Work or welfare after cancer? Explorations of identity and stigma

Introduction

The lived experience of cancer has been the focus of much medical sociological investigation and continued improvements in cancer treatment have resulted in increasing numbers of people living with, and surviving, the disease (Siegel et al. 2012) requiring greater focus on the social consequences of cancer (Cayless et al. 2010). Two theories have particular applicability in elucidating the social ramifications of cancer. The first is Bury's (1982) concept of biographical disruption, which illustrates how taken-for-granted assumptions and behaviour, rethinking individual biography and self-concept and mobilising resources are interlinked and socially structured. Social class and occupational type are key factors influencing the availability of resources and the ability to compensate for the effects of illness and disability. The second is the recent reframing of health-related stigma (Scambler 2004, Scambler 2009: 441) that focuses on the ways in which shame and blame are ‘always embedded in social structures of class, command, gender, ethnicity’. Shifting health-related stigma beyond its emphasis on the disease itself provides considerable explanatory leverage in current debates about the relationship between cancer as a chronic illness, employment and welfare that we explore in this article. Employment disruption is a major factor in the experience of cancer and may require recourse to the welfare system, and it is now occurring in the context of welfare retrenchment and increasing inequalities (Bambra and Smith 2010).

This article is concerned with the connections between cancer and employment; specifically decisions, choice and constraints around returning to work or remaining outside the labour force. We show, using longitudinal qualitative data, that for those of working age the consequences of a break in employment is a significant aspect of biographical disruption involving rethinking roles as a worker, producer and contributor to society and influencing the individual's ability to mobilise resources during and beyond cancer treatment. We suggest that an important part of the cancer trajectory is how individuals with cancer negotiate their status as a worker, and how this is influenced by the benefits system, stigma about claiming, welfare reform and the wider economic climate. An emphasis on the social impact of cancer, particularly on employment and its financial consequences, leads to considering power relations and ‘structural conditions that produce exclusion from social and economic life’ (Parker and Aggleton 2003: 15).

Cancer, inequalities, work and welfare

Higher rates of most cancers are found among people from lower occupational groups (Rowan 2007) and estimates suggest that in the UK 80 per cent of cancer-affected households experience loss of income and, on average are around £570 ($954, €691) a month worse off as a result of a cancer diagnosis (Macmillan Cancer Support 2013). The financial difficulties experienced may be due to a temporary or permanent loss of earnings as well as the additional costs associated with cancer, and depend on cancer type, occupation and wealth (Syse et al. 2008). Loss of income may therefore constitute a significant factor in addition to dealing with diagnosis and treatment.

In the UK there is very limited knowledge of experiences of returning to employment following cancer (Amir et al. 2008). Elsewhere most working-age cancer survivors do return to work but jobs with high physical demands and unaccommodating employers are particular barriers to doing so (Spelten et al. 2002). A significant number who return to work reduce hours or make other changes, such as changing from physical work or taking lower waged jobs (Steiner et al. 2008).

The timing of the illness in relation to the life course has significant potential to influence employment prospects and income. Different pressures play out depending on when illness occurs. People early in their career may find it difficult to gain employment thereafter; those aged over 50 years may find re-entry into the labour force problematic as a result of the dual impact of ill health and age discrimination (Kemp and Davidson 2010). Further constraints are imposed by the economic climate and the type of financial support offered by the state to individuals with long-term illness. Between-country variation in health and social security systems influences the work return rate. Inequalities are more pronounced in liberal welfare states than in social democratic systems indicating that ‘there are policy mechanisms available to enhance the employment of those with ill health as well as to reduce the inequalities in health related worklessness’ (Bambra 2011: 162).

The UK social security system for people who are sick and disabled has recently undergone significant changes (Bambra and Smith 2010). The employment support allowance was introduced in 2008 to promote paid employment for sick and disabled people. The intention was to shift from a culture of invalidity to employability (Kemp and Davidson 2010). In practice, the system makes a distinction, by means of a stringent work capability assessment, between those who can and cannot work, and pays out different amounts of benefit that is significantly less for those deemed capable of work (Garthwaite 2011). Moreover, it declares a much higher proportion of applicants fit for work (66 per cent) than were deemed to be able under the previous system (Grover and Piggott 2013). Popular concerns that most sick and disabled claimants are fraudulent, despite the fact that the UK eligibility tests are regarded as being among the most stringent in the developed world, have fuelled the stigma attached to sickness-related benefits. Furthermore, ever-increasing stringency tests where being a claimant can involve, ‘effort, anxiety, insecurity, felt stigma and loss of self-esteem, affecting welfare recipients profoundly and negatively in ways that are largely absent from public discourse’ (de Wolfe 2012: 618). This negative portrayal of benefit claimants is pervasive and has been criticised by organisations representing the interests of sick and disabled people.

