The experience of chronic back pain: Accounts of loss in those seeking help from pain clinics

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    ssionc Institute of Health and Community Studies, Royal London House, Bournemouth University, Christchurch Road, Bournemouth, UK

    rights reserved.

    1995; Thomas et al., 1999). Those attending pain clinicshave often undergone a range of failed treatments forback pain and have high levels of psychological distress(Walker et al., 1999).

    1090-3801/$32 2005 European Federation of Chapters of the International Association for the Study of Pain. Published by Elsevier Ltd. All rights

    * Corresponding author. Tel: +44 2380 597983; fax: +44 2380597900.

    E-mail address: j.m.walker@soton.ac.uk (J. Walker).

    European Journal of Painreserved.Keywords: Chronic back pain; Loss; Grief; Interviews; Qualitative research

    1. Introduction

    Chronic back pain has been identied as a costlyproblem for society and one of the most common rea-sons for seeking help from pain clinics (Ehrlich, 2003).Thomas et al. (1999) identied that disabling symptomspersisted in 30% of episodes of acute back pain. Epide-

    miological studies have identied a number of socio-demographic variables associated with chronicity,including age and employment status (Elliott et al.,1999). In addition to general health, physical activityand biomechanical factors, premorbid predictors ofrecurrent back pain episodes and poor outcomes havebeen found to include higher levels of psychological dis-tress and dissatisfaction with employment (Croft et al.,Received 9 November 2004; accepted 14 March 2005Available online 18 April 2005

    Abstract

    Background: This study responded to the need for greater understanding of the experiences that help to shape the worldviews ofchronic back patients as they seek help from pain clinics.Aim: To elaborate on the lived experience of chronic back pain in those actively seeking help from pain clinics.Methods: This was a qualitative study, based on an interpretative phenomenological approach. As part of in-depth interviews, par-ticipants were invited to tell their story from the time their pain began. Participants were twelve male and eight female patients, allof whom were diagnosed as having chronic benign back pain and had recently attended one of two pain clinics as new referrals. Thedata were analysed thematically.Findings: Loss was one of ve major themes to emerge. The narrative accounts revealed a catalogue of socio-economic and othermaterial losses including loss of physical and mental abilities, occupational and social activities, job or role. In those of working age,these led to nancial hardship and changes in interpersonal relationships, culminating in loss of self-worth, future and hope.Conclusions: The ndings suggest that material losses, as well as perceptions of loss, are prominent issues for those of working ageseeking help from pain clinics for chronic back pain, and may need to be acknowledged and addressed as part of therapeutic inter-ventions. The possibility of age-related dierences in pain-related loss may be worthy of further investigation. 2005 European Federation of Chapters of the International Association for the Study of Pain. Published by Elsevier Ltd. AllThe experience of chronicin those seeking h

    Jan Walker a,*, Beatricea Faculty of Medicine, Health and Life Sciences, Building 67,

    b Clinical Research Centre for Health Profedoi:10.1016/j.ejpain.2005.03.007ck pain: Accounts of lossfrom pain clinics

    aer b, Immy Holloway c

    rsity of Southampton, Higheld, Southampton SO17 1BJ, UK

    s, University of Brighton, East Sussex, UK

    www.EuropeanJournalPain.com

    10 (2006) 199207

  • pact of living with chronic neuropathic pain, though theauthors focused their conclusions on pain coping strate-

