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

Article

Lyu, Yang, Jia, Yanrui, Gao, Fengli, Huang, Ya-Ling and Lin, Frances. 2021. "Lived experiences of the disease journey among patients with idiopathic pulmonary fibrosis." International Journal of Nursing Sciences. 8 (2). https://doi.org/10.1016/j.ijnss.2021.02.004
Article Title

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

ERA Journal ID212962
Article CategoryArticle
AuthorsLyu, Yang, Jia, Yanrui, Gao, Fengli, Huang, Ya-Ling and Lin, Frances
Journal TitleInternational Journal of Nursing Sciences
Journal Citation8 (2)
Number of Pages6
Year2021
PublisherElsevier
Place of PublicationSingapore
ISSN2096-6296
2352-0132
Digital Object Identifier (DOI)https://doi.org/10.1016/j.ijnss.2021.02.004
Web Address (URL)https://www.sciencedirect.com/science/article/pii/S2352013221000259
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.

KeywordsHealth services needs and demand; Idiopathic pulmonary fibrosis; Patients; Qualitative research
Contains Sensitive ContentDoes not contain sensitive content
ANZSRC Field of Research 2020420501. Acute care
Byline AffiliationsBeijing Chao-Yang Hospital, China
Gold Coast Hospital and Health Service, Australia
University of the Sunshine Coast
Sunshine Coast Health Institute, Australia
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