Recovering from chronic myeloid leukemia: the patients’ perspective seen through the lens of narrative medicine

Autor: Lucia Mastrullo, Silvana Capalbo, Tamara Intermesoli, Massimo Breccia, Davide Rapezzi, N. Di Renzo, R. Della Seta, Alessandra Iurlo, Franca Falzetti, A. Melosi, S Galimberti, Federico Simonetti, M. Pizzuti, Matteo Pacilli, Guendalina Graffigna, Patrizio Mazza, E Orlandi, Ester Pungolino, I. Cecchini, Enrico Capochiani
Jazyk: angličtina
Rok vydání: 2017
Předmět:
Adult
Male
Psychotherapist
Illness experience
Narrative inquiry approach
Patient engagement
Settore M-PSI/06 - PSICOLOGIA DEL LAVORO E DELLE ORGANIZZAZIONI
Patientsâ psychological representations
03 medical and health sciences
0302 clinical medicine
Quality of life (healthcare)
Leukemia
Myelogenous
Chronic
BCR-ABL Positive

Health care
Medicine
Humans
Narrative
Chronic myeloid leukemia
Patients’ psychological representations
education
Narrative medicine
education.field_of_study
business.industry
Perspective (graphical)
Environmental and Occupational Health
Public Health
Environmental and Occupational Health

Narrative Medicine
Word Association
Middle Aged
030220 oncology & carcinogenesis
Patients’ psychological representations
Quality of Life
Female
Public Health
Thematic analysis
business
030215 immunology
Clinical psychology
Qualitative research
Popis: The main objective of this study is to gain a deeper understanding of how patients suffering from chronic myeloid leukemia (CML) cope with their illness. The study aims to reconstruct the subjective meaning-making process related to CML in order to gain insights into the impact the disease has on patients’ emotions and everyday lives, as well as to explore the psychological impact of their being presented with the chance to suspend their therapy and recover from the disease. Data were gathered from a qualitative study conducted in Italy on 158 Italian CML patients. Basing the study on the narrative inquiry approach, the patients were required to describe their patient journey in a qualitative narrative diary. These contained prompts to elicit the free expression of their needs, expectations, and priorities. A lexicographic analysis was carried out with T-LAB software and in particular a thematic analysis of elementary contexts (TAECs) and a word association analysis (WAA). The TAEC detected four thematic clusters related to two factors (temporal frame and contextual setting) that explained the variance among the narratives. The WAA evidenced a wide variety of emotions, both positive and negative, as patients reacted to the possibility of interrupting their therapy. A better understanding of patients’ experiences can offer insights into promoting the development of more sustainable healthcare services and into therapeutic innovation aimed at improving patients’ quality of life and at engaging them more in their treatment. The findings of this study can also help make medical professionals more aware of the patient’s burden and help them identify potential interactions and emotional levers to improve clinical relationships.
Databáze: OpenAIRE