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

• Published in: International journal of chronic obstructive pulmonary disease 2018-01, Vol.13, p.3095-3105
• Main Authors: Gatti, Valeria, Banfi, Paolo, Centanni, Stefano, D'Antonio, Salvatore, Giustini, Saffi, Piraino, Alessio, Zibellini, Marco, Marini, Maria Giulia
• Format: Article
• Language: English
• Subjects: Activities of daily living; Adult; Aging; Analysis; Attitude of Health Personnel; Attitude to Health; Care and treatment; Caregivers; Chronic obstructive lung disease; Chronic obstructive pulmonary disease; communication; COPD; Cost of Illness; Data Collection; Disease Progression; Family physicians; Female; Grounded theory; Humans; Illnesses; Italy; Lung diseases; Male; Medical research; Medicine; Metaphor; Middle Aged; Narration; Narrative Medicine; Narratives; Original Research; Patient Participation - methods; Patient Participation - psychology; Patients; Physicians; Pulmonary Disease, Chronic Obstructive - etiology; Pulmonary Disease, Chronic Obstructive - physiopathology; Pulmonary Disease, Chronic Obstructive - psychology; Pulmonary Disease, Chronic Obstructive - therapy; Pulmonologists; Qualitative Research; Quality of Life; Questionnaires; Respiratory tract diseases; Risk Factors; Smoking - adverse effects; Smoking cessation; Sociodemographics; Surveys
• ISSN: 1178-2005; 1176-9106; 1178-2005
• DOI: 10.2147/COPD.S172214

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. 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. 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. 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.