How do illness identity, patient workload and agentic capacity interact to shape patient and caregiver experience? Comparative analysis of lung cancer and chronic obstructive pulmonary disease

Abstract Some patients have to work hard to manage their illness. When this work outweighs capacity (the resources available to patients to undertake the illness workload and other workloads such as that of daily life), this may result in treatment burden, associated with poor health outcomes for patients. This cross‐sectional, comparative qualitative analysis uses an abductive approach to identify, characterise and explain treatment burden in chronic obstructive pulmonary disease (COPD) and lung cancer. It uses complementary qualitative methods (semi‐structured interviews with patients receiving specialist care n = 19, specialist clinicians n = 5; non‐participant observation of specialist outpatient consultations in two English hospitals [11 h, 52 min] n = 41). The findings underline the importance of the diagnostic process in relation to treatment burden; whether diagnosis is experienced as a biographically disruptive shock (as with lung cancer) or is insidiously biographically erosive (as with COPD).


| INTRODUC TI ON
In recent years there has been increased interest in the work of patient-hood. This built on the germinal research of Strauss, Glaser and colleagues who investigated the social practices through which lived experiences of illness are formed and organised, and through which illness identities are socially constructed (Corbin & Strauss, 1988;Strauss et al., 1985). Recent epidemiological and demographic transitions have meant people are living increasingly with chronic diseases requiring management rather than cure (Taylor & Bury, 2007). While attention has recently been drawn to the acute consequences of the COVID-19 pandemic, these will not displace endemic long-term conditions. Indeed, there is increasing recognition of 'long Covid' where survivors of COVID-19 live with persistent symptoms, describing themselves as 'long haulers' (Kingstone et al., 2020). Latterly, research has focused on patient work as a practical problem, formed around normative expectations healthcare policy and providers have of patients-especially with longterm conditions-that patients are motivated to participate in their own care and this participation will be effective (Hunt & May, 2017).
In this article, we define patient and caregiver work as the 'affective, cognitive, informational, material, physical and relational tasks' (p.1) (Lippiett et al., 2019) going into participation in care, and the wider work of 'managing' ill-health. We are equally interested in patient and caregivers' capacity to perform these tasks. We define this capacity as the affective, cognitive, informational, material, physical and relational resources available to them, and, importantly, which they are able to mobilise to achieve participation in care and meet normative expectations of healthcare providers. Where this work outweighs capacity of patients and carers, patients may experience treatment burden (Shippee et al., 2012). Systematic reviews and meta-syntheses of qualitative studies of lived experiences of illness have characterised the multidimensional nature of workloadcapacity interactions and their effects on patients, their caregivers and members of their wider social networks seeking to meet treatment demands Demain et al., 2015;Gallacher et al., 2013;Jani et al., 2013;Lippiett et al., 2019;Roberti et al., 2018;Sav et al., 2015Sav et al., , 2017. Identification of treatment burden is important because it may lead to poor adherence to medication and treatment regimens with consequent increased hospitalisation, increased mortality and impaired health-related quality of life (Daker-White et al., 2018;Eton et al., 2012;Gallacher et al., 2011;May et al., 2009).
In this article, we contrast different experiences of workload and capacity in two conditions: lung cancer and chronic obstructive pulmonary disease (COPD), and further identify, characterise and explain important elements of treatment burden. These two common diseases are non-communicable, resulting from exposure to tobacco smoke in ~90% of cases (National Institute for Clinical Excellence, 2019). Although recent advances in treatment such as immunotherapies are extending survival (Jones & Baldwin, 2018), in the United Kingdom, lung cancer is still characterised by late diagnosis, relatively rapid disease progression, and low 5-year survival rates. COPD is a long-term condition with various therapeutic regimens available, but with only smoking cessation proven to delay disease progression (Jiménez-Ruiz et al., 2015). Because both diseases are usually smoking-related, they may carry additional burdens of assumed personal moral culpability for patients, and associated stigma (Rose et al., 2017). Both diseases are normally lethal.
In this study, we built on Burden of Treatment Theory (May et al., 2014), and undertook qualitative systematic reviews comparing and contrasting treatment burden, symptom burden, and disease trajectory in COPD and other long-term conditions Roberti et al., 2018), and of COPD and lung cancer (Lippiett et al., 2019). From these, we developed a taxonomy of patient experiences of 'workload' and 'capacity', finding diagnosis (and subsequent illness identity) could initiate significant differences in normative expectations of patient and caregiver behaviour and treatment workload delegated to patients (Lippiett et al., 2019).
Second, we drew on Status Passage Theory (Glaser & Strauss, 1971), to explore the micro-level dynamics of illness identity and associated relations between professionals, patients and caregivers over time. This supported understanding of treatment burden over illness trajectories as a problem of identity formation shaped by feelings of culpability and stigma (Goffman, 1968).

