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Review
Supporting ‘work-related goals’ rather than ‘return to work’after cancer? A systematic review and meta-synthesis of 25qualitative studies
Mary Wells1*, Brian Williams2, Danielle Firnigl3, Heidi Lang1, Joanne Coyle3, Thilo Kroll3 and Steve MacGillivray31School of Nursing and Midwifery, University of Dundee, Dundee, Scotland, DD6 8BA, UK2Nursing, Midwifery and Allied Health Professions Research Unit, University of Stirling, Stirling, FK9, UK3Social Dimensions of Health Institute, Universities of Dundee and St Andrews, Dundee, Scotland, DD6 8BA, UK
*Correspondence to:School of Nursing and Midwifery,University of Dundee, 11 AirliePlace, Dundee, Scotland, DD68BA, UK. E-mail: [email protected]
Received: 20 February 2012Revised: 21 June 2012Accepted: 11 July 2012
AbstractBackground: This study aimed to systematically review and synthesise qualitative studies of employ-ment and cancer.
Methods: A rigorous systematic review and meta-synthesis process was followed. A total of 13 233papers were retrieved from eight databases; 69 were deemed relevant following title and abstractappraisal. Four further publications were identified via contact with key authors. Screening of full textsresulted in the retention of 25 publications from six countries, which were included in the synthesis.
Results: Studies consistently indicate that for people with cancer, ‘work’ forms a central basis forself-identity and self-esteem, provides financial security, forms and maintains social relationships,and represents an individual’s abilities, talents and health. Work is therefore more than paidemployment. Its importance to individuals rests on the relative value survivors place on theseconstituent functions. The desirability, importance and subsequent interpretation of individuals’experience of ‘return to work’ appears to be influenced by the ways in which cancer affects thesefunctions or goals of ‘work’. Our synthesis draws these complex elements into a heuristic model tohelp illustrate and communicate these inter-relationships.
Conclusion: The concept of ‘return to work’ may be overly simplistic, and as a result, misleading.The proposed benefits previously ascribed to ‘return to work’ may only be achieved throughconsideration of the specific meaning and role of work to the individual. Interventions to addresswork-related issues need to be person-centred, acknowledging the work-related outcomes that areimportant to the individual. A conceptual and operational shift towards supporting survivors toidentify and achieve their ‘work-related goals’ may be more appropriate.Copyright © 2012 John Wiley & Sons, Ltd.
Background
Around 90 000 people of working age are diagnosed withcancer each year, and the number surviving cancer isincreasing [1]. UK policy [2,3] has emphasised theneed for more research into the long-term physical andpsychosocial consequences and challenges of living withcancer. A significant challenge for many people is thatof returning to work.There is growing evidence that returning to work after
cancer is beneficial; indeed, most cancer survivors regardwork as a vital aspect of re-establishing normality [4]. Insociety as a whole, work serves a range of functionsbeyond that of earning a living, and in studies of peoplewith cancer, work is perceived as a means of reducing oravoiding social isolation, boredom, loss of self-esteem,financial hardship [5–7] and a way of enabling people to re-gain a sense of normality, self-concept and identity [5,8,9].Despite these potential benefits, between 20% and 30%
of people report impairments in ability to work aftercancer [10], the risk of becoming unemployed is 37%higher in cancer survivors than in healthy controls [11],and up to two-thirds report financial difficulties [12]. In-deed, quantitative studies indicate that cancer survivors
experience a range of disadvantages in the labour market[13], varying by cancer type [14,15]. In addition, many ofthose who do return to work report a loss of self-confidence,difficulty coping with symptoms at work, feeling less able todo their jobs and deteriorating career prospects [5,13,15–17].Survivors may also receive little work-related advice fromclinicians and variable support from employers.The UK charity, Macmillan Cancer Support, has
recently drawn attention to the importance of vocationalrehabilitation, producing a toolkit and funding a series ofvocational rehabilitation initiatives [18]. Systematicreviews of vocational rehabilitation interventions have,however, highlighted the paucity of methodologicallysound interventions on the basis of existing evidence[11,19]. The development of such interventions dependson a thorough understanding of the range of factors influ-encing return to work and work-related experiences.Synthesising the findings of multiple qualitative studiescan provide such an understanding [20,21]. Furthermore,it can enhance methodological rigour and provide greaterreassurance that any interventions based on such researchare optimally designed. The potential benefits of such syn-theses have been confirmed by recent studies of return towork in both musculo-skeletal injury [22] and mental
Copyright © 2012 John Wiley & Sons, Ltd.
Psycho-OncologyPsycho-Oncology (2012)Published online in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.3148
illness [23]. However, reviews of return to work in cancerhave, so far, only focussed on breast cancer [24,25].We therefore conducted a meta-synthesis of qualitative
studies to elucidate the complex issues surroundingreturning to work after cancer and to develop a robusttheoretical and empirical basis for the development offuture interventions. The following questions guided thereview:
(1) What are cancer survivors’(a) attitudes to work during and after cancer treatment?(b) experiences (both positive and negative) of
gaining employment, working through treatmentor returning to work?
(c) strategies to overcome any challenges experienced?(2) What are the roles, attitudes and experiences of family/
carers’ and/or employers’ in relation to facilitating orobstructing cancer survivors’ work experiences?
Methods
We conducted a systematic review and meta-synthesis ofqualitative studies drawing on methods proposed by Noblitand Hare [26].
Search strategy
A highly sensitive search strategy, consisting of termspertinent to cancer, return to work/employment andqualitative research, was developed and then run duringAugust 2010 in eight indexing databases: Medline,Embase, Cinahl, BNI & Archive, ASSIA, SSCI,PsycINFO and Cochrane Library. (For full search strategy,see Appendix A.) We mapped terms to existing subjectheadings in each database and used keyword searching withand without truncation. Experts, key authors and majorcancer charities were contacted in order to identifyunpublished and ongoing studies.