Income maintenance during times of ill health is important, yet there has been little research ‘exploring the interactions between ill-health and the experience of receiving welfare benefits’ (Bambra and Smith 2010: 79), particularly on how this might impact on health, wellbeing and engagement with the formal economy. Recent longitudinal quantitative research has shown that sickness benefit recipients had significantly worse health than the general population, and that this changed little over an 18-month period. Qualitative data from the same study reinforced the finding that ill health is constant (Garthwaite et al. 2014). In this article we use longitudinal qualitative data to explore how experiencing the fluctuations of cancer treatment impacts on negotiations over welfare, employment and returning to work.

The opportunity for this exploration arose from a collaboration between local government and Macmillan Cancer Support, a major charity that, in 2008, funded the appointment of three welfare rights advisors to provide an advice service for people with cancer across County Durham in north-east England, aimed at assisting people to claim their benefit entitlements. In doing so, we consider how the ability (or lack thereof) to mobilise resources impacts on identity and we further explore the dimensions of stigma associated with ill health, unemployment and receiving welfare benefits.

Methods and participants

County Durham has a population of 504,900, around one-third of whom live in the most deprived areas of England. Life expectancy and early deaths from cancer are significantly worse than the average for England (Association of Public Health Observatories and Department of Health 2009).

The welfare rights advice service comprised a full personal finance and welfare benefit eligibility assessment, followed by assistance to claim entitlements, follow-up work and representation at appeals and tribunals (for initially rejected claims). Freely accessible, referral was by self or by health, social care or voluntary (charity) sector professionals and the service was delivered primarily via home visits but also in National Health Service and voluntary sector premises and by e-mail and telephone, where appropriate.

The required ethical and governance approvals were obtained prior to fieldwork. A total of 44 participants were purposively sampled from all service users (N = 259) who agreed to be contacted for a research interview at their initial welfare rights consultation (Moffatt et al. 2012). Inclusion criteria to achieve maximum variation sampling were age, gender, cancer type and residence at a postcode-derived index of areas of multiple deprivation (Department for the Environment, Transport and Regions 2000). Those who were seriously unwell were not invited for interview. Semi-structured interviews were undertaken in participants’ homes, ranging in length from 22 to 100 minutes and were digitally recorded and transcribed in full. Of the total, 23 participants were below state pension age, and they comprise the sample for this study.

Following close reading and re-reading of the transcripts, a coding structure was developed and applied to the data using NVivo Vers. 7 (2007). Each interview was then coded line by line, but also examined holistically on a case by case basis. Constant comparison and deviant case analysis were used to enhance internal validity (Barbour 2001). A further analytical stage involved charting the data using the framework method so that participants’ circumstances, experiences and views could be compared within and across themes, using a framework derived from their own accounts (Ritchie and Lewis 2003).

Initially interviews were undertaken in 2009 with 23 people of working age, ranging in age from 32–62 years of age. At the time of the first interview, two participants were employed full time, three employed part time, one was redundant (seeking work) and seven were off work short term, intending to return to work at the end of their treatment. One participant, who had taken time off work to care for her partner, also intended to return. The remaining nine were off work long term as a result of ill health. Data analysis revealed a diverse range of personal experiences, social circumstances and employment trajectories, which prompted us to undertake follow-up interviews with 12 of the original interviewees (Table 1), selected on their willingness to take part in a further interview and where a change in employment circumstances was expected. While the themes are derived from all 23 accounts, we focus primarily on the 12 participants who we interviewed on one or two further occasions up to 16 months after their initial interview. These accounts therefore emphasise the long-term and fluctuating nature of their health and their relations with employment and the welfare system following a cancer diagnosis.

The analytical categories derived from the longitudinal data centred on: (i) the impact of cancer on the participant's ability to work; (ii) individuals’ management of employment through the cancer trajectory; (iii) work as a way of repairing the disruption caused by cancer diagnosis and treatment and (iv) the corollary, long-term reliance on welfare benefit for those unable to return to work. The analysis was informed theoretically by the concept of stigma. Initially, grounded in the data, narratives emphasised the felt stigma associated with recourse to welfare benefits. This was developed further to incorporate structural stigma (Hatzenbuehler and Link 2014) which, we argue, influenced the participants’ interactions with the welfare system and employment opportunities.

