Illness perceptions in the context of differing work participation outcomes: exploring the influence of significant others in persistent back pain.

0.22 MB·English

by  Brooks, Joanna

Brooksetal.BMCMusculoskeletalDisorders2013,14:48
http://www.biomedcentral.com/1471-2474/14/48
RESEARCH ARTICLE Open Access
Illness perceptions in the context of differing
work participation outcomes: exploring the
influence of significant others in persistent
back pain
Joanna Brooks1*, Serena McCluskey2, Nigel King1 and Kim Burton2
Abstract
Background: Previous research has demonstrated that the significant others ofindividuals with persistent back
pain may have important influences on work participation outcomes.The aim ofthis study was to extend previous
research by including individuals who have remained in work despitepersistent back pain in addition to those who
had become incapacitated for work, along with their significant others.The purpose ofthis research was to explore
whether the illness beliefs ofsignificant others differed depending ontheirrelative’sworking status, and to make
some preliminary identification of how significant others may facilitate or hinder work participation for those with
persistent back pain.
Methods: Interviews structured aroundthe Illness Perception Questionnaire (chronic pain version) were conducted
withback pain patients recruited from a hospital pain management clinic along withtheir significant others. Some
patients had remained in work despitetheir back pain; others had ceased employment. Data were analysed using
template analysis.
Results: There were clear differences between beliefs about, and reported responses to,back pain symptoms
amongst the significant others of individuals who had remained inemployment compared with thesignificant
others of thosewho had ceased work. Three overarching themes emerged: perceived consequencesofback pain,
specific nature of employment and the impact of back pain onpatient identity.
Conclusions: Significant others of employed individuals with back pain focused on theextent to which activity
could still be undertakendespite back pain symptoms.Individuals out of work due to persistent back pain
apparently self-limited their activity and were supported intheir beliefs and behaviours by theirsignificant others.
Tojustify incapacity due to back pain, this group had seemingly become entrenched in a position whereby it was
crucial that theindividualwith back pain was perceived as completely disabled.We suggest that significant others
are clearly important, and potentiallydetrimental, sources of support to individuals with back pain. The inclusion of
significant others in vocational rehabilitation programmes could potentially be a valuable way of mobilising readily
accessible resources in a way that supports optimal functioning.
*Correspondence:[email protected]
1CentreforAppliedPsychologicalResearch,InstituteforResearchin
CitizenshipandAppliedHumanSciences,UniversityofHuddersfield,
Queensgate,HuddersfieldHD13DH,UK
Fulllistofauthorinformationisavailableattheendofthearticle
©2013Brooksetal.;licenseeBioMedCentralLtd.ThisisanOpenAccessarticledistributedunderthetermsoftheCreative
CommonsAttributionLicense(http://creativecommons.org/licenses/by/2.0),whichpermitsunrestricteduse,distribution,and
reproductioninanymedium,providedtheoriginalworkisproperlycited.
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Background A recent qualitative study in the United Kingdom ex-
Back pain is often a self- limiting condition, with most ploring the illness perceptions of those claiming state
cases resolving within six weeks of symptom onset [1]. disability benefit due to persistent back pain and their
However, for the substantial minority of people (around significant others highlighted the importance of signifi-
10%) who have not recovered after twelve weeks, and cant others and an individual’s wider social circum-
who develop persistent pain, the long-term prognosis is stances on recovery and work participation [25]. To
oftenuncertain,andpersonal,financialandsocietalcosts date, there has been little consideration given to how
associated with the condition can be substantial [2]. significant others might usefully be involved in interven-
Since remaining in work (or returning to work as soon tions to improve work participation for those individuals
as possible) limitsthe potentiallynegativesocial,psycho- with persistent back pain, and therefore the present
logical andphysical effectsoflong term sicknessabsence study sought to further extend this area of research by
[3,4], identifying obstacles to work participation is an also including individuals who have remained in work
importantgoal[5]. despite persistent back pain in addition to those who
It is widely accepted that psychosocial factors are im- had become incapacitated for work, along with their sig-
portant determinants for the consequences of back pain, nificant others. This allowed a more in-depth explor-
including the transition to chronicity, (e.g. [6-9]). How- ation of whether the illness beliefs of significant others
ever, it remains unclear which specific factors are of par- differed depending on their relative’s working status, and
ticular relevance in this context, and a comprehensive to make some preliminary identification of how signifi-
understanding of how pertinent psychosocial factors cant others may facilitate or hinder work participation
might operate in determining functional outcomes (in- forthose withpersistentback pain.
