‘I’m fine’: exploring patient and carer assertions of status in advanced COPD and clinical implications for primary care

Patients can be reluctant to say they need help and support, telling clinicians they are “fine” despite having unmet needs. Research with patients in mental health settings suggests that when patients do this they are less likely to follow their treatment plans, and that their informal carers may be at risk of depression. However we don’t know whether this is also true for patients with physical health problems. In this study we will explore this in patients with advanced chronic lung disease (COPD) and their carers: we know some of these patients and carers report being “fine” despite having needs, but we don’t know the impact of this – for example, are these patients less likely to follow treatment plans or are these carers at greater risk of depression? We will use existing interviews with patients and carers collected for the Living with Breathlessness Study to: 1) explore how and why patients with advanced COPD, and their carers, say they are “fine” when they have unmet support needs and 2) identify  risks that may be related to saying all is fine when it is not. We will then discuss our findings with primary care clinicians (GPs and practice nurses) to explore what this means for their clinical practice, how they currently support these patients and carers, and how they might better support them. Understanding the role and risks associated with patients and carers saying they are “fine” when they are not will help us develop interventions to support patients and carers to better engage in managing their condition.

Amount awarded: £24,420