Journal of Clinical Nursing 1994; 3: 139-145

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Review

The asthma experience: altered body image and non-compliance

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BOB PRICE RGN, BA(Hons), MSc, Cert Ed(FE), ARRCDirector, Diploma in Professional Studies (Nursing), Distance Learning Centre, South BankUniversity, London, UK

Accepted for publication 12 November 1993

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Summiary

• Asthma remains a frustrating and underestimated threat to health.

• Non-compliance with medication is a frequent problem, especially whenasthma attacks are difficult to predict, and amongst children and young adults.

• Non-compliance has been attributed to shortfalls in patient education. Theremay, however, be an attitudinal—altered image dimension to the problem.

Keywords: altered body image, asthma, coping-disability, non-compliance.

Introduction

Asthma is an important and increasingly common inffam-matory disease of the bronchial airways. However, despitethe fact that 5% of adults in the UK and up to 15% oftheir children will be affected (Action Asthma, 1990), andthat this may lead to death as well as alterations in life-style(Burney, 1986; Rea et al., 1987), many patients and theirfamilies underestimate the threat. Causes of death arethought to be related to undiagnosis and treatment, inade-quate patient compliance, and limited insight into thecondition (British Thoracic Society, 1982). Both asth-matics and non-asthmatics appear to remain ambivalentabout the problem, the importance of trigger factor avoid-ance behaviours and use of appropriate drug therapy.

Upwards of a million people consult their GP each yearbecause of asthma (OPCS, 1988). Following developmentof the asthma problem many patients will face a significantdeterioration in their quality of life (Turner-Warwick,1989; White et al., 1989). This includes withdrawal fromsporting and social activities (Hilton et al., 1986) as well as

a reappraisal of their social worth. Children, in particular,express anger, fear and frustration at their condition, thethreat of sudden dyspnoea and perceived restrictions onplay (Carrieri et al., 1991). There is often an increasinglyconscious debate on holidays and travel, because of thepossible need to access emergency services quickly (Beckeret al., 1993). Despite this, the reasons for non-compliancewitb drug therapy remains a conundrum only partiallyexplained (Wilson, 1993; Yoon et al., 1991).

This paper explores some possible links between theasthma experience, the patient's body image and the non-compliance problem. It is emphasized that these areconjectural thoughts, and the basis for planned research,rather than a polemical position arguing that altered bodyimage is the missing explanation for non-complianceamongst asthma sufferers. What is understood to be theasthma experience is examined, drawing upon both medi-cal, nursing and social science literature, before consider-ing the components of body image that may play some partin patients' attitudes towards their illness and their medi-cation. I will suggest the subject area deserves empirical

139

140 B. Price

enquiry, especially when the psychological components ofasthma experience have for so long been confused anddistorted in the debate on the aetiology of asthma.

The asthma experience

There are several characteristics of asthma that makehaving it a particularly problematic experience. Asthma isunpredictable, with acute exacerbations being associatedwith a wide range of triggers, not all of which may beanticipated, or planned against (Kersten, 1989). The levelof dyspnoea varies considerably, but the high level ofexhaustion following an asthma attack will be familiar tomost asthmatics. When the asthma exacerbates, dyspnoeacan occasion terror, with a sensation that the patient willsurely choke (Snadden & Brown, 1992; Gift, 1991). Con-versely, when the patient has not been exposed to anincrease in trigger factors, but sustains chronic exposure tolow levels of allergens, they may seriously overestimatetheir lung function, leading them into poor health choicesand possibly dire consequences (Boner et al., 1992; Tetter-sell, 1993). The challenge of responding to asthma anddyspnoea is not confined to the patient. Family responsesmay be equally important, especially where asthma aflectsa child or adolescent (Taylor et al., 1991). The asthmaexperience as well as being a sequence of symptoms,problems and related coping responses has other social andpsychological dimensions. These are bound up with theexperience of physical limitations, labels of disability andthe stigma that may be associated with sudden breathless-ness and poor participation in sporting and other socialevents. Becker et al. (1993) usefully reviewed the previousnotions that asthma was purely psychosomatic, and that, assuch, it was surely not real, nor life threatening. Theypoint out that even today this poses dilemmas for theasthmatic, given that for long periods of time their con-dition remains socially occult. Dyspnoea remains low key,but the patients are forced to debate whether to be open intheir use of inhalers, or to discuss their condition withacquaintances and associates.

