Background After many years of decline, tuberculosis (TB) incidence is now increasing in England. Interventions are needed to reduce spread, reduce treatment delays and improve outcomes. Adults aged 65 years or older have atypical symptoms, experience treatment delays, need extra support during treatment and have poorer outcomes. However, little is known about their journey from symptom onset to treatment initiation. We aim to fill this gap, taking a multi-faceted narrative approach.

Methods A purposive sample of English, Urdu and Punjabi speaking participants aged 65 years or older and receiving treatment for active disease were recruited from TB clinics in the English Midlands. Narratives were collected using a single in-depth interview. Data collection started in October 2023 and is ongoing.

To capture multiple perspectives, documentary analysis of primary care records, including letters from secondary care, will be undertaken. Both the interviews and the documents will be analysed using a framework based on the patient journey (symptom onset, appraisal, decision to seek health care, receiving diagnosis and starting treatment). Arthur Frank’s (1995) narrative types (restitution, chaos and quest narratives) will be used as tools to identify narrative themes in interviews.

Results Five English-language interviews are completed. Symptom onset varied, but eventually all participants experienced functional challenges. Severity and persistence of symptoms triggered health care seeking. Participants felt ignored in primary care and to a lesser extent in secondary care. For most, getting a diagnosis was a relief. For some there was also guilt about potential spread of disease to loved ones. All participants reported medication side effects.

There was a mix of narrative types. Restitution narratives resulted in delays in presenting to health care with return to norm expected. But they provided hope that treatment side effects were worthwhile. All participants experienced chaos narratives (where recovery was not thought possible). At times chaos followed a breakdown in trust and communication with health care staff. For some it was triggered by severity of symptoms or medication side effects. All participants took part in the study to help others, enacting a quest narrative.

Conclusion Work is needed to encourage early presentation to and considered responses from health care providers. Awareness of the power and danger of restitution narratives should enable their deployment without allowing them to become barriers to investigation and referral. Chaos narratives identify areas for improvement. Our ongoing study will furnish more details to confirm these findings and inform potential interventions.