foumal of Advanced Nursing, 1995,21,695—701

Women's experiences of rheumatoid arthritisShona Brown RGN BSc MScLecturer Practitioner, Centre for Nursing Practice Development, Lancashire College ofNursing and Health Studies/West Lancashire NHS Tmst

and Anne Williams RGN RM BA MA PhDLecturer m Nursing, School of Nursing Studies, Umversity of Manchester, Manchester,England

Accepted for pubhcation 6 July 1994

BROWNS & WILLIAMS A (1995) foumal of Advanced Nursmg 21, 695-701Women's experiences of rheumatoid arthritisThis paper is based on findings drawn from research undertaken within aqualitative framework of analysis The purpose ofthe research was to explorewomen's expenences of rheumatoid arthntis Three areas of concem to thewomen are identified and discussed in the light of relevant literature They areas follows seeking help, searching for meanmg and uncertainty aboutsymptoms A major theoretical concern of both authors is to demonstrate theimportance of placing patients' personal accounts of their experiences andunderstandmgs at the centre of nursing interest and practice It is argued thatthere is a need to develop research studies of how patients expenence disease,in order to develop a basis for good practice

INTRODUCTION

This paper reports on a qualitabve study undertaken toexplore expenences of rheumatoid arthntis, and what itmeans for women to live with the disease (Brown 1993)Both authors are concemed to underline the importanceof placing personal experiences of chronic illness in theforefront of nursing attenbon Gerhardt (1990) notes thatm the area of long-term illnesses, it becomes vital for thosemvolved in care and treatment to know what effects mter-venbons have, not only in clinicsd terms, but also m termsof an individual's life Only then does it become possiblefor treatment and advice to be adapted to the everydayrealities of pabents

The discussion is orgamzed as follows In order to placethe study m a theorebcal context, the authors first examinethe existmg situabon where it appears that professionaldisease perspecbves dominate caregiving pracbces, to thevirtual exclusion of personal knowledge of the diseaseSecond, the methodological basis ofthe study is explamed

Correspondence DrA Williams, Lecturer in Nursing School of NursingStudies Coupland m Building, University of Manchester ManchesterM139PL England

Third, key issues related to the findmgs of the study arediscussed, parbcularly with respect to their significancefor nursing

THEORETICAL CONTEXT

The biomedical approach

The prevfdence of chrome illness has nsen considerablyin most westem coimtnes smce the nud-1960s (Anderson& Bury 1986, Gerhardt 1990) Subsequent clinical mter-venbons for pabents, and research endeavours in contem-porary clmical settmgs, appear to ldenbfy pathologicalprocesses, charting their progress and momtormg physicalresponses to prescnbed treatments (Sacks 1986) As Perry(1991) notes, years of recording observabons of pabentshas simply resulted in ldenbfying signs and sjnmptoms,pathology, and tjrpical resptonses to vanous forms of treat-ment This approach, although useful m some respects,fails to address the area of pabents' personal accounts oftheu exp>enences of illness

Given the theorebcal basis of biomedicme, the focus onpathological and physical processes is not surpnsmg Thebiomedical approach to research and knowledge denves

Women's expenences of rheumatoid arthntis 695

S Brown and A Williams

its conceptual basis from posibvisbe science (Druzee 1989,Doenng 1992) Charactenzed by the objeebficabon of thematenal studied, this approaeh has resulted in a predomi-nant foeus on disease, rather than on the person expenene-mg the disease (Kleinman 1988) From this perspeebve,the seienbst (for example, the health professional) 'knows'or has knowledge In eontrast, pabents' 'subjeebve' expen-enees are seen neither as valid, nor as being valuablereseareh resourees Biomedieal researeh thus results in anundervaluing ofthe emotional, soeial and cultural aspeetsof lllness