| ME THODS
We used two complementary qualitative data collection methods (semi-structured interviews, non-participant observation) to facilitate comparison.
We pragmatically selected two southern England hospitals.
Specialist respiratory and oncology clinicians in participating sites screened potential participants attending outpatient clinics during recruitment (December 2017-August 2018). Patient participants were English speakers, ≥18, diagnosed with either lung cancer or COPD, under oncology or respiratory services. Patients were excluded if deemed unfit to participate owing to their medical condition or could not provide informed consent. Maximum variation sampling (Palinkas et al., 2015) ensured a range of age, sex, living situation, employment status, disease stage and treatment regimen.
Clinician participants worked in specialist respiratory/oncology services in participating sites and were present at observed consultations. KAL obtained informed written consent from patients and clinicians interviewed/observed; verbal consent from friends/family members present during observations/interview. KAL undertook semi-structured interviews (23-63 min) with patients at venues of their choice (in homes in all but one case). Interviews focused on diagnosis (illness identity), workload and capacity. KAL also undertook observations of consultations in hospitals (5-52 min, totalling 11 h, 52 min), supported by an observation record guide. Interviews and observations were transcribed verbatim and anonymised. Participants could comment on interview transcripts to ensure they accurately reflected interviews. KAL took field notes to capture immediate insights and consider data collection reflexively. Our coding framework which KAL used to line-by-line code observations/interviews is included in online supplementary documentation (Appendix S1). We took an abductive approach to data analysis, exploring variation through What is known about this topic?
• Treatment burden has been linked to poorer healthrelated outcomes for patients.
• People have varying abilities and resources (called capacity) to manage the work of healthcare and daily life.

What this paper adds?
• Biographical disruption or erosion after diagnosis impacts on patient work and patient capacity.
• Delegated tasks, particularly those involving health behaviours, may be hard for patients, caregivers and healthcare professionals/systems to see as treatment work.
• Treatment burden is more than workload-capacity imbalance; it is a complex interrelationship between illness identity, work and capacity mediated through status passages.
grouping-related codes into datasets (conditions; perspectives of patients, family members and clinicians), at different points in illness trajectories and in different situations (e.g. treatment workload in hospital vs. home) (Tavory & Timmermans, 2014). We met often throughout data collection and analysis to discuss findings and to think reflexively about KAL's assumptions as the primary researcher. The arc of abductive interpretation of these qualitative data led to a complex array of constructs (see Appendix S2).
Research Ethics Committee approval was granted by NHS (England) South West. REC reference: 17/SW/0162.

| RE SULTS
KAL interviewed 19 patients: 10 with COPD, nine with lung cancer.

| Diagnosis, illness identity and work
In lung cancer, the diagnostic moment was characterised by shock and existential crisis. Patients and family members seemed to understand illness trajectories were likely to be short. Against this background, participants evinced a sense of treatment as hope, a bulwark against the existential threat of cancer. Treatment for lung cancer was a priority for patients and their family members, taking precedence over other claims on their time and energy. Indeed, as illness careers were played out, a focus of clinical encounters was continuing to identify further treatment options, so treatment cessation did not have to be faced: In contrast to people with lung cancer whose diagnostic moment was inscribed indelibly on their memory, some people living with COPD struggled to pinpoint a moment of diagnosis. Others could not be sure they had ever been offered a formal diagnosis at all. Years could elapse between symptom presentation and confirmation of diagnosis. Unlike cancer, COPD has no clear public narrative (British Lung Foundation, 2018). Indeed, COPD is not a unitary pathological entity at all; it involves several complex, heterogeneous and dynamically interacting processes affecting airways and lungs (Singh et al., 2019).
This heterogeneity could lead to uncertainty and confusion.

