ideati- ties, lifestyles and occupations rendered them no more open to the acceptance of the identity of "asthmatic" than did those of the deniers/distancers.

Each respondent, when asked how they had felt upon being told that they had asthma, said that they had received their diagnosis as "bad news" and there is no suggestion that they had simply and easily assimilated the social identity of "asthmatic" into their sense of selves.

All respondents in this group, either spon- taneously or responding to direct questioning, .,;aid that asthma did have an effect on their lives but their descriptions did not differ from the "inconveniences" caused by the "bad chests" of the deniers/distancers. However, they claimed that they did not let asthma stop them "doing anything" as they kept their condition under control; partly by

taking their prescribed medication "properly" but also, and more important, by being the "sort of people they were". Quotes such as "When you live with it (asthma) it's just part of your life. You just take it for granted" (woman, aged 58, canteen supervisor, Int. No. 29) or "My asthma is just a tiny part of my life. It's just there" (man, aged 45, businessman, Int. No. 23) were commonplace.

Each respondent offered comments such as, "I 'm not the kind who makes a big deal of things. I find out the best way to cope and get on with it" (woman, aged 48, shop worker, Int. No. 27) or "I 'm not the sort to panic when I get breathing difficulties" (man, aged 22, university student, Int. No. 26). "Other" asthmatics who did not cope well were castigated for "not using their inhalers properly" (all respondents in this group), "Panicking and making their breathing problems worse" (woman, aged 38, housewife, Int. No. 22), "Playing on it [their asthma] so that they seemed ill" (woman, aged 55, housewife, Int. No. 25) and for not using the right medication. Such errors on the behalf of other asthmatics were corrected if spotted. For example, one woman with a zeal characteristic of this group, had acted as a "whipper-in" and suc- ceeded in getting both her asthmatic husband and her workmate, who were currently only taking relievers, to obtain prophylactic medication.

They were as equally concerned as the deniers/ distancers to lead as normal a life as possible and expressed almost evangelical opinions that if only other asthmatics controlled and coped in the ways they themselves did, asthma need present little problem to anyone. The difference was that coping strategies of this group involved adhering to their medical regimen rather than avoidance and denial. They constantly reinforced their sense of self-esteem by defining themselves against "other" asthmatics who did not cope well.

The strategies in evidence in the normalising process put into effect by this group were quite different from those of the deniers/distancers. These differences cannot be attributed to the fact they are a "discredited" group (and therefore have little choice in disclosure) for, like the deniers/distancers, these respondents fell into a "discreditable" category who could conceal their asthma. There was, however, no trace of concealment or denial but rather a re-interpretation of what it meant to be an "asthmatic". A redefinition of the social identity and thus the meaning of being asthmatic was indeed essential to this group since acceptance of their own pre-diagnosis views of asthmatics as "weak" or "decrepit" would have had problematic repercussions for their self-concepts.

The accepters then, practised an open strategy of full disclosure. "Everyone knew that they had asthma". To conceal would be to continually hide what had been accepted as an integral part of themselves. For example, "It 's part and parcel of me"


(woman, aged 32, shop worker, Int. No. 10), or "They just know. They know me so they know I have asthma" (woman, aged 38, housewife, Int. No. 22). All claimed that taking their reliever inhaler in public/social places was unprobtematic regardless of who was present. Any suspicions or experiences of a negative reaction from others were attributed to the ignorance of those concerned. These were people who "didn't know anything about asthma" and who "should know better with so many people having it due to the environment" etc. The point was to demonstrate to themselves and to others that despite having the social identity or label of "asthmatic" they were in no way socially, person- ally, or indeed (in any meaningful sense) physically, impaired. In turn, this strategy of self-presentation and disclosure was found to be integrally related to the ways they had constructed their asthma and its relation to their medication.

Respondents' notions of asthma and medication.

In their accounts of their reactions to the initial diagnosis the respondents in this group reported that they had held the view that the generalised per- sonality traits that characterised an "asthmatic" were negative. They too had viewed the self-image available to asthmatics as "people who cough and gasp all the time", "delicate people", "decrepit people", "weak" or "disabled almost". The acceptors, however, had undertaken a post-diagnosis re- interpretation of what it meant to be an asthmatic. They drew upon the positive images and models available for asthmatics who "coped" and over- came--particularly the excellent athletes who were now known to be suffering from asthma. It was a point of pride with this group that they were not the stereotypical asthmatic and were not so perceived by others. For example, "I know that some people have funny ideas about asthma. Think you're weak ..... disabled almost. Mind, I never have that sort of attitude from people. I think it depends on what sort of person you are. I don't act ill or weak or anything so people don't think of me that way. I work all hours and keep the house going" (woman, aged 32, shop worker, Int. No. 10).

