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

• Main Authors: Gatti V, Banfi P, Centanni S, D'Antonio S, Giustini S, Piraino A, Zibellini M, Marini MG
• Format: Article
• Language: English
• Published: Dove Medical Press 2018-10-01
• Series: International Journal of COPD
• Subjects: COPD; Narrative Medicine; Quality of life; communication
• Online Access: https://www.dovepress.com/enlightening-chronic-obstructive-pulmonary-disease-through-patients-an-peer-reviewed-article-COPD

Valeria Gatti,1 Paolo Banfi,2 Stefano Centanni,3 Salvatore D’Antonio,4 Saffi Giustini,5 Alessio Piraino,6 Marco Zibellini,1 Maria Giulia Marini1 1Health Care Area, Fondazione ISTUD, Milan, Italy; 2Fondazione Don Carlo Gnocchi IRCCS, Milan, Italy; 3Respiratory Unit, ASST San Paolo e San Carlo, Department of Health Sciences, University of Milan, Milan, Italy; 4Italian Patient’s Association “BPCO ONLUS”, Rome, Italy; 5Italian General Practitioners’ Association “SIMG”, Florence, Local Health Unit of Montale, Pistoia, Italy; 6Chiesi Farmaceutici S.p.A, Parma, Italy 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.Keywords: COPD, quality of life, narrative medicine, communication