| Capacity and the relational contexts of patient and caregiver work
Participants with lung cancer were almost exclusively supported by specialist clinicians (doctors and nurses) whom they saw repeatedly, often having appointments every 3-4 weeks, and, consequently, with whom they were able to build a rapport. Most emphasised the importance of support from empathetic, specialist clinicians to whom they were known, and in whom they had confidence. Participants appeared rarely to have contact with their GP and, when they did, were often anxious about perceived lack of familiarity with their disease and its treatment. In addition to regular face-to-face appointments with specialist clinicians, participants with lung cancer and their informal caregivers were able to contact a named nurse specialist:

| DISCUSS ION
In this article, we have compared aspects of lived experiences of treatment burden amongst patients and caregivers living with lung cancer or COPD. These are very different diseases and, as we have shown, treatment burden is shaped by illness identity and social context, as well as treatment workload and capacity. These findings have contributed both to the development of our knowledge of treatment burden in respiratory disease and our conceptual understanding of treatment burden. Our previous work demonstrated a paucity of primary studies examining treatment burden in respiratory disease, both COPD and cancer. One qualitative study of burden of treatment in COPD has been undertaken in Australia (Harb & Dobler, 2017) while another retrospective cohort study using a Medicare-linked database to quantify treatment burden in lung cancer has been undertaken in the USA (Presley et al., 2017). Findings from Harb and colleagues echoed the findings of this study. Participants found the nature of the treatment workload-tasks that involved changing or maintaining health behaviours-particularly challenging. Patients had to rely on, sometimes absent, family members in order to meet the demands of this treatment workload. Presley and colleagues also concluded that patients with lung cancer experienced substantial treatment burden. They defined treatment burden in terms of volume: days of contact with health system, number of physicians involved in care, number of medications prescribed. As in this study, the authors found that lung cancer patients spent considerable time interacting with the healthcare system (1 in 3 days during the first 60 days of treatment). In previous literature, treatment burden has been predominantly characterised in relation to workload. So, treatment burden was defined by Eton and colleagues in 2012 as 'the workload of health and its impact on functioning and well-being' (Eton et al., 2012) (p.40). This definition, with its emphasis on treatment burden as the workload of healthcare, has persisted in the literature Boehmer et al., 2016;Eton et al., 2012Eton et al., , 2015Eton et al., , 2017Gallacher et al., 2011Gallacher et al., , 2013Gallacher et al., , 2018Harb & Dobler, 2017;Lorenz et al., 2019;Ørtenblad et al., 2018;Sav et al., 2015Sav et al., , 2017. Importantly, our findings move beyond a simple equation of treatment workload with treatment burden.

| Biographical disruption and biographical erosion
The relational consequences of the diagnostic moment are profoundly different. Diagnosis of lung cancer involves a sudden but supported confrontation with an intractable pathology, an existential threat. Bury's influential paper characterises the experience of being diagnosed with illness as a 'biographical disruption' where the individual must fundamentally rethink their 'biography and selfconcept' (Bury, 1982, p.169). In lung cancer, experience of diagnosis is profoundly disruptive. Thereafter, cognitive and material practices of care are densely concentrated in time and space, and patient work is focused on participating in well worked out care pathways, guided by specialists.
In contrast, patients and caregivers become aware of COPD much more slowly, sometimes without even a formal moment of diagnosis. Unlike the biographically disruptive experience of lung cancer, there is a long period of poorly informed and ambiguous illness experience: biographical erosion rather than disruption. Alongside this, cognitive and material practices of care are loosely distributed across a steadily increasing gradient of disability, with infrequent contact with specialist clinicians. Participation in such care demanded Sisyphean labours from people with COPD and their caregivers, and this is contextualised by gradual reconfiguration of their social relations and horizons.
The implication of these very different experiences of biographical disruption and erosion is that relational consequences of diagnosis do not settle illness identity once and for all, but are formative.
In this study, patients and caregivers experienced irreversible transitions from one status passage to another and found normative expectations of performance and participation were intimately linked to illness identity and legitimacy of help-seeking behaviour. What followed from this was, however, negotiable in different ways. This negotiability seems to be derived not from how patients and caregivers manage workload, but rather how they first identified and then mobilised capacity.

| Patient and caregiver capacity
Once diagnosed, participants with lung cancer found healthcare almost immediately available; they were not obliged to mobilise capacity. A well-defined and highly structured treatment pathway was available to them, in addition to practical and emotional support from a team of specialists with whom they were able to develop relational capacity. Specialist clinicians appeared to have discretion to allocate healthcare resources considering patient priorities other than treatment, thus providing a flexible and responsive treatment experience, tailored to individual needs. Practical and emotional support from family and friends was also readily available, with close family members often being able to suspend temporarily demands of daily life to support patients in managing treatment workloads.
Indeed, our data suggest families assumed collective illness identities, allowing for collective action and bolstering patients' structural resilience (their potential to deal with adversity) (May et al., 2014).
Participants did not report being held culpable for their disease, instead capacity was directed towards managing an intractable pathology (lung cancer).
In contrast, participants with COPD were obliged to exercise considerable social skill in order first to identify, and then mobilise, capacity to access healthcare. Participants had to engage and re-engage with healthcare providers in order to be given and, subsequently, un-