In the clinical sense the interpretations and meanings placed upon asthma and its medication were far more in keeping with a medical assessment of their condition than those who denied they had asthma. Each respondent was asked what asthma actually was and their explanations can be generalized into, "It's a chronic breathing condition caused by an irritation of the tubes". None, however, considered that they were ill with asthma and thought that asthma itself was not an illness "if it was coped with properly".

Both groups had redefined asthma as a "condition" or an "ailment" but such terms carried different meanings between the two groups. The deniers/distancers perceived asthma as an acute,

intermittent, condition (such as a bad knee). The accepters' re-interpretations, in contrast, showed both the importance of "control" and their acceptance of the chronic nature of asthma. For example, "Asthma isn't an illness. It's a condition, although people can be ill with asthma if it's uncontrolled. If it's controlled it becomes a condition that need not affect one's life greatly" (woman, aged 58, canteen supervisor, Int. No. 29), or "I think it's an ailment. An illness just goes after a certain time. Or it kills you of course. A condition like asthma ..... well it's just always there" (man, aged 45, businessman, Int. No. 23).

Respondents' notions of reliever medication. As with the deniers/distancers all agreed that their reliever medication was very effective and that its function was to "open or clear" the tubes. They were aware, however, that using reliever medication was to merely treat the symptoms not the asthma itself. Asthma "attacks" were "Just acute episodes of an on-going condition". When asked where they kept their inhalers all said that they carried a reliever inhaler with them everywhere and no differen- tiation was made between taking medication via pills or inhalers as "both contain medicine. There's no difference".

Respondents' notions of prophylactic medication. The accepters were clear in their understanding of prophylactic medication, "It suppresses the inflam- mation. But it only works if you take it on a regular basis. It has a delayed affect, it doesn't work instantly" (woman, aged 58, canteen supervisor, Int. No. 29) or "It helps stop breathing difficulties happening. But if you're in trouble then it's the reliever you need" (woman, aged 55, housewife, Int. No. 25).

The taking of prophylactic medication had been routinised into these respondents' lives. It was as routine "as putting one's watch on in the morning". All disliked being dependent on, and taking, daily medication but they accepted their dependency as "part and parcel" of their medical condition which, in turn, was part of themselves. Having assimilated the social identity of "asthmatic" as part of their personal identities the meaning of taking daily, routine medication was different from that of the deniers/distancers. It was an accepted and expected consequence of having an on-going medical condition or chronic illness identity.

Each respondent when asked if they knew what their prophylactic medication contained, expressed their awareness that it was steroid based and each regretted the necessity to take steroids and were aware of the possibility of side effects. They had weighed the costs against the benefits, however, and concluded, as one respondent expressed it in characteristic, matter-of-fact terms, "I don't like taking steroids...but here. I need them to breathe properly, so what can you do?" (woman, aged 48, shop worker, Int. No. 27). These respondents were


equally as aware as the deniers and distancers of the negative image of steroids. They dealt with this by defining themselves against the sort of people ("boys who want to build themselves up") who are commonly thought to take steroids. Their use of steroids was legitimised by the fact they were prescribed for them and was, in any case, essential to their policy of maintaining maximum control over their asthma.

The use these respondents made of their medication does not necessarily indicate a different attitude to medicine in general than that of the deniers/ distancers or a blind acceptance of "doctor's orders". When asked if they ever changed their pattern of use of medication all claimed to have tried "cutting down" on their prophylactic medication, but this had resulted in their taking greater amounts of reliever medication. As each respond,~nt claimed to use as little medication as possible, this had resulted in their return to their prescribed regimen. There was evidence, therefore, that interviewees evaluated the therapeutic efficacy of drugs against the achievement of specific outcomes.

