constructing the experience of chronic pain through discourse
TRANSCRIPT
Scandinavian Journal of Occupational Therapy. 2013; 20: 93–100
ORIGINAL ARTICLE
Constructing the experience of chronic pain through discourse
KATIE ROBINSON1, NORELEE KENNEDY2 & DOMINIC HARMON
1Department of Occupational Therapy, University of Limerick, Limerick, Ireland, 2Department of Physiotherapy,University of Limerick, Limerick, Ireland, and 3MidWestern Regional Hospital, Limerick, Ireland
AbstractThe aim of this study was to investigate the discourses used by people with chronic pain. Using qualitative interview data fromfive Irish people with a variety of chronic pain conditions, Foucauldian discourse analysis was undertaken to identify thediscourses in operation in participants’ accounts. Three discourses were identified: a moral discourse, a discourse of pain aspersonal tragedy, and a biomedical discourse. A moral discourse was used to construct participants as moral individualsexperiencing real pain who try to accomplish activities and fulfil social roles without burdening others. The discourse of chronicpain as personal tragedy describes the multiple negative consequences of chronic pain including activity, relationship, physical,financial, and emotional consequences, and changed expectations of the future. This discourse bolsters the moral discoursethrough rejecting any benefits associated with chronic pain. Participants rejected a biomedical discourse by proposing theirown explanatory models of pain, resisting psychosocial understandings of pain, criticizing medical professionals and healthcareservices, and challenging medical expertise, professionalism, and power. These practices allow participants to reject the patientsubject-position with its attendant passivity and requirements for adherence and compliance.
Key words: occupational therapy, discourse analysis, chronic pain
Introduction
Chronic pain is a major international healthcare prob-lem; nearly one in five adult Europeans (1) and over50 million Americans live with chronic pain (2).Chronic pain is described as pain that persists beyondthe normal time of healing [ (3), p. 14].Amajor body of qualitative research within the social
sciences is available to inform occupational therapypractice with people with chronic pain (4,5). Thesestudies have revealed the contested nature of manychronic pain diagnoses (6), the multiple losses (7,8),and the suffering experienced by people with chronicpain (9). In 2003 Neville-Jan noted that the availableoccupational therapy literatureplaced little emphasis onhow the person with pain performs and participates inoccupations and how such participation is experienced(10). Since then a growing body of research hasexplored the complex relationship between occupation
and chronic pain (11–17). These studies havehighlighted the vast occupational consequences ofchronic pain. However, these studies are primarilysituated within an interpretive perspective and seek tounderstand the individuals’ subjective experience. Incontrast, a social constructionist approach is concernedwith how experience is constructed by culturally avail-able discourses. A constructivist approach does notdiminish the authenticity of the individuals’ experience;rather it proposes that experience itself is an effect (18).
A social constructionist approach
Beginning with the seminal work of Berger andLuckmann (19) social constructionism is a sociolo-gical theory of knowledge which centres on the ideathat “the world we live in and our place in it are notsimply and evidently ‘there’ for participants. Rather,participants actively construct the world of everyday
Correspondence: Katie Robinson, MSc BSc (Curr. Occ.), University of Limerick, Occupational Therapy, HS2-024 Health Science Building, Limerick, Ireland.E-mail: [email protected]
(Received 26 October 2011; accepted 7 August 2012)
ISSN 1103-8128 print/ISSN 1651-2014 online � 2013 Informa HealthcareDOI: 10.3109/11038128.2012.720275
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life and its constituent elements” [ (20), p. 3]. Lan-guage is of critical concern to social constructionists,as language functions as a form of social action.Language can be viewed as structured into a numberof discourses. Parker defines a discourse as “a systemof statements which constructs an object” [ (21),p. 5]. Dominant discourses enjoy widespread accep-tance in the form of common sense and function tosustain prevailing power relationships (22). Discourseanalysis and in particular critical approaches to dis-course analysis are becoming more established as aresearch method in healthcare (23–25) and in occu-pational therapy (26). Michael Iwama has highlightedthe socially constructed nature of occupational ther-apy knowledge and the operation of meta-narrativeswithin occupational therapy (27).