cluding work participation) is still required. There have
been several recent calls in the literature for more quali- Method
tative work in this area as the most suitable method Studydesign
through which to explore psychosocial risk factors for Individual semi-structured interviews were conducted
chronicity[10]andoccupationaloutcomes[11]. usingan interview schedule designed toelicit illness per-
It is becoming apparent that what individuals believe ceptions along the dimensions delineated in the CSM.
about their symptoms and the meanings they attach to This theoretical framework incorporates both cognitive
these (their ‘illness perceptions’ ‘illness beliefs’ or ‘illness and emotional representations of illness along five core
representations’) may be particularly important for both dimensions: illness identity, perceived causality, expecta-
clinical and occupational outcomes in low back pain (e.g. tions about timeline, consequences of illness, and beliefs
[8,12-16]). The Common Sense model of self-regulation about curability and control. An existing, well-validated
(CSM) (e.g. [17]) is a theoretical model established as a quantitative measure of illness perceptions in chronic
useful framework through which to elicit and explore ill- pain conditions (the revised Illness Perception Question-
ness perceptions. The CSM conceptualises individuals as naire, chronic pain version, [26]) was used to develop
having internal common sense models about perceived open-ended questions to encourage participants to re-
health threats, which in turn impact on the coping strat- flect on and fully elucidate their experiences and beliefs
egies adopted by individuals to manage their symptoms. in relation to the back pain condition and work. Thisre-
Todate, therehasbeenlittle in-depth research on the in- search design has been successfully employed in previ-
fluence of illness perceptions on persistent back pain and ous work and further information on the study design
work participation. Furthermore, research in this area can be found elsewhere [25,27]. Relevant permissions for
tends to focus on individual illness perceptions, yet it has the study were obtained from National Health Service
beensuggestedthatthesignificantothers(spouse/partner/ ResearchEthics(reference number 11/H1302/6).
close family member) of individuals with persistent pain
may have an important mediating influence on illness Participants
course and occupational outcomes [18-22]. Previous re- A convenience sample of patients reporting non-specific
search suggests that significant others are salient sources low back pain of at least twelve weeks duration were
of discriminative cues, punishment or reinforcement for recruited from a hospital pain management clinic in
pain behaviours [18-20], and that spousal pain beliefs northernEngland.Theemploymentstatusofpatientswas
aboutdisability,treatmentcontrolandmedicationaresig- recorded at point of entry to the study, and patients who
nificantlycorrelatedwithpartners’painseverityandother were not currently in employment had to attribute their
indicators of pain adjustment [23]. Significant others’ be- lack of work participation to their back problem to be
havioural responses have additionally been shown to be eligible for participation. Patients meeting the study cri-
associated with patient outcomes in other chronic illness teria, and who had a significant other, were identified and
conditions[24]. recruitedbythehospitalconsultantrunningthepainclinic.
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Participants were given full study information sheets and illness’ dimension). The interview schedule was flexible
writteninformed consent obtained. and allowed participants to raise topics as they wished,
The mean age of working patients was 49.2 years assistingintheestablishmentandmaintenanceofrapport.
(ranging from 45 to 52 years) and the mean age of their Questions were open-ended and non-directive, and were
significant others was 36.6 years (ranging from 25 to modifiedtobe posedtothe patientortheirspouseas ap-
48 years). Amongst patients who were not working, the propriate. Full copies of the interview schedule are avail-
meanagewas57years(rangingfrom 51to63years),and ablefromthecorrespondingauthoronrequest.