The respondents' adherence to the prescribed regimen did not arise from a greater reliance on the doctor since it was a point of pride that they controlled their asthma themselves. There were m~my quotes to illustrate this independence. For example, "I don't need the doctor as long as the medication is working. I 'd let him know if there was a problem. I just get repeat prescriptions" (woman, aged 32, shop worker, Int. No. 10) or, from another respondent, " I 'm keeping it under control. I rarely go to the doctors. I just get repeat prescriptions, q?he doctor prescribes, but the doctor doesn't do much else. After the last attack I went and told him about it and I told him that I needed more becotide and he just agreed. He said he'd leave it up to m,~. I showed him...my asthma diary, and he knew I was in control" (man, aged 22, university student, ]int. No. 26). All accepters were well aware of the avail- ability of the asthma clinic but only one attended. Thus, although their reasons for not doing so were very different from the deniers/distancers, the re~;ult was the same.

To sum up, the acceptors had fully assimilated the social identity of "asthmatic" as part of themselves and their acknowledgement of the chrc,nic nature of their condition made normalisation and "identity work" more imperative than for the deniers/distancers who viewed their "chest trouble" as an acute, spasmodic condition. While the latter were concerned to distance themselves from both the identity of "asthmatic" and the associated role appropriate behaviour, the accepters, although accepting the identity and medication behaviour, were equally as determined to distance themselves from the stereotypical characteristics associated with their condition. Drawing on the positive role models available they had constructed their ast1~Lma

as a condition that could be controlled and largely overcome. While they had developed effective ways of conveying a meaningful detachment in their per- formance of the attributed role in order to normal- ise their physical conditions and their lives they also fully accepted the social identity of "asthmatic" and exhibited no signs of identity confusion. Their assimilation of this attributed identity involved equally as much "identity work" (albeit of a different character) as did the deniers/distancers' efforts at denial and concealment. In contrast the acceptors did not strive to maintain their pre-diagnosis identity but rather to adapt the social identity of "asthmatic" in ways that did not contradict their other social identities or their sense of self.

Their strategy of self-presentation and disclosure was open and centred around making it very close to the relevant audience that they were not the stereotypical asthmatic. In this way the identity of "asthmatic", while not a positive addition to their self-concepts, was not entirely negative. If their behaviour and self-presentation did not fulfil the role appropriate characteristics of an "asthmatic" then others, even in the knowledge that the respondent suffered from asthma, would not affirm the associated negative images but rather the ability of the respondent to avoid the expected characteristics. This group's interpretation of asthma was also an important element in their notions of the relation between asthma and its medication. For the deniers/distancers medication, particularly prophylactic medication, was viewed as a source of stigma and an obstacle to normalisation: for the accepters it was an invaluable aid to normalisation.

They also exhibited greater knowledge and understanding of both their asthma and its medication. This factor alone, however, is not enough to explain their particular use of medication. Taking daily, regular and routine medication had a different meaning for these respondents: it was a valuable aid to their self-presentation and an expected, "normal" consequence of having an on-going medical condition or chronic illness. They were consequently more receptive to knowledge proffered to them by their doctor and/or had made serious attempts to obtain this knowledge from other sources. This group then, were just as subject as the deniers/distancers to a dislike of steroids, perceived stigma and a dislike of taking daily medication of any sort but, since the identity work undertaken by this group involved assimilating the social identity of "asthmatic" in ways that did not contradict their other social identities or their self-concepts, this had resulted in different meanings being placed upon these factors.

The pragmatists

The remaining six respondents varied in their attitudes towards asthma itself and the experience of being asthmatic and did not fall neatly into the


polar typology so far developed. Such variations also were reflected in the way they used their prescribed medication. All six were closer to the accepters than the deniers/distancers since they reported taking prophylactic medication (though not necessarily in the medically approved way) and all accepted that they did have asthma. However, their notions of asthma, and consequently, appropriate medication use, were somewhat idiosyncratic. Unlike the acceptors there were no comments such as "asthma is just part of me".

For example, two patients interpreted their asthma as "proper asthma" but of the "acute rather than the chronic type". Both claimed that they would have no objection to taking daily steroid medication but that it was "not necessary with their type of asthma". The first respondent (man, aged 32, manual worker, Int. No. 28) had taken prophylactic medication when first diagnosed but was under the impression that it was an antibiotic course that you took upon diagnosis. He took reliever medication only when in extreme difficulties to "clear the tubes". The second (man, aged 35, professional, Int. No. 2) reported taking prophylactic medication only when actually "in trouble" and took his reliever for days after the trouble to make sure "it was gone until next time". From a clinical point of view the former was taking sub-optimal amounts of both types of medication, whilst the latter was taking high amounts of reliever and sub-optimal amounts of prophylactic medication.