    ournaConceptual models of chronic pain have identied acycle of pain, stress, life and work interference, and emo-tional change that leave unanswered the chicken-and-egg question about which comes rst (Gatchel, 1996).Biopsychosocial and diathesis-stress models of chronicpain have identied pain appraisals as important deter-minants of responses to pain (Gatchel, 1996; Turk,2002). According to Lazarus and Folkman (1984), ap-praisal is an interactive process dependent on the beliefsand attitudes of the appraiser and the object of apprai-sal. This has prompted psychologists to search forpersonal vulnerability factors that predict negative re-sponses to persistent pain and poor treatment outcomes(Dworkin and Banks, 1999; Vlaeyen and Linton, 2000).These predispositions include personality traits, atti-tudes, beliefs, aects and behaviours (Weisberg andKeefe, 1999; Tait, 1999) which have tended to challengethe moral character of those with chronic back pain(May et al., 1999). Most notable of the characteristicscurrently associated with back pain are fear-avoidancebeliefs and pain catastrophising (Turk, 2002). A recentsystematic review by Pincus et al. (2002) conrmed therole of psychological distress in chronic back pain buthighlighted the need for further research into the roleof psychosocial factors in its progression. Some authorshave long argued that such research needs to take moreaccount of the social context of chronic pain patientslives (Roy, 1992; Miller and Omarzu, 1998; Morse,1998), including problems associated with secondaryloss (Gatchel et al., 2002).

    A number of authors (Price, 1996; Baszanger, 1997;Smith et al., 1997) have advocated the use of qualitativeinquiry to elucidate the subjective experience of pain.This approach has been recognised as particularly usefulin providing important information about the sociocul-tural context of a problem (Yardley, 1997; Mathiesonand Barrie, 1998). However, limited qualitative studyof the subjective experience of chronic back pain has ta-ken place. The important observations of Roy (1992,2001, 2004) are based entirely on individual case studies.Borkan et al. (1995) used a combination of focus group,participant observation and interviews to explore thenature of back pain, associated limitations, coping strat-egies and treatment evaluations. However, their commu-nity-based sample was not recruited on the basis of painduration or intensity and few appeared to have the com-plex pain histories commonly found in those activelyseeking help from pain clinics. Osborne (1995) and Os-borne and Smith (1998) reported on a qualitative studyof nine women of working age attending a pain clinicand assessed as having inappropriate pain behaviours.Interviews appear to have taken place in the clinic set-ting and the phenomenological analysis focused on psy-chological processes of adjustment; emergent themesincluded searching for an explanation, comparing this

    200 J. Walker et al. / European Jself with other selves, not being believed and with-gies rather than contextual inuences on adjustment.The present study was designed to provide a more de-

    tailed understanding of the lived experience of chronicback pain prior to seeking help from pain clinics. Weidentied ve themes: the pain takes over (Hollowayet al., 2001) in which participants related how back paingradually took a hold over their lives; in the system(Walker et al., 1999) which illustrated how participantswere rendered passive and helpless by medical, socialsecurity and legal systems; sense of loss which is thesubject of this paper; they dont understand, which fo-cuses on issues related to social judgement; and comingto terms, which examines the process of adjustment (orlack of it) to living with pain. In this article, we focusspecically on the theme of loss. We also give some con-sideration to issues that appear to inuence the ability ofparticipants to come to terms with their situation.

    2. Method

    2.1. Design

    The study used an interpretative phenomenologicalapproach (IPA) (Smith, 1996), based on single narrativeinterviews. IPA is concerned with the ways in whichindividuals make sense and talk about issues related tohealth and illness (Smith et al., 1997). It is phenomeno-logical in its concern with individual perception ofevents, and interpretative in its recognition of the centralrole of the researcher(s) in trying to make sense of theparticipants reports of their personal and social worlds(Smith, 2004). Our aim was to understand the partici-pants lived experience of pain up to the point of newreferral to a pain clinic. This ensured that participantswere at similar points in their pain careers in terms ofdrawing from others. Little information is forthcomingabout the home lives or socio-economic circumstancesof the participants. Seers and Friedli (1996) presentedqualitative information gathered during semi-structuredhome interviews as part of an intervention study ofrelaxation training for chronic pain. They identiedthemes clearly worthy of more detailed exploration,including relationships, activities, employment andlack of personal control. Bendelow and Williams(1996) reported on ndings from short semi-structuredinterviews that took place in a pain clinic followingtreatment. Their ndings focused predominantly onthe experience of pain treatment, but they also recordedthe presence of life disruptions that threatened to over-whelm some of the interviewees and urged further qual-itative research in this area. More recently, Henwoodand Ellis (2004) conducted focus groups to elicit the im-

    l of Pain 10 (2006) 199207medical help-seeking.