In a culture that has increasingly emphasized indepen-dence, and responsibility for one's own health, themanagement of asthma proves extremely problematic forasthmatics. At once there is a developing social norm thatchronic conditions are usually controllable, and that indi-viduals should value the opportunity to be in charge oftheir environment (Gabbay, 1982; Reiser, 1985; Lowen-berg, 1989). This then threatens asthmatics' perception ofself, their competency as a member of society, because theenvironment (allergens and other triggers) manifestly arenot under control, especially when they feel unsure about

openly relying on medication for assistance. The problemis enhanced when trigger factors for the asthma attack aremultiple and given an individual incident, may provedifficult to identify. Under these circumstances, rather aswith back pain and other conditions where causation hasyet to be demonstrated, alternative, and often irrationalexplanations are developed, each of which may label thepatient as a malingerer, or psychologically suspect.Patients, families and health-care professionals are chal-lenged to explain that psychological problems are sequelaeof the asthma experience, rather than the root of its cause.In these conditions it is hardly surprising that onlyguarded consideration has been given to the range ofpsychological factors that may mediate the coping re-sponse, or the patients' way of accounting for theircondition (Miller, 1987; Jones et al., 1979).

We can usefully characterize the asthma experiencethrough some hypothetical questions that asthmaticsperhaps ask themselves (Fig. 1). In the first instance, theymight ask themselves about the sensations they experience(dyspnoea, fatigue, wheeziness), which might be moni-tored to varying degrees, dependent perhaps upon theirnature and personality as well as changing triggers andlung function. Thereafter, the coping response becomesthe central question. Should they attempt to cope on theirown, with or without drugs, with or without lay support,or beyond that, with the help of health-care professionals?Acknowledging psychosocial limitations associated withasthma may be one response pattern that correlates withdrug compliance. Alternatively, use of distraction, select-ive attention to physical experiences and a code of inde-pendence at all costs, may be associated with limited drugtherapy compliance. '» Luu; )iii,riiHj(n! ni; i-i i.miU^

The third set of questions that our imaginary asthmaticpatient could pose, would relate to the meaning of beingasthmatic? Illness and physical limitations are set in asocial context, and linked to explanations and behavioursthat are meant for the consumption of others. Perceptionsof how society and health-care professionals treat asth-

The experience of symptoms(range, frequency, severity, significance, meaning, perceivedtrigger factors, accuracy, with regard to lung function)

The experience of coping nl jxiji'Un'i Jv'i luodft

(strategics, accounts to others, acceptance oflimitations andassistance or denial of realistic limitations)

The meaning of asthma and being asthmatic(What does being asthmatic mean? Is this stigmatizing? Is it adisease, disability or a challenge? 1 low do other people pictureasthma?)

Figure 1 The asthma patient: aspects of experience )^niri(K|s;

The asthma experience 141

matics, may determine the way in which they attempt tolive with asthma socially. There is a substantial tradition ofsociology and social psychology theory that attests topatients being quite conscious of their 'sick role', andchoosing to use this either to their own end, or to resist itbecause the costs appear to outweigh the support it mightfacilitate.

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The body experience

The experience of an unpredictable lung function, with itsvarying symptoms, is an extension of body experiencesthat all individuals have. These experiences may be quali-tatively different, valued in different ways, and usuallyseen in negative terms—but they do necessitate the explo-ration of body image among asthma patients. It is notsurprising that body image dimensions of the asthmaexperience have not been addressed, because the conceptof body image is both abstract and complex. There aremultiple explanations of what body image consists of, andhow it is functional or dysfunctional in day-to-day ex-istence (Shontz, 1969). Nevertheless, there are ways inwhich body image can be described, and the basic com-ponents of this construct are increasingly understood.These are described here, from a nurse perspective,drawing upon several of the disciplines that have contrib-uted to body image theory.

Body image has been described by Schilder (1950) as,' . . . the picture of our body which we form in our mind,that is to say, the way in which the body appears toourselves' (p. 11). This deceptively simple definition maskssome of the complexities of the three components thatarguably make up body image (Fig. 2). .-.stJ

The first of these is the perceptual element of theconstruct. Individuals gain a range of sensations andexperiences of their body, through the neurological sys-tem, and through visual appraisal of appearance. We are

Perceptual/sensory

Conceptual

Attitudinal/values

Sensations conveyed via neurologicalsystem and visual appraisal—interpreted as a meaning to theindividual, (e.g. body as risk,pleasant, threat, strange, familiar)Means of describing the body inrelation to self and action. Thus thebody can be conceived of as home,container or servant of the selfEmotional scoring of the body, itscomponents, functions andappearance. Valuing body againstpersonal or social reference points.