All, to varying degrees, were attempting to come to terms with the social identity of "asthmatic" and to reconcile this identity with their other social identities and their self-image. This identity-confusion was reflected both in the ways they interpreted their asthma and in their self-presentation to others. In contrast to the secrecy of the closet-inhalers and the almost evangelical fervour of the acceptors they adopted a more pragmatic approach.

For example, both respondents referred to above practised a strategic policy of disclosure. The manual worker (Int. No. 28) disclosed to family, neigh- bours and friends outside work but did not disclose within his working environment for fear of his condition becoming known to management and endan- gering his employment. As he expressed it, "You have to be careful who you tell. I don't mind certain mates knowing but not those who might tell people I work with. Mind, I was surprised...I was out with a friend of mind...and he got out his pump. He had asthma! I hadn't known...we work in the same place but we hadn't told each other...I was shocked. I told him then. I wouldn't have minded him knowing if I 'd known he had it. Because I explained what type I've got. The type that just bothers you sometimes....Mind, I wouldn't take the inhaler in front of management....If he sees I've got a bad chest....he doesn't know I'm asth-

matic, and he might say, 'No way can I have you working here, you are a risk to me. '"

The professional man (Int. No. 2) felt that his status and ability in work rendered his asthma of little importance and was open to colleagues about his condition and his use of inhalers in work, "They all know my capabilities in work. And asthma doesn't affect those. I 'm in a very respon- sible position...I've had a few promotions...and they knew I had asthma. It's irrelevant" (Int. No. 2). He had not, however, successfully negotiated the identity of "asthmatic" with his other social identities such as school governor and member of the local golf club etc. and did not disclose to people outside work. For example, "No I don't say. I don't think that's the way they see me. I 'm always on the go...a 'doer'". There was evidence of some conflict here since he had interpreted his other social roles (with the exception of his occupational role) in ways that made it problematic for him to reconcile and negotiate the social identity of "asthmatic" with his other social identities. This, in turn, had implications for his self-image or personal identity.

Contextually related strategies of disclosure (in the occupational world for the first respondent and the social world for the second) were clear in varying ways for all six respondents, but the situation cannot be reduced to social class (defined by occu- pation) differences. Another professional interviewee would not disclose or take his inhalers openly in work for fear that this "would undermine [his] managerial authority" yet disclosed to those in his social life (man, aged 43, professional, Int. No. 4). Similarly, another respondent who was a manual worker had disclosed only to management as he had needed time off to see his doctor and would not disclose to his workmates for fear of being thought "a wimp" (man, aged 28, manual worker, Int. No. 6).

It is these respondents, more than any other, that demonstrate that one of the issues of adopting and identifying with a social identity such as "asthmatic" is that their "role-others", that is, their relevant audiences, present asthmatics with a complex set of choices. So far we have described con- sistent responses--denial or acceptance--but the respondents here were characterised by pragmatism and their self-presentation and disclosure shifted according to the relevant audience.

The argument advanced here is that while these six individuals do not fall neatly in to the typology developed so far the themes of normalisation, self- presentation/disclosure, perceptions of asthma, medication use and their inter-relationship were equally relevant for them. Their accounts and reported behaviour can be interpreted as reflections of the identity conflict and confusion that arose as they tried to reconcile the social identity of "asthma sufferer" with their image of themselves. What is less clear is whether these pragmatists, with their


selective policy of disclosure, will eventually become full-blown accepters or whether this represents a relatively stable accommodation to their situations. Given the cross-sectional nature of our data we are unable to answer that question which would need a longitudinal approach to the career of the newly- diagnosed asthmatic.

D I S C U S S I O N

We have demonstrated that respondents' attitudes to medication and medication practice are intimately linked to their beliefs about their condition and coping strategies which, in turn, are associated with the extent of their acceptance and rejection of the identity of "asthmatic". We suggest, therefore, that the concept of identity is consequently the most appropriate framework to analyse the respondents' experiences of being asthn~.atic and, in particular, to understand why people do or do not accept the label in the first place.

