At home in hospital? Interaction and stigma in people affected by cancer

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Social Science & Medicine 62 (2006) 1616–1627

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At home in hospital? Interaction and stigma in peopleaffected by cancer

Kate Wilson�, Karen A Luker

Macmillan Research Unit, School of Nursing Midwifery and Social Work, University of Manchester, Gateway House, Piccadilly South,

Manchester, Lancashire M60 7LP, UK

Available online 29 September 2005

Abstract

Social research conducted in cancer hospitals has tended to focus on interaction between patients and staff, and studies

of interaction amongst people with cancer often centre on group therapy and patient–patient support mediated by health

professionals. Informal interaction between patients and fellow patients, and their carers/visitors, occurs in cancer

hospitals every day but has remained largely unanalysed, particularly in the case of visitors. In this paper, based on data

from 71 in-depth interviews, we compare patient and carer perceptions of interacting with fellow patients/visitors in a

cancer centre with their perceptions of interacting in the outside world. We apply Erving Goffman’s theories on stigma to

the data and argue that these theories have both relevance and currency. The outside world can be seen as a ‘civil place’

where people with cancer often encountered difficulties such as undue admiration, uneasiness, avoidance and lack of tact,

whereas the cancer centre appears to have been a ‘back place’ where, for most patients, stigmatisation was not an issue, and

they could ‘get on with it’ in the company of fellow patients and their visitors. However, some groups of patients

experienced social isolation in the hospital or seemed to be assigned to the lower strata of cancer patient society. We

conclude that patients who are outside the informal support system in cancer hospitals may have psychosocial difficulties

that might be recognised and addressed by healthcare staff, and that patients and their carers might benefit from enhanced

support following discharge from hospital.

r 2005 Elsevier Ltd. All rights reserved.

Keywords: UK; Patients and carers; Stigma; Interaction; Cancer hospital; Outside world

Introduction

Social research conducted in cancer hospitals hastended to focus on interaction between healthprofessionals and patients and, to a lesser extent,between professionals and patients’ family andcarers (Strauss & Glaser, 1970; Strauss, Fager-

e front matter r 2005 Elsevier Ltd. All rights reserved

cscimed.2005.08.053

ing author. Tel.: +44 161 237 2313;

7 2172.

esses: [email protected] (K. Wilson),

anchester.ac.uk (K.A. Luker).

haugh, Suczek, & Weiner, 1985). There are alsonumerous studies and accounts in the healthcareliterature of structured social interaction betweenpeople with cancer, in terms of group therapymediated by health professionals (Bottomley, 1998)and self-help/support groups, which may involveboth patients and their carers (Gray, Fitch, Davis,& Phillips, 1997; Mathews, 2000). For example,Bottomley (1998) asserts the importance of mutualsocial support among female patients newly diag-nosed with cancer during a programme of groupcognitive behavioural therapy. In addition, patients

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ARTICLE IN PRESSK. Wilson, K.A. Luker / Social Science & Medicine 62 (2006) 1616–1627 1617

or ex-patients may be recruited by healthcare staffto support and advise other patients who areexperiencing events or symptoms that they havealready experienced (Rankin, Williams, Davis, &Girgis, 2004).

Informal, often supportive, interaction betweenpatients and fellow patients, and their carers/visitors,takes place in the wards, departments and outpatientfacilities of cancer hospitals on a daily basis but thishas remained largely invisible and unanalysed.Moynihan (1987), in a study of psychosocialproblems in men with testicular cancer, notes thetherapeutic camaraderie amongst patients on thewards of a UK cancer hospital, whilst The (2002),describes and comments on the supportive nature ofrelationships between a number of patient–spousecouples at a lung cancer clinic in The Netherlands.However, camaraderie and peer relationships arenot the main focus of either study. On the otherhand, Norwegian researchers Isaksen and Gjengedal(2000) do make a detailed examination of thesignificance of fellow inpatients for people withcancer, but the subtitle of their paper, ‘What cannurses do?’, reveals its main raison d’etre; in additionthis study did not explore the significance ofpatients’ visitors to other patients and their visitors.

Interactionism, sometimes referred to as ‘sym-bolic interactionism’, is concerned with relation-ships between self and society, which proceedthrough symbols embedded in communication andaction (Gerhardt, 1989). The main theoretical basesof this paper are the interactionist theories of ErvingGoffman, as expounded in Stigma: Notes on the

Management of Spoiled Identity (1963). Goffmannotes that the term ‘stigma’ originally referred tosymbols cut or burnt onto the body to denote moralstatus. Later, it was associated with bodily signs ofholy grace or physical disorder. More recently, theemphasis on physical signs or evidence has de-creased and stigmatisation has come to meanreduction from ‘a whole and usual person to atainted, discounted one’ (p. 11). In Stigma, thosewho do not share a particular stigma are referred toas ‘normals’ (p. 15), stigmatised individuals are saidto view those who share their particular stigma astheir ‘own’ (p. 47), and relatives and close friendsmay become knowledgeable and empathetic associ-ates described as ‘the wise’ (p. 41).

Over the last 40 years, Goffman’s theories onstigma have been adapted and enlarged upon innumerous research publications on illness anddisability, including cancer (e.g. Albrecht, Walker,

& Levy, 1982; Waskul & van der Riet, 2002;Rosman, 2004; Chapple, Ziebland, & McPherson,2004). Two of the main issues that have beenexpanded upon are responsibility for acquisition ofthe stigmatising condition (Albrecht et al., 1982;Chapple et al., 2004), and degree of disruption tointeraction with ‘normals’ (Albrecht et al., 1982;Rosman, 2004). These two themes are foresha-dowed by Goffman in his discussion of ‘blemishesof individual character such as weak will’ (p. 14),and ‘interaction-uneasiness’ (p. 30) and/or the needfor stigmatised people to exert ‘information control’during everyday social interaction (pp. 57–128).Albrecht and co-workers surveyed ‘normals’ abouttheir desired level of social distance from peoplewith various types of stigma and subjected theresulting data to factor analysis; they found thatdegree of disruption to interaction was morestrongly predictive of stigmatisation than wasresponsibility for acquisition. Further to this, Ros-man (2004) interviewed people with chemotherapy-induced alopecia and used Stigma as a conceptualframework for analysing and discussing the data.She found that patients faced difficulties and choicesrelated to information control during everydayinteraction. These included whether to wear a wig,whether to disclose that they had lost their hair and/or whether to express their identity as a cancerpatient by exposing their baldness.