Discourse and practice
A multiplicity of environmental and cultural factorsinfluencing occupation is acknowledged in theoreticalmodels of occupational therapy. However, occupa-tional therapy is founded on humanistic principlesand does not consider culture to influence occupa-tional performance to the extent proposed by socialconstructionists such as Foucault. A Foucauldianconcept of discourse is not purely a linguistic concept,for Foucault discourse is about both language andpractice (what one does) (28). Foucault emphasizedthat subjects are not constituted through discoursesalone but through practices which sustain and bolsterdiscourses: “It is not enough to say that the subject isconstituted in a symbolic system. It is not just in theplay of symbols that the subject is constituted. It isconstituted in real practices” [ (29), p. 369].
Material and methods
Design
This study aimed to identify the discourses used bypeoplewith chronic pain in describing their experiencesof living with chronic pain and to then consider theconsequences of these discourses for practice (whatpeople can do). Foucauldian discourse analysis was
used to analyse the interview data. This approach seeksto describe the discursive worlds people inhabit byidentifying the discourses in operation within particularaccounts (26,30). “Discourses both facilitate and limit,enable andconstrainwhat canbe said (bywhom,where,when)” [ (21), p. xiii]. Alongside identifying discoursesin operation, discourse analysis considers the implica-tions of particular discourses for individuals as dis-courses offer subject positions which when taken uphave implications for subjectivity and experience (30).
Participants
People were included in this study if they were:18 years of age or over, experiencing chronic pain,and had no significant hearing or speech impairment.Participants were approached at a weekly outpatientpain clinic at an Irish urban hospital and invited toparticipate in this study. The first five potential parti-cipants were given an information sheet informingthem of the study procedures and giving assurancesof confidentiality. Subsequently, all five expressedinterest in participating and were contacted by thefirst author and interviews were scheduled. Fourwomen and one man were recruited (see Table Ifor participant details).
Data collection
Data were obtained from in-depth lightly structuredinterviews. The light structure for the interviewsfocused on one theme: everyday life with chronicpain. Questions used by the interviewer includedasking for a descriptions of social, household, work,and leisure activities, and daily routines. In keepingwith recommendations within discourse analysisliterature the interviews are viewed as and carriedout as a conversational encounter, the same issuewas considered several times, and participants wereallowed to go off the topic (31). Each tape-recordedinterview lasted between one and a half and two hours.Ethical approval was obtained from the Research
Ethics Committee at the study site. In order to protectparticipant anonymity minimal identifying informa-tion has been reported and pseudonyms are used.
Table I. Description of participants.
Pseudonym Age Occupation DiagnosisLength of time living
with chronic pain (months)
Jack 78 Retired Rheumatoid arthritis 120
Geraldine 36 Part-time cleaner Back pain and/or fibromyalgia 120
Mary 25 Sick leave from care attendant job Slipping rib syndrome 48
Patricia 56 Not working Rheumatoid arthritis and spinal tuberculosis 84
Fran 34 Not working Rheumatoid arthritis 144
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Data analysis
Discourse analysis (DA) is an approach rather than afixed method (23) and a number of “types” ofdiscourse analysis exist (25). A six-stage approachto Foucauldian discourse analysis described by CarlaWillig (30) was used to analyse the transcribed inter-views. Stage one involved identifying the differentways in which the discursive object “the experienceof chronic pain” is constructed. The second stageinvolved identifying discourses that could account forthese references. This stage relied heavily on theauthor’s interpretations as they considered fromwhich historical, social, and cultural resources thesereferences originated. Stages three to six includedidentifying what is being achieved by the use of thesediscourses (30). The analysis and discussion pre-sented here emphasizes the relationship betweenthe identified discourses and practice. In consideringhow discourse is related to practice Willig (30) pro-poses that one should consider the ways in whichdiscourses and subject positions open up or closedown opportunities for action [ (30), p. 117]. Certainpractices or actions are legitimate forms of behaviourwithin particular discourses and function to furtherbolster the discourse. To ensure rigour a number ofevaluative criteria for the quality of DA work asdescribed by Taylor (32) and Crowe (33) havebeen adhered to throughout the research process.The data analysis process has been explicated andthe authors have attempted to provide support fortheir interpretations by providing rich detail from thetranscribed interviews. In the discussion the findingsare located in relation to previously published workthus supporting the wider existence of the identifieddiscourses. Throughout the research process theresearchers aimed to be aware of their positions ashealthcare professionals/researchers and the influencethis had on their reading of the text, through themaintenance of a reflective diary by the first author(KR), in keeping with calls from Finlay (34) that adiscourse analyst should be cognizant of and explicitabout her perspective and position in the process.