the mean age of their significant others was 61.5 years
(rangingfrom57to68years).Allparticipantdyadsinthe Dataanalysis
non-working sample were spousal relationships; amongst Interviews were analysed using the template analysis
the working dyads, three were in spousal relationships style ofthematicanalysis [28],a systematictechniquefor
and two wereparent/ adult childdyads (in both cases the categorising qualitative data in hierarchical clusters. This
significant other was the adult child). All participants technique has been previously used in both healthcare
identified their ethnic background as ‘White British’. and occupational research [28]. Template analysis allows
Details of our participant sample, including the present forthedefinitionof ‘apriori’themes(aspectsofthephe-
employment status and past employment details for both nomena under investigation that are of particular inter-
patientsandsignificantothers,arepresentedinTable1. est) in advance of the analysis process [29]. Those a
A total of eighteen interviews were undertaken by JB, priori themes that do not prove useful in representing
SM and NK. Interviews lasted around one hour and par- and capturing key messages are redefined or discarded
ticipant dyads were interviewed separately at a time and as the template is modified in the process of data ana-
place convenient to them. Interviews were digitally lysis. New themes, emerging through analytic engage-
recorded and transcribed verbatim. The following areas ment with the data, may be defined and added to the
were covered in each interview: (1) history of the illness template structure. In the present study, the use of this
(‘perceived causality’ dimension of the CSM); (2) percep- technique allowed for analysis to be guided by and ini-
tionsofidentityoftheillnessandcurrent statusoftheill- tially structured around our research focus on the
ness, including symptoms (‘illness identity’ dimension); dimensions of the CSM, a model which is already well-
(3) illness management (‘beliefs about curability and con- established as a useful framework for exploring beliefs
trol’ dimension); (4) timeline of the illness (‘expectations about illness and therefore a logical starting point for
about timeline’ dimension); (5) impact of the illness on this exploratory work. Through the process of analysis
the lives of both patient and spouse(‘consequencesofthe we were additionally able to identify and incorporate
Table1Participantdetails
Nameof Nameof Relationship Patientemployment Yearsin Yearsin Significantother Durationof
patient significantother topatient status education education occupation patientback
(Pseudonym) (Pseudonym) (patient) (significant pain
other)
Sarah Harry Spouse Outofwork(previously Leftat16 Leftat16 Engineer 11years
supermarketcheckout
assistant)
Mick Belinda Spouse Outofwork(previously Leftat16 Leftat16 Unemployed 18months
busdriver) (stoppedworkto
careforpatient)
Elizabeth Frank Spouse Outofwork(previously Leftat16 Leftat16 Retired 3years
schoolcleaner)
Hannah Gary Spouse Outofwork(previously Leftat16 Leftat16 Councilworker 5years
clericalworker) (manual)
Sam Tess Spouse Employed(Manager) Degree Doctoral Doctor 11years
Rob Vikki Spouse Employed(Manager) Degree Professional Management 10years
qualification consultant
Sally Will Son Employed(volunteer Leftat16 Leftat16 Propertydeveloper 26years
service)
Elena David Spouse Employed(Training Degree Degreeand Teacher 3years
consultant) professional
qualification
Ruth Brian Son Employed(Social Professional NVQ Plumber 3years
worker) qualification
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into our template structure additional themes represent- better understanding of respondents’ perspectives and
ing some of the ways in which other factors and beliefs beliefs, and allowing additional dimensions not incorpo-
may impact on work outcomes for patients with chronic rated in standard quantitative assessment of illness repre-
back pain. sentations to emerge from the data. Verbatim extracts
The main procedural steps undertaken in our analysis from interviews are presented to illustrate our findings,
wereasfollows:(1)Wethoroughlyfamiliarisedourselves andpseudonymsareusedthroughout.
with our interview data through reading and re-reading
of the interview transcripts; (2) we carried out prelimin- Results
ary thematic coding of the data using the CSM frame- Thethreethemesonwhichwewillfocusforthepurposes
work to tentatively define a priori themes, whilst ad- ofthisarticlearethemesinwhichtherewereapparentdif-
ditionally recording any new themes which emerged ferences between our working and non-working samples.
from the data and which appeared interesting and rele- Anoverviewofthethemesalongwithspecificexamplesis
vant; (3) we organised our emerging themes into mean- presented in Table 2, and each theme is then presented,
ingful clusters and began to define an initial coding definedanddiscussedatgreaterlength.
template incorporating the relationships between and
within themes; (4) we applied our initial template to our Consequencesofillness
interview data and modified the template in an iterative This theme refers to the extent to which participants
process until all members of the research team were sat- reported that the patient’s back pain impacted on their
isfied that the template provided a comprehensive repre- everyday life and activities. In the employed sample,
sentation of our interpretation of our interview data. when asked about the consequences ofthe patient’sback
Our initial analysis drew on the template designed and pain, both significant others and patients focused on
applied in our earlier work [25] and we found that it how the patient did not allow their back pain to prevent
successfully incorporated the data derived from the them from undertaking activities. They emphasised what
current study, although it required structural modifica- the patient could do despite their back problem, rather
tion at lower thematic levels, with some themes being than what theywereunable todo.
retitled and amended to better represent the key mes- “Interms ofwhatdoesitimpact on,wellitdoesn’t
sages derived from interview data (see [27] for further impactonanything,‘coshedoesn’tnotdoanything
detail). All interview data were mapped onto the tem- becausehe’sgotpain.He’sdefinitelynot sittingaround
plate and the iterative process of data analysis continued not doinganything going ‘I’vegot abackproblem’.He
until all relevant data had been satisfactorily coded to getsfedupwith it,butit’snot reallystopped him”
the modified template. Initial analysis was undertaken by
JB and SM, NK and KB checked the coding and analysis [Tess–significantother,working sample]
andthefinal template wasagreedbyallauthors.