The research publications cited above examineeveryday interaction between stigmatised people and‘normals’ in some detail but, unlike Goffman, theydo not explicitly compare this with interactionbetween stigmatised individuals and their ‘own’/’the wise’. We make this comparison in our paper, inwhich fellow inpatients in a cancer hospital representtheir ‘own’ and visitors/carers are ‘the wise’. UsingGoffman as a theoretical base, we compare experi-ences of interaction, and highlight manifestations ofstigma, as they appear in two settings: the outsideworld and the cancer hospital. Where appropriate,we also make reference to the research publicationson stigma and interaction cited above. Rather thangiving a detailed account of Goffman’s theories atthis point, we allow relevant concepts to emerge inan organic way as we present our data. All referencesto Goffman’s work relate to Stigma (1963).

The study

The data presented and discussed in this paperemerged during a study of discharge planning at a

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Table 2

Gender and kinship status of carers interviewed (n ¼ 15)

Status of carer (N ¼ 15)

Male spouse/partner 5

Female spouse/partner 3

Female friend/neighbour 4

Daughter 2

Mother 1

K. Wilson, K.A. Luker / Social Science & Medicine 62 (2006) 1616–16271618

regional cancer centre (Wilson, Pateman, Beaver, &Luker, 2002). Patients and, where possible, theircarers were interviewed on hospital wards prior todischarge and at home 4–8 weeks after discharge.Demographic characteristics of patients can befound in Table 1, and kinship between carers andpatients is presented in Table 2. We conducted 71tape-recorded conversational interviews: 26 pre-discharge and 22 post-discharge patient interviews,and 8 pre-discharge and 15 post-discharge carerinterviews. The main focus of interviews was thepost-discharge needs of patients and carers. Pre-discharge interviews focused on expected needs andpatient/carer knowledge of any preparations madefor discharge. Post-discharge interviews focused onneeds experienced after discharge and which healthor social service (if any) had addressed them.

Interview tapes were transcribed and analysedthematically (Miles & Huberman, 1994). Thethemes discussed in this paper frequently emergedin response to a question inviting patients and carersto say anything they wished about going home,being at home and coping at home. The researcherwho carried out the interviews (KW) becamesensitive to these themes early in the data generationperiod, as a result of participating in interviews andconducting concurrent data analysis, and discussedtheir emergence with KAL. Rosman (2004) reportsa similar experience of becoming sensitive to thetheme of ‘stigma’ during a study on fatigue inpatients with cancer. It is probably no co-incidencethat we, like Rosman, were influenced by early textson grounded theory that advocate the process ofconcurrent data generation/analysis and researchersensitivity to emerging themes (Glaser & Strauss,1967; Glaser, 1978). Our study did not, however,

Table 1

Characteristics of patients interviewed (n ¼ 26)

Age N ¼ 26 Cancer site/type N ¼ 26

20–39 years 6 Lymphoma 5

40–59 years 9 Breast 4

60–79 years 9 Urological 4

80–99 years 2 Gastrointestinal 3

Gender Haematological 3

Female 14 Head & neck 3

Male 12 Gynaecological 2

Ethnicitya Lung 1

White British 21 Melanoma 1

Black British 3

[Asian] Indian 2

aAs described by participant.

feature other methodological components ofgrounded theory research such as theoreticalsampling of participants, attempted theoreticalsaturation or identification of a core category(Glaser & Strauss, 1967). For pragmatic resource-associated reasons, patients were sampled purpo-sively, thus maximising the heterogeneity of char-acteristics such as age, gender, and specific cancerdiagnosis. For instance, we stopped recruitingpatients with breast cancer and lymphoma wellbefore the end of data generation because we didnot wish the perspectives of people with these typesof cancer to dominate the data. On the other hand,we continued to seek patients with lung cancerbecause these were lacking from the sample. It isworth noting that Morse (1989) and other authorssuggest that theoretical saturation (a state in whichnothing new is emerging from the data generated)may be a myth or an elusive goal. In addition,Glaser and Strauss make it clear that researchersmay follow a grounded theory approach with theend aim of identifying themes; the identification of acore category is optional.

In addition to interviewing patients, KW spentmany hours on the wards of the cancer centre inattempts to identify potential participants, gainconsent for interviews, and negotiate a temporalspace for each interview that avoided periods oftime when patients were having meals/tests/thera-pies or were debilitated by therapies. She was, oftenunintentionally, an observer of (and sometimes abrief participant in) interactions between patients,their visitors and fellow patients/visitors with whomthey shared temporary accommodation (usually along ‘Nightingale’ ward or a six-bedded bay). Theseinformal observations gave rise to data thatcomplemented the interviews and were sometimesdocumented in contextual notes, along with com-ments on individual interviews. Documented ob-servations included the perception that a particularpatient ‘seemed isolated’ in a side ward, and that an


interviewee ‘was joking with another patient’when KW arrived on the ward. Hammersley andAtkinson (1983, p. 118) discuss ‘interviews asparticipant observation’ and note that interactionsand situations encountered before, during andafter interviews may become data in their ownright. These contextual data are used in a generalway in this paper; we do not present any details thatmight identify individual participants or specificincidents.

The study was approved by the relevant localresearch ethics committees. A detailed descriptionof ethical and access issues is given in a previouspaper (Wilson et al., 2002).