Results
Three discourses were identified in participants’accounts: a moral discourse, a discourse of pain aspersonal tragedy, and a biomedical discourse.
Moral discourse
Participants’ descriptions of themselves, the responseof others to them, the variability of their pain,and their own use of pain management techniqueswere identified as accounted for by a moral discourse
by the authors. The adjective “moral” is defined as“concerned with principles of right and wrongbehaviour” [ (35), p. 599]. Therefore, in using amoral discourse, participants are constructing them-selves as moral beings who are conducting themselvesin a correct manner. Immoral behaviour for peoplewith chronic pain includes malingering and exagge-rating or lying about pain in order to access potential“rewards” such as time off work, financial reward, orattention. Participants described themselves beforethe onset of pain as active people with high energylevels and the ability to cope with multiple demands:I mean I’ll give you an example of my energy or the
energy levels that I used to have right, eh, twenty-one years ago I had a son who died now before he diedbefore he died em he was in X hospital . . . and I hadmy daughter . . . was downstairs in Y ward he wasupstairs in Intensive Care, my mother was very sickand she was over in the Z Hospital . . . and I ran myhousehold . . . and I managed to do all that and findthe energy to do it. (Patricia)Participants presented lengthy descriptions of them-
selves as stoic in the face of pain and not complainingabout pain. In contrast to themselves as stoic, partici-pantsdescribedotherpeopleasnot stoic andnothavinga high pain tolerance. “Like my brother in law if hesneezed twice you know he was calling the undertakeryou know ‘I’mdying’” (Jack). Participants described anumber of responses from others including sympathy,being made to feel they are complaining, doubting,disinterest, and being watched. The response des-cribed inmost detail was doubt. Participants describeddoubting of both the level of pain and the validity oftheir pain.Providing evidence of the reality of their painallows participants to reject the implicit assumptions ofthe mistrustful responses of others: “then at times ifsomebody calls and if you’re laughing and you’rechatting away ‘God you’re really not too bad todayare ya’ and I feel like going ‘I’m trying to hide it I couldsit therewith a long face thenextday’ andyouknowyouare actually in a fair bit of pain” (Mary). Participantsdescribed an unpredictable experience of both goodand bad days, which led to difficulty in planning ahead.Descriptions of pain as unpredictable function as evi-dence of the individual’s lack of control over their painand therefore the reality of their pain: “it is yeah yeahyou can’t predict it because you could be fine todaydoing the very same thing say doing shopping buttomorrow you could be half ways around with yourtrolley shopping and you could be dead with the pain”(Mary). A range of pain-management techniques weredescribed by participants including the use of equip-ment, music, movement techniques, changing posi-tion, taking breaks, stretching, distraction, and resting.In order to complete activities various strategies wereemployed: using medication, resting, taking breaks,
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changing position, prioritizing, having targets, doingthings differently, and getting assistance. Thesetechniques were developed through trial and error.Descriptions of these techniques present the individualas actively trying tomanage their pain to enable activityand role participation. These strategies also counterclaims of malingering, as exemplified in the followingquote from Geraldine where she describes usingmedication in order to do housework:I took two Panadol after breakfast because the pain
was starting to kick in and it kind of numbs it justenough that you can do things and it’s great becausethen you think “well I’ll clean the house” . . . so you sitdown at the end of an evening “ah Jesus that wasbrilliant I managed to actually do that now today”.(Geraldine)
Discourse of chronic pain as personal tragedy
Participants identified a range of overwhelminglynegative consequences of chronic pain includingactivity, relationship, physical, financial, and emo-tional consequences and changed expectations ofthe future. These descriptions were identified bythe authors as accounted for by a discourse of painas personal tragedy. This discourse constructs thechronic pain experience as a tragedy for the personwhere multiple aspects of their lives are destroyed.This tragedy is personal in that it is not shared withothers but experienced by the individual alone. Thisdiscourse bolsters a moral discourse as they bothreject any claims that people with chronic pain arebenefiting from their pain. Participants’ accounts ofthe future were dominated by uncertainty and con-cerns about the progression of their pain and/or theircondition and their ability to do things in the future:You know the mother in law will call and say “oh