Figure 2 Components of body image

able to judge the position of our limbs, even with eyesclosed, through a sense of proprioception. Equally, we canmonitor the experience of breathing, rate, depth andrhythm, and even affect that experience through hyperven-tilating or trying to suppress or change the pattern ofbreathing. Early body image literature on this componentconcentrated upon alterations associated with head injuryor brain tumour. As early as 1926 Head described a 'bodyschema' which was one of the first efforts to describe theway in which we may consciously and unconsciously mapthe body experience. Later, during the 1960s, 1970s and1980s, the literature concentrated much more upon theability of individuals to assess accurately their body size,weight, and body part dimensions (Shontz & McNish,1972; Fabian & Thompson, 1989). It was found that sizeestimation was often inaccurate, but that there weresometimes useful indicators of problems experienced byindividuals with 'eating disorders' such as anorexia ner-vosa. What characterized this literature was an obsessionwith just a few body sensations and measurements. Ratherless attention was paid to pain, and little or nothing wasexplored concerning incontinence or other aspects of lostbody control. The predictability (or otherwise) of bodyfunction, even if it was a social expectation of adult status,received negligible recognition.

Other perceptual literature, which developed in parallelto the size estimation material, addressed body boundaries,the experienee of the skin and the body surface as a definerof body territory and in part, self (Scheerer, 1954; Fisher &Cleveland, 1968). In this psychoanalytical tradition, in-vestigators sought to examine the connections between theways in which body integrity was experienced, and pos-sible personal qualities that might be correlated. Fisher &Cleveland (1968) argued that two types of body boundaryexperiences could be described, a high-barrier (high-bodyintegrity) pattern, and a high-penetration (low-body in-tegrity) pattern. They argued that certain 'self starting'personality types were associated with the former experi-ence of the body, that this experience was socially learned,and that it advantaged the individual in social circum-stances. Most of this research was based upon key premisesabout the nature of the mind—body connection, and anacceptance of psychoanalytical concepts such as the ego.Whilst it is debatable whether these findings can readily beacceptable outside that psychoanalytical tradition, theliterature does offer the useful notion of body integrity—aconcept that seems to have some promise when we con-sider the experiences of asthmatics descibed earlier!

As well as a perceptual component, body image may besaid to comprise a conceptual element. We are able tocreate accounts of our body, ways of describing and

142 B. Price Bmrb«;

analogizing it, and these may feature in patients' accountsof their symptoms and coping. Thus, we may consider thatthe human body is a home, a servant or a container for theself. When we are asked to form a mental picture of afriend, it is their human appearance, their frame, thatsprings to mind. It is not surprising then that humanbeings readily develop a range of ways to refer to theirbody as part of the self. This component has been mostfully explored once again by psychoanalysts, who havefound imaginative ways to explore or explain varioushuman behaviour, e.g. aberrant, dysfunctional and sociallydisruptive (Feldman, 1975). The evidence, however, isoften based upon case-study analysis, and we have toacknowledge that nurses may frequently question thescientific basis of such material. Rather more promisinghas been the sociological literature, which has tended toconcentrate upon the social utility value of the body. Thishas featured a number of studies into the beauty = goodequation (e.g. Dion et al., 1972; Martinek, 1981; Cash &Derlega, 1978). What is convincingly argued within thisperspective is that the body experience is shared socially,and that it is ascribed social utility value based upon socialnorms of what is attractive or ugly. Conscious of thesesocial norms, individuals play roles, trying to enhance theirsocial opportunities, monitoring their appearance throughthe reactions of significant others around them (Wright etal., 1970; Snyder et al., 1985). This was nicely summarizedusing exercise as an example in Spink's (1992) small studywhich examined college students private or social exercisechoices. Spink demonstrated that young adults can oftenexperience considerable anxiety about communal exerciseand social physique. Such anxiety might determine indi-viduals' level of healthy exercise and their perseverancewith sport under different circumstances.

The remaining component of body image, relevant toour discussion, concerns attitudes and values. This refinesthe arguments about social utility, investigating the dif-ferent feelings and emotions that individuals have towardtheir bodies, either as a whole, or in dificrent parts (Cash,1990). This insider view of the body has tended to be basedupon notions of 'cathexis', that is, satisfaction with thebody. Levels of cathexis may vary by gender, age, exercise,weight and size, as well as feelings towards specific bodyattributes (Secord & Jourard, 1953). In this literature therehas been a tendency to create large Likert scale tools,which respondents use to score their satisfaction. Theitems chosen for these have tended to be dominated withsize and weight dimensions, but increasingly also includeopportunities to score attitudes toward discrete bodyaspects, including the chest, lungs and fitness (Butlers &Cash, 1987; Noles et al., 1985). One of the weaknesses of

such research has been the tendency to increase thenumber of areas for enquiry within an already large datacollection tool. This has meant that the details concerningany subscale element are reduced in number and becomepotentially less representative of individuals' overall atti-tudes towards their bodies. Moreover, it has not alwaysbeen rigorously enforced that researchers explain exactlywhat they wish to score. This could include feelings,attitudes, intended behaviour—whether this be here andnow, or as a salient response towards the body and theirexperiences. Despite that, this component of body imageholds obvious interest when we consider the experience ofasthma, with its variable course and symptoms.