Inclusion criteria and screening process
Study inclusion criteria consisted of the following: (i)Sample – cancer patients/survivors (sample could includenon-cancer participants provided that findings with respectto cancer were clearly delineated); (ii) Topic – experiences ofworking life/return to work; (iii) Design: qualitative studiesof any kind; and (iv) English Publication.Two reviewers independently screened all records by
title and abstract before agreeing their selections. Fulltexts were then obtained and independently scrutinisedby two reviewers to confirm inclusion or exclusion.Discrepancies not resolved by the two reviewers weresubject to a consensus decision reached after consultationwith the rest of the team. Reference lists of all paperswere examined to identify studies not returned via theinitial searching.
Quality assessment
All included publications were subject to a global assess-ment of study quality drawing upon CASP [27] and COREQ[28] criteria: triangulation of data, rigour, reflexivity,credibility, relevance, clear exposition of ethical issues, and
methods of data collection and analysis. The nature and‘typology’ of the qualitative evidence was also assessedand reported [29] (Appendix B). In keeping with othermeta-syntheses [22], we included all papers assessed asbeing of medium quality or above.
Data extraction
Details about study design, aims, sample and studycontext, analytic framework and key findings wereextracted. One quarter were checked by a second memberof the research team for quality purposes. Both the rawdata (quotes) presented in the papers (first-orderconstructs) and the findings (authors’ interpretations) inthe form of themes or concepts (second-order constructs)were then extracted onto concept cards. This facilitatedthe scrutiny of the original findings and identification ofthe relationships between the papers.
Synthesis
Data synthesis was rigorous and multi-staged (Table 1).The first phase involved all members of the research team,who engaged in a process of reciprocal translation,whereby over 100 themes and concepts translated ontoconcept cards (second-order constructs) were examinedfor convergence (congruent synthesis) and divergence(refutational synthesis) to inductively derive a set ofpreliminary themes stemming from the data rather thanrepresenting a priori categories. First-order constructs werealso examined in this way, to ensure that the themes weregrounded in the primary data [26]. To add further rigour tothe process and explore the validity and sufficiency of thesepreliminary themes, two team members carried outsubsequent exercises: first-order constructs were content
Table 1. The multi-staged and iterative process involved intranslation and synthesis
Stage 1: Development of two sets of concept cards:
(1) First-order constructs (participants’ quotes)(2) Second-order constructs (author interpretations)
Stage 2: Relating and translating the concepts – clustering similar concepts togetherand translating the original concepts into reciprocating concepts from other papers
Stage 3: Developing third-order constructs
Stage 4: Establishing the validity and sufficiency of the third-order constructs:(1) First-order constructs were translated independently to create an inductive set of
themes, which were mapped onto the third-order constructs(2) Second-order constructs were then mapped onto third-order constructs
Stage 5: Refining and synthesising the third-order constructs using all of the above toproduce a conceptual model
M. Wells et al.
Copyright © 2012 John Wiley & Sons, Ltd. Psycho-Oncology (2012)DOI: 10.1002/pon
analysed and translated independently, the resulting themesmapped onto the existing third-order constructs, and thesecond-order constructs were also deductively mappedagainst the third-order constructs (Appendix C). Havingchecked that there were no contested or unsupportedconcepts, the team then further refined and synthesisedthe derived third-order constructs to produce a finalreconceptualization of findings across studies (line ofargument synthesis), which formed the basis of ourconceptual model.
Results
The search identified 13 233 titles; 69 publications wereretrieved in full (Figure 1). Twenty-one publications metall inclusion criteria; an additional four studies wereincluded following contact with authors and from articles‘in press’. The review therefore included 25 publications:19 focussed entirely on cancer and return to work, and sixexplored return to work as part of a broader analysis of
survivor experiences (see Appendix B for full details ofthe 25 publications).Studies consistently indicated that for people with
cancer, ‘work’ provides a range of psychosocial andmaterial benefits, contributing to enhanced self-esteem,financial security, positive social relationships and provid-ing an indication of one’s own abilities, talents and health,therefore defining and reinforcing a positive self-identity.The desirability, importance and subsequent interpretationof individuals’ experiences of ‘return to work’ is stronglyinfluenced by the ways in which cancer affects thesedifferent functions of ‘work’ and how well people are ableto re-engage in these functions after cancer. Work istherefore much more than paid employment, and returnto work after cancer is predominantly important as ameans of maintaining or regaining these benefits.Our final synthesis draws these complex aspects into a
heuristic model (Figure 2), revealing that the relationshipbetween individuals and their work is represented by fourkey elements: self-identity, meaning and significance ofwork, family and financial context, and work performance
Publications from search
n=13,233
Publications excluded
after screening titles/
abstracts
n=13,164
Number of full publications
retrieved
n=69
Publications excluded with
reasons
n=48
Number of
publications from
experts / in press
n=4
Number of publications
included
n=25
Wholly focused on work
n=19
Partially focused on work
n=6
Figure 1. Flowchart of included studies in qualitative review
Meta-synthesis of qualitative studies on return to work after cancer
Copyright © 2012 John Wiley & Sons, Ltd. Psycho-Oncology (2012)DOI: 10.1002/pon
and environment. These elements are inter-relatedand appear to be important irrespective of the cancerdiagnosis. The physical, psychological and practicalimplications of having cancer, undergoing cancertreatment and attending follow-up are super-imposed onthe already complex set of elements represented in themodel, causing shifts, uncertainties and adjustments inany or all of these four areas, and therefore definingor re-defining what ‘return to work’ means for eachindividual. This is a dynamic process; therefore, theprominence or importance of any one element of themodel and the inter-relationships between them may varyacross individuals, and even within the same individualover time. This means that there is inevitably someoverlap between the four elements, but for the purposes ofclarity, each is described in turn in the following sections.