Our final coding template was comprised of both “Ilivewith chronicpain. Butme and mypainarelike
themes derived from the CSM and themes which hand inglove. AndI’mtheglove. I’malwaysontopof
emerged through analysis of our interview data and is thepain. When Iknewthatitwouldn’tget any better,
available from the corresponding author on request. For
that Ihadtolivewith thispainatthislevelor
the purposes of the present article, we focus on three
differentlevels,asitmay bedepending,Idecided to
themes which incorporate data suggesting clear distinc- resume work”
tions between dyads in which patients had remained in
employment and dyads in which the patient was no [Sally–patient,working sample]
longer in work due to their back problem – (1) Conse-
In contrast, patients and significant othersfrom the out
quences of illness; (2) Nature of work and (3) Patient
ofworksampleemphasisedthefar-reachingconsequences
identity. The first of these (consequences of illness) is a
ofthebackpainontheminutiaeofeverydayactivities.
theme delineated in the CSM, the latter two themes
emerged through our engagement with our participants’ “Going tosupermarket,we’vegottogo together now.
interview data. For example, according to the CSM,‘ill- Before she’dgoonherown,butnowwe’vetogo
ness identity’ pertains to the specific symptoms asso- together. Because she’sgottrolleytohold onto she’s
ciated by a patient with an illness. Our ‘patient identity’ alright,but aloafof bread andoneortwootherbits
theme highlights ways in which beliefs about personal inthebagandthat’sit.Butfourpintsof milk,you
characteristics may additionally play an important role know,shecan’tpickmore thanoneup, sowe’vetogo
in response to and management of symptoms. Our ana- together”
lysis demonstrates how in-depth qualitative research can
usefully extend and explicate existing theory, allowing [Harry–significant other,non-working sample]
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Table2Definitionofthemesandexamples
Themetitleanddefinition Examplequotationfrom Examplequotationfromnon-workingsample
workingsample
1.Consequencesofillness “Itdoesn’timpactonanything,‘cos “Likemakingacupoftea,I’llsay‘Areyoualright,
hedoesn’tnotdoanythingbecause becareful’,Isay,‘CanIhelp?’andIknowI
Extenttowhichparticipantsreportedthatthe he’sgotpain” can’thelpatall”
patient’sbackpainimpactedontheireverydaylife
andactivities
2.Natureofwork “Myimmediatelinemanageris “Thereweren’treallyalottheycouldfindshecoulddo”
verysupportive”
Waysinwhichthenatureofpatientparticipants’
particularprofessionswerereportedasimpactingon
whetherornotpatientshadbeenabletocontinuein
employmentwithbackpain.
3.Patientidentity “Hehasthisdeterminationwherehe “Hisworkmatesthought‘There’snowtwrongwithyou,
won’tletit,hewon’tgiveintoitand you’resatdown,you’rewalkingaround’,butoncehe’s
Referstoparticipants’depictionsofthepatientin hewon’tletitbeathim” satdown,he’sgotpainbuttheycan’tseethat”
relationtotheirself-managementoftheirbackpain
condition–heroorvictimnarrative?
“Ialwaysfeelconsciousthat I’moverloadingother “Shehastositout onceortwice atlinedances”
people,youknow,justlikemakingacupoftea,I’llsay
‘Are you alright,be careful’,Isay,‘CanIhelp?’and I [Frank–significant other,non-working sample]
knowIcan’thelpat all,Ican’t.”
“When wewereonholiday,Icouldn’tevenget
[Sarah–patient,non-working sample] comfortableonthe sunbed,Icouldn’tevenlie onmy
Significant others in the non-working sample were backfortenminutes”
described as taking on a role in which theyacted as anx-
iousbystanders,withbothpatientsandsignificantothers [Hannah–patient,non-working sample]
in this group tending to ‘catastrophise’ regarding poten-
tial ratherthan actual consequences ofthe condition. Bluntly put, patients who were out of work were, at
least to some extent, apparently self-limiting, fearful that
“Ican’tleave himtowalkuptownonhisown.
activity of any kind would exacerbate their condition
Crossingroadshe’sreallyslow,allittakesisonecar
and were supported in these beliefs by their significant
througharedlight,you know.Itdoesfrightenme soI
others. However, deeper analysis of the interview data at
don’tleavehim onhisown”
more detailed lower level coding allows for further ex-
ploration of the development of and reasoning behind
[Belinda–significantother,non-working sample]
theseostensibly unhelpfulbeliefs.