Patients' personal expenence and the quahtativeapproach

In some eontrast to the theoretieal perspeetive outlinedabove, Watson (1985) proposes that nursing knowledgemust aeknowledge, value and foeus on personal expen-enee This m tum, she suggests, will faeilitate an under-standing of human responses to lllness Indeed nursingtheonsts aie on the whole united m emphasizing thelmportanee of viewing the patient as a whole person vnthemotional as well as physieal needs (Munhall 1981, Oiler1982, Tinkle & Beaton 1983, Faweett 1984, Leminger 1985,Cull-Wilby & Pepin 1987, Gorbier 1990)

Given this emphasis, one might expeet to find pabents'personal aeeounts of lllness to be a major feature of nursingreseareh To date, however, this is rarely the ease

A possible explanation hes m the historieal develop-ment of nursing researeh Webb (1992) vwites that nursinghas had a relabvely short history m terms of its emergenceas a seienbfie diseipline During this short history, asSwanson & Chenitz (1982) suggest, nurse researehers havebeen too eoneemed with eonforming to prevailing viewsabout what eonsbtutes good seienbfie mvesbgation, m anattempt to projeet nursing as a legitimate scientific disci-pline Developmg this point, Doenng (1992) proposes thatthe value ascnbed to scientific knowledge m botb nursingand medicine refieets the power relationship between tbetwo diseiphnes 'Science' (understood as the objectifi-cabon and measurement ofthe material studied), becauseIt IS an essenbal part of biomedicine, has become greatlyvalued by nursmg

However, despite the value placed on objeebvity andmeaisurement, nurse researehers are beeommg more likelyto quesbon the dominabon of posibvism m relabon to thedevelopment of nursing knowledge (for example, Aamodt1983, Omery 1983, Benner 1985, Morse 1989) It is mereas-mgly aeknowledged that there is no one 'best method' ofseientific mvesbgabon (Field & Morse 1985), and there isrecognibon that to reject one research approach as out ofbounds, for whatever reason, is to restrict the types ofresearch quesbons that can be asked, as pointed out byOakley (1990) Indeed, Morse (1991) writes that qualitabveresearch is begiiuung to make a strong impression on nurs-

mg science It is idenbfied as the major research approachfor the explorabon of feelings, essences, attnbutes, values,meanmgs and charactensbcs of individuals or groups(Burgess 1982, Aamodt 1983, Duffy 1985, Hammersley &Atkinson 1983, Field & Morse 1985)

The research approach m this study

The patient's own expenenceThe quesbons which led to the research discussed in thispaper required a qualitabve approach The authors are eon-eemed to gam an understanding of what it is like to hvewith a disease They are eoneemed with pathology, and thefrequeney and type of signs and symptoms, only msofar asthey relate to how these are expieneneed by pabents Inmany respeets, this eoncem runs parallel with the nursinglmperabve to be 'pabent-centred', and it raises similar prob-lems around how quesbons might be formulated so thatpabents feel able to speak about their expenences

An important feature of this process is showing pabentsthat their self-reported expenenees are valued as researehresources Another important aspect is showing pabentshow their experiences might be taken into account m theorganization of their eare

Issues of emancipation and powerThe eoneem to value the responses of those who are sub-jeets of researeh, and the desire to involve the latter mouteomes of researeh proeesses, is a well-doeumentedfeature of feminist researeh (both quanbtative and quali-tative), whieh IS often earned out with an emaneipatorypurpose (Roberts 1980, Westwood 1984, Oakley 1985,1990) For many femimst researehers, the 'aim is enlighten-ment and, more speeifieally, empowerment of women andthe transformation of patneirchal stmetures and relabonsthat perpetuate the oppression of women' (Hedm &Duffy 1991)

Emaneipatory mterest also raises the issue of power withrespeet to the researeher-researehed relabonship (Hedin& Duffy 1991, Wilhams 1993) In the present study, thereseareher (S B) aimed to treat the mformabon given toher as of equal value to her professional view of the effeetsof rheumatoid arthnbs on the pabents she mterviewed,who were all women However, although eoneeptually thewomen were regarded as very mueh the experts m theinterview situabon, m praebee the potenbal for an unequalrelabonship was eompounded by the researeher's dual roleas researeher and ward sister This was reeogmzed, andthe problem of gaming the women's points of view to thedepth they desired is diseussed in the methods seebonbelow

