Lived experiences of the disease journey among patients with idiopathic pulmonary fibrosis

Yang Lyu; Yanrui Jia; Fengli Gao; Ya-Ling Huang; Frances Lin

doi:10.1016/j.ijnss.2021.02.004

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Lived experiences of the disease journey among patients with idiopathic pulmonary fibrosis

Journal article

Open access

Peer reviewed

Lived experiences of the disease journey among patients with idiopathic pulmonary fibrosis

Yang Lyu, Yanrui Jia, Fengli Gao, Ya-Ling Huang and Frances Lin

International Journal of Nursing Sciences, Vol.8(2), pp.175-180

2021

DOI: https://doi.org/10.1016/j.ijnss.2021.02.004

PMID: 33997131

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Abstract

Qualitative research

Idiopathic pulmonary fibrosis

Patients

Health services needs and demand

This study aimed to explore the lived experiences of the disease journey and patients’ care needs with idiopathic pulmonary fibrosis (IPF). 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. 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. 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.

Details

Title: Lived experiences of the disease journey among patients with idiopathic pulmonary fibrosis
Authors: Yang Lyu (Author) - Beijing Chao-Yang Hospital, Capital Medical University
Yanrui Jia (Author) - Beijing Chao-Yang Hospital, Capital Medical University
Fengli Gao (Author) - Beijing Chao-Yang Hospital, Capital Medical University
Ya-Ling Huang (Author) - Gold Coast Hospital
Frances Lin (Author) - University of the Sunshine Coast, Queensland, School of Nursing, Midwifery and Paramedicine - Legacy
Publication details: International Journal of Nursing Sciences, Vol.8(2), pp.175-180
Publisher: Elsevier (Singapore) Pte Ltd
Date published: 2021
DOI: 10.1016/j.ijnss.2021.02.004
ISSN: 2352-0132
PMID: 33997131
Copyright note: © 2021 The authors. Published by Elsevier B.V. on behalf of the Chinese Nursing Association. This is anopen access article under the CC BY-NC-ND license. https://creativecommons.org/licenses/by-nc-nd/4.0/
Organisation Unit: School of Health - Nursing; University of the Sunshine Coast, Queensland; School of Nursing, Midwifery and Paramedicine - Legacy
Language: English
Record Identifier: 99518307302621
Output Type: Journal article

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Collaboration types: Domestic collaboration; International collaboration
Web Of Science research areas: Nursing

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