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Qual Life Res. 2017 Oct;26(10):2739-2754. doi: 10.1007/s11136-017-1611-8. Epub 2017 Jun 12.

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

Author information

1
UniversitĂ  Cattolica del Sacro Cuore, Milan, Italy. Guendalina.graffigna@unicatt.it.
2
GfK Eurisko, Milan, Italy.
3
Policlinico Umberto Primo, Rome, Italy.
4
Centro Aziendale di Ematologia, Dipartimento Oncologico di Livorno, Leghorn, Italy.
5
U.O. Oncologia, Ospedale di Carrara, Carrara, Italy.
6
U.O. Ematologia di Pisa, Pisa, Italy.
7
U.O.S. Ematologia, Ospedale di Lucca, Lucca, Italy.
8
U.O. Medicina, Ospedale della Versilia, Camaiore, Italy.
9
Ematologia, Ospedale San Carlo, Potenza, Italy.
10
S.C. Ematologia, A.O. Universitaria OO.RR., Foggia, Italy.
11
Clinica di Ematologia, Ospedale Santa Maria della Misericordia, Perugia, Italy.
12
Ematologia, Ospedale Moscati, Taranto, Italy.
13
UOC di Ematologia e Trapianto di Cellule Staminali, P.O. V. Fazzi, Lecce, Italy.
14
Ematologia - Ospedale San Gennaro dei Poveri, Naples, Italy.
15
S.C. Ematologia, A.S.O. S. Croce e Carle, Cuneo, Italy.
16
Ematologia, Ospedale San Matteo di Pavia, Pavia, Italy.
17
Ematologia, Ospedali Riuniti di Bergamo, Bergamo, Italy.
18
Fondazione Ospedale Maggiore Policlinico Mangiagalli e Regina Elena, Milan, Italy.
19
S.C. di Ematologia e Trapianti di Midollo, A.O. Ospedale Niguarda Ca' Granda, Milan, Italy.
20
A.U.S.L. LATINA P.O. Nord - Ospedale Santa Maria Goretti, Latina, Italy.

Abstract

PURPOSE:

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.

METHODS:

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).

RESULTS:

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.

CONCLUSIONS:

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.

KEYWORDS:

Chronic myeloid leukemia; Illness experience; Narrative inquiry approach; Patient engagement; Patients’ psychological representations

PMID:
28608152
DOI:
10.1007/s11136-017-1611-8
[Indexed for MEDLINE]

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