| Priority given to treatment workload
For participants with lung cancer, the threat of death and the hope treatment might be life-prolonging or even be curative meant participants were allowed and, indeed, expected to adopt a more traditional sick role. Thus, they were temporarily exempted from demands of other status passages in order to prioritise treatment of their illness (Parsons, 1964

| Strengths and limitations
This study is limited by its cross-sectional rather than longitudinal design. Longitudinal designs may be particularly well suited to understanding the evolving and dynamic nature of treatment burden.
An additional limitation may be the fact that it was not clear what stage of disease participants interviewed were as the research team did not have access to their clinical records. The key strength of the study is the abductive approach taken to study design, data collection and analysis (Tavory & Timmermans, 2014). This has meant that we have built iteratively and recursively on systematic reviews to enable robust, empirically and theoretically informed characterisation of constructs of workload and capacity in lung cancer and COPD which has extended and enhanced our understanding of treatment burden.

| IMPLI C ATI ON S FOR P OLI C Y AND PR AC TI CE
This has important implications for healthcare practice and policy.
We began by setting out the sociological background to the work of patient-hood. This understanding of treatment as work is not always appreciated in healthcare settings, particularly in relation to delegated tasks. Indeed, much of this workload may be invisible to healthcare professionals who may not realise its impact on patients and informal caregivers, particularly over time (Dobler et al., 2018).
Healthcare professionals should recognise this delegated workload might be experienced by patients living with chronic illness as hard, relentless, lifelong work, and as potentially burdensome as the obvious workload of treatment for cancer. The design of health care systems and organisations is an important exacerbating factor in treatment burden (Gallacher et al., 2018). In this paper, participants described how fragmented, poorly coordinated services, organisations and healthcare professionals which operated independently of one another added to workload and reduced capacity. Since this study was undertaken, the COVID-19 pandemic has dramatically affected the way in which healthcare is coordinated and delivered to patients, both respiratory and other, for example the rapid rise in care being delivered virtually through telemedicine (Pierucci et al., 2021).
This increased remote delivery of healthcare underscores the importance of the consideration of treatment burden in clinical practice.
It is vital that healthcare professionals understand the treatment workload that they are delegating to patients and their informal caregivers and the capacity that patients and their informal caregivers have to meet the demands of this workload. Moreover, the pandemic has demonstrated the importance of not only acute care for patients in hospitals but, as an increasing body of evidence is demonstrating, complex, integrated care over time for patients experiencing Long Covid (Maxwell & Radford, 2021). This resonates with the findings of this study. We argue, therefore, for a fundamental shift in healthcare design, so healthcare systems not only provide for patients with acute conditions who need episodic, short-term care but also supply life-long, holistic care required for those with life-limiting conditions.

| CON CLUS ION
By comparing and contrasting constructs of illness identity, capacity and workload in lung cancer and COPD, we have deepened our conceptual understanding of treatment burden. This study has shown that treatment burden is not, as some suggest, simply the work patients have to do to meet treatment workload demands. Our comparative analysis finds diagnosis and illness identity affect the priority that patients, family members, clinicians and society itself give to meeting the demands of treatment workloads. Thus, treatment workload in lung cancer may bring hope rather than burden.
In COPD, treatment workloads must be balanced with demands of daily life and may, therefore, accumulate over the uncertain, but often long, illness trajectory to burden patients and their family members. Diagnosis and illness identity may also affect the nature of treatment workloads, so in chronic non-malignant conditions, tasks may be delegated by clinicians to patients to manage independently at home over lifespans. In lung cancer (and possibly other cancers), temporally limited tasks are more likely to be undertaken by clinicians and patients in hospital together. Diagnosis and illness identity may also affect patients' capacity to meet the demands of treatment workloads and, crucially, the ability to mobilise this capacity and the structural resilience required subsequently to sustain it.

ACK N OWLED G EM ENTS
The authors thank Dr Michelle Myall, Dr Amanda Cummings and Dr Jonathan Harvey for their support in developing the coding framework and Martin Simpson-Scott for his assistance with data preparation. We also gratefully acknowledge the support and ad-

CO N FLI C T O F I NTE R E S T
Kate Lippiett reports personal fees from Glaxo Smith Kline, grants and personal fees from Boehringer Ingelheim, personal fees from Teva, outside the submitted work. Carl May and Alison Richardson report no conflicts of interest.

DATA AVA I L A B I L I T Y S TAT E M E N T
Much of the data that support this article is available in the supplementary material in the appendices. Further data are not publicly available due to ethical restrictions.