Presentation and discussion of themes

The themes discussed in this paper emerged frominterviewees’ responses to questions about thoughtsand feelings on going home from hospital or frominvitations to speak on the subject of going, beingand coping at home. In retrospect, it seems obviousthat reflections on being in the world outside thehospital will, in part, be defined by thoughts andfeelings about being in hospital but, at the time, thiswas largely unanticipated. Once this theme emerged,and began to be pursued, it became clear thatinteraction with other patients and, at times, theirvisitors was important to many interviewees’ feel-ings about being in hospital.

Both pre- and post-discharge interviews gave riseto data relating the cancer hospital and the outsideworld. In other words, patients in hospital spokeabout their experiences prior to admission, anddischarged patients reflected on their period ofhospitalisation as well as experiences of being aperson with cancer at home/in the outside world.For a number of reasons, we present data relating tolife outside the hospital first; the chief reason is thatpeople with cancer once lived in the outside world aspeople without cancer. Data are, therefore, struc-tured under the following headings and in thefollowing order:

�
Dominant attitudes to cancer in the outsideworld � Experiences prior to the first admission � Experiences and interaction following the first,
and any subsequent, discharge
� Experiences and interaction in the cancer
hospital.

Some readers may feel that this structure disruptsthe narrative flow of the data but, in its defence, itdoes promote a clearer comparison between life inthe outside world and in the cancer hospital.

In the data extracts presented below, all namesused are pseudonyms, ‘P’ denotes a patient and ‘C’ acarer, and ‘1’ denotes a pre-discharge interview and‘2’ a post-discharge interview. The cancer hospital isreferred to as ‘the Barton’.

Dominant attitudes to cancer in the outside world

In Stigma, Goffman deals with ‘the situation ofthe individual who is disqualified from full socialacceptance’ (p. 9). Josie, who had undergonepalliative surgery for colorectal cancer summed upthe stigmatisation of cancer patients, and even theword ‘cancer’, in the outside world:

You feel like you’ve got a [leper’s] bell on youand all thaty Don’t mention the word. It’s like‘Don’t mention the war!’ (Josie: P2)

Thus, disclosure that one has cancer can inducestigmatisation similar to that experienced by peoplewith infectious disease. In fact, the very word‘cancer’ arouses images of ‘death, doom anddisaster’ (Heather: C2) and, thus, provokes existen-tial reflections that many ‘normals’ prefer to avoid;for this reason, ‘normals’ may also avoid, or feeluneasiness with, interaction with people who havecancer and their close associates.

Josie alluded to ‘the war’ to denote somethingthat is unmentionable in the outside world but, asnoted by Sontag (1978) and subsequent interac-tionist writers (e.g. Strauss et al., 1985) war is oftenused as a metaphor for living with cancer andstruggling to survive it. Marjorie, an older womanwith head and neck cancer experienced the death ofher son, as a young adult, from Hodgkin’slymphoma. She spoke about an attitude to cancercommonly expressed in the outside world:

It hurts when you hear people saying that they’vefought it and got over it. But they all try! He did.(Marjorie: P2)

Sontag argues that the war metaphor may beunhelpful to people affected by cancer, and Marj-orie’s words suggest that it may be upsetting toterminally ill and bereaved people because itstigmatises dying and dead people by implying thatthey lack(ed) the necessary moral fibre and effort tosucceed. Goffman asserts that stigmatised people

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are frequently assigned ‘desirable but undesiredattributes often of a supernatural cast’ such as ‘sixthsense’ or ‘understanding’ (p. 16); in people withcancer this attribute is the moral courage to fighttheir disease and, perhaps, win. This statementbears connotations of the earlier meaning of stigmaas a sign of ‘holy grace’.

Thus, amongst ‘normals’ in the outside world,cancer was something catastrophic and barelymentionable in ordinary conversation. When itwas mentioned, well-meaning ‘normals’ tended toplace a burden on people with cancer by investingthem with courage and obliging them to fight theirdisease in the expectation of winning.

Experiences prior to the first admission

Some interviewees reflected on their feelings whenthey first discovered that they had cancer and werebeing referred to the Barton. Goffman notes thatdoctors are key to ‘informing the infirm [about] whohe is going to have to be’ (p. 49). In the case of Tomand Dennis, two older men, doctors seem to havefailed in this duty prior to their arrival at theBarton. Both were taken aback, as they had notbeen informed about their cancer diagnoses at thegeneral hospitals where they had undergone inves-tigations. This lack of formal assignment to thecategory of cancer patient may have affected theirassimilation into and interaction in the world of theBarton, as discussed below. Tom, who had bladdercancer, said ‘when I got this letter from here, well Iwas really annoyed about it’ (P1) while Dennis said:

I had to put two and two together when I came inhere to realise that I’ve got lung canceryNobody actually came out with those twowordsy [but] the Barton can only mean onethingy (Dennis: P1)

The subtext here is that ‘the Barton’ can onlymean cancer and, as noted by Sontag (1978), cancermeans almost certain death. Patients who had beeninformed about their diagnosis also reflected ontheir feelings before being admitted to the Bartonfor the first time, such as Maggie who had head andneck cancer:

I started getting these panic attacksy Barton’sbeing what it is could have caused me to havethose panic attacks. And I talked to quite a fewpeople at Barton’s and quite a few of them havethe same panic attacks. It’s quite possible it’s a

reaction of knowing you’re going to Barton’s andknowing what Barton’s is. It’s a cancer place.People die of cancer, and it could be that that’splaying on one’s mind without you realising it.(Maggie: P2)

Experiences and interaction following the first, and

any subsequent, discharge

As reported in our previous paper (Wilson et al.,2002), on discharge from the Barton patientsexperienced a number of, potentially short-term,adverse aspects of going home and being at home.However, interviewees also spoke about morepersistent difficulties, and these often related todisruption of interaction in the outside world(Albrecht et al., 1982) rather than to coping athome:

[One] of my closest friendsy he can’t handle it.He doesn’t want to see me until it’s all over with.He phoned me every other day. He said ‘I reallycan’t see you at the moment’, which was reallyweird. (Rob: P2)