We eventually chose the concept of identity rather than "stigma" to frame our hypothesis because we came to the conclusion that although "felt stigma" was clearly a major issue for all the respondents the framework was less than adeqaate for our findings. As Anspach (1979) points out, theories of stigma contain the ever-present theme of passivity and imposed identity. The strategies of the stigmatized person ultimately subscribe to the defi- nitions of normal and "thus he or she derives his/ her identity reactively in response to the imputa- tions of the wider society. (S)he is fated to reraain at the mercy of the Invisible Hand of the Generalised Other" (Anspach, 1979, p. 768). Our respondents are active and creative strategists whether totally rejecting the perceived opinions of others (deniers/distancers) or re-interpreting the label in ways that enabled them to retain a positive sense of self and successfully reconcile "being asthmatic" with their self-concept and lifestyles.

The data provided empirical illustrations of ,;ym- bolic interactionist theories such as Turner (1988) which emphasise the importance of the individaal's self-concept to the way people view and adopt attitudes towards new social identities such as that of "asthmatic". Tracing back the sources of such theories led us to Mead's analysis of the self, specifically his dialectic between the ' T ' , or what we term "personal identity" or "self", and the "me", or what we refer to as "social identity".

The "me" operates in the social contexl, in exchanges associated with other people, group memberships, status and role s, and is a social con- struction. It is the self as seen by significant others. "The 'me' is the organised set of attitudes of others" (Mead, 1934, p. 26), which the self has to take on. "Me" is also the individual self-image in social situations, the way in which the individual evaluates behaviour and symbols from the view-

point of the generalised other and gauges others' assessment of his/her own symbols through the "looking glass" reactions of others, as revealed in the others' gestures. The individual's self-image, his or her assessment of the continuity of their self-con- ception, may be either reaffirmed or placed in doubt by such interaction.

It was with the recognition of this dialectical relationship that we adopted, for analytical purposes, the concept of "personal identity" as synonymous with self and conceptualised "social identity" as the sum of an individual's group memberships, interpersonal relationships, social positions and statuses. An individual's self or personal identity is thus a socially determined historical product of social interaction, but each asthmatic will construct their illness and adopt, interpret and negotiate their new social identity with his/her self-conceptions and pre- existing social identities in slightly different ways.

Chronic illness as a threat to self and identity is a prominent theme in the literature and there have been previous (see Conrad, 1987) attempts to understand the experiences of the chronically ill within a theoretical framework of "identity" (for example, Anspach, 1979; Bury, 1982; Schneider and Conrad, 1981; Conrad, 1985; Charmaz, 1983; Charmaz, 1987). While agreeing with Charmaz's (1987) suggestion that chronic illness may indeed bring about a "diminished self", it is our contention that this will only occur in our respondents if an individual cannot reconcile the social identity of "asthmatic" (this particular "me") with their other social identities which, in turn, are irrevocably inter-connected with their personal identities or sense of self.

It is further hypothesized that when the com- ponents which make up an individual's social identity are in contradiction or conflict, he/she will attempt to reconcile attributed social statuses both with each other, and with his/her personal identity. Failure to achieve such a reconciliation is seen as resulting in an unsatisfactory or "diminished" sense of self. While accepting that chronic illness necessarily diminishes an individual's physical capacities and changes an individual's identity by introducing a new element we suggest that this does not necessarily result in a diminished "self". There were no in- dications of this amongst the respondents who had successfully reconciled the social identity of "asthmatic" with both their other social identities and with their personal identities. For these respondents being an asthmatic was, as they explained, "just a part of me".

It was rather the respondents who had often not even attempted such a reconciliation who were experiencing damage to the self through their efforts at concealment and denial. For these respondents the situation was not quite as Scambler and Hopkins (1986, p. 34) would have it, of "living with a concealed or spoiled identity" as the identity of

SSM 45/2 B


"as thma t i c " was viewed as an unnecessary and imposed label tha t they refused to accept. The issue was ra ther the effort required to conceal and repudiate what was perceived as an unwarran ted social identity forced upon them by others (the medical profession) since acceptance entailed problems with their other social identities and would result in "spoi l t" personal identities. Identi ty mat- ters were clearly vital to gaining an unders tanding of the ways in which the respondents interpreted, came to terms with, and experienced being asth-

matic.

Acknowledgements--Our thanks are due to the National Asthma Campaign for funding this project and the interest shown throughout; to our colleagues in the Department of General Practice for their helpful comments and above all to the patients themselves who so generously gave their time to talk. The interpretation of their comments and the views expressed here are the sole responsibility of the authors. We would also like to thank the anonymous referees who reviewed an earlier draft of this paper for their constructive comments.

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