“Thewifesaystome,‘You’resmellingabit,whyaren’t
Natureofwork
youshowering?Justcosyou’reilldoesn’tmeanyoucan’t
This theme refers to ways in which the nature of patient
shower’.Isays,‘Thetroubleislove’,Isays,‘Theproblem
participants’ particular professions were reported as
is,I’mfrightenedofgettingintheshower’.Shesays
impacting on whether or not patients had been able to
‘Why?’Isays‘I’mfrightened,Idon’twanttofall’.She
continue in employment with back pain. Participants in
says,‘Yousillybugger,whydidn’tyoutellme?’Sowhen
the working dyads acknowledged that patients had not
Ishowernow,she’sstoodtherewithmeatthesideof
carried on in employment entirely unaffected by their
mesoshecangetholdofmeifanythinghappens”
back problem. Flexibility from employers, primarily in
allowing time off to attend medical appointments but
[Mick–patient,non-working sample]
also allowing for reduced or flexible working hours in
However, close reading of the interview data revealed some instances, was vital in facilitating continued em-
that participants did not report patients in the non- ployment. Regrettably, even amongst those patients who
workingsampleasactuallyphysicallyunabletoundertake had managed to continue in work, this was not always
activities due to their condition. In fact, there were very describedaseasily forthcoming.
few examples of activities that patients were reported as
completely physically unable to undertake, and those that “Earlierthisyearactually theHRdepartmentwere
were highlighted, whilst impacting on quality of life, did starting toaskquestions around histimeofffor his
notconstituteactivitiesthatcouldbedefinedas‘essential’: backinjections...Icover HR aspartofwhatIdo,
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and Ibasicallysaid‘Getbacktowork andtellthem to tositdown. What jobistherethat lineofwork?She
getlost and we’lltake aclaim againstthem iftheytry can’t sit atthecheck-outwith twisting,atthecigarette
thisonebecausetheonlyreasonyoucango toworkis kiosk you’re stoodupand moving around,sothere
because yourpainismanagedfor youand you’ve weren’treallyalottheycouldfind shecoulddo”
workedforthem forbloodydonkey’syears’...The
troubleisit’snot necessarilythepeople you’reworking [Harry–significant other,non-working sample]
with, it’ssomeoneovertherewhodoesn’tknowyou
fromAdam, who’smakingdecisionsabout youwho “Initially Icarriedonatworkand theysortof got
doesn’tknowthefullpicture” somebody toliftchairsupforme,youknow,sothatI
wasn’tlifting heavythingsandthingslikethat.They
[Vikki–significant other,working sample] did atthebeginning,butthey’renotgoing todoit all
thetime,theywouldn’t,andIwasn’tgoing toask
Both patients and their significant others had usually them,youknow.I’dhave feltinadequate,I’dhave felt
been involved in the process of negotiating and main- that theywere saying‘She’scomebackand shecan’t
taining necessary concessions at work; often it was good even dothisand can’tevendothat’,soIdidn’teven go
personal relationships with line managers that facilitated downthere”
thesearrangements.
[Elizabeth–patient,non-working sample]
“Atthat timehehad alinemanagerwhowasvery
sympathetic. Idon’tthinkanybody’sbeenallowed to Participants did not necessarily perceive the patient’s
doit sinceorbeforethen. ButIwrotehisapplication previous employer as unsympathetic or in any way at
form,maybe that helped” fault, but neither patients nor significant others per-
ceived the patient as havingany rights or recourse to ac-
[Tess–significantother,working sample] tion in this context, in direct contrast to the working
sample, who were articulate, confident and informed
“My immediate line manager isverysupportive and around thepatient’semploymentrights.
theguy whowasmyboss atthetimethatIstarted For patients who were not working and their signifi-
with thiswasextremelysupportive.Ittendstobethe cantothers,circumstancesoverwhichpatientswereper-
onesabove,youknowthenextlineup, they’renot that ceived to have little control were thus reported to have
supportive,it’slike‘Yeah,whatever’butyeah,my contributed to their inability to both continue in em-
immediatelinemanagementhave beenfantastic” ployment and benefit from the positive psychological
advantages afforded by continued employment. Partici-
[Sam –patient,working sample] pants in the working sample did not attribute the
patient’s continued employment to economic necessity
It was evident that participants in this sample were but described the beneficial consequences of employ-
well-informed about their rights and the employer’s re- ment in terms of positive self-identity and as a welcome
sponsibilities and were confident of the patient’s value distractionfrom thebackproblem.
andworth totheemployer.