They [friends and customers] didn’t seem toknow how to handle the situation. They think it[cancer] is a word that people don’t want to use,they don’t want to talk, don’t want to mention it.(Neil: P2)

It may be relevant that Rob and Neil bothworked in bars; their transformation from ‘meinhost’ to ‘the ghost at the feast’ may have beenparticularly difficult for friends and customers.Chapple et al. (2004) present some vivid examplesof ‘normals’ avoiding cancer patients and Goffmannotes that:

Pre-stigma acquaintances, being attached to aconception of what he [an ill person] once was,may be unable to treat him either with formaltact or familiar acceptance. (Goffman, 1963,p. 49)

Despite this, some patients were determined toparticipate in the everyday life of the outside world.Katrina, a young mother with lymphoma, contin-ued at her office job, whenever possible, throughoutseveral cycles of chemotherapy:

When I’ve gone in they ask if I’m alright. Butthere again I don’t want to milk ity They said‘Are you all right?’ and, of course, then I flood


with tears and then I settle down. So they’ve beenvery goody (Katrina: P2)

Katrina acknowledged that her colleagues weretrying to be supportive, but it seems that she onlyfelt accepted in her workplace as long as she limitedher cancer talk and strove to manage her emotions.This is coherent with Goffman’s assertion that it isthe duty of stigmatised people, particularly thosewith an illness, to deal with ‘interaction-uneasiness’(p. 30) and put ‘normals’ ‘at ease’ (p. 48). He notesthat stigmatised people are more adept than‘normals’ at managing normal-stigmatised interac-tions because they are more often faced with them.

Anne, who had nonHodgkin’s lymphoma (NHL)was also determined to participate in everyday lifebut seemed determined to talk about her cancer inspite of any negative reactions:

I’ve got a wig if I go out anywhere—not worn ityet—like at quiz night. They all know. I can’tcover up [my intravenous cannula] because Ican’t wear long sleeves and if anybody sees it,tough!.. I tell everybody. I’m never afraid oftalking about it. (Anne: P2)

In Goffman’s terms, and as Rosman (2004)makes clear, a wig is a device for correcting aphysical deformity. Anne’s cannula, on the otherhand, is an undisguised visible stigma in the sense ofa sign of physical disorder. However, Anne’s policyof interacting with ‘normals’ in an open waysometimes rebounded on her:

We went to Madeira last year and got friendlywith a crowd. We were talking to them one dayand they said ‘How long have you had it?’ I said‘Seven years’. He [one of the ‘crowd’] said‘You’re very lucky. My sister died with it in solong [a short time].’ (Anne: P2)

This memento mori during a social interactionwith ‘normals’ was highly distressing to Anne. Sucha reaction to her open attitude to her cancer couldbe construed as mere thoughtlessness or it could beseen as punishment meted out to a stigmatisedindividual. In Goffman’s terms she could beconsidered as ‘discreditable’ because she had cancer,but also ‘discredited’ (p. 14) because, not only didshe disclose that she had cancer but she transgressedunwritten rules by openly discussing it in ordinarysociety. Goffman notes that stigmatised people whoact with ‘bravado’ when interacting with ‘normals’can induce ‘troublesome reciprocations’ (p. 29).

However, he also claims that ‘‘normals’ really meanno harm’; they behave in this way ‘because theydon’t know better’ (p. 141). Our interview datasuggest that, in general, when cancer was mentionedin the outside world, what was said was unhelpful topeople with cancer and their relatives/friendsbecause of a lack of tact and/or friendliness.

Some interviewees felt uncomfortable and mis-understood because of the near-saintly courageassigned to them by ‘normals’; Josie, for instance,characterised herself as ‘not brave’ but ‘frightenedto bloody death’ (P2). Goffman notes that stigma-tised people sometimes compare themselves with‘normals’, i.e. people who do not share the sameillness/stigma, and find themselves to be, bycomparison, physically and socially advantaged.This may be another instance of people affected bycancer rejecting the attribute of extraordinarybravery in the face of the enemy. Josie and Heatherspoke with the authority of a person with cancerand the daughter of a woman who had undergonemastectomy respectively:

There’s bloody worse things to have, quitefrankly. I mean, I wouldn’t like emphysema fora kick off. That’s hell on earth, emphysema—dying in your own spit, drowning in it slowly.(Josie: P2)

There’s other diseases. They’re getting evenworse care, because they don’t have a capital‘C’. (Heather: C2)

Heather, and most of the other carers inter-viewed, linked the Barton with the outside world, asthey interacted with people with cancer in bothsettings. Goffman dubs close family, and othersupportive associates, ‘the wise’ (p. 41); these areknowledgeable and empathetic people who bear a‘courtesy stigma’ (p. 44) (in our study, an associa-tion with cancer). The role of carers is consideredfurther below.

Experiences and interaction in the cancer hospital

At the Barton, people affected by cancer foundtheir ‘own’ (Goffman, 1963, p. 47): others whoshared their stigma, gave them ‘moral support’ andmade them feel ‘at home’ (p. 32):

I thought it was just me [having panic attacks]but when people in Barton’s told me themselvesthat they’d gone through similar thingsy then I


was quite cheerful because I wasn’t on my own.(Maggie P2)

A clear illustration of interaction between pa-tients at the Barton is given in one account of firstadmission to the hospital. Kath, Tom’s daughter,spoke about his accidental discovery of his diag-nosis (see above) and his anxiety before admission,and then gave her opinion of interaction amongstpatients at the Barton:

It’s fantastic! As my dad was getting out of thetaxi to go iny he went to get back in the taxiagain. There was a patient [at the door] and shesaid to him ‘Where are you going?’ and he said‘I’m going home.’ He really got all worked up.And she said ‘No you’re not! If I can do it, youcan do it. Get yourself in there!’ That’s whatthey’re like. (Kath: C2)