Self-identity
Many survivors described a determination to return towork in order to re-establish a sense of their former selves.Work contributed a great deal to cancer survivors’ senseof identity, sometimes challenging and sometimessupporting it. Many survivors were very conscious ofchanges in their appearance, ability and self-confidenceat work. Their narratives illustrated the struggle anddetermination required to maintain their identity as areliable and useful employee, or to reconstruct or redefinethemselves through potential changes in employment.Respondents in one study drew heavily on discourses ofwork ethics and went to considerable lengths to portray
themselves as ‘hard workers’, often pitted against anunfair and unfriendly system. Unfortunately, the perceivednegative responses of colleagues prompted a vicious circle:survivors felt different and perceived that others saw themin a different and less complimentary light, which thenfuelled their own negative self-perceptions.Women tended to be very self-conscious of their
changed bodies and perceptions at work. They describedfeeling constantly and acutely aware of post-mastectomybodies or of being embarrassed by the personal natureand assumptions attached to, for instance, gynaecologicalcancers. Visible markers of chemotherapy treatment –such as loss of hair – were also seen to negatively ‘stamp’a cancer identity onto a person. Yet, some women talkedabout working as a way of confronting and re-adjustingto their altered bodies. Many saw in the cancer journeyan opportunity for growth and self-development, or‘crossroads in life’. However, even when cancer survivorsfelt they had reviewed their priorities and come tounderstand the challenges and limitations stemming fromdiminished capacity, sometimes they felt that others (family,friends and employers) found these changes difficultto accept.
Meaning and significance of work
In most studies, work was viewed as the default, providinga structure to everyday life and contributing to identity,self-worth and a sense of purpose. The disruption to orloss of this structure due to the physical, emotional orpractical demands of the cancer (as portrayed in Figure 2)
Appearance Physical ability
CANCER
Emotions Cognitive abilityOthers’ responses Limiting symptomsManaging treatment Managing appointments
RESPONSES
STRATEGIES
Figure 2. A conceptual model of the experience of cancer and work
M. Wells et al.
Copyright © 2012 John Wiley & Sons, Ltd. Psycho-Oncology (2012)DOI: 10.1002/pon
could threaten survivors’ well-being: causing financialburden, dislocation from normal life, and a loss of theself-esteem and social interaction gained through workinglife. Consequently, a strong theme was the notion of workas ‘normal’. During treatment, being able to work symbo-lised ‘not being ill’. Work was recognised as an importantsource of social interaction, and many felt isolated whenoff sick. Being at work, or simply being in contact withthe workplace during treatment, provided an importantsource of distraction and connection with the world.However, on returning to work, the ‘old normality’ was
rarely achieved. Survivors reported difficulties balancingwork and treatment demands. Physical, emotional andcognitive effects of treatments diminished their capacityfor work causing anxiety and feelings of inadequacy.Negative work experiences appeared to be heavilyinfluenced by the perceived attitudes (which were ofteninsensitive, ignorant or even stigmatising) and behaviours(including lack of support, not making allowances oraccommodating new needs, or even discrimination) ofcolleagues or managers.This mismatch and resultant negative experience
often led to a revision of the meaning of work and a re-evaluation of what really mattered in life, manifestingitself as shifting priorities over the course of treatmentand recovery. Commonly, the importance of work dimin-ished in relation to family and personal pursuits; survivorswho were initially determined to return to work sometimesbecame ambivalent towards their job soon after theyactually returned. Some survivors set new goals, such ashigher education, or considered alternative plans thatmight be more fulfilling. For others, work was viewedmore positively than before because the social aspects ofworking assumed greater importance. The ‘wake-up call’of surviving cancer, often combined with fears ofrecurrence, encouraged some survivors to aim higher –for example, younger cancer survivors talked of increasedmotivation to succeed in their work. More commonly,fears of recurrence and a recognition that ‘life is short’caused survivors to feel frustrated about spending theirtime working, rather than pursuing other goals suchas travel.
Family and financial context
Although cancer proved to be a time of reassessment ofaspirations and life course, issues of financial necessitywere still prominent. When sick pay or health insur-ance was exhausted, financial commitments sometimestrapped survivors into remaining in particular workroles. Even when survivors did not have to return towork for financial reasons, many still chose to go backto the same position in order to protect their benefits,seniority or ‘turf’, and to provide for both current andfuture lifestyle aspirations.The financial impact of cancer was highlighted in the
majority of studies. Reduced wages or unemploymentcombined with medical bills (in the US studies) presenteda serious challenge to family budgets. In the UK/NationalHealth Service (NHS) context, the gradual exhaustion ofsick pay combined with the additional costs of having can-cer (e.g. heating, travel) created a double burden. Attitudes
towards benefits systems were mixed, with some partici-pants reporting systems fair, accessible and easy to nego-tiate and with others reporting insensitive treatment,protracted claims and administrative errors.Attitudes of family members were also important,
sometimes having a negative effect on self-confidence.Loved ones could be seen as overly supportive or protec-tive, disapproving of return to work or suggesting thatsurvivors should expect exactly the same conditions asbefore. These attitudes were not always seen as helpfulbecause many survivors appreciated the normalcy ofworking life orwanted to change their roles or work patterns.