  • Loss of identity. Loss of hope.

    ourna2.2. Sample

    The sample consisted of 12 male and 8 female patientswho had recently been assessed as new referrals at one oftwo pain clinics in the South of England and had a con-rmed diagnosis of chronic benign back pain. The aimof recruitment was to sample a diverse range of ideasand experiences. Initially, patients were selected consecu-tively butwere later sampled purposively to ensure a fairlyheterogeneous mix of experiences according to gender,age, duration of pain, and social background as judgedby former occupation (only one was currently working)and home address. Out of 23 people approached, two de-clined to be interviewed and one withdrew on telephonecontact, citing family illness. Participants appeared fairlytypical of referrals in the two chosen localities; all wereBritish and white, and all but two participants referredto themselves as of working age. Their ages ranged from28 to 79 years, median 56 years, and included two overthe retirement age of 65 years. The median duration ofpain was eight years with a range of two to fty years(one older participant had a long-standing back painproblem that had recentlyworsened).All had experienceda variety of treatments for back pain prior to this referralto pain clinic.

    2.3. Procedure

    Following ethical approval, eligible patients attend-ing the pain clinics were provided with verbal and writ-ten information about the study. Having receivedwritten consent, the researchers contacted participantsby telephone, consent was reconrmed, and an appoint-ment made to conduct audiotaped interviews in the par-ticipants own homes. This enabled them to feel morerelaxed and in control, and provided the researcherswith the opportunity to observe and record eld notesabout their home surroundings. The interviews lastedbetween one and a half and three hours. Following thetradition of Kleinman (1988), a narrative approach todata collection was used in which participants were in-vited to tell their story of back pain from the time thepain started to the present day. This encouraged freereection and sought to eliminate biases that might beintroduced into the data through the use of an interviewguide, as in a semi-structured interview. Where appro-priate, participants were encouraged to elaborate onsalient feelings or issues expressed. If specic questionsarose from the interviewee or interviewer, these were de-ferred until the end of the interview to avoid inuencingthe data.

    2.4. Data analysis

    The contents of the transcripts were listened to and

    J. Walker et al. / European Jread through several times in order to capture a fullIn accordance with an accepted convention in quali-tative research, each sub-theme is supported by directquotations and considered with reference to the extantliterature. There then follows a general discussion onsome of the theoretical and practical implications ofthe ndings.

    3.1. Loss of abilities and roles

    Loss of physical ability was evident in the stories ofall participants and several openly wept as they spokeof the physical restrictions on their lives. An extremeexample was Geo, a former university lecturer aged56, who had spent most of the last four years in bed.All participants referred to their inability to undertakeessential activities of living and home maintenance,which now required reliance on others. Peter, a formerimpression of the data. Then chunks of text were ex-tracted that conveyed meaning freely attached by partic-ipants to the events or situations encountered duringtheir pain histories (Kvale, 1996). These were repeatedlysorted as commonalities of meaning emerged and werethen grouped into broader categories of meaning untilsubstantive main themes were identied. At this point,an experienced qualitative researcher who had no previ-ous experience of pain research and was not involved inthe data collection, assisted in verifying that the chunksof text extracted were consistent with the narrative con-tent, and that the themes nally selected robustly repre-sented the data available in the transcripts.

    In presenting the theme of loss, direct quotations areintegrated with descriptive accounts to illustrate narra-tive sub-themes and provide an audit trail that linksthe data with our interpretation of it. Pseudonyms areused to illustrate the range of experiences represented.

