Enlightening chronic obstructive pulmonary disease through patients’ and caregivers’ narratives

Articolo di Valeria Gatti, Paolo Banfi, Stefano Centanni, Salvatore D’Antonio, Saffi Giustini, Alessio Piraino, Marco Zibellini, Maria Giulia Marini di presentazione dei risultati del progetto “FARO – FAR LUCE ATTRAVERSO I RACCONTI DI BPCO“.
L’obiettivo principale del progetto è comprendere il vissuto e l’impatto economico, sociale e psicologico (burden of illness) che la BPCO (BroncoPneumopatia Cronico Ostruttiva) ha sulla vita della persona affetta da tale patologia e del suo nucleo familiare.

Purpose

The primary aim of this research was to raise awareness for COPD through real narratives of patients, caregivers, and pulmonologists. The second objective includes providing clinicians new means of caring for and treating patients with COPD.

Methods

Using narrative medicine, testimonies from patients, their caregivers, and clinicians were collected through an online questionnaire enriched by a narrative plot. Narrations were analyzed throughout descriptive statistics and an elaboration of recurring words and expressions.

Results

Throughout the project, 350 narratives were collected from 235 patients, 55 caregivers, and 60 physicians. Though a generally neutral reaction had been observed upon diagnosis, COPD had been found to have a high impact on the patients’ and caregivers’ lives. Metaphors utilized by patients and caregivers were suggestive of fear and panic unlike those utilized by clinicians who usually had a more technical approach. Smoking was a significant concern for
not only patients and caregivers but also clinicians.

Conclusion

Physicians are therefore challenged to find new ways of communicating COPD to raise awareness on this pathology and encourage corrective habits. An important social objective should be the implementation of a health system that is able to optimize patients’ and caregivers’ lives.