What is burden of treatment and how is it experienced by patients living with lung cancer or chronic obstructive pulmonary disease?

Abstract

People living with illness experience a potentially modifiable treatment workload which can be exacerbated or ameliorated by the organisation and delivery of healthcare. Where treatment workload and the demands of daily life exceed capacity, treatment burden may occur. The ways that ‘workload’ and ‘capacity’ interact to create treatment burden have not yet been fully characterised and understood.

This thesis consists of three published or publishable papers which aimed to identify, characterise and explain treatment burden in patients living with lung cancer or chronic obstructive pulmonary disease (COPD). The papers were underpinned by an abductive approach to study design, data collection and analysis which worked iteratively and recursively with empirical and theoretical materials to identify and characterise treatment burden.

The first paper reported a systematic review and interpretative synthesis of literature concerning patients with COPD or lung cancer and their informal caregivers’ interactions with health/social care. The second paper set out a cross-sectional, qualitative, comparative analysis of patients’ lived experiences of treatment in lung cancer or COPD (semi-structured interviews with patients receiving specialist care n = 19; specialist clinicians n = 5; non participant observation of specialist outpatient clinics (11 hours, 52 minutes) n = 41). The third paper presented a conceptual model of potentially modifiable factors associated with ‘workload’ and ‘capacity’ in illness and delineated the hierarchical relationships between each.

This resulted in the development of a taxonomy of treatment burden in COPD and lung cancer, characterising how, in lung cancer, the disease was seen to exert agency over patients, taking priority over daily life. Patients were not expected to direct their intensive, hospital-based, treatment workload. Capacity (from friends/family and the healthcare system) was made available. In COPD, patients were seen to be able to exert agency over their disease and were expected to direct their intensive, home-based, treatment workload. Capacity was less readily available, and patients had to work to mobilise it. Analysis enabled the interrogation and refinement of the taxonomy of treatment burden, contrasting the biographically disruptive diagnosis of lung cancer with the biographically erosive diagnosis of COPD and associating this with both ‘workload’ and ‘capacity’. First, the extent to which capacity was available to patients, and social skill was required to mobilise it. Second, the priority given to and the nature of the treatment workload. Conceptual modelling work identified potentially modifiable factors shaping ‘workload’ and ‘capacity’ in illness. Those shaping capacity were: 1) social skill 2) structural resilience 3) illness trajectory. Those shaping workload were: 1) structural (dis)advantage 2) how patients experience healthcare services 3) understanding of disease 4) normative expectations of motivation to participate in workload.

These series of investigations have determined that treatment burden is more than simply the work that patients must do to meet the demands of treatment regimens. Instead, treatment burden is a complex, multidimensional and situational concept which occurs as a result of interactions between illness identity, workload and capacity and the potentially modifiable factors associated with each.

More information

Identifiers

ORCID for Katharine Alice Lippiett Chapple: orcid.org/0000-0003-2626-498X

ORCID for Carl May: orcid.org/0000-0002-0451-2690

ORCID for Alison Richardson: orcid.org/0000-0003-3127-5755

Catalogue record

Export record