you’ll have to come up” and someone else will have todo something. It’s like I am only thirty six, thirty seventhis year and I’m not far behind her really. . .. Will I beforty five before I actually become totally almostincapacitated?” (Geraldine)Participants described many negative activity con-
sequences of chronic pain including experiencingpain, lack of comfort, fear, and self-monitoring duringactivities, the need for assistance, and slowed activityperformance. Many activities could no longer becompleted, for example exercise and dancing. Activitychanges were identified as leading to loss of routine,boredom, loss of pleasure, and diminished self-esteem. “Now he brought up the sticks to me lastnight because I crawled like a little chimpanzee up thestairs. Now I sit down and go down on my behinddown the stairs” (Fran). Participants described diffi-culty fulfilling social roles as particular activities couldno longer be completed. Participants described these
changes as placing a burden on others. Participantsalso described the emotional and mood consequencesof chronic pain as affecting relationships. Participantsdescribed their bodies as changed by pain: manyparticipants described their bodies as aged, and otherchanges included gaining or losing weight andchanges in their hair. “At what I feel what I feelvery frustrated by is in my mind I feel young andfresh but I feel like I’m in the body of an eighty-year-old that’s how I feel about the body that I have”(Patricia). Participants described negative financialconsequences of chronic pain including loss ofincome because of inability to work and healthcarecosts: “oh yeah definitely money I mean money is thebe all and end all of everything you know especiallylike my friends are up to date with the style and stuffand me like looking through magazines I wish I couldhave like” (Fran). Participants described negativeemotions and moods because of pain and becauseof the consequences of pain. Feelings describedincluded tiredness, feeling cranky, feeling short-tempered, feeling heartbroken, frustration, anger,anxiety, panic, insecurity, upset, uselessness, lowspirits, stressed, disappointed, worried, agitated,overwhelmed, being depressed, going downhill men-tally, being on a downward emotional spiral, andreduced self -esteem. “You know if you have to runafter them [children] you’re fecked like, and then youfind yourself angry, ‘why did you make me run afteryou?’ ‘I can’t run after you, I can’t do it’ and it’s justyou do you become a bear with a sore head”(Geraldine).
Biomedical discourse
Participants criticised extensively the healthcare ser-vices they had experienced and described their ownexplanatory models of pain beyond biopsychosocialunderstandings. The authors identified these reportsas accounted for by a biomedical discourse. However,participants did not use a biomedical discourse in theaccepted manner, that is, respecting the power andscientific knowledge of medicine and accepting thepatient role. Rather, participants’ accounts wereidentified as a rejection of a biomedical discourse.Participants’ descriptions of their experiences ofhealthcare were overwhelmingly negative. Almostall participants described experiences of misdiagnosisand medical error. Participants described not beingexamined, inappropriate investigations and referrals,missing test results, poor or no record keeping, anddoctors who were lacking knowledge about chronicpain. Participants’ subjective experiences of health-care were described as demeaning, upsetting,disempowering, overwhelming, and a battle. Multipleorganisational issues were highlighted including
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waiting lists, lack of follow-up, healthcare costs, lackof services locally, poor communication betweenhealthcare providers, inaccessible services, lack ofaccess to consultant doctors, and constantly changingjunior doctors. Doctors’ attitudes were described asdismissive, disinterested, careless, defensive, andunsympathetic. Participants described overly casualprescribing of medication with little informationabout risks, addiction, and side effects. Participants’experiences of medication were negative overall, withlittle success and many side effects. Participantsdescribed needing to “be able” for doctors, to beinformed and assertive in interactions with doctors.Participants suggested that doctors need to listen topatients and stressed the need for a diagnosis. Manyparticipants described a long process of getting adiagnosis:I had a doctor one night that came down in the