Findings

Discussion

Cancer can significantly impact on employment and income, precipitating cliff edge moments of income reduction at various points throughout the illness trajectory. For our participants, employment issues were actively negotiated, particularly decisions about the timing and process of returning to work, but negotiating the welfare system was more difficult. The assistance offered by the welfare rights service not only facilitated access to welfare entitlements, but acted as a crucial set of practical resources that helped in the face of an altered situation (Bury 1991). Scambler's conceptualisation of social assets as applied to welfare rights services targeted at people over state pensions age (Moffatt and Scambler 2008) allows us to discern how addressing a reduction in material assets can influence individuals’ social, psychological and cultural assets or capital. The need for individuals to mobilise a range of resources in repairing the disruption caused by ill health should not be underestimated. Narratives of people with cancer described in this article demonstrate the difficulties of doing so unaided.

Return to work, for those who were able to, did assist with the process of repairing the disruption associated with cancer by reinforcing their identity as a survivor as well as providing financial and social rewards (Peteet 2000). Phasing return and workload adjustment was crucial (Kemp and Davidson 2010). Relying on benefits appeared to compound the disruption wrought by cancer and invoked a considerable amount of identity work. The felt stigma that participants experienced was resisted by narratives of hard work and lifetime contributions to social security, citizenship narratives and the belief that cancer was due to bad luck. However, in the current context of welfare retrenchment, austerity and higher proportions of the labour force employed in low paid/zero hours jobs (Roberts 2014), it is important to move beyond accounts of stigma that focus on individual perceptions and the consequences for social interactions. Instead the structural dimensions of stigma and discrimination, as they relate to ill health, welfare and unemployment need to be emphasised. Not being able to return to work following treatment symbolised the profound impact of the disruption personally, socially and materially. This appeared to be compounded by the impact of having to have recourse to the welfare benefits system, placing the cancer sufferer in a stigmatised category in the UK – both being out of work and claiming sickness benefits (Baumberg et al. 2012, Garthwaite et al. 2013). The participants talked about their shame at being reliant on benefits, and their fears or the reality of being labelled as scroungers or workshy. We also saw how changing administrative definitions of illness and capacity to work, driven by political ideology, impacted on the lives of those who were reliant on sickness benefits and could, without any change in their health status, place an individual in a different benefit category, with considerable consequences for their income and employment.

We suggest that the term structural stigma offers useful explanatory potential by linking individual experiences of ill health, welfare and (un)employment with wider structural factors. In this conceptualisation, individual stigma and structural forms of stigma are not treated in isolation, and the role of power and status in causing, maintaining and perpetuating structural forms of stigma becomes the focus (Hatzenbuehler and Link 2014). In the case of our participants, these are the shifting political, social and cultural contexts of welfare.

A clear link between individual level stigma and structural stigma is demonstrated by these participants’ narratives, many of whom went to considerable lengths to prove that their absence from work due to illness was genuine because of the felt stigma associated with being out of work and the widespread enacted stigma towards people perceived to be illegitimately ‘on the sick’. As elsewhere, in the UK, powerful political interests have been reconfiguring welfare protection for sick and disabled people. Increasingly, reliance on welfare structures has become stigmatised through emotive discourses perpetuating the view that benefit reliance has prevented people from taking up work. Such an assessment does not hold up against the strong desire to re-enter the labour market and the work ethic narratives that we and others (Shildrick et al. 2012) have heard. On the contrary, access to state welfare during the treatment period was indispensable and an aid to rejoining the workforce; for those unable to re-enter paid employment because of ill health, long-term reliance on benefits was essential. The belief that paid work is always in the best interests of an individual and that any type of employment is better than none does not necessarily stand up to scrutiny, particularly for people with chronic ill health (Shildrick et al. 2012). While work is generally good for health and wellbeing, the type and quality of the work available matters; precarious, poorly paid work in bad conditions is associated with poor health (Baumberg 2011).

Linking individual and structural stigma provides considerable explanatory power in understanding why reliance on state welfare while individuals are ill and unemployed has become such a stigmatised status. Recent developments in the exercise of stigma power exploring how stigma processes achieve their aims draw on Bourdieu's (1987) conceptualisation of symbolic power, ‘the capacity to impose on others a legitimised vision of the social world and the cleavages within that world’ (Link and Phelan 2014: 25). Such symbolic power is exercised by the way that stigmatisers depict the value and worth of those whom they stigmatise and those who ‘are disadvantaged by the exercise of symbolic power are often influenced, without realising it, to accept cultural assessments of their value and rightful (lower) place in the social order’ (Link and Phelan 2014: 25).