“Ithinkthework’sgoodforherbecauseitgetsherout
“EvenifIwentoff sick,ifIhadtohave timeofftohave and about”
thisspinal operation,Iwould expect afterthe amount
of yearsI’veworkedforthem, Iwouldbloomingwell [Will–significant other,working sample]
expect themtopayformetobeoffand toholdmy
post” “Hegoes towork because hejustwon’tgive intoit and
because hewants tokeep him himselfoccupied.He
[Elena–patient,working sample] says‘I’m not aninvalid and I’m notgoing togive in
to it’”
In contrast, participants in the non-working sample
described the nature of the patient’s previous employ- [Vikki–significant other,working sample]
ment as wholly incompatible with the patient’s back
problem. “I’vefound thebesttreatment forthebackpain isme
gettingonwith work,gettingonwith life”
“Shecan’t sitfortoolong before she’stoget uptomove
around and shecan’t stand forlongbefore sheneeds [Rob –patient,working sample]
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Both patients and significant others in the non-working “Hisworkmatesthought‘There’snowtwrongwith you,
sample were resigned to the permanent effects of the you’re satdown,you’rewalkingaround’,butoncehe’s
patient’s back problem on their employment status and satdown,he’sgotpainbuttheycan’t see that,they
were thus more likely to consider the patient as ‘disabled’, didn’t see that”
arolewhichmightbecomeself-fulfilling.Ourdatasuggest
that the ability of participants to remain in employment [Belinda–significantother,non-working sample]
was in part influenced by the nature of their work
(whether or not adaptations could be made to enable “Shecoversitupsopeopledon’trealise,everyone
employees to continue in post despite their symptoms) thinksshe’salright,but she’snot,she’sputting ona
andinpartduetopatients’confidenceandabilitytonego- braveface,Iknow”
tiate adaptations with their employers (significant others
often described themselves as being an important source [Brian–significantother,working sample]
of support for the patient in this context). Whilst the
patients in our ‘out of work’ sample had not necessarily However, the two samples notably differed in their
worked in manual jobs, the nature of their previous roles portrayal of the patient. Amongst the working sample,
couldbeperceivedashavinglimitedscopeforadaptations both patients and significant others firmly rejected any
to accommodate their back problem. In our ‘working’ notion of the patient being disabled by their condition.
sample, patient participants had higher status roles in Rather than seeing the patient as a victim, participants
which the work involved was described as more easily in this group used the back pain as evidence of the
allowing for some balance between sedentary positions patient’sstrength ofcharacter.
and physicalmovement. Theseparticipantshad been able
to negotiate flexible working hours and adaptations to “Ithink sheherselfmanagesremarkably. Ithink she
theirrolewheretheyfeltthisnecessary. doeswhat shecanandIthink she’smanageditreally
well”
Patientidentity
This theme refers to participants’ reflection on personal [David– significant other,working sample]
character traits of the patient in relation to their self-
management of their back pain condition. Although our “He’sincrediblereally.Hehasanamazingpain
analysis identified socio-economic factors including na- threshold.Hecanpushthat pain thresholdupto
ture of work as an area in which there seemed to be another leveland hemustdothatpsychologically
clear differences between the two samples, potentially becausewhy ishedifferenttoanybodyelse? Itcan
accounting to some extent for differing work participa- only be amind overmatterthingcan’tit andhowhe
tion outcomes, interestingly participants themselves did hasthisdetermination wherehewon’tletit,hewon’t
not identify these as accounting for patients’ employ- giveintoit andhewon’tletitbeathimand he
ment status. Both patients and significant others were doesn’twanttogivein”
more concerned to explain the patient’s current func-
tional status in terms of personal narratives relating to [Vikki–significant other,working sample]
the patient as either stoical and heroic in the case of the
working sample or as a blameless victim amongst the With no interviewer prompting, every significant other
non-working sample. This focus on individual character participant from the working sample drew some compari-
traits seemed to arise at least in part in response to per- son between their family member who had maintained
ceptions of outsiders’ attitudes towards the patient and their employment despite their back pain and others with
their condition. It is known that patients with back pain backpainwhohadceasedemployment.Allsuchcomments
often perceive themselves as stigmatised due to their tended to be somewhat disparaging regarding those who
condition [30] and it has been suggested that significant reportedthemselvesas unabletoworkduetobackpain.
