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Published (Version of record)CC BY-NC-ND V4.0, Open Access
Published (Version of record)CC BY-NC-ND V4.0, Open
Journal article
Lived experiences of the disease journey among patients with idiopathic pulmonary fibrosis
International Journal of Nursing Sciences, Vol.8(2), pp.175-180
10/04/2021
PMID: 33997131
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Source: InCites
Abstract
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
- Creators
- Yang Lyu - Beijing Chao-Yang Hospital, Capital Medical UniversityYanrui Jia - Beijing Chao-Yang Hospital, Capital Medical UniversityFengli Gao - Beijing Chao-Yang Hospital, Capital Medical UniversityYa-Ling Huang - Gold Coast University HospitalFrances Lin - University of the Sunshine Coast
- Publication Details
- International Journal of Nursing Sciences, Vol.8(2), pp.175-180
- Publisher
- Elsevier B.V
- Grant note
- The study was supported by grants from Beijing Excellent Talents Training Programme (2018000021469G220) and Beijing Hospitals Authority Youth Programme (QML20200309), Beijing, China.
- Identifiers
- 991012991898502368
- Academic Unit
- Nursing; Faculty of Health
- Language
- English
- Resource Type
- Journal article