    3. Findings

    Loss emerged as a continuous thread throughoutmost participants stories. The term loss is used in thiscontext to refer to life events or changes that resulted inthe participants being or feeling deprived of somethingthey valued (Miller and Omarzu, 1998). The ndingsillustrate how material changes accumulated and led tooverwhelming perceptions of loss. The ndings aregrouped into the following sub-themes:

    Loss of abilities and roles. Employment-related losses. Financial and related losses. Relationship losses.

    l of Pain 10 (2006) 199207 201unskilled worker aged 38, said I get so frustrated

  • ournasometimes I have broken down and cried because I canteven drill, I cant decorate, I cant do anything. Limita-tions in physical role has been identied as the qualityof life domain most aected among those attending painclinics (Lame et al., 2005). Carol, aged 38, was a work-ing wife and mother when she hurt her back but her hus-band now undertook most household and child careactivities in addition to his own work, which made herfeel dreadful. Mike, 56, still managed to work occasion-ally as a supply teacher, but felt he was really living ohis girlfriend (a physiotherapist). Gottlieb (1985) identi-ed reciprocity as the foundation of support networks,and we observed that perceived loss of ability to recipro-cate help provided by family and friends appeared tohave a damaging eect on the self-worth of participants.

    Some complained that pain had aected their mentalas well as their physical abilities. For example, Regclaimed that lack of concentration prevented him fromtaking a desk job while Geo blamed it for interruptinghis writing career. Roy (2004) identied loss of cherishedactivities and roles as a major source of inner turmoilfollowing disability, while Sparks (1996) wrote of hispersonal inability to accept the premature end of hisrst-class sporting career because of back pain. Simi-larly, Reg, an unskilled worker aged 53, missed ridinghis motorbike so much that he kept it parked besidehis bed. Lost activities for our participants includedwalking, going to the theatre, out for a meal, drivingor travelling more than a short distance by car or publictransport, playing with children or grandchildren, andgoing on holiday. As a result, most participants reportedlives that were socially and environmentally restricted.Eileen, a former services entertainment ocer, aged62, commented: it [the pain] destroyed my life, its de-stroyed my husbands and my daughter. Wed planned somuch the things we wanted to do when he retired. We

    planned to go to Australia but we cant do that now be-cause I cant sit in the car even for half an hour.

    Thompson (1998) noted that loss robs life of meaningwhen highly desired goals become no longer attainable.The goals of our participants appeared to reect age-re-lated norms which they were reluctant to relinquish.Whereas those of working age expected to be active,the two older participants appeared to accept physicallimitations and lack of sleep as a natural consequenceof the ageing process: Im getting on and its somethingthat you get as you get older (Edna, aged 74); you justhave to make the best of a bad job (Beryl, aged 79).These comments appear typical of the attitudes of olderpeople suering from common place pains (Becker,1999).

    3.2. Employment-related losses

    Loss of job, following one prolonged or several short

    202 J. Walker et al. / European Jperiods of sick leave for pain and pain-related disabilityhas long been recognised as typical of those attendingpain clinics (Crook and Tunks, 1985). Job loss was re-ported by all of the participants of working age and ap-peared to rank high in terms of life disruption because ofits domino eect in precipitating other losses. Sense ofloss was exacerbated by a lack of understanding or sym-pathy on the part of employers. Steve, aged 44, hadworked all his life for the same company repairing pub-lic telephones. When he tried to return to work after ayear of treatment for back pain, the rm put pressureon him to volunteer to leave. They took away hisvan, complete with tools and personal eects, then chan-ged his job description requiring him to service junctionboxes and overhead cables. He nally gave in when hewas transferred to a depot 35 miles from home. Occupa-tional rehabilitation programmes have been shown to beassociated with faster return to work (Karjalainen et al.,2000). The availability of light duties appears importantin assisting return to work (Fransen et al., 2002), andperceived lack of support at work has been identiedas hindering recovery (Hoogendoorn et al., 2000; Mar-hold et al., 2002). Yet none of our participants reportedreceiving any kind of work-based assessment or supportfollowing the onset of back pain. Laura, aged 56, whohad worked as a fraud ocer for the benets agency,commented in the Civic Service youre just a numberreally. Sue, aged 28, injured her back while workingas a nurse in the UK National Health Service: I wasa career person, it was never my intention to get marriedand have children. I loved my job . . . I was devastated.When she eventually attended a meeting to considerher industrial injury claim: My manager sat down andasked how I was. I said I want it noted that this is the rsttime you have enquired after my health in two years. I feltbitter about that. . . . This is supposed to be a caring pro-fession, but they dont care for their sta. Job dissatis-faction has been identied as an important factor inthe development of chronicity in back pain (Thomas etal., 1999; Truchon and Fillion, 2000). Our ndings sug-gest the necessity to dierentiate between satisfactionwith work prior to and following the onset of persistentback pain.