others may attempt to support patients through verbal
narratives providing witness to and validation of patient “Ithinkit’sfrustrating, loadsofpeoplejust‘Yes,but’,
incapacity in the face of perceived outsider scepticism all going‘Ican’tdothat’,‘Ihaven’ttried that’,‘I’mnot
[25]. Our interview data showed that, across the two doing that’...Frustratingbecausethere’speople as
sampletypes, significant others reported that their close- well, people whohave areallychronic difficultillness
ness to their relative afforded them the opportunity to trying hard and people whodon’t appeartobethat
witness the true impact of the back pain in a way that incapacitatedgoing ‘Ican’tpossiblydothis’
outsiders could not due to the invisibility of the pain
symptoms. [Tess–significantother,working sample]
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Participantsinthenon-workingsamplewerewellaware There was a notable difference in the way that partici-
of the potentially censorious attributions associated with pants from the working and non-working samples
being out of work due to back pain especially in relation described how the patient’s back condition had impacted
to claiming state benefits, and significant others in this on both the patient’s identity and on their activities. Sig-
samplewereparticularlyvociferousintheirdefenceofthe nificant others from the working sample tended to em-
patient, railing against others’ lack of understanding of phasisewhatthe patient could dodespitetheircondition
thepatient’scondition. and attributed this to the patient’s admirable personal
characteristics, describing them as heroic and stoical. In
“We’veneverclaimedincapacityandwe’venever contrast,ournon-workingsampleemphasisedtheextent
claimed any injury,whichninety percent ofpeople to which the condition prevented the patient doing
would,you know,andthat isn’t anissue,youknow, things and descriptions of patient identity focused on
she’sgotit andthat’sit,andnowshejust,shewantsto the patient as a helpless victim, anticipating and rebuff-
getthebestoutoflife” ing potential accusations of personal responsibility and
blame. For significant others of patients out of work due
[Gary–significantother,non-working sample] a back problem, it may be that to justify the patient’s in-
ability to continue in employment, it is necessary that
“Hewaswrongly accusedof something,somebody they be defined in terms of their incapacity and in terms
wrotetothemtosayhewasclaimingdisability of their being ‘disabled’. This means emphasising what
fraudulentlyand theywereinvestigating for fraud, patients cannot do rather than what they can do, with
theysent alettertohissupervisorasking if heknew potentially detrimental effects on their activity and iden-
anythingabout hisdisability..Itmakesme soangry, tity. In the face of stigmatising socio-cultural beliefs
theytookhiscaroff him,thedisabilityliving about ‘benefit cheats’ and ‘malingering’ [31], significant
allowanceoff him,and nowwe’rehaving tofightfor others may feel they cannot allow room for scepticism
them backagain” to develop and it is therefore important that they sup-
port their ‘other’ by emphasising their inactivity and/or
[Belinda–significantother,non-working sample] disability. This is likely to have negative consequences in
terms of participation outcomes because activity avoid-
From the above analysis it is understandable how ance is in direct opposition to the clinical guidelines for
patients and particularly significant others in the non- best practice management of persisting low back pain,
working sample would resort to a ‘patient as truly dis- which recommend that people with low back pain
abled’ narrative. These participants view patients as un- should be advised that staying physically active is likely
fairly stigmatised as potential malingerers, and perceive tobebeneficial [32].
themselves as lacking in personal control over their – or Whilst work is generally good for health and well-
their significant other’s - employment situation. It is being, there is a recognised social gradient in health
therefore not surprising that they place a strong em- partly dependent on the type of work [3]. For partici-
phasis on the serious and far-reaching consequences of pants in our ‘non-working’ sample, the nature of their
thepatient’sback problem. previous roles could have limited scope for workplace
adaptation, and it has been documented that particular
difficulties exist in any return to work process after a
Discussion period of ill health for individuals with lower levels of
Significant others are thought to have an influential role educationalachievement andoftenphysicallydemanding
in the experience and progression of back pain, yet little jobs [25,33]. By contrast, our ‘working’ participants had
research has thus far examined this role in the context higher status roles in which the work involved was
of work participation. Findings from this exploratory described as more flexible, and participants had been
study provide some potentially useful insights into the able to negotiate their working hours and adaptations
ways in which both individuals with persistent back pain where they felt this necessary. Further examination of
and their significant others conceptualise and respond to the data revealed that the working participants often felt
back pain. The inclusion of significant others highlights it was a personal relationship with line management that
some interesting and currently under-researched areas had made these concessions possible, with Human Re-
relating to wider social circumstances, which may play source departments often described as less helpful and
an important role in influencing occupational outcomes. impersonal. These findings provide additional support
It follows that these factors are potentially important in for the notion that line managers have a key role in this
the design and implementation of occupational rehabili- context, which warrants further exploration to ensure
tation programmes. that those undertaking this role have the necessary
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knowledge and support [34,35]. Further research might in a way that supports optimal functioning. Indeed, it has
also usefully focus on identifying how the design of inter- beensuggestedthata‘cando’focusmaybeassociatedwith
ventions might assist in helping individuals stay econom- betterfunctioningintermsofworkparticipationoutcomes
ically active when the nature of a job role or business [35].ThisapproachisinlinewithcurrentUKgovernment
presents less obvious opportunities for redeployment or policyandtheintroductionoftheStatementofFitnessfor
retraining. Whilst certain work may be perceived by both Work (the fit note –www.dwp.gov.uk/fitnote) by the De-
employer and employee as being limited in scope for partment for Work and Pensions in April 2010. This
adaptation, with some inventiveness in identifying and replaced the previous Medical Statement (the sick note),
overcomingthepertinentobstacles,accommodationsmay and changed the focus firmly to what people can do des-
infactbe possible [35].Morerecent work emerging from pitetheirhealthproblem,asopposedtoemphasising(and
the body of literature on organisation culture and reflect- certifying)whattheycannotdo.
