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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
Author(s) -
Lippiett Kate,
Richardson Alison,
May Carl R.
Publication year - 2022
Publication title -
health and social care in the community
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.984
H-Index - 68
eISSN - 1365-2524
pISSN - 0966-0410
DOI - 10.1111/hsc.13858
Subject(s) - medicine , copd , workload , qualitative research , pulmonary disease , lung cancer , caregiver burden , disease , intensive care medicine , psychiatry , pathology , dementia , social science , sociology , computer science , operating system
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).