    Return to work is an important indicator of success-ful treatment outcome (Van Tulder et al., 2001) and hasbeen described as the primary goal for rehabilitation(Kool et al., 2002). Chronic back pain patients seem tohave earned a reputation for being work-shy, but theseparticipants reported vigorous attempts to return tosome kind of paid employment, and several claimed tohave lied about their health status to obtain part-timejobs to earn money and maintain independence. The fol-lowing accounts were fairly typical of those employed inmanual work: Ive had a variety of jobs from securitybus driver to making milk cartons, but its always endedup where Ive had to take a lot of time o of work because

    l of Pain 10 (2006) 199207of the pain . . . Ive never told the employers Ive had a

  • a for sale board outside. He observed: Ive been o sickso long weve used all our savings, virtually nothing left,

    J. Walker et al. / European Journathats why were moving downwards, putting a few thou-sand pounds in the bank. Bill, aged 42, lost a well-paidjob as a scaolder following an accident. Until then,he had supported his wife, two children and mortgageand was taking sailing lessons with a view to sailingthe Atlantic: There is so many ways lifes changed. Wellthe obvious one, we used to have a three-storey townhouse, a nice pine kitchen, tted carpets everywhere,now were in a council place with untted carpets andnot very nice furniture. Roy (2001) described a similarcase of descent into poverty and social dislocation, whileBendelow and Williams (1996) identied material disad-vantage as a contributing factor to the desperation andhopelessness experienced by some of their participants,particularly the men. In our study, both interviewersnoted the phenomenon of the sagging sofa which ap-peared to sum up the impecunious state of many ofthe homes visited. Bill spoke emotionally of the guilthe experienced at having to rely on hand-me-downs orbuy second-hand clothes for his children. Steve reportedhe was unable even to aord the prescription charges forback injury or Ive had a back operation because youwould never get a job and I had to have a job because

    the money was not there. (Peter). Im afraid theemployers arent tolerant of the amount of time that I haveto have o. I would use my holidays rather than lose my

    job . . . I gave away my holidays, my [time o in] lieu,overtime, and at the end of the day they just said sorry,thats it. . . . the ideal job I need is 10 minutes standingup, 10 minutes sitting down, 10 minutes walking aboutand 10 minutes lying down not too many jobs around

    like that (Reg). Only Judith, a laboratory technicianaged 54, had regained full-time work, but this involveddeceiving her current employer and was at the expenseof obtaining reasonable compensation for breach ofhealth and safety regulations by her former employer.Eileen and John, both in their early 60s but past theage at which many people choose to retire, expressedguilt and resentment at their inability to maintain ajob. It appeared that their expectations were frozen intime at the point, some years ago, when pain had robbedthem of the choice to work.

    3.3. Financial and related losses

    Financial loss is a well-documented and inevitableconsequence of job loss (Pearlin, 1989) and chronic pain(Kemler, 2002) and produces a cascade of stressful eco-nomic life events (Price et al., 1998). This led many ofour participants to speak of having lost everything.John, a former army ocer and dental technician aged60, lived with his wife in a smart detached house withhis painkillers.Several participants had applications for statutorysupport rejected, thus reinforcing their sense of loss.When Bill was no longer able keep up the mortgagerepayments on his home, he unwittingly rendered him-self intentionally homeless and thereby failed to qualifyfor assistance with housing. When Mike applied formobility allowance he was asked, as part of his assess-ment, to walk down the road. He achieved this in spiteof excruciating pain and thereby had his application re-jected. Of the two older participants, Beryl was in receiptof an attendance allowance, but Edna had her applica-tion turned down. However, unlike those of workingage, neither of these oldest participants complained ofeconomic loss or hardship as a direct result of their pain.