ing on how workplaces can best foster a supportive cul- It is acknowledged that a limitation of this study is the
ture to overcome workplace obstacles may be useful in small sample of people with back pain, all recruited from
this respect [3]. Others have highlighted the importance one geographical area in the United Kingdom. Addition-
of making sure that employees are fully informed about ally,werecognisethatthedifferentsocialwelfarearrange-
theirrightsandresponsibilitiesinthecontextofmusculo- ments in place in the different countries of the developed
skeletal pain conditions [36] and the present study lends world maywellimpacton theextenttowhich these find-
furtherweighttothiscall. ings can be generalised to other international settings.
Our findings suggest that patients will encounter a Nevertheless, our use of in-depth qualitative research
range of psychosocial obstacles to work participation and methods provides novel and potentially useful data on
thereisadangerboththeyandtheirsignificantotherswill which further work can build. Many of our findings sup-
perceive these obstacles as insurmountable especially in port and extend previous findings from work with long-
thefaceofsocio-culturalscepticismabouttheircondition, term welfare claimants and further research focusing on
along with widespread disparagement of the unemployed. individuals recruitedfromprimarycaresettings mayoffer
Many disadvantaged individuals become entrenched in a additional insight into the disability trajectory, identifying
positionwherebyitbecomesallthemoreimportanttobe at what point interventions focused on significant others
seen as completely disabled. In adopting this stance and maybemostvaluable.Futureresearchmightalsousefully
limiting their activity, the chances of any return to work exploreinmoredepththerelativeimportanceonthespe-
and economic activity become increasingly remote. Im- cific dimensions delineated in this study. This study can-
portantly,ourresearchsuggeststhatwell-intentionedsup- not offer a perspective of those who report having no
port from those close to patients may be serving only to significantother,andwedidnotexamineinanydepthdif-
further entrench this position of total disability, addingto ferences between significant other type. Whilst living on
the body of previous evidence which demonstrates how one’s own does not necessarily mean that one has no sig-
solicitousrespondingbyotherstopainrelatedbehaviours nificantothersupport,itmaybethattherearedifferences
can be associated with a range of negative outcomes [25]. worth examining between dyads based on whether or not
Thus, the role of significant others may warrant further theyco-habit,anditmightalsobeusefultoexplorediffer-
investigation by those looking to facilitate effective voca- ent types of significant other (for example parent/ child
tional rehabilitation. This is especially important in light dyadsincomparisontospousaldyads).
oftheon-goingchangestothewelfaresystemintheUni-
ted Kingdom, which are being implemented to reduce its Conclusion
substantial cost burden, as it raises the possibility that This study addstoa growingbodyof literaturethathigh-
initiatives will be interpreted as removalofsupport, being lights some of the complexities involved in determining
linked to and allied with punitive measures. Our findings work participation outcomes for individuals with back
suggestthatitispossiblethat,whereindividualsarefaced pain. In particular, this work draws attention to ways in
with more stringent tests and assessments to determine which both close others and wider social circumstances
their eligibility for benefits, this may encourage further may impact on functional outcomes, including work par-
effortsbypatientsandthoseclosetothemtodemonstrate ticipation. Our findings suggest that the role of close
the (perceived) severity and impact of the illness, thus othersmaybeanareawarrantingcarefulconsiderationby
entrenchingattitudesandleadingtofurtherinactivity. those designing and implementing programmes intended
However, our findings also demonstrate that significant to facilitate vocational rehabilitation. Findings from this
others are clearly important sources of support to indivi- study suggest that,tobeeffective, workparticipationpro-
duals with back pain, and their inclusion in any such re- grammes should be flexibly designed, able to assess and
habilitation and education programmes could potentially manage individuals and their wider social circumstances.
beavaluablewayofmobilisingreadilyaccessibleresources Programmes intended to facilitate return to work also
Brooksetal.BMCMusculoskeletalDisorders2013,14:48 Page10of11
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JBisaResearchFellowattheCentreforAppliedPsychologicalResearch, 14. HovingJ,vanderMeerM,VolkovaA,Frings-DresenM:Illnessperceptions
UniversityofHuddersfield.Herprimaryresearchinterestsfocusonthe andworkparticipation:asystematicreview.IntArchOccupEnvironHealth
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