RefiexivityThe acknowledgement of the researeher's dual role wasprompted by readmgs eoneermng the unpaet m researeh

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studies of the researchers' personal values and mterests(Fanan 1990, Pugh 1990, Stanley 1990, Griffiths 1991)Whilst not exclusively femimst, the pnnciple of reflexivityIS utilized by many feminist wnters m order to thoroughlyexanune the vanous types of influence a researcher mayhave on a research study S B , who undertook theresearch, indicates m the next section how bemg a nurseas well as a researcher affected the decisions she made

THE STUDY

Choice of parbcipants

Qualitative studies are not designed to produce statisti-cally significant, or generalizable, findings Rather, the aimIS to bnng to the attention of the reader certam aspects ofthe phenomena under study, and to develop an under-standmg of the phenomena m some depth (Agar 1980)This aim is reflected m the present study, for example inthe use of 'judgement sampling' (Biu^ess 1984), wherestudy subjects are chosen because it is likely that they willhave detailed knowledge of the topic under study, andthus they will be able to help the researcher to explore theresearch questions posed

The researcher, S B , was concerned to explore theexpenences of women in particular This concem emergedfi'om her clinical expenence of nursing women vnth rheu-matoid arthritis, as well as an intellectual interest (whichshe shares with A W) m the need to develop gender-specific studies of how disease is expenenced Sevenwomen diagnosed as having rheumatoid arthntis agreedto participate m the study The women were m-patientson the ward where the researcher worked as ward sister,and each woman had been hospitalized on severaloccasions as a result of s)naiptoms related to the diagnosisAll the women were willing and, m the view of theresearcher, able to refiect on their expenences m the depthrequired of them for the purposes of tbe study The choiceof patients m this latter respect was based on the clinicalnursmg knowledge of tbe researcher

Interviews

Non-direcUve, conversabonal interviews were used morder to enable the women, as far as possible, to reflect onmatters of concem to them In this respect, interviewsdrew on the work of other researchers, including Fmch(1984), Hammersley & Atkinson (1983), Norman & Parker(1990) and Oakley (1980)

However, working on the assumption that some struc-ture IS mevitable (Hammersley & Atkmson 1983) anduseful in an interview, a topic guide was developed fromexisting literature m order to provide a basis from whichmterviews could proceed

Utilizmg nursmg skills of listenmg and encouragmg, the

researcher allowed the women to introduce an)^ing theyfelt to be important The women's role as experts in know-ing about rheumatoid arthntis was explicitly emphasizedthroughout the interviews

The interviews were taped, with the women's per-mission, and each lasted for just over 1 hour The inter-views were transcnbed verbatim by the researcherAlthough this was a tedious process m some respects, itwas extremely valuable in terms of developing an intimateknowledge of the data

Narrative analysis

The technique of narrative analysis was employed in orderto interpret the interview transcnpts, following Agar &Hobbs (1982), Gerbardt (1990), Graham (1984), Mischler(1986) and Viney & Bousfield (1991)

Using this technique, it is possible to examine whatHalhday (1973) identifies as three analytically distmct func-tions of language which feature simultaneously in any storyThey are the textual, tbe ldeational and the mterpersonalThe textual refers to how parts of the texts are mtemallyconnected via a vanety of semantic and syntactic devicesThe ldeational refers to the content of what is said Themterpersonal refers to the relation between speakers

Accordmg to Halhday (1973), ldeational functions tendto dominate tbe meaning potential of any commumcationAs the main aim here was to examine the women's descnp-bons of their expenences, emphasis was on analysis of theldeational content of the narrabves, although as previouslyindicated, it was recognized that the content of interviewsIS a mutual construcbon

DISCUSSION OF FINDINGS

Each interview transcnpt was read through several bmes,and for each transcnpt a list of ldeabonal themes was con-structed The lists from each interview transcnpt werethen compared That is to say, themes which appeared tobe common to all the scnpts were ldenbfied

