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

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<ul><li><p>baelp</p><p>Sof</p><p>Unive</p><p>ssionc Institute of Health and Community Studies, Royal London House, Bournemouth University, Christchurch Road, Bournemouth, UK</p><p>rights reserved.</p><p>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).</p><p>1090-3801/$32 2005 European Federation of Chapters of the International Association for the Study of Pain. Published by Elsevier Ltd. All rights</p><p>* Corresponding author. Tel: +44 2380 597983; fax: +44 2380597900.</p><p>E-mail address: (J. Walker).</p><p>European Journal of Painreserved.Keywords: Chronic back pain; Loss; Grief; Interviews; Qualitative research</p><p>1. Introduction</p><p>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-</p><p>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</p><p>Abstract</p><p>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</p><p>Jan Walker a,*, Beatricea Faculty of Medicine, Health and Life Sciences, Building 67,</p><p>b Clinical Research Centre for Health Profedoi:10.1016/j.ejpain.2005.03.007ck pain: Accounts of lossfrom pain clinics</p><p>aer b, Immy Holloway c</p><p>rsity of Southampton, Higheld, Southampton SO17 1BJ, UK</p><p>s, University of Brighton, East Sussex, UK</p><p></p><p>10 (2006) 199207</p></li><li><p>pact of living with chronic neuropathic pain, though theauthors focused their conclusions on pain coping strate-</p><p>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).</p><p>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</p><p>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-</p><p>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.</p><p>2. Method</p><p>2.1. Design</p><p>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-</p><p>l of Pain 10 (2006) 199207medical help-seeking.</p></li><li><p> Loss of identity. Loss of hope.</p><p>ourna2.2. Sample</p><p>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.</p><p>2.3. Procedure</p><p>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.</p><p>2.4. Data analysis</p><p>The contents of the transcripts were listened to and</p><p>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.</p><p>3.1. Loss of abilities and roles</p><p>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.</p><p>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.</p><p>3. Findings</p><p>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:</p><p> Loss of abilities and roles. Employment-related losses. Financial and related losses. Relationship losses.</p><p>l of Pain 10 (2006) 199207 201unskilled worker aged 38, said I get so frustrated</p></li><li><p>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 d...</p></li></ul>


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