The stoical yet sympathetic culture of the Bartonand its patients is evident in the woman’s exhorta-tion ‘If I can do it, you can do it’. Goffman notesthat self-help and pressure groups expose a newlystigmatised person to ‘a desirable code of conduct’(p. 37) and that:

Fellow sufferers more advanced than himself indealing with the failingy welcome him to theclub and instruct him how to manage himselfphysically and psychically. (Goffman, 1963,p. 50)

The same may be said of visits and, especially,admission to cancer hospitals such as the Barton.The ‘atmosphere’ (or ‘code of conduct’) at thehospital was characterised by resignation and thenecessity to ‘do it’ or ‘get on with it’:

There’s a strange atmosphere down there.There’s some very poorly people and younever see a soul crying. They just get on with it.(Anne: P2)

The attributes (sympathy, stoicism etc.) notedabove are admirable, but they are on a human scale,as opposed to the superhuman bravery oftenattributed to people with cancer by ‘normals’. Thelanguage is more suggestive of working on, ortowards, something than of heroic ‘battling’. Goff-man uses a work-oriented metaphor when notingthat stigmatised people often teach ‘tricks of thetrade’ (p. 32) to newcomers. It may be that, in theBarton, patients gained some respite from the socialnecessity to do battle with their cancer. To extend

the war metaphor, they may have felt that theweapons of medical intervention defended themagainst further attack and allowed them to ‘get onwith it’ in company with fellow patients and,sometimes, their associates.

We identified four categories of interactionamongst patients and, sometimes, their visitors;these were characterised by stoicism, sympathy/empathy, information, and humour. These types ofinteraction were closely related and frequentlyoverlapped. For example, humorous and informa-tional interaction often involved a high degree ofsympathy/empathy. Sympathetic and empatheticinteractions occurred along a continuum: at oneend, sympathy was expressed between patients withthe same type of cancer and, at the other, empathymight occur between a patient and the carer of afellow patient with a different type of cancer.

The stoicism exhibited by patients in the Bartonhas been illustrated in the extracts presented above;these make it clear that stoical conduct waspromoted through both internal emotional pro-cesses and interaction with their ‘own’. At its mostbasic level, sympathy was demonstrated by patientsat the Barton being aware that each other hadcancer and asking ‘Where’s yours?’ (Josie: P2). Bill,the husband of Maureen who had undergonepalliative surgery for a large pelvic tumour,described the atmosphere of sympathetic interactionand stoical effort that he had experienced:

She has been quite happy in Barton’s and withother patients in her bayy In that little four[bedded] ward there, the atmosphere has beengreat. If anybody’s helped one another theyhavey They’ve all got the same blumming thing:‘Let’s get on with it and let’s enjoy ourselves asfar as you can.’ (Bill: C1)

Some patients described specific encounters inwhich they were either recipients or givers ofsympathetic reassurance that promoted stoicalconduct. Ahmed, a young man with multiplemyeloma, spoke about Lenny whom he had meton numerous occasions as both an inpatient andoutpatient, and Harry, a patient in his 70 s who hadhad urological surgery, recounted an incident in hisbay:

We [have] become good friends now and he saidhe had [a] stem cell [transplant] beforey He said‘Don’t worry’ and he had [it] 3 weeks before me.


So we met the day I went for admissiony Hegave me a lot of confidencey (Ahmed: P2)A young woman came, she was visiting herboyfriend who was no more than 20–24. He wasfrightened to death and he was going to have thesame operation as me. She came up and asked mewould I have a word with her boyfriendy So Idid. I spent quite a long while. (Harry: P2)

This second extract describes sympathetic inter-action between two patients, mediated through theagency of one patient’s visitor. Visitors, because oftheir ‘courtesy stigma’, were also recipients andgivers of sympathetic/empathetic reassurance. Pa-tients told Kamla, whose husband had NHL, ‘Hewill be all right after treatment’ (C2) and Edna, whoalso had NHL, told the following story:

We got some good advice from another lady’shusband—the lady that was opposite me [in mybay], Pam. Jim [Edna’s husband] had had a bitof an awkward day at the hospital with mewhen I was very low and he [Pam’s husband]came across and he said to me ‘Don’t worryEdna’—because Pam was very cheerful—‘Don’tthink she’s always been like this. She’s beenthrough exactly what you’re going through andI’ve gone through what Jim’s going through’.(Edna: P2)

These interview extracts suggest that, despite (or,perhaps because of) the prevailing code of stoicalconduct at the Barton, patients and visitorsrecognised negative emotions such as worry, fearand low mood in other patients/visitors and wereoften prepared to address them.

The sympathetic/empathetic interactions de-scribed above contained informational elements,based on people’s experiences of medical proce-dures, mood states and so forth. In some interac-tions, the emphasis on giving informationpredominated. Maureen, spoke about her effortson behalf of several patients on her ward:

One [patient] didn’t know whether she was goingto have a colostomy, the other one didn’t knowwhether she was going to have a urostomy. So, Ihad my things [stoma bags] on and I was showingthem, and I explained to themy [Another] timewhen I was iny all of a sudden, a chap says [tome]y ‘Go and talk to him [another patient]—he’s just had a colostomy... She [Maureen] knowsall about it, she’s got one’. He [the other patient]was chuffed to blazesy I was quite happy. I

don’t worry about anybody seeing my colostomybecause the more people know about it thebetter. I said to this man ‘Get it in your head thatyou can change that yourself and you’ll be allright’. (Maureen: P2)

Maureen interacted with others in this waywithout being enlisted by hospital staff although,on this occasion at least, she was prompted by afellow patient. Her husband said that she hadhelped numerous hospital patients who were appre-hensive about having a stoma and likened herefforts to ‘a part time job’. Goffman notes theparticular stigma carried by ‘the ileostomied andcolostomied’ (p. 34) and remarks on the existence ofthe ‘professional’ stigmatised person (p. 38). Otherpatients/carers undertook information-giving thatresembled the paid work of healthcare staff; forexample, Jan who had breast cancer with spinalmetastases learnt about Disability Living Allowancefrom another patient.

