Lived experiences of the disease journey among patients with idiopathic pulmonary fibrosis
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Jia, Yanrui
Gao, Fengli
Huang, Ya-Ling
Lin, Frances
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Abstract
Objective: This study aimed to explore the lived experiences of the disease journey and patients’ care needs with idiopathic pulmonary fibrosis (IPF). Methods: Face-to-face semi-structured interviews were conducted with a purposive sampling of IPF patients admitted to the department of respiratory medicine in a tertiary hospital in Beijing. Interview data were analyzed using the thematic analysis method. In the end, 16 patients were interviewed. Results: Four themes emerged from the qualitative data included the long and confusing journey to reach a diagnosis, living with the disease, understanding the disease and treatment and desire for continuity of care. A series of subthemes were also identified, including uncertainty of diagnosis, delaying the process, living with physical symptoms, living with emotional distress, loss of independence, uncertainty with the prognosis, questioning the cause of the disease, concerning the side effects of treatments, lacking continuity of care, and wanting a better quality of healthcare in community hospitals. Conclusions: Based on the findings, there is an urgent need to improve the care delivery to this vulnerable population in China. To meet their health needs, it is of paramount importance to develop effective education programs for health professionals and IPF patients and improve care models of healthcare systems, especially in remote areas, to enhance care continuity in the communities.
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International Journal of Nursing Sciences
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© 2021 The Authors. Published by Elsevier B.V. on behalf of the Chinese Nursing Association. Licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International Licence, which permits unrestricted, non-commercial use, distribution and reproduction in any medium, providing that the work is properly cited.
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Cardiovascular medicine and haematology
Nursing
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Lyu, Y; Jia, Y; Gao, F; Huang, Y-L; Lin, F, Lived experiences of the disease journey among patients with idiopathic pulmonary fibrosis, International Journal of Nursing Sciences, 2021