Work environment – relationships and performance
Positive experiences of working through or after cancerwere dependent upon the provision of good organisationaland/or interpersonal support. Organisational supportincluded work-related support provided by health careprofessionals (HCPs), social workers and occupationalhealth, and employers’ willingness and ability to makeadjustments to the workplace and job role (e.g. flexibleworking hours and shared workloads). Interpersonalsupport included informal personal and emotional supportprovided in the workplace (e.g. empathy, dignity), alongwith the actions and attitudes of co-workers. Contact withco-workers during and after treatment was frequentlypraised. Colleagues who had personal experience of cancerplayed a particularly important role in helping the newlyreturned survivor manage their symptoms and in generatinga greater understanding of the illness in the workplace.Studies commonly identified that the type of job (e.g.
manual or professional), the physical and emotionaldemands of the role, the size of the organisation and otherstructural elements were important contributing factors toa successful return to work. Papers from Europe and NorthAmerica suggested that employers’ responses to the recentintroduction of disability legislation had been positive.Adjustments included modifications to the workplace,working hours, duties, accommodation of hospitalappointments, load alleviation, provision of assistanceand changes in personnel. Flexibility (during and aftertreatment) was seen as crucial both to acclimatisation backinto work and to coping with fatigue. However, not alladjustments to job role were welcome – some studiesreported survivors having changes forced upon them bythe employer (to which they agreed out of fear of losingtheir job) or being forced by adverse physical effects tomodify work or cease employment.Survivors relied on the information and guidance of
their health care team for making decisions about return-ing to work, yet in almost all cases, such advice was feltto be lacking. Uncertainty about the role of HCPs in advis-ing about return to work prevailed, with some feeling thatthey were ‘bothering’ their doctor with questions aboutwork, or simply not knowing what to ask. Others fearedtheir physician might disclose medical information thatcould threaten their job. Data suggested that HCPsfrequently failed to meet the needs of survivors wantingto return to work. Survivors mentioned inflexibility ofhealthcare appointment systems, negative attitudestowards return to work and refusal to issue sick
Meta-synthesis of qualitative studies on return to work after cancer
Copyright © 2012 John Wiley & Sons, Ltd. Psycho-Oncology (2012)DOI: 10.1002/pon
certificates. Negotiating the employment/human resourcepolicies of their workplace was an additional challenge;many organisations lacked personnel specifically todeal with these tasks. Occupational health wellnessprogrammes in the workplace were seen as beneficial, yetthese were usually only available in larger organisations.Negative experiences appeared to outweigh positive
ones, arising not only from the absence of organisationaland interpersonal support but also from the presence ofnegative employer/work colleague attitudes, as previouslymentioned. Reports of discriminatory practices and offeeling stigmatised at work ranged from experiencing‘awkward silences’ or inappropriate gossip, to morespecific instances of sexual stigmatisation (gynaecologiccancers). Negative perceptions of how others saw themwere, however, more apparent than explicit reports ofunsupportive reactions or behaviour.
Responses and strategies
Survivors appeared to use four principal strategies to helpthem reintegrate into work after cancer: (1) communicationand negotiation with employers; (2) acknowledging andaccepting changed capabilities; (3) managing symptomsand rebuilding confidence; and (4) ‘working smarter’.Communication and negotiation were key to managing
return to work. Whereas some were reluctant to disclosetheir cancer diagnosis to protect their job and ‘non-cancer’identity, others believed in open communication withemployers and co-workers. They were seen as a valuablesource of emotional and instrumental support, forexample, in getting duties covered. For some, suchadvantages outweighed the potential uncomfortable lossof privacy. Those who chose to communicate openly alsorecommended frank communication with HCPs.Acknowledging changed capabilities was an important
pre-requisite for the successful self-management ofsymptoms and utilisation of supportive resources. Survivorswere often frustrated by their inability to return to full-timework following treatment, but their failure to recognise oraccept the limitations of their physical and psychologicalwell-being sometimes led to feeling overwhelmed as theystruggled to manage both symptoms and work demands.As a result of trying to put on a brave face, their abilityor willingness to access supportive resources wasoften inhibited.Being able to manage symptoms – physical, cognitive
and emotional – also appeared important to rebuildingself-confidence and feelings of reliability at work.Strategies for managing fatigue and cognitive problemsincluded checking work with colleagues, keeping moredetailed records and reducing self-expectations.Many participants ‘worked smarter’ after cancer, pacing
themselves, resting at work, taking days off when neces-sary, managing time, giving themselves flexibility and/orchoosing to concentrate on aspects of their jobs that bestutilised their strengths. Self-awareness was important to‘working smarter’, as survivors had to be prepared toacknowledge difficulties, seek support and often re-evaluatetheir attitudes and priorities in order to maintain physical andemotional well-being alongside employment.
Discussion
Our findings suggest that return to work is rarely seenas an end in itself. There is therefore a need to criticallyre-examine and redefine the concept of ‘return to work’and move to a more nuanced person-centred approach thatacknowledges the individual’s sense of identity [30] aswell as both the meaning and significance of work tothe individual, and the financial, family-based and work-based contexts and constraints that exist. Given the poten-tial benefits and challenges of returning to work[5,13,16,17], there is an urgent need to develop novelemployment-promoting strategies or policies [4] to supportcancer survivors. However, such interventions must recog-nise and be based upon a sound understanding of thecomplex interplay of social, clinical and work-related factorsthat influence patients’ workplace-related experiences andbehaviours [6] if the full benefits of work are to be accrued.This may mean re-focusing on supporting the achievementof survivors’ ‘work-related goals’ rather than assuming thedesirability of return to work as such.In supporting cancer survivors’ achievement of
work-related goals, we need to understand how themulti-dimensional experience of cancer disrupts andchallenges a number of fundamental aspects of the complexrelationship between an individual and their working life.Our conceptual model goes some way to providing such anunderstanding, and suggests that work-related goals mayrelate to financial issues, self-identity and/or relations withfamily or colleagues. It illustrates that success depends onshifts and adjustments in each aspect of what is alreadya complex set of factors at the individual (micro-),organisational (meso-) and societal (macro-) level. Themost effective strategies to achieve these goals are likelyto be multi-dimensional, addressing a number of thesecomponent areas, while simultaneously tailored to theindividual survivor’s life circumstances.Previous systematic reviews have identified factors
associated with a greater likelihood of not returning towork or being unemployed after cancer, includingphysical symptoms, longer sickness absence, receipt ofdisability benefits, having certain types of cancer (headand neck, breast cancer) and less accommodation andsupport in the workplace [14,31,32]. Work demand andability imbalances have been reported as another set ofchallenges. However, these reviews have tended topresent factors and mediators as discrete entities, ratherthan showing the inter-relationships and overlaps betweenthem. Although there are relatively few theoretical modelsof return to work as a process rather than just outcome,two recent reviews [31,32] have generated modelsillustrating the multiple influences of return to work,including survivor characteristics, disease-specific andtreatment-specific factors, functional ability, workdemands, work environment, psychosocial, economicoutcomes, and so on. Our model not only providesadditional support for the importance of these domainsbut also illustrates core concepts such as self-identity,which are not explicit in existing models, and showshow individual factors already identified might be linkedand related to provide a basis for the development ofinterventions. It is also important to note that both models