middle of the night and examined me and said I hadappendicitis and they were admitting me and I was fortheatre in the morning. I said “thanks doctor that’sgreat”. I had had my appendix out six months beforethat and just for the sake of actually being admittedand someone to realise I said “fine” and I went up theward. (Mary)Participants proposed a number of alternative
causes of pain outside of biopsychosocial explanatorymodels. Proposed causes included sitting downwrong, pregnancy, a fall, domestic violence, circum-stances of life, epidural, and given by God. Theseexplanations for chronic pain served to challenge thedominance of biological, psychological, and socialunderstandings of pain causation. A number ofparticipants described chronic pain as leading todepression and most participants rejected the ideathat mental illness causes chronic pain. Various onsetsof their chronic pain were described including gradualand dramatic onset:That’s one of the things I think that set it off I went
to America and one of my old adversaries on the tabletennis table happened to be there and I said “wouldyou a game of table tennis” . . . and we went there likethat and without warming up or anything we went atit. Pow, and I beat him. From that point on theshoulder without warming up and not playing forthree or four years it really, pow, ground the thingdown. (Jack)
Discussion
A moral discourse was used in participants’ accountsto construct themselves as legitimate, honest peopleexperiencing real pain who try to accomplish activitiesand meet the requirements of social roles despite painand do not burden others. Similar findings have beenreported by a number of qualitative studies of people
with chronic pain (36,37). Ong et al (38). reported ona qualitative study of people with low back pain whereaccounts were identified as a performance whichsought to portray participants as fulfilling their obliga-tions in order to establish the fact that they are aperson with high moral standards. Participants’descriptions of themselves also mirror the findingsof Werner et al. (39), where women described them-selves in interviews as strong, not complaining, andhaving seldom been sick before the onset of theirchronic pain. These findings are in keeping withthe findings of Eccleston et al. where participantsrejected the idea that pain is caused by individualweakness or personality or that chronic pain is a pleafor sympathy, attention-seeking, or an excuse to avoidwork (40). The unpredictability of pain is presented asevidence of participants’ lack of control over theirpain. As their pain is “real” and therefore not withintheir control participants cannot plan ahead. Studiesby Ong et al. (38) and Patel et al. (41) describe theunpredictable nature of chronic pain.The consequences of this discourse for practice, or
what people can or cannot do, are multiple andcomplex as this discourse is intimately connectedwith occupation. A key practice implication is theneed for participants to take actions to address thedoubting of their experience. This is achieved throughactive attempts to manage their pain and efforts tocomplete activities and fulfil social roles and respon-sibilities despite pain. Participants described conceal-ing their pain from others, not complaining, and beingstoic as tactics to manage social interactions. Thesefindings are mirrored in a number of studies of theoccupational experiences of people with chronic pain.In a study of women with chronic pain one of fourtypes of narratives identified was based on the meta-phor of fighting, which describes carrying on despitepain and completing what are perceived as duties orsocial obligations (15). The desire of people withchronic pain to engage in occupations despite painwas highlighted in a qualitative study of Swiss peoplewith chronic pain (11) and a number of studies haveidentified strategies used by people with chronic painto manage pain and accomplish activities (11,42-46),and varied approaches to task performance andadaptation have also been described (47).A discourse of chronic pain as personal tragedy was
identified in participants’ accounts as they describedmultiple negative consequences of chronic pain. Thevictim subject-position is offered by this discourse andthis discourse functions to counter claims that peopleare benefiting from their pain. Negative consequencesof activity changes such as altered enjoyment andinvolvement, changed levels of independence, andlimited social contact have been identified in otherstudies of people with chronic pain (8,14,48).