    3.4. Relationship losses

    Disruption of conjugal relationships emerged as a keyaspect of loss, as in previous studies (Osborne, 1995;Kelley, 1998; Smith, 2003; Roy, 2004). Bill reported thathis marriage was on the brink of collapse due to nan-cial strain and loss of their home. Irritability, moodswings, the need to be alone with suering, and loss oftrust in a partner were all cited as reasons for maritalstrain and breakdown. Colin, aged 46, related: my wifeeven turned on me, thinking it was all put on. She cameinto the bedroom one morning to nd me at on the oor,unable to move, and she naturally assumed that I wasputting it on. From that point on Ive just lived on myown. Reg described similar experiences with two ex-wives and now lived alone. Carols sex life had sueredbecause her husband was terried of touching her backfor fear of making it worse. Sue had set up home withher boyfriend but had since come to accept that theirrelationship could never be the same. She now stayedat home while he went o skiing and playing sportand was lled with dread about what would happenin the future. Friendship and support networks also suf-fered as a result of enforced disengagement from workand social activities outside the home. Sue commentedthat many former friends and work colleagues had de-serted her since she became disabled: You learn a lotabout people. You nd out who you can trust and who

    you cant and how people treat you. The two older par-ticipants, Beryl and Edna, were both widowed and reliedon their ospring to do housework and shopping. How-ever, this had actually served to maintain or even in-crease their level of family contact.

    3.5. Loss of identity

    Those of working age all drew a distinction betweentheir public and private selves. Pain is not visible to oth-ers and participants agonised about what others mustthink of them. If they looked normal they were afraid

    l of Pain 10 (2006) 199207 203of being branded a fake (Holloway, 1994). For example,

  • crossed the road to avoid her. She observed: what it

    the stories seems to refute this explanation.Participants stories were lled with thoughts that

    ournacomes down to is self-worth, because your condence com-pletely goes. . . . Once that circle starts, it is just a down-ward spiral. It is very, very hard to come out of that. . . . Iam still the same person, but people dont see that.

    3.6. Loss of hope

    All of our participants spoke about their inability tomake plans, having to live from day to day, uncertainwhat the future might bring. Consistent with the currentliterature on fear-avoidance (Goubert et al. (2004), mostof those of working age lived in constant fear of furtherinjury, like Carol: Im petried that a disc is going to popout again. Nevertheless, participants had some gooddays interspersed with the bad days; but as John put ityou dont have a good day until its gone and then youknow that was a good day. Eileen commented: painis like a bereavement . . . its taken over my life, really ithas. Roy (1992) proposed that the crisis that bringsmany people to the pain clinic is the realisation that thisis the last resort, beyond which lies vulnerability to morefamily crises, disintegration, hopelessness and helpless-ness. Mikes appraisal of his situation reects whatFrank (1995, p. 54) described as being shipwreckedby the storm of disease.

    I just think Im going to get worse and worse and worseand eventually end up in a wheelchair, probably. You

    always have hope in the beginning, dont you? The olderyou get, the smaller the ray of hope becomes. Every dayStan, a former security guard aged 58, had been wronglyreported by neighbours for obtaining state benets un-der false pretences. In contrast, Carol tried to put on abrave face in public to boost her own self-condenceIf I can convince other people that I can carry on, Ican even convince myself . . . but when I am on my own,it is harder. Previous authors (Osborne and Smith,1998) noted that downward comparisons help to pro-mote positive well-being, and Reg claimed to havestopped feeling so sorry for himself after seeing peopleworse o in a unit for the physically disabled. But othersappeared to have completely lost their sense of self-esteem. Bill commented I really dislike myself as a per-son because of what the back pain and everythings done tome. This feeling of not being who I was is echoed instudies by Kelley (1998) and Risdon et al. (2003). Os-borne and Smith (1998) suggested that a sense of loss re-sults from comparing self with former self-image andwith social norms. Our ndings suggest that perceivedlosses are exacerbated by the responses or anticipatedresponses of other people. For example, Steve spokeof feeling the gaze of other bus passengers when hefailed to give up his seat to a pregnant women. Sue toldhow a former friend and colleague had deliberately