M. Wells et al.
Copyright © 2012 John Wiley & Sons, Ltd. Psycho-Oncology (2012)DOI: 10.1002/pon
have been generated from an analysis of quantitativeresearch in this area, reflecting concepts, which arealready established and easily measurable. In contrast,our model is inductively developed from qualitative dataand the direct words used by cancer survivors. Arguably,it therefore reflects more closely the values, meaningsand daily realities of those survivors’ experiences.
Strengths and limitations
This is the first systematic review and meta-synthesis ofthe qualitative literature on work incorporating all cancergroups. In drawing together a number of studies toidentify core concepts that appear to transcend the differentcontexts and patient groups involved, this meta-synthesisyields valuable insights for clinicians and HCPs working inthis area, and identifies a number of potential areas for futureresearch and intervention development.The broad scope of the synthesis has limitations.
Despite an attempt to include evidence of the experiencesof all cancer groups, the literature is skewed towardsfemale (primarily breast cancer) survivors. The inclusionof studies with mixed samples of patients is a strength,but finer distinctions in the experiences of these sub-groups were not generally detectable. Only one paper[33] explored the attitudes and experiences of cancersurvivors who remained on sick leave as well as thosewho had successfully returned to work. The findings ofthe synthesis suggest that the core concepts within themodel are relevant across groups, but further research isneeded to elicit differences in the distribution, frequencyand importance of these issues in cancer survivors with
different socio-demographic or clinical characteristics.Future studies should examine different sub-groups (e.g.employed/unemployed; men/women; diagnosis-specific,trajectory-specific and prognosis-specific time sincediagnosis) so as to identify distinctions and to providegroup-specific knowledge. Further longitudinal research isalso needed on the experiences of individuals over time, aswell as the perspectives of under-researched groupsincluding men with cancer, those who are self-employed ordo not return to work, people with advanced disease, familymembers and employers.
Conclusions
Our review and synthesis has highlighted substantial gapsin the theoretical underpinning and evidence base in theunderstanding of employment experiences of people withcancer. On the basis of the existing scientific literature, wehave produced a conceptual model that may guide futurestudies in this field. In addition, our model provides abasis from which meaningful assessment tools andsupport materials can be developed to support return towork; it illustrates the need for clinicians to consider andask about issues of identity, family and finance, meaningof work and work environment factors, in order to ensurea more person-centred approach to supporting theachievement of survivors’ work-related goals rather thanreturn to work per se. Finally, it underpins the need formulti-level and multi-faceted interventions, whichaddress individual and organisational factors influencingreturn to work.
Appendix A
Search terms used and databases searchedSearch architecture
1 exp neoplasms/ or cancer*.mp. or neoplasm*.mp. or carcinoma*.mp. or oncolog*.mp. or malignan*.mp. or tumor*.mp. or tumour*.mp. or leukemia*.mp. or sarcoma*.mp. or lymphoma*.mp. or melanoma*.mp. or blastoma*.mp. or radiotherapy.mp. or chemotherapy.mp. [mp= ti, ot, ab, nm, hw, ui, an, sh, tn, dm, mf, tc, id] (5 728 789)
2 return to work.mp. or exp employment/ or employment.mp. or exp unemployment/ or unemployment.mp. or unemployed.mp. or retirement.mp. or exp sick leave/ orsick leave.mp. or Sickness absence.mp. or exp absenteeism/ or absenteeism.mp. or exp work/ or exp occupations/ or exp occupational medicine/ or exp occupationalhealth/ or exp occupational health services/ or disability management.mp. or exp rehabilitation, vocational/ or occupation*.mp. or rehabilitation/ or vocational*.mp. orwork ability.mp. or work capacity.mp. or work activity.mp. or work disability.mp. or work rehabilitation.mp. or work status.mp. or work retention.mp. or workability.mp. or employability.mp. or employable.mp. or employee*.mp. [mp= ti, ot, ab, nm, hw, ui, an, sh, tn, dm, mf, tc, id] (1 104 186)