Our narratives are replete with examples of the way in which stigma power operates at the individual level, but at a more macro level we point towards two key mechanisms by which the stigma associated with welfare is perpetuated. This is produced, firstly, by shaping public attitudes. In the public discourse there has been a discernible shift in the language and content of negative coverage of incapacity benefit recipients through concerns about fraud coupled with a strong focus on claimants’ lack of work aspiration (Kemp and Davidson 2010). Being viewed as an undeserving claimant is the key form of benefit stigma (Garthwaite et al. 2013). The rise in the scrounger discourse intensifies the stigma associated with the receipt of health-related benefits. Nevertheless, the commitment to work is not dissimilar between those who do and do not return to work following sickness benefit claims. Being out of work and on sickness benefit is related to the number of health problems that an individual has, as well as labour market demand-side factors (Kemp and Davidson 2010).

Secondly, there is the ‘enduring political anxiety’ (Williams 2010: 182) over incapacity payments that have been the subject of numerous social policy debates and institutional practices over many years. Considerable geographical variation in claimant rates exists, with much higher levels in areas formerly associated with heavy industry and manufacturing, implicating the labour market, global economic restructuring and successive government policies as important structural factors in the differential uptake of state welfare (Qureshi et al. 2014). North-east England has the highest regional unemployment rate, at 10 per cent compared to the overall UK rate of 8 per cent (Office for National Statistics 2013). People with particularly poor employment prospects following cancer are those with few educational qualifications, a history of manual work and older age.

Williams (2010: 195) writes persuasively about the, ‘loss of meaning and identity in whole regions and their communities’ and the extent to which individuals in these communities have become, in effect, highly stigmatised through a combination of economic decline and high levels of ill health and incapacity. The policy solution has been to target workless individuals, ignoring structural factors such as the state of labour markets and multiple disadvantage (Bambra 2011). Successive welfare reforms have increased the stringency of fitness for work criteria and claimants are now separated into subgroups depending on ‘medicalised perceptions of their sickness and/or impairment, thus reviving old discussions of ‘deserving’ and ‘undeserving’’ (Garthwaite 2011: 371). Furthermore, the assumption that contemporary labour markets are more conducive to the employment of people who are sick or impaired is mistaken; contemporary target-driven and flexible employment cultures are more demanding of good health (Grover and Piggott 2010) than traditional stable employment practices.

This is a relatively small-scale study set in a region of England that has over the past 30 years seen its traditional industries disappear and is now suffering the effects of the recent recession coupled with austerity measures. However, due to the pervasive stigma surrounding ill health-related welfare, it is credible that our participants’ experiences would be at least familiar to those experiencing cancer elsewhere in the UK.

For once, the policy implications are relatively straightforward. People with cancer, and arguably those with other chronic health conditions, require more, not less assistance to claim benefit entitlements. Such a rights-based approach to claiming welfare entitlements is successful in increasing incomes and wellbeing (Allmark et al. 2013, Moffatt et al. 2012). This type of advocacy could be regarded as an upstream intervention (Whitehead and Popay 2010) were it not for the fact that even further upstream, government changes to the uprating of benefits alongside other adjustments will reduce benefit incomes in real terms, further increasing income inequalities (Grover and Piggott 2010). Regrettably, at a time of significant changes to the welfare system, advocacy services are being drastically reduced due to public sector spending cuts, which is likely to result in higher levels of non-claiming and serious hardship.

Conclusions

Conceptualising cancer as a chronic disease requires a focus on the long-term implications of the illness, particularly the consequences of financial strain caused by a temporary or permanent interruption to employment. This article demonstrates the relevance of advocacy and assistance from a rights-based approach to claiming welfare benefits through (i) enabling citizens to claim their sickness benefit entitlement and (ii) and boosting incomes during periods of illness-related unemployment. Returning to work, for those who were able to do so, helped with repairing the disruption associated with disease and rebuilding identity as a worker rather than a cancer patient. The interplay of ill health and depressed labour market conditions, together with factors such as education and qualifications, age and job type, meant that most people did not, in fact, return to work and were reliant on the benefits system for some or all of their income. Claiming welfare, even for a cancer-related illness, is stigmatising. We argue that stigma occurs at the individual level, but that the structural dimensions of stigma also need to be acknowledged in order to analyse the forces that cause, maintain and perpetuate the stigma associated with claiming welfare while ill. Structural forces are hugely implicated in the systematic ways in which claimants have been devalued in public and policy discourse alongside successive government policies to reduce claimant numbers. Current UK government welfare policies are specifically designed to reduce incomes for many welfare claimants as an incentive to rejoin the labour force. Given the factors influencing labour markets, this in itself will lead to greater income inequalities and disadvantage for the most vulnerable.