    204 J. Walker et al. / European JI go through, in some way or another, a bit of hell . . .may be conceptualised as catastrophizing. Catastro-phizing is dened as excessive and exaggerated pain be-liefs (Tait, 1999) associated with a tendency to magnifypain threat, worry excessively about the pain or hold anunduly pessimistic view of the ability to deal with thepain (Sullivan et al., 1995; Boothby et al., 1999; VanDamme et al., 2002). Catastrophizing is closely associ-ated with social as well as psychological functioning(Lame et al., 2005) and is widely regarded as playing acrucial role in predicting negative therapeutic outcomes(Sullivan et al., 2001; Severijns et al., 2001; Turner et al.,2002; Turk, 2002). It has been variously dened as a per-sonality trait (Spanos et al., 1979), maladaptive copingstrategy (Rosenstiel and Keefe, 1983; Nettleton, 1995)or appraisal process (Stewart et al., 2001). Cognitive-based therapies for pain (Thorn et al., 2002) are basedthe assumption that these pessimistic beliefs are a resultYoure stuck at home, you become a prisoner in yourown home. Your life is the pain is your cell

    Of those interviewed, only three showed signs of com-ing to terms with their situation. The two oldest partic-ipants, Edna and Beryl, appeared to accept pain as aninevitable consequence of growing old (cf Becker,1999). The other was the youngest participant, Sue.From an objective viewpoint, Sues pain was the mostdisabling. However, she had a conrmed diagnosis(arachnoiditis), good support from family and friends,and attributed her positive outlook to the support andencouragement received from a complementary therapycentre since the pain clinic appointment was made. Suehad recently given an invited lecture on back care to stu-dent nurses and was now planning a career change toaccommodate her changed circumstances.

    4. Discussion

    The stories told by our participants speak of a cata-logue of socio-economic and other material and psycho-logical losses attributed directly to back pain. However,whereas the life changes reported were veriable facts,loss is a perception. Traditional theories of loss (Dwor-kin and Banks, 1999; Nettleton, 1995) have emphasisedpsychological vulnerability factors in determining re-sponses to threatening life events such as pain (see alsoPincus and Morley, 2001; Gatchel et al., 2002). There-fore, in reviewing our ndings, we need to consider thepossibility that back pain may have become the focusof a storied explanation for job loss, marital break-up,nancial ruin, personal failures and unfullled hopes,designed to excuse personal inadequacy and justify theneed for help. However, the remarkable consistency of

    l of Pain 10 (2006) 199207of cognitive distortion (Beck, 1976). Pincus and Morley

  • We did not have ethical approval to evaluate any eectsof the narrative interviews, although most participants

    ournal of Pain 10 (2006) 199207 205(2001) propose that negative cognitive bias and feelingsof worthlessness may be a result from a particular typeof enmeshment of three schemas: pain, illness and theself. They suggest that pre-existing vulnerability in theself-schema may, in combination with the pain schema,lead to dependence and distress. Equally, the stories toldby our participants suggest that the negative materialand social consequences of back pain may be sucientto generate feelings of worthlessness and hopelessnesseven where no latent personal vulnerability existed priorto the onset of pain. In this, our ndings lend support tothe assertions of Gatchel et al. (2002) that negative cog-nitions such as catastophizing may in fact represent real-istic appraisals of tangible losses experienced as a directconsequence of having back pain.