3 ((attitude/ or cluster sampl$.mp. or constant comparative method.mp. or content analysis.mp. or discourse analysis.mp. or ethnographic research.mp. or ethnologicalresearch.mp. or ethnonursing research.mp. or exp patients attitudes/) and perceptions/) or exp Attitude/ or exp Research Methods/ or field stud$.mp. or focus group$.mp.or Focus Groups/ or life experience$.mp. or nursing methodology research.mp. or Nursing Methodology Research/ or observational method$.mp. or phenomenologicalresearch.mp. or phenomenology.mp. or phenomenology/ or purposive sample.mp. orQualitative Research/ or qualitative stud$.mp. or qualitative validity.mp. or questionnaire/or Questionnaires/ or theoretical sampl$.mp. (1 246 184)
4 ethnonursing.af. or ethnograph$.mp. or phenomenol$.af. or life stor$.mp. or women$ stor$.mp. or (emic or etic or hermeneutic$ or heuristic$ or semiotic$).af. orparticipant observ$.tw. or (social construct$ or postmodern$ or post-structural$ or post structural$ or poststructural$ or post modern$ or post-modern$ or feminis$ or interpret$).mp. or (action research or cooperative inquir$ or co operative inquir$ or co-operative inquir$).mp. or (humanistic or existential or experiential orparadigm$).mp. or (field stud$ or field research).tw. or human science.tw. or biographical method.tw. or qualitative validity.af. or theoretical sampl$.af. or focus group$.af. or (account or accounts or unstructured or open-ended or open ended or text$ or narrative$).mp. or life-world.mp. or life world.mp. or conversation analys?s.mp. or personal experience$.mp. or theoretical saturation.mp. or lived experience$.tw. or life experience$.mp. or cluster sampl$.mp. or theme$.mp. or thematic.mp.or categor$.mp. or observational method$.af. or questionnaire$.mp. or content analysis.af. or thematic analysis.af. or constant compare$.af. or narrative analys?s.af. orheidegger$.tw. or colaizzi$.tw. or speigelberg$.tw. or manen$.tw. or kaam$.tw. or merleau ponty$.tw. or husserl$.tw. or giorgi$.tw. or foucault$.tw. or glaser$.tw.[mp= ti, ot, ab, nm, hw, ui, an, sh, tn, dm, mf, tc, id] (2 875 281)
5 (purpos$ adj4 sampl$).af. or (strauss$ adj2 corbin$).tw. or (grounded adj (theor$ or study or studies or research or analys?s)).af. or (data adj1 saturat$).tw. (35 918)6 3 or 4 or 5 (3 439 877)7 1 and 2 (64 973)8 6 and 7 (13 786)Databases searched:Medline, Embase, CinAHL, BNI & Archive, ASSIA, SSCI, PsycINFO and Cochrane Library
Meta-synthesis of qualitative studies on return to work after cancer
Copyright © 2012 John Wiley & Sons, Ltd. Psycho-Oncology (2012)DOI: 10.1002/pon
App
endixB
Tab
leof
stud
iesinclud
edin
themeta-synthe
sis
Stud
yCou
ntry
Participa
nts
Qua
lity
Typ
olog
yaDesignan
drecruitm
ent
Focu
s
Amiret
al.[5]
UK
41mixed
diagno
ses3yearspo
st-
treatm
ent
High
Them
aticandconceptual
Exploratory;telephon
einterviews;participants
recruitedfro
mcancer
intelligence
service
Motivations,barriersandexperiences
ofreturningto
workintheUK/NHScontext
Ashing-Giwaet
al.[34]
USA
20Latinawom
enwith
cervical
cancer
Medium
Them
aticandconceptual
Focusgrou
psinlow-incomecommunities;recruited
from
community
practices
Partialfocuson
RTW
Broadexplorationof
experiences
andHRQ
OL-
related
concerns
ofLatinacervicalcancersurvivors
(ofw
hich
work-related
concerns
areon
efactor)
Ashing-Giwaet
al.[35]
USA
26Latinawom
enwith
breast
cancer,lym
phoe
dema
Medium
Them
aticandconceptual
Focusgrou
psinlow-incomecommunities;recruited
from
community
practices
Partialfocuson
RTW
Broadexplorationof
survivorshipexperiences
ofLatinabreastcancer
survivorsincludinganalysisof
work-relatedfactors
Bennettet
al.[17]
New
Zealand
68mixed
diagno
ses(48%
breast)
<24
mon
thspo
st-diagnosis
Medium
Them
atic
Sampledraw
nfro
mnatio
nalsurvey;questio
nnaire
with
open-ended
‘qualitative’questio
nsPartialfocuson
RTW
Changes
inem
ploymentandho
useholdincome
aftercancer
diagno
sisBerryet
al.[36]
USA
19men
andwom
enwith
genitourinarycancers
High
Interpretive
Exploratorylongitudinalstudy;unstructured
interviewsusinggrou
nded
theo
ry;recruitedfro
mclinics
Exploringtheexperienceof
RTW
aftercancer
with
specificfocuso
nprocesseso
fcom
municationwith
employer
andsocialsuppo
rtatwork
Boykoffeta
l.[37]
USA
74W
hite
andAfricanAmerican
wom
enwith
breastcancer
>1year
post-treatment
High
Them
atic
Exploratorypilot;focusgrou
psandinterviewswith
participantsrecruitedthroughflyersat
wellness
centresandclinics;templateanalysis
Partialfocuson
RTW
Effectsof
chronicsymptom
s/sid
e-effects(esp.
cognitive
impairm
ent)on
wom
en’sRT
WCarteret
al.[38]
USA
25wom
enwith
breastcancer,
lymphoe
dema,>5yearscancer
free
High
Interpretive
Exploratoryphenom
enological;in-depthinterviews
with
paradigm
case
study
Exam
pleof
anunsuccessfu
lRTW
experienceina
paradigm
case
Ferrelleta
l.[39]
USA
Wom
enwith
ovariancancer
(74
itemsof
correspo
ndence
toan
ovariancancer
newslette
r)
Medium
Them
aticandconceptual
Ethnographicwrittendata
collected
through
newslette
rsupportnetwork
Partialfocuson
RTW
Broadexplorationof
socialwell-being
ofwom
enwith
ovariancancer
ofwhich
employmentand
financialissuesison
efactor/th
eme.