Three inter-related themes emerged from this analysisThe first mvolves the help-seeking activities the womenadopted in their vanous attempts to get an acceptable diag-nosis for their symptoms The second refers to attemptsmade by the women to identify the causes of their illnessAs will be mdicated, tbe third theme 'uncertainty' is anaspect of both the first two themes This feature is elabor-ated in discussion of the third theme, particularly inrelabon to the effects that the uncertain and unpredictablesymptoms had on day-to-day living, and on the women'srelationships with others

Each theme is presented below, however the thirdtheme is given greater emphasis m this paper as itrelates, directly, to how the women expenenced theirsymptoms

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Theme one: seeking help

Provision of mformation for patients has received con-siderable attention m nursmg literature (Wilson-Bamett &Osboume 1983, Close 1988, Luker & Caress 1989) In con-trast, little attention has been given to the active role thatmany patients assume Each of the women m the presentstudy referred m some way to the part she played mactively seeking help, and the following discussion high-lights aspects of the help-seekmg process

In chronic illness, differences between feehng well andfeelmg unwell are subtle and, as Hart (1985) points out, agreat deal of uncertainty exists ahout whether any 'realillness' exists, and what action, if any, should be takenFrequently, the women m the present study reported thattheu initial symptoms had been mild, vague and non-disabling, and that it had heen difficult for them to inter-pret what was happenmg to them In trying to explainwhat the symptoms meant, they employed a range of com-monsense explanations such as mmor trauma and over-exerbon However, as symptoms persisted, or worsened,the credihility of such explanations was lost, and thewomen sought help from their general practitioners

The perceptions the women held of the reactions of gen-eral practitioners to their S5miptoms are interesting Onewoman reported how her doctor had said 'Well it's arthritisand you must live with it' Another woman recounted howshe felt ill one weekend

J woke up one Saturday morning and I couldn't lift my head upJ'd never been that bad I wondered if J had meningitis My hus-band said he would 'phone the doctor They said there would bea doctor there immediately Then the 'phone went, and they said'I'm sorry, but if it's arthritis I'm not coming as there's nothing Ican do '

Medical impotence is a feature of the stories told by thewomen mterviewed for this study, and is descnhed inother studies For example. Hart (1985) vwites how chroniclllness can lead to difficulbes m patient-practiUonerrelationships because the persistence and resistance totreatment of chrome illness undermmes the image of tech-mcal supenonty of the doctor In contemporary society,when something goes wrong with our bodies, a doctor'shelp IS sought vnth the expectation that symptoms will betreated The expectations that the women had of their doc-tors were not fulfilled One outcome of this situation wasthat a doctor might be seen as bemg partly responsible forprogressive disability As one woman said

I blame my doctor for letting it go on for months Had I got treat-ment sooner, it might bave held it at bay a bit longer

All seven women talked about their relief at bemgreferred to a sp>ecialist Perhaps this was partly attnhutableto being given what they viewed as an acceptable name ordiagnosis for their symptoms Bury (1988) wntes of how

'recogmtion and naming of a condition may, albeit tempor-anly, help to clear the air and reduce uncertamty'However, as discussed below, diagnosis bnngs with itanother set of questions and problems which relate to thecause of illness and the associated meanmg of illness forthose hvmg with it

Theme two: searching for meanmg

People want to know not only the name of their lllness,but also Its cause (Blaxter 1983, Wilhams 1984, Bury1988) Wilhams (1984) proposes that mdividuals expen-ence chrome illness like any other unusual or disturbingevent, and they attempt to make sense of it in terms oftheir past hfe experiences He terms this process 'narrativereconstruction'

Despite considerable biomedical research, the cause ofrheumatoid arthritis remains unknovra The women in thepresent study had picked up on this, and had considereda multiplicity of potential &ctors m attempts to make senseof their illness Their individual theories included aspectsof biomedical hypothoses, for example, possible influ-ences of environmental factors, occupational factors andauto-immumty