As thma, body image and non-compl iance :potent ia l connect ions ' :

When a recent CD-ROM literature search was made onthe dual headings, 'asthma' and 'body image', no refer-ences were found. It is argued, from the above literature,that this is indeed a significant deficit, given that affectedbody image (significant distress associated with changes tobody image) may be one part of the asthma experience.There now follows an exploration of some of the conjec-tural connections that could link together the experience ofan illness and a response to treatment. Whilst the literatureon levels of patient knowledge, education, class back-ground and other variables are all acknowledged, there isevidence that the cognitive elements alone cannot explainnon-compliance amongst asthma sufferers (Henry el al.,1993; Tettersell, 1993). There would appear to be anattitudinal and possibly a social dimension to asthmatreatment non-compliance above and beyond this. Thiselement could include body image components, and giventhe high incidence of asthma, and the associated impli-cations for health service resources, there is reasonableargument for investigating whether other interventions,alongside patient education, could prove both practical andhelpful.

If we consider the asthma experience in terms of bodyimage, there is a potential risk of altered body image ineach of the component parts. The sensation of dyspnoea isfrightening, and functions in several different ways toremind individuals that their bodies are less than perfect.Associated with exercise, or voluntary exposure to aller-gens, it acts as a policeman, limiting individuals' sense ofindependence and potency. This may be especially import-ant in adolescence and young adulthood, when body imageformation is critical and when individuals experience theirbodies in sexual and peer approval terms. When dyspnoeais experienced suddenly, and with poorly understood

The asthma experience 143

trigger factors, the body may then be experienced as athreat, and be seen as unpredictable and disappointing.The adolescent asthmatic may envy the assurance offeredto other non-asthmatics whose bodies seem to be predict-able, emphasizing human control, and reliability. Fatiguetoo, reminds asthmatics that their body takes time torecover. Recovery rates, associated with sport are expectedto be quick. The asthmatic patient may feel under theweather for several days after a major asthma attack. Inaddition to these inflammatory factors, patients may regis-ter, accurately or otherwise, a number of sensations associ-ated with medication. The medical regimen for asthma hasbeen carefully and sensitively developed over past years,but patients can, and do, report negative sensations associ-ated with the use of inhalers and medical products. Thesecan include tachycardia, headache and increased excite-ment (Pleuvry & Snowdon, 1988). Gaining accuratedosage, debating the correct frequency of repeat dosage,and self-referral to medical help are not always wellorganized, so that experience of under or overdosingmedication adds to the perceptual experience of asthma.

Distress associated with such perceptions may beenhanced when we consider the ways in which the asth-matic grows up with conditioning and perceived socialnorms. Patients who describe their chest as 'tight' or 'solidand locked in' (personal clinical experience) are findingwords to describe their body in a negative way. The homemay feel more like a prison, and the servant may rise upand wrench control from the master! Set against peerpressure to be individual, to explore the limitations ofphysical function, and confidence, this could well seem aconsiderable handicap. Asthmatic patients rightly seek rolemodels that prove the exception to such restrictions, andthese are energetically noted by asthma patient supportassociations. Nevertheless, the idolized sportsperson mayseem far away when the asthmatic has not only attemptedgreater involvement in sport, but then found that an attackis imminent or already upon them. Faced with guilt thatthey did not take prophylactic treatment, or panic becausethey have not brought along their medication, they areforced to contemplate how they modify their activity, andexplain any need for help to their peers.

Because for the majority of time asthma is largelyasymptomatic, individuals may have been tempted topretend complete social utility —to suggest that they are asfit and healthy as the next person. Indeed, they maystrenuously orchestrate demonstrations that this is so,managing the events with prior medication for thoseoccasions, but not medicating or exercising on otheroccasions. They may have failed to discuss their healthsituation and needs, especially with those who are import-

ant and may be perceived to hold a less than wholesomerespect for them afterwards. Whatever the health educatorsays about openness and telling friends, because thecondition need not be stigmatizing, asthmatics will stillhold understandable human doubts about whether theirfriends will respond as the nurse has suggested theyshould. •'• • • ' • ; : l i : %->',n"-)ri:K!:f- si^u

