‘Why all of a sudden is my motor going a bit funny?’ Using narrative methods to explore illness experience amongst patients with atrial fibrillation.

Problem

A central tenet of delivering primary care involves a ‘whole person’ approach. Narrative research methods give voice to patients’ illness journeys, biographies and experiences in their own words and from their own perspective. Findings from narrative research are therefore illuminating for clinicians who wish to improve their understanding of illness experience and provide patient centred care. Atrial fibrillation (AF) is a chronic heart condition that affects around 2% of the population and increases risk of stroke. This study explored patients’ stories of AF and taking long term oral anticoagulant medications.

Approach

Narrative methods were used to elicit patient experiences of AF and taking oral anticoagulants, with a particular focus on understanding adherence to direct oral anticoagulants (DOACs). 18 participants with AF took part in in-depth interviews with an experienced qualitative researcher with a background in public health (MH). The interview schedule was based on a modified biographic-narrative-interpretive method that lasted between 45 mins and 2.5 hours. Participants were purposively sampled from five anticoagulation clinics in London and South West England according to anticoagulant type, previous experiences of stroke and bleeding and self-reported adherence as well as demographic categories such as gender, ethnicity and age. Analysis of the data was undertaken using a pluralistic multi-layered approach incorporating thematic, structural and metaphorical lenses. Three separate panels of experienced qualitative researchers contributed to data analysis and interpretation.

Findings

Four dominant narrative ‘threads’ characterised the beginning of the AF journey. ‘The big event’ was typified by a sudden, unforeseen disruptive event (e.g. a sudden heart attack) resulting in medical investigations and diagnosis of AF. ‘The long road’ was a process of ‘achieving’ an AF diagnosis through gathering biomedical evidence of symptoms and repeated, often challenging, contacts with the health service. ‘The chance find’ diagnosis of AF was an unexpected but less disruptive discovery at a routine appointment, for instance as a result of a patient having their pulse checked. In ‘The juggling act’ thread, AF co-existed with many other health and non-health related concerns, becoming ‘just another thing to be managed’. Each of these narrative ‘beginnings’ differently influenced how they accounted for decisions about initiating oral anticoagulants, and their accounts of whether and how they took their anticoagulants long term.

Consequences

The ways in which patients experience symptoms and come to be diagnosed with AF affects how they begin taking long term anticoagulant medication, and how ‘shared’ this decision is. Detailed analysis of patient illness stories gives insights into the ‘whole’ patient experience and impresses the importance of understanding health related decision making and adherence behaviour in the wider context of their illness journeys.