However, each account had a personal component mthat each woman related how events in her past mighthave a beanng on her disease For exeunple, one womanfirmly beheved that her illness was due to her cutting herfoot on the beach For this woman, the mitial symptomscommenced shortly after this event

Another woman felt that the stress of a violent mamagewas an important causal factor, m her case The followmgwords poignantly indicate the importance attached to theindividual search for the cause of the illness

I mean 1 wouldn't mmd having it so much if there was a reasonIt IS very difficult, annoying being m pain, stiff, disfigured,crippled when there's no reason Like if I'd been ill before I couldsay, well I'm like this because of that But they don't know Withme and a lot of other people it just appears I was very annoyed,very frustrated, because there's no answer to why you're like this

Uncertamty, however, was not confined to belief aboutcause. It was also a prominent feature of women's stonesrelating to how they expenenced S5rmptoms, as indicatedbelow

Theme three: uncertainty ahont symptoms

Textbook descnptions of rheumatoid arthntis descnbe adisease which is extremely vanable in chmcal presentationand course, and which is charactenzed by fluctuationsm disease activity (Thomson 1982, Grennan 1984) Thewomen's accounts m the present study illustrate the van-able and unpredictable nature of day-to-day expenences ofthe disease The women descnbed how, on some days, they

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Women's expenences of rheumatoid arthntis

would have httle or no pain and would he ahle to movearound fireely The next day, however, they might he unahleto do an5rthing Not surpnsmgly, the unpredictahihty of thedisease had wide-ranging effects on the daily hves of thewomen One said 'I dread going to hed at night, hecause Idon't know how I'm going to he when I wake up ' Womenalso talked of how they had hegun to momtor hodily sen-sations As one woman put it 'any aches and pams you get,you think, what's happenmg now''

Benner & Wruhel (1989) wnte that for any chrome ill-ness, the meaning emd significance of symptoms are nevercompletely clear Individuals need to decide whether newsensations are symptoms of existing illness, a sign offurther disease progression or something of a transientnature, for example, the result of too much exercise theday hefore Long-term planning was deemed to be imposs-ible hy the women mterviewed for the present study,mamly because of the unpredictability they expenenced'Futures' became foreshortened to 'getting by, day-to-day'

Role incompetence However, living from day-to-day wasonly a part of the women's way of managing rheumatoidarthntis Physical symptoms had a more general impacton their lives For example, some of the women explainedhow they missed what could be seen by many to be verymundane activities, such as cooking, cleaning and, forsome, looking after grandchildren These activities wereassociated with a 'home-maker' role which some of thewomen felt they could no longer fulfil In connection withthis finding, it is interesting to note that despite theso-called sexual revolution of the last 20 years, evidenceexists to suggest that many women consider home-makingas integral to their sense of identity (Rubm 1979, Oakley1985, Reissme et al 1987) Of course, this is not the casefor all women in all situations, but it is evidence thatshould not be dismissed too easily

Locker (1983) suggests that specific role mcompetenciesoften have more general consequences Is the presentstudy, one woman indicated her frustration at being physi-cally unable to pick up her grandchildren, and to be unableto make clothes for them Fmch (1984) pomts out thatwhile 'carmg for' and 'caring about' are not necessanlysynon)?mous, very often doing things for others is viewedas an important expression of canng about them For thewoman mentioned above, functional ability limited theextent to which she felt able to perform m any satisfactoryway the expressive component of her role as grandmother

Dependency Changes m the ability to maintain custom-ary roles may, m tum, lead to dependency The womentalked of their concern about the impact of these changeson those close to them It has been suggested, surpnsmgthough It may seem, that becommg disabled is less signifi-cant for a woman than for a man 'who loses the dignity ofbeing active and teiking responsibility for his life''

(Campling 1981) As the women's accounts reflect, whilethe issues confronting them might differ from those con-frx}ntmg men, they are not any the less prohiematic