The attitudes and values of the asthmatic patient remaincritical despite the orientation of research so far. Researchinto non-compliance concentrates upon the perceived edu-cational and home backgrounds of the paient (Yoon et al.,1991; Taylor et al., 1991). Clinic non-attenders are investi-gated in terms of their levels of knowledge about asthmaand its treatment. Levels of knowledge are indeed oftenlow (Tettersell, 1993), but what may be just as functionallyimportant are the attitudes towards the body, breathing,and inhalers (privately or publicly used). There is stillmuch to be discovered concerning whether such attitudesare constant (associated with periods of little dyspnoea aswell as acute asthma episodes), and whether they areaffected by the social environment in which patients live.Attitude change remains one of the most challengingproblems for education, and patient education in particu-lar, but it should be addressed, alongside the tradition ofproviding facts and practical information.

Two fundamental questions remain then before we canargue that there is a significant link between the asthmaexperience-altered body image and treatment non-com-pliance (Fig. 3). The first of these concerns the importanceof the body image element in this experience. Were we todiscover negative attitudes, a sense of inadequacy associ-ated with social norms, and a body monitoring habit that

Asthma as threateningand variable condition

Enforced review of bodyimage, with regard tosociocultural norms/ i

Physical changes ' :urtd]l.=nifi3 Physical changes and ' Iaccommodated and ;,,>,'! :J,'I, treatment rejected, nottreatment incorporated admitted to body imagewithin body image 1/construct \

:nn vlvmnorjiu ?Altered body image ' " •'^ '̂ ^with associated distress,acknovk'ledged and sharedor withheld. • 71 l!

Compliance/non-compliance behaviours

Figure 3 Possible relationships between asthma andnon-compliance with treatment regimen ;:

144 B. Price

emphasized distrust in function, would this constitute'altered body image'.' Arguably, it is only when the patientexperiences (though not necessarily articulates) sustaineddistress in their body appearance and function that alteredbody image might be claimed to exist. Under thesecircumstances there may be opportunities to discuss thisaspect of the experience, and to blend such support into aprogramme of practical skills training, health educationand coping responses. Were asthmatics not to show signi-ficant distress in their body appearance and function(across the components described), then body image expla-nations and care could not form a useful intervention.

The second and equally important question concernswhether a proven altered body image in some way con-tributes to non-compliance behaviour? We have alreadydiscussed the point that other variables do seem to cor-relate with non-compliance, but that when education isadjusted, there is not necessarily a sustained improvementin use of inhalers and medications. Repeated exposure toasthmatic attacks, the accumulating negative sequelae(chronic lung changes) may force more mature asthmaticsto comply with their treatment. The same may not be truefor young adults and children, where asthma often has itsstart point, and body image concerns may be very promi-nent. Compliance then, may be about different orien-tations that individuals have at different times in their life,and be associated with social experiences and unstablebody image values. Assisting younger asthmatic patients tocomply with their medication, during asymptomaticperiods may involve very challenging questions aboutattitude adjustment and youth culture. We might underthese circumstances face the ethical dilemma of how tomaximize positive self-beliefs within the patient, whilst atthe same time, sensitizing them to a different way ofresponding to their body.

Conclusion

In this paper some conjectural thoughts on a problem thatnurses regularly face have been discussed. Given thatasthma has significant risks, which could be limited or eveneliminated through regular medication and life-styleadjustment, how can we explain non-compliance? It's aproblem that is important for nurses who increasingly runasthma clinics, contribute to patient- and health-educationprogrammes, as well as assist patients and families withinthe community. It is suggested that patient education hasnever been a complete answer, and that however difficultthe area of attitudes is, it is in this area that future practicemay have to develop. To this end there is a clear need forfurther research into the potential impact of asthma upon a

patient's body image, and thereafter, were altered bodyimage to be substantiated as a clinical issue, to consider theways in which it contributes to compliance or non-compliance with drug treatment.

Because the psychological issues associated with asthmaare historically sensitive, such research will need to ensurethat the investigators are considering the experience ofasthma, and not debating the aetiology of asthma. Wha-tever trigger factors contribute to patients' asthmaticcondition, it seems clear that it does pose them realpsychological difficulties, and could prompt a review ofhow they feel about their bodies. Such a review may not beconstant, it may fluctuate over time, and according to tbefrequency and nature of symptoms. For these reasons,longitudinal research design is considered to be mostappropriate, contextualizing findings against the home andcommunity settings in which patients live. It is hoped thatexploration of the asthma experience, through each of thebody image components, will afford useful data on whichto discuss future measures. Exploring whether links existbetween asthma, altered body image and non-compliance,should be of real value to nursing practice. 4; 4'.?y"!-:' '•

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