Conceptualising diagnostic liminality: A qualitative exploration of the journey to heart failure diagnosis

Background: Heart failure (HF) is a global public health priority. HF diagnosis in primary care is linked to improved outcomes, but most patients are diagnosed in hospital. The pathway to HF diagnosis in primary care is poorly understood.

Aim: To gain deeper understanding of the patient experience of missed opportunities for HF diagnosis.

Design and Setting: Qualitative study with patients recruited through general practice and community nurse clinics.

Method: We conducted, remote, semi-structured interviews with 24 patients who had a diagnosis of HF. Data were analysed using reflexive thematic analysis.

Results: Three themes were developed: diagnostic liminality and suffering at the threshold of HF diagnosis (when participants were unwell but not yet diagnosed or were unaware of their diagnosis); meaning and framing in the diagnostic moment; and truth-telling and sense-making facilitating the escape from liminality. Although receiving the diagnosis brought relief, it also came as a shock due to the meanings associated with the term. Some thought HF meant imminent death and was incompatible with living. Participants also described not being properly informed about their diagnosis.

Conclusion: While life was disrupted by a HF diagnosis, the diagnosis did not enable the transition from liminality. It was truth telling, in combination with careful explanation that facilitated the shift from diagnostic liminality. Through sense-making, participants were able to build an understanding of what HF diagnosis actually meant for them and their future. Clinicians have a vitally important role in guiding patients away from diagnostic liminality through prompt HF diagnosis and thoughtful communication.