Frazieret
al.[40]b
USA
73wom
enwith
gynaecological
cancer
post-diagnosis
High
Them
aticandconceptual
Focusgrou
psandquestio
nnaires;participants
recruitedthroughclinics
Identifying
potentialinterventions
throughanalysisof
needsand
challengesfaced
bywom
enreturningto
workat3stages
ofcancer
diagno
sis/treatm
ent
Frazieret
al.[9]
bUSA
73wom
enwith
gynaecological
cancer
post-diagnosis
High
Them
aticandconceptual
Focusgrou
psandquestio
nnaires;participants
recruitedthroughclinics
Explorationof
therelatio
nshipbetween
employmentand
HRQ
OLam
ongstgynaecological
cancer
survivo
rsFrazieret
al.[41]b
USA
73wom
enwith
gynaecolological
cancerspo
st-diagnosis
High
Them
aticandconceptual
Focusgrou
psandquestio
nnaires;participants
recruitedthroughclinics
Primarily
metho
dologicalfocus
butincludes
original
empiricalmaterialinadditio
nto
Frazier(2009,
2009b)
Grunfeldet
al.[42]
UK
55wom
enwith
gynaecological
cancers<
4weekspost-tre
atment
High
Them
aticandconceptual
Semi-structuredinterviewsandfollow-upinterview
12mon
thslater;framew
orkanalysis
Changes
inworking
patte
rnsover
timeaftercancer
diagno
sisJohnsson
etal.[33]
Sweden
16wom
enwith
recurrence
free
breastcancer;
Medium
Topicaland
them
atic
Unstructuredinterviewsandnarrativeanalysis;
purposivesamplefro
mtrialparticipants
Factorsassociated
with
asuccessfu
lRTW
(breast
cancer
survivors)
Kennedyet
al.[49]
UK
29wom
enwith
breastcancer
<10
yearspo
st-diagnosis
High
Con
ceptual
Exploratoryinterviewsandfocusgrou
ps;sam
ple
recruitedfro
msupportgrou
psDecision
-makingfactorsandexperiences
ofRT
Waftercancer,effectsof
cancer
onRT
WMainet
al.[16]
USA
28mixed
High
Them
aticandconceptual
Semi-structuredinterviews;sampleidentified
from
medicalrecords
Motivations,influences
andexperiences
ofRT
Waftercancer.
Maunselleta
l.[43]
Canada
High
Them
aticandconceptual
Exploratoryunstructured
interviews
M. Wells et al.
Copyright © 2012 John Wiley & Sons, Ltd. Psycho-Oncology (2012)DOI: 10.1002/pon
13wom
enwith
breastcancer
post-diagnosis
Negativeexperiences
andprob
lemson
RTW
faced
bywom
enbreastcancer
survivors
Muniret
al.[44]
UK
13wom
enwith
breastcancer
1–10
yearspo
st-treatment
High
Them
atic
Semi-structuredinterviewsandfocusgrou
ps;
templateanalysis;
recruitedfro
msupportgrou
psInvestigationof
wom
en’saw
areness/perceptio
nof
cognitive
changesandworkability
Muniret
al.[45]
UK
31femalebreastcancer
patients
Medium/high
Them
atic
Semi-structuredinterviews,HCPinterviews;
validationquestio
nnaires;recruitedfro
mho
spital
clinicsduringtreatm
ent
Pilotinvestigationinto
interventio
nsrelatedto
perceivedcognitive
prob
lemson
RTW
Nachreineret
al.[46]
USA
7wom
en(breastn=4)
lessthan
1year
afterdiagno
sisHigh
Them
aticandconceptual
Focusgrou
pswith
conveniencesamplefro
mon
cology
clinics
Factorsassociated
with
asuccessfu
lRTW
Nilssonet
al.[47]
Sweden
23femalebreastcancer
patients
between3and12
monthsp
ost-
treatment
High
Conceptualand
interpretive
Focusgrou
psandcontentanalysis;
recruitedfro
mlarger
coho
rtstudy
Wom
en’sRT
Wexperiences
with
socialinsurance
staff,e
mployers,colleagues,HCPs,familyandfriends
Parson
set
al.[48]
Canada
14men
andwom
enwith
osteosarcomaduringtreatm
ent
High
Conceptualand
interpretive
Narrativemetho
dology;interview
s;recruitedfro
mho
spitalclinics
Cancer’aswork’andexperiences
ofRT
Wof
youngerosteosarcomasurvivors
Rasm
ussenet
al.[6]
Denmark
23mixed
diagno
ses(10men,13
wom
en)
High
Conceptualand
interpretive
Ethnographic;participantob
servationand
longitudinalinterview
sTh
echanging
meaning
ofworkandworking
lifefor
cancer
survivorsover
time
Sempleet
al.[49,50]
UK
10men
andwom
enwith
head
andneck
cancer
6–12
mon
ths
post-treatment
High
Them
aticandconceptual
Semi-structuredinterviews;recruitedviaclinic
Partialfocuson
RTW
Broadexplorationof
changesandchallenges
topatientslife
styles
followingtreatm
entfor
HNC(of
which
workanddayto
daytasksison
ethem
e/factor)
Wilm
othet
al.[51]
USA
16militarywom
enwith
vario
uscancers,3–
12mon
thsafter
diagno
sis
High
Con
ceptual
Exploratorylongitudinal;semi-structuredinterviews;
grou
nded
theory;recruitedfro
mmilitaryon
cology
clinics
Balancingdemands
andexpectations
ofem
ployer
with
psycho
socialneedsandphysicaldemands
ofilln
ess
Yarker
etal.[52]
UK
26men
andwom
enwith
mixed
diagnoses<
3yearspost-d
iagnosis
High
Con
ceptual
Semi-structuredtelephon
einterviewswith
participantsrecruitedfro
mcancer
supportgroups
Roleof
communicationandsupport(overtim
e)in
RTW
followingtreatm
ent
RTW
,returnto
work;HRQOL,
health-related
quality
oflife;HCP,
health
care
profession
al.
a Top
icalsurvey;thematicsurvey;con
ceptualthematicdescription;
interpretiveexplanation.
b AllthreeFrazierpublications
pertainto
thesamestudyandsamplebutpresentdifferent
findings.
