The emotional and social burden of heart failure: integrating physicians', patients', and caregivers' perspectives through narrative medicine.

BACKGROUND: The The Roadmap Using Story Telling project used a narrative medicine (NM) framework to assess the perspectives of people with heart failure (HF), their informal caregivers and HF specialists of the impact of HF on the daily life of patients and their carers. METHODS: Italian HF specialists participated on a voluntary basis, completing their own narratives, and inviting patients and their caregivers to write anonymously about their experiences, all on a dedicated online platform. The narratives were analyzed according to standard NM methodology. RESULTS: 82 narratives were collected from patients, 61 from caregivers, and 104 from HF specialists. Analysis of the three points of view revealed the extent of the burden of illness on the entire family, particularly that of the caregiver. The impact was mainly experienced as emotional and social limitations in patients' and their caregivers' daily lives. The analysis of all three points of view highlighted a strong difference between how HF is perceived by patients, caregivers, and HF specialists. CONCLUSIONS: This NM project illustrates the complex issues of living with HF and gave insights to integrate three different perspectives into the HF pathway of care.

Narrative medicine to improve the management and quality of life of patients with COPD: the first experience applying parallel chart in Italy.

Purpose: Poor adherence to therapy and the failure of current smoking cessation programs demonstrate that the current management of COPD can be improved, and it is necessary to educate physicians about new approaches for taking care of patients. Parallel chart is a narrative medicine tool that improves the doctor-patient relationship by asking physicians to write about their patients' lives, thereby encouraging reflective thoughts on care. Patients and methods: Between October 2015 and March 2016, 50 Italian pulmonologists were involved in the collection of parallel charts of anonymous patients with COPD. The narratives were analyzed according to the Grounded Theory methodology. Results: In the 243 parallel charts collected, the patients (mean age 69 years, 68% men) are described as still active and as a resource for their families (71%). The doctor-patient relationship started as difficult in 50% of cases, and younger age and smoking were the main risk factors. The conversations turned positive in 78% of narratives, displaying deeper mutual knowledge, trust for the clinicians' ability to establish effective therapy (92%), support efforts to quit smoking (63%), or restore patients' activities (78%). Conclusion: All the physicians concurred that the adoption of innovative parallel charts was useful for improving clinical care and worthy of official inclusion in protocols for the management of COPD.