KW noted the ‘atmosphere’ on the wards at theBarton and agreed with Anne that ‘you never see asoul crying’. In fact, patients and visitors frequentlyengaged in humour: laughing and joking with eachother. Josie, in particular, provoked much hilaritythrough self-deprecating comments and storiesabout her spirited encounters with healthcare staff.At her second interview, she acknowledged that shehad other patients on her ward ‘in stitches’. Thiswas particularly poignant as both she and herfriend, Tina, made it clear that she was lonely athome and tended to brood on her many physicaland psychosocial problems.

Edna noted that Pam’s husband (see above)‘made me laughy he just said things now andagain that cheered you up a bit’ (P2). However,when Edna described the comic remarks made byPam’s husband, KW had to work at appreciatingthe humour in them. One was about Edna’s inabilityto chew because of a sore mouth caused bychemotherapy: Pam’s husband suggested she shouldsuck her roast beef instead of eat it. This humorousinteraction was grounded in an empathetic under-standing of negative situations, and helped topromote stoicism and a sense of cohesion. It canbe argued that KW was not sufficiently ‘wise’ tointeract with patients and carers in this way orunderstand such interactions fully. Waskul & vander Riet (2002) take an interactionist approach to‘the abject body’ (p. 487) in cancer and note theusefulness of ‘gallows humor’ (p. 502) in coping


with emotions raised by potentially embarassingphysical issues.

Bill, Maureen’s husband, was the only intervieweewho spoke about interacting in a ‘hands-on’ way.He felt that the wards were understaffed and that,despite the best efforts of nurses, patients sometimeshad to wait for basic care. He stated that he wouldwash incontinent patients and change their clothes/bedding if he felt this was necessary: ‘If I couldn’tget a nurse I’d get on with it myself’ (C1). This mayhave been prompted by involvement in Maureen’sstoma care, and her example of engaging insympathetic and informational interaction. In Goff-man’s terms, Bill was a clear example of ‘the wise’who was accepting of his ‘courtesy stigma’.

Interactions between Ahmed and Lenny, andHarry and ‘the boyfriend’ (see above) emphasisedmembership of the cancer patient category; in theircases, racial and age groupings seemed to be of littleor no importance. However, five patients hadcertain features that appeared to affect theirinteraction with others at the Barton in a negativeway. These ‘group isolates’ (Goffman, 1963, p. 169)were set apart from others in their wards becausetheir self-identities were, by and large, determinedby membership of social groups other than that ofcancer patient. Goffman notes that within aparticular social group:

All the other categories and groups to which theindividual necessarily also belongs are implicitlyconsidered to be not his real ones. (Goffman,1963, p. 137)

In our study, group isolates were marked by: (1)younger age; (2) overwhelming need to see cancer asan acute episode; (3) co-morbidity; and 4) lack offormal notification about their diagnosis. The fivegroup isolates that we identified tended to havemultiple bases for their isolation.

Rob and Paula were both under 50 years of ageand both commented that the wards tended to beoccupied by older people:

It wasn’t so bad this time, actually. There wastwo young lads on the ward. (Rob: P2)

Being on this particular ward was a bit of a shockbecause there’s a lot of people who are sufferingfrom secondary cancers. They started off withbreast cancer and ended up with lung canceror a brain tumour. They’re all elderly ladiesy(Paula: P1)

Thus, Rob defined himself as belonging to agroup of younger people and Paula was disturbedby enforced contact with older people who had hadlong illness trajectories which had led to theincreased stigma of incurable metastatic cancer.Further to this, Goffman states that:

The stigmatized individual exhibits a tendency tostratify his ‘own’ according to the degree towhich their stigma is apparent and obtrusive. Hecan then take up in regard to those who are moreevidently stigmatized than himself the attitudesthe ‘normals’ take to him. (Goffman, 1963,p. 130–131)

Rob, Paula and Angela all had a particular needto view themselves as experiencing an acute episodethat would soon be over, and were distressed byhaving to confront the possibility of furtherepisodes or progression of their disease. Paula’scomposure was affected when she heard a patient onher ward saying to a doctor ‘You told me it was allgone last time I was in here’; according to Paula, thedoctor replied ‘What can I say? It’s come back.You’ll just have to take it as it comes’. This incidentmade Paula feel that ‘you can’t really get your hopesup and think, Oh yippee, I’m cured!’ Further to this,Rob and Angela both wanted to be discharged fromthe Barton as quickly as possible:

The end is in sight nowy I hate, I hate beingconnected to all this. (Rob: P2)

I hate Barton’sy every single patient in there issuffering from cancery which doesn’t give you alift because you don’t see people getting better.(Angela: P2)

Paula and Tom were both being treated fordepression, only partially related to their cancer.Tom had experienced depression for several yearsbut, according to his daughter, was very good athiding it. He spoke appreciatively about the hospitalduring the first interview but seemed distanced fromthe other men in his six-bedded bay. Paula foundother patients’ attempts at empathy and/or sym-pathy overwhelming, especially at first. The follow-ing extract is reminiscent of Josie’s comment thatBarton patients tend to express sympathy by asking‘where’s yours?’ but, unlike Josie, Paula found thisform of interaction intrusive:

You know how people are in hospital? Theperson in the next bed’s always saying ‘What areyou in for?’ Do you know what I mean? And I


was like: ‘Oh, sod off’—blanket over head—‘Leave me alone.’ (Paula: P2)

In addition to depression, Paula may have beenexperiencing ‘identity ambivalence’ resulting from ‘aclose sight of his own kind behaving in a stereo-typed way’ (Goffman, 1963, p. 131). Later in herstay, Paula began to respond to advances from her‘own’ and to participate in the life of the ward.Goffman notes that there may be ‘affiliation cycles’(p. 51) during which the stigmatised person acceptsand rejects group membership.