Meta-synthesis of qualitative studies on return to work after cancer
Copyright © 2012 John Wiley & Sons, Ltd. Psycho-Oncology (2012)DOI: 10.1002/pon
App
endixC
Prelim
inarythird-or
derco
nstruc
tsThe
mes
andsub-them
es
E=ev
iden
cedin
1st-or
deran
d/or
2nd-or
derco
nstruc
tsT=them
atic
leve
levide
nce
Amir½5�
Ashing-Giwa½33�
Ashing-Giwa½34�
Bennett½15�
Berry½35�
Boykoff½36�
Carter½37�
Ferrell½38�
Frazier½9�
Frazier½39�
Frazier½40�
Grunfeld½41�
Johnsson½32�
Kennedy½49�
Main½14�
Maunsell½42�
Munir½43�
Munir½44�
Nachreimer½45�
Nilsson½46�
Parsons½47�
Rasmussen½6�
Semple½48�
Wilmouth½50�
Yarker½51�
Workenvironm
ent–
relationships
andperfo
rmance
Organisationalsupport
Workplace
accommod
ations/
mod
ificatio
nsprovided
(inaccordance
with
legislatio
n)
EE
EE
ET
TE
EE
TE
EE
E
Experiencingdiscrim
ination/disadvantage
(feelingguilty/coercedto
return
orleave,
forced
changes,refusedmod
ifications,
unfairdism
issal,
fearof
losingjob)
TE
EE
EE
EE
EE
ET
EE
E
Attitudesand(lack
of)work-related
guidance
andsupportfro
mHCPs,
socialworkersandOH
TE
EE
TE
TT
TT
TT
TT
Organisatio
nalcom
municationbetween
HCPs
andem
ployers/managem
ent
E
Interpersonalsupport
(Con
sistent)person
alandem
otional
supportof
employersandcolleagues
duringsickleaveandon
RTW
(inclu
ding
well-m
eaning
butm
isguidedsupport)
EE
EE
EE
EE
ET
TT
EE
TE
ET
Lack
ofsupport/communication–
insensitive,stigmatising,in
sincere
orshort-
lived
supportfrom
employers/colleagues
ET
TE
TE
TE
EE
ET
EE
EE
T
Perform
ance
Diminish
edcapacity
–physical/functional
EE
EE
EE
EE
EE
EE
TE
TE
EE
EDiminish
edcapacity
–mentalhealth,
stressthreshold
EE
EE
ET
E
Diminish
edcapacity
–cognitive
EE
TE
EE
TT
EEm
otionalstrainof
ongoingbattlewith
cancer
EE
EE
E
Diminish
edconfidenceandself-esteem
,fru
stratio
nandfeelings
ofinadequacy/
limitatio
n(re:em
ployability)
EE
ET
EE
EE
ET
EE
E
Disclosure
choices,privacyand
confidentialityissues
EE
TE
EE
TT
EE
E
Con
flictingdemands
oftreatm
entand
work–sickleaveandattendance
obligations
EE
EE
TE
EE
EE
EE
EE
EE
TE
EE
E
M. Wells et al.
Copyright © 2012 John Wiley & Sons, Ltd. Psycho-Oncology (2012)DOI: 10.1002/pon
Worryingabou
tho
wem
ployers/
colleaguesperceive
youandmanaging
theirexpectations
Acceptingandmanagingsymptom
sand
rebuildingself-confidence
TE
TE
Com
municatingandnegotiatingneeds,
managingchange,designing
person
alstrategies
tocope
TE
TT
ET
TE
T
Meaning
andsignificanceof
work
Normality,structure,‘default’
EE
EE
EE
EE
ET
Achievement,validation,agoalto
return,
markerof
health/well-being
EE
EE
TT
Socialinteraction–support,belonging
EE
EE
EE
EE
Socialinteraction–alleviationof
boredo
m/isolatio
nE
EE
EE
EE
Therapeutic
value–distractionfro
mcancer
EE
EE
EE
EE
EE
Econ
omicnecessity
orprotectio
nof
current/futurelifestyleaspiratio
nsE
EE
EE
EE
EE
E
Re-evaluationof
work–lifebalance(jo
b/career
change
orretirem
ent,reducing
hoursetc.)
TE
EE
EE
EE
TE
EE
EE
EE
Findingnew
activities/m
eaning
inlife
whenRT
Wisno
tpo
ssible
EE
EE
ET
ET
Family
andfinancialcon
text
Sick
leave/medicalinsuranceissues–
negotiatingbenefitssystem
sE
EE
TT
EE
EE
Financialpressures
andfuture
financial
security
EE
EE
ET
TE
EE
E
Anxiety/stress(cancerrecurrence,
career,financial)
EE
TE
EE
EE
EE
EE
TE
EE
TE
Family
supportandattitudes
offamily
mem
bers
EE
EE
ET
EE
EE
EE
Familialrespo
nsibilities
EE
EE
EE
Self-identity
Alteredbo
dies
–em
barrassm
ent(esp.
sexualstigm
a),con
frontingsocialnorms
ofbeauty/appearance,self-acceptance
EE
EE
EE
EE
EE
EE
Identityas
a‘worker’
EE
ET
EE
EE
EE
TT
EIdentityas
a‘cancerpatient/survivor’
EE
ET
Evolutionof
self-identity–
reinterpretatio
nof
selfandrevisio
nof
future
–new
aspiratio
ns
EE
TE
EE
EE
EE
TT
Beingtreatedwith
dignity/hum
anity
(or
theexpectationof
beingso)
EE
EE
TE
Perceiving
selfas
different
(tobefore,to
others)
EE
EE
EE
EE
EE
EE
E
Meta-synthesis of qualitative studies on return to work after cancer
Copyright © 2012 John Wiley & Sons, Ltd. Psycho-Oncology (2012)DOI: 10.1002/pon
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