For example, some of the women were mamed and talkedahout the gratitude and guilt they felt about bemg depen-dent on their partners Although grateful to their husbands,the women were concemed that the latter were taking onaspects of what had hitherto been the women's domainsIndeed the women were often frustrated by what they sawas their husbands' inability to perform tasks to the standardthey would have wished One woman commented

It makes you feel lmpahent You know, when you're used to domgall that You find yourself thinkmg, well nobody's doing thingsnght But you just have to accept it - he's very good really, but Iget a bit impatient at times

All the women spoke of the burden they felt their physi-cal care caused for others In this respect their words reflectwhat Hilboume (1973) refers to as 'disabling the norm'The women felt uncomfortable about the mcreasmg depen-dence on their families and the associated restnctions onthe freedom of family members, albeit, as they emphas-ized, that support and care were given gladly The follow-ing words are illustrative of the discomfort felt by thewomen in the study, m this respect

It's hard on the family I think it is hard on the children, youknow, because they've got their own families to see to The chil-dren do so much They've got jobs to hold down as well as conungto look after me Sometimes the strain shows They would saynot, hut I think so, anyway I look out for things like that I carehow they feel It's not just a one-sided thing

These words not only reflect discomfort with bemg depen-dent on family members, but they also convey the deepconcem of the women mterviewed for the well-being offamily members m a situation where family relationshipshave become altered

Relationships outside the family In much the same waythat family relations were altered, so too were relation-ships outside the family With friends, relationships canbe seen as penodic (although not always), dependmg onthe ability to meet up, often at short notice One conse-quence of the unpredictable nature of the S5Tnptoms forthe women in the study was that impromptu outings withfnends had to be considered very carefully, or might haveto be cancelled at tbe last minute The women descnhedhow friendships had waned when past reciprocity was nolonger possible From their pomt of view, friends alwayshad to make an effort to come to them, rather than a moreequal shanng of travel arrangements

However, one positive and m some ways unexpectedconsequence of changmg patterns of friendship is reflectedm the following words

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You see, a lot of my finends that I have now, I met through hospital- 80 they're in the same kind of posibon as me I feel more com-fortable around other disabled people Coming mto hospital,everyone is m the same boat, and everyone understands Thistime I've found that I'm not the only one that has these fears, theway I feel, it's not just me, it's other people as well

Of course, not everyone would feel the same way aboutfriendships made m hospital Nevertheless, the extractfrom one woman's account offers a useful perspecbve onthe needs of women who live with rheumatoid arthntisThe extract is an apt reminder of how patients, themselves,might he a potenbal resource for alleviatmg the psychoso-cial disturhances of disease, because of the support theycan give each other

CONCLUSION

This paper has been wntten with the aim of placingpatients' expenences of illness in the foreground of nurs-ing attention Biomedical approaches to the study of dis-ease have contnhuted much to developing knowledge ofthe incidence of disease m populations, general trendsin aetiological and pathophysiological processes, andresponses to treatment However, by failing to acknowl-edge, as legitimate research resources, pabents' ownaccounts of their individual and shared expenences ofday-to-day living with an illness, a large area of potentiallynch and valuable data is overlooked

In the present study of women's expenences of rheuma-toid arthritis, the msights offered are lUummabng andthought-provokmg for nurses, as well as for other healthcare professionals The challenge for us is to consider howto develop lmagmabve ways of both facilitabng patients'accounts of personal expenence and, importantly, oflncorporabng the insights provided through theseaccounts into care plans and clinical practice

The research findings presented in this paper are limitedinsofar as the study was small However, they are nonethe-less telling Further research, which explores the personaland social consequences of the well researched functionalalterations resulbng from disease, is vital for a fullerappreciation of pabents' experiences of illness Indeed byconducbng such research, nurse researchers can make asignificant contribution to the development of patient-centred pracbce Furthermore, by explicitly and visiblyattachmg importance to pabents' perspecbves, and bymakmg these the focus of research endeavours, the tra-ditional view of the passive roles assigned to pabents ischallenged People who experience illness can then makean acbve contnbubon to shaping how their problems areboth conceived and resolved

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