Tom and Paula’s depression was a psychologicalcomorbidity occurring concurrently with theircancer. Angela, who had a number of physicalillnesses including arthritis, was housed in a side-ward and felt that this made her ‘very, very lonely’with ‘no-one to talk to’. She explained that shecould not even socialise at mealtimes:

You see, with being disabled, when they ring thebell at teatimey I can’t just jump out of bed.(Angela: P2)

Angela’s reaction would seem to be understand-able. However, her words about hating Barton’sbecause everyone had cancer, and her emphasis onher other disabilities complicate the issue. In fact,she had told the nurses that because of herdisabilities she needed to eat in her room. Rob alsohad a serious health issue and was aggrieved aboutthe way that this had been addressed by hospitalstaff. Significant comorbidity may have placed thesepatients in another category to that of cancerpatient, and lack of acknowledgement of this bystaff and patients may have alienated them from thesocial life of the Barton.

As noted above, both Tom and Dennis said thatthey had not been formally told about their cancerdiagnoses. It remains possible that they had beeninformed but did not register and/or acknowledgethis; however, there is no clear reason to doubt thesemen’s assertions. They expressed shock and annoy-ance about their experiences but did not commentfurther on the psychological and social effects of notbeing officially told, in Goffman’s terms, who theywere ‘going to have to be’ (p. 49). They did,however, seem somewhat detached from the socialinteraction in their six-bedded bays. In addition,Dennis found it so difficult to act with stoicism thathe showed levels of anxiety suggestive of comorbid-ity. Unfortunately, his lack of stoicism may haveburdened him with another stratum of stigmatisa-

tion, and his diagnosis of advanced lung cancer mayhave added further strata. As Chapple et al. (2004)note, lung cancer may provoke fear because of itsgenerally poor prognosis, and disgust and blamebecause of its association with smoking.

Further discussion and conclusions

Interaction is, perhaps, best explored using astudy design that involves some form of observa-tion. However, in our study, the theme that welabelled ‘interaction’ arose during a study based onin-depth interviews; apart from data gained in thecontext of these interviews (Hammersley & Atkin-son, 1983) we did not have permission or sufficientresources to collect observational data. In addition,from a pragmatic point of view, it would have beendifficult to observe our participants interacting inthe outside world. Issues relating to interactionemerged early in the interviewing process andgained prominence throughout the data genera-tion/analysis period and, thus, seemed worthy ofattention. It should, however, be remembered thatmost of the data presented in our paper representpatients’ and carers’ perceptions of interactionsrather than observation of them.

As Atkinson (1992) notes, any written product ofresearch represents only one possible version of thedata generated; a version arises out of dataselection, labelling of emergent themes, conceptualframing and other processes. Because the noveltheme of patients’ experiences in the outside worldas against in the hospital emerged from the data, wewere left to consider which body of theory mightthrow the greatest light on it. We could have takenan alternative interactionist perspective and, thus,have framed it as an extension of Strauss andcolleagues’ analysis of medical work in hospitals(Strauss et al., 1985), placing emphasis on thecomposure, empathy/sympathy, information andhumour work of patients/visitors (perhaps, entitled‘At Work in Hospital?’). We could have drawn onanthropological ideas and highlighted culture,rather than interaction, in the outside world andthe Barton. In this case, issues such as liminality(van Gennep, 1960; Little et al., 1998) would haveemerged, especially with regard to patients’ firstadmission to the Barton and their potential banish-ment to the margins of the outside world. A numberof other theoretical perspectives, includingcoping theory (Lazarus, 1966) and Stoic philosophy(Schofield, 1991), were possible. However, to us,


Goffman’s work on interaction and stigma providesthe most appropriate and enlightening lens throughwhich to view these data, mainly because it isapplicable to a wider range of the data than thealternatives we considered. In addition we, incommon with Lofland (1980, p. 48), value Goff-man’s empathetic interest in ‘the conditions underwhich mere people can be persons’. This concernseems appropriate to research based on patient/carer perspectives and findings that highlight peersupport.

Over 40 years after the publication of Stigma,some of Goffman’s language (‘normals’, ‘theileostomied and colostomied’, overarching mascu-line pronouns/possessive adjectives) may seemnaıvely discriminatory, but his theories on interac-tion and stigma have currency when applied topeople affected by cancer and their experiences of‘normals’ in the outside world. This is, perhaps,surprising when we consider the extended periods oftime that people with cancer now spend in theoutside world, due to both faster hospital through-put (Wilson et al., 2002) and increased survival rates(Tritter & Calnan, 2002). Joffe (2002) claims thatfear of cancer has diminished markedly as medicalknowledge and success rates have increased. Ourfindings are at odds with this. Further to this, wefeel that we should acknowledge that most peopleaffected by cancer experience it as more than asocially assigned stigma; even in an age of majortechnological advances it remains a physical illnessthat may have (or evoke fear of) negative sequelaesuch as pain, reduced income, limited activity anddeath.

To answer the question posed in the title of ourpaper, patients and their visitors seemed, by andlarge, to be ‘at home’ in hospital. Whereas theoutside world was ‘a civil place’ where peopleaffected by cancer were ‘sometimes painfully,treated as if they were not disqualified for routineacceptance’, the Barton appears to have been a‘back place’:

ywhere persons of the individual’s kind standexposed and find they need not try to concealtheir stigma, nor be overly concerned withcooperatively trying to disattend it. (Goffman,1963, p. 102)

As shown in the material on group isolates andstratification presented above, stigma is a complexphenomenon:

ysince interaction roles are involved, not con-crete individuals, it should come as no surprisethat in many cases he who is stigmatised in oneregard nicely exhibits all the normal prejudicesheld toward those who are stigmatised in anotherregard. (Goffman, 1963, p. 164)

Thus, although most patients in, and visitors to,the Barton expressed cohesion on the basis that theyshared the stigma of cancer, some group isolates didnot feel ‘at home’ and appeared to take the role of‘normals’ with regard to older patients, and thosewith advanced cancer and/or particularly lethaltypes of disease. Patients such as Dennis who are, atthe same time, group isolates and, for multiplereasons, consigned to the lower strata of cancerpatient society are unlikely to feel ‘at home’ in acancer hospital.