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A number of studies have described the impacts ofchronic pain on families and social relationships(8,49-51) . The negative financial consequences ofchronic pain further bolster an account of chronicpain as a tragedy with multiple losses not gains.Studies by both Walker et al. (8) and Kemler andFurnée (52) identify the financial consequences ofchronic pain including loss of earnings and healthcarecosts. A negative emotional experience is the naturalconsequence of this discourse and emotional sufferingbecause of chronic pain is widely reported (14,50,53).The consequences of this discourse and subject
position for practice are primarily in the closingdown of opportunities for action. Activities arerestricted, movement is restricted, and relationshipsare restricted. Inability to do everyday activities andrestriction in performance of activities have beenreported in multiple studies of people with chronicpain (8,14,41,50,54,55).Participants rejected a biomedical discourse and
resultant patient subject-position as they criticisedthe healthcare they had experienced, described theirown explanatory models of pain, and resisted psycho-social understandings of pain. Sakalys (56) identifiesthat meta-narratives in healthcare function as hege-monic ideologies, dominating and objectifying theindividual who is the patient. The dominance of abiomedical discourse of health has been discussed bymany. Reports that the accounts of people withchronic pain are met with scepticism and lack ofrecognition by doctors abound in qualitative research(55,57,58). Chronic pain poses a threat to the logic ofscientific biomedical thinking and this may be whypatients have difficulty being believed when present-ing themselves to clinicians (6,59). People withchronic pain have described investing much energy,time, and work before or during medical encountersin order to be perceived as a credible patient (58).Similar to the reports of participants in this study thepoor effectiveness, unpleasant side effects of medica-tion (45), unease regarding the potential for depen-dency on medication (47), struggle for diagnoses(60), and organisational issues such as waiting lists(53) have been identified in numerous studies ofpeople with chronic pain. Participants presentedexplanations for their chronic pain that extendedbeyond biological understandings of pain. Critically,however, these explanations did not include psycho-logical causes of chronic pain. Accounts of theassignation of psychological explanatory models byhealthcare providers are common (58,61). Lillrankanalysed Finish women’s narratives concerning theprocess of getting back pain diagnosed where theexperience of doctors indicating that participants’pain was psychological in origin was experienced asvery stigmatizing (6). In keeping with the descriptions
of onset in this study May et al. identify how con-structions of the cause of pain, such as arriving sud-denly, without cause, as the result of a singlecatastrophic event or degeneration avoid the suffererbeing implicated as responsible for the onset of theirpain (58). Explanatory factors outside of biopsy-chosocial understandings have been identified inother studies such as a trigger, the environment, orheredity (63). Horton-Salway emphasizes how DAcan show the operation of resistance to power (64).Participants’ descriptions of their health care experi-ences and their rejection of biopsychosocial expla-natory models of pain clearly resist the patientsubject-position. The consequences for action fromrejection of this discourse include challenging medicalexpertise, professionalism, and power and non-acceptance of the patient subject-position with itsattendant passivity and requirements for complianceand adherence to medical advice.This study has a number of limitations. The study
was exploratory and cannot be considered exhaustive.The small number of participants is in keeping withdiscourse analytic research; however, further researchis required to validate these findings. The participantshad diverse chronic pain diagnoses and the experi-ences of people with contested diagnoses are likely tovary from those with accepted diagnoses. The analysispresented relies heavily on the interpretations of theauthors, particularly in the naming of discourses. Theauthors have attempted to be aware of their ownpersonal biases; nonetheless, other readings of thedata are possible. It has been highlighted that criticalDA researchers can find what they are looking for inthe texts they are analysing (65). However, this biasis inherent in DA and the possibility of multiplereadings is central to critical DA (65,66).
Conclusion
Future discourse analytic research is required tovalidate these findings and future research on thediscourses used by people with various subtypes ofchronic pain would be of value.The findings of this study challenge the hegemonic
view of occupation that exists within occupationaltherapy by revealing the socially constructed natureof the experience of people with chronic pain andallowing their occupations to be understood as deter-mined by dominant discourses. Continued occupa-tional performance despite pain could be interpretedby an occupational therapist to mean the activity isvalued or meaningful to the client, as opposed to theoccupation being performed to construct the indivi-dual as a moral being. Non-participation in activities,non-compliance of clients with medications and treat-ments, and criticisms of healthcare could lead to
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challenging client–therapist relationships. Resistanceto psychosocial understandings of pain could beviewed as a lack of insight or acceptance onthe part of the client. However, an awareness of theoperation of a moral, personal tragedy and biomedicaldiscourse in the accounts of people with chronic painallows occupational therapists to consider these beha-viours to be determined by culturally dominant dis-courses. The key implication for occupational therapypractice arising from this study is the need for aware-ness on the part of occupational therapists of themultiple factors shaping the occupational perfor-mance of people with chronic pain. Further occupa-tional therapy practice implications include the needfor recognition of clients’ pain, caution in the assig-nation of psychosocial explanatory models, and theneed for occupational therapists to communicate trustand belief in the person’s pain.
Funding statement
The authors would like to acknowledge the followingfinancial support for the research and authorship ofthis article: University of Limerick Seed Researchfunding and Irish Health Research Board ResearchTraining Fellowship for Healthcare Professionals.
Declaration of interest: The authors report noconflicts of interest. The authors alone are responsiblefor the content and writing of the paper.
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