    Drawing on the work of John Bowlby, Roy (1992,2004) has conceptualised responses to pain-related lossesas grief. Responses identied as typical of grief wereclearly evident in the narratives of all participants ofworking age. These included distress, sorrow, despair,fear, worry, anger, loss of enjoyment, feeling alone,reduction in activity, feelings of failure, worthlessness,loss of purpose, diculty in maintaining social relation-ships, pessimism, yearning, rumination, slowed think-ing, fatigue, insomnia, and loss of muscle strength(Stroebe and Stroebe, 1987). But these grief responsesare easily confounded with symptoms of chronic pain,just as symptoms of chronic pain are confounded withthose of depression (Pincus and Williams, 1999; Black-burn-Munro and Blackburn-Munro, 2002). Thus pain,loss and depression become virtually indistinguishable.Traditional stage theories of grief (Kubler-Ross, 1969;Parkes, 1975), based on observations of responses to ac-tual or impending death, postulate progression towardsacceptance or restitution. In contrast, Hewisons Epi-sodic Stress Model (Hewison, 1997), based on stressand coping theory (Lazarus and Folkman, 1984), recog-nises the recurrent and cumulative hassles and crises thatprevent those living with loss of ability from achievingresolution or acceptance.

    Most of the stories heard in this study were chaoticand despairing, revealing a plot that imagines a lifenever getting better (Frank, 1995, p. 97). Biographicaldisruption (Bury, 1982) may provide a useful frameworkfor understanding the impact of pain-related losses. Ger-gen and Gergen (1997) described the personal biographyas providing an essential link between past, present andfuture, leading to a sense of coherence (Antonovsky,1985), while Kelley (1998, p. 207) suggested that comingto terms with the losses associated with chronic pain re-quires re-storying ones life. According to Crossley(2000) this involves re-interpreting factual events withina meaningful framework that provides a new trajectorytowards changed goals. Participants of working age inour study appeared stuck, looking back to how things

    J. Walker et al. / European Jused to be and forward to what will no longer be. Onlyexpressed gratitude that they had been listened to. Nev-ertheless, there is increasing evidence that narrative ther-apies may help to enable those with life-changingconditions to nd new meaning and purpose in theirlives (Ellis-Hill and Horn, 2000).

    Though modest in scale, our study used an interviewstyle designed to gather rich data and minimise social re-sponse bias. The analysis was strengthened by indepen-dent verication of the emergent themes by an unbiasedauthority on qualitative methods. Reference to the ex-tant literature conrms the validity of the main themes.However, it is an important criticism of the samplingprocess that potentially important age-related dier-ences in perceptions of loss were not identied until afterdata collection was completed. This would not have oc-curred had we used theoretical sampling (deliberateselection of participants to test emergent theory), asadvocated in grounded theory (Holloway, 1997). Thestories told by the two older participants in our studycontained accounts of material change which did not fo-cus on loss. Both were women with good family supportwhose narratives appear typical of those found in previ-ous studies of pain in later life, in which pain and dis-ability are accommodated as part of the ageing process(Becker, 1999; Walker, 1994). This explanation main-tains a sense of coherence and may oer a contributoryreason for age-related dierences in pain tolerance(Walker and Sofaer, 1998; Gibson and Helme, 2001).

    In conclusion, our ndings suggest that many studiesof chronic back pain have tended to focus too narrowlyon pain as the object of appraisal, and on self-referen-tial, rather than situational, explanations for cognitivebias. We recommend that it may be useful to evaluateways of helping those who hold catastrophizingthoughts to come to terms with tangible losses in prep-aration for pain management interventions aimed atgoal-setting, coping strategies and functional improve-ment. Our ndings tentatively suggest that future re-search into age-related dierences in pain experiencemight usefully focus on perceptions of loss and senseof coherence.

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    The experience of chronic back pain: Accounts of loss in those seeking help from pain clinicsIntroductionMethodDesignSampleProcedureData analysis

    FindingsLoss of abilities and rolesEmployment-related lossesFinancial and related lossesRelationship lossesLoss of identityLoss of hope

    DiscussionReferences

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