Unlike Isaksen and Gjengedal (2000), our princi-pal aim is not to produce recommendations forhealthcare staff, but we do feel that the supportivework undertaken by patients/visitors in hospitalshould be explicitly acknowledged by staff andresearchers. In particular, the role of visitors insupportive interaction has remained largely invisibleup until this point. This form of support maybecome increasingly important as hospital staffconcentrate their attention on the intervention-based fight against cancer, and patient throughput.Acknowledgement of this phenomenon might leadto recognition of ‘group isolates’ and others notembraced by the informal support system; some ofthese patients may have psychosocial difficultiesthat can be addressed by more formal means.In addition, it should be acknowledged that, asnoted by Moynihan (1987), patients may bedeprived of peer support outside hospital; thiscould place strain on relationships with carers andother close associates. Within the supportive settingof the hospital, post-discharge needs may gounrecognised (Wilson et al., 2002); the data reportedhere underline the need for ongoing support forcancer patients and their carers following dischargefrom hospital.

Acknowledgements

We wish to tank GUS Charitable Trust forfunding the study on which this paper is based.We would also like to thank all the patients andcarers who participated.


References

Albrecht, G. L., Walker, V. G., & Levy, J. A. (1982). Social

distance from the stigmatized: A test of two theories. Social

Science and Medicine, 16, 1319–1327.

Atkinson, P. (1992). The ethnography of a medical setting:

Reading, writing and rhetoric. Qualitative Health Research,

2(4), 451–474.

Bottomley, A. (1998). Group cognitive behaviour therapy

with cancer patients: The views of women participants on a

short-term intervention. European Journal of Cancer Care, 7,

23–30.

Chapple, A., Ziebland, S., & McPherson, A. (2004). Stigma,

shame, and blame experienced by patients with lung cancer: A

qualitative study. British Medical Journal, 328, 1470–1474.

van Gennep, A. (1960). Rites of passage. Chicago: University of

Chicago Press.

Gerhardt, U. (1989). Ideas about illness: An intellectual and

political history of medical sociology. Basingstoke: Macmillan.

Glaser, B. (1978). Theoretical sensitivity. San Francisco, CA:

Sociology Press.

Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded

theory. Chicago: Aldine Publishing.

Goffman, E. (1963). Stigma: Notes on the management of spoiled

identity. Harmondsworth: Penguin Books.

Gray, R. E., Fitch, M., Davis, C., & Phillips, C. (1997).

Interviews with men with prostate cancer about their self-

help group experience. Journal of Palliative Care, 13(1),

15–21.

Hammersley, M., & Atkinson, P. (1983). Ethnography: Principles

in practice. London: Routledge.

Isaksen, A. S., & Gjengedal, E. (2000). The significance of fellow

patients for the patient with cancer: What can nurses do?

Cancer Nursing, 23(5), 382–391.

Joffe, H. (2002). Social representations and health psychology.

Social Science Information, 41(4), 559–580.

Lazarus, R. (1966). Psychological stress and the coping process.

New York: McGraw Hill.

Little, M., Jordens, C. F. C., Paul, K., Montgomery, K., &

Philipson, B. (1998). Liminality: A major category of the

experience of cancer illness. Social Science & Medicine, 47(10),

1485–1494.

Lofland, J. (1980). Early Goffman: style, structure, substance,

soul. In J. Ditton (Ed.), The view from Goffman (pp. 24–51).

London: Macmillan Press.

Mathews, H. F. (2000). Negotiating cultural consensus in a breast

cancer self-help group. Medical Anthropology Quarterly,

14(3), 394–413.

Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis:

An expanded sourcebook (2nd ed). Thousand Oaks, CA: Sage.

Morse, J. M. (1989). Strategies in sampling. In J. M. Morse (Ed.),

Qualitative nursing research: A contemporary dialogue. Rock-

ville, MD: Aspen.

Moynihan, C. (1987). Testicular cancer: The psychosocial

problems of patients and their relatives. Cancer Surveys,

6(3), 477–510.

Rankin, N., Williams, P., Davis, C., & Girgis, A. (2004). The use

and acceptability of a one-to-one peer support program for

Australian women with early breast cancer. Patient Education

and Counseling, 53(2), 141–146.

Rosman, S. (2004). Cancer and stigma: Experience of patients

with chemotherapy-induced alopecia. Patient Education and

Counseling, 52, 333–339.

Schofield, M. (1991). The Stoic idea of the city. Cambridge:

Cambridge University Press.

Sontag, S. (1978). Illness as metaphor. Harmondsworth: Penguin

Books.

Strauss, A., Fagerhaugh, S., Suczek, B., & Weiner, C. (1985).

Social organization of medical work. London: University of

Chicago Press.

Strauss, A. L., & Glaser, B. G. (1970). Anguish: A case history of

a dying trajectory. Mill Valley, CA: Sociology Press.

The, A.-M. (2002). Palliative care and communication: Experi-

ences in the clinic. Buckingham, UK: Open University Press.

Tritter, J. Q., & Calnan, M. (2002). Cancer as a chronic illness?

Reconsidering categorization and exploring experience. Eur-

opean Journal of Cancer Care, 11, 161–165.

Waskul, D. D., & van der Riet, P. (2002). The abject embodiment

of cancer patients: Dignity, selfhood, and the grotesque body.

Symbolic Interaction, 25(4), 487–513.

Wilson, K., Pateman, B., Beaver, K., & Luker, K. A. (2002).

Patient and carer needs following a cancer-related hospital

admission: The importance of referral to the district nursing

service. Journal of Advanced Nursing, 38(3), 245–253.

Documents

At home in hospital? Interaction and stigma in people affected by cancer