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
Permalink -

https://research.usq.edu.au/item/z9v66/lived-experiences-of-the-disease-journey-among-patients-with-idiopathic-pulmonary-fibrosis

Log in to edit

Download files

Published Version
1-s2.0-S2352013221000259-main.pdf
License: CC BY-NC-ND 4.0
File access level: Anyone

  • 12
    total views
  • 4
    total downloads
  • 4
    views this month
  • 1
    downloads this month

Export as

Related outputs

Healthcare Professional Perspectives on the Impact of the Physical Health Nurse Consultant
Tabvuma, Tracy, Stanton, Robert, Huang, Ya-Ling and Happell, Brenda. 2024. "Healthcare Professional Perspectives on the Impact of the Physical Health Nurse Consultant." International Journal of Mental Health. https://doi.org/10.1111/inm.13399
The Physical Health Nurse Consultant: Perceptions and Experiences of Those Who Care for People with Mental Illness
Tabvuma, Tracy, Stanton, Robert, Huang, Ya-Ling and Happell, Brenda. 2024. "The Physical Health Nurse Consultant: Perceptions and Experiences of Those Who Care for People with Mental Illness." Issues in Mental Health Nursing. 45 (9). https://doi.org/10.1080/01612840.2024.2361317
Healthcare delivery to patients from culturally and linguistically diverse backgrounds in emergency care: a scoping review protocol
Huang, Ya‑Ling, Thorning, Sarah, Lin, Chun‑Chih, Lee, Robert, Elder, Elizabeth and Crilly, Julia. 2024. "Healthcare delivery to patients from culturally and linguistically diverse backgrounds in emergency care: a scoping review protocol." Systematic Reviews. 13. https://doi.org/10.1186/s13643-024-02579-0
The epidemiology of dying within 48 hours of presentation to emergency departments: a retrospective cohort study of older people across Australia and New Zealand
Sweeny, Amy L, Alsaba, Nemat, Grealish, Laurie, Denny, Kerina, Lukin, Bill, Broadbent, Andrew, Huang, Ya-Ling, Ranse, Jamie, Ranse, Kristen, May, Katya and Crilly, Julia. 2024. "The epidemiology of dying within 48 hours of presentation to emergency departments: a retrospective cohort study of older people across Australia and New Zealand." Age and Ageing. 53 (4). https://doi.org/10.1093/ageing/afae067
The impact of COVID-19 on emergency department presentations for mental health disorders in Queensland, Australia: A time series analysis
Jones, Philip M., Sweeny, Amy, Branjerdporn, Grace, Keijzers, Gerben, Marshall, Andrea P., Huang, Ya-Ling, Hall, Emma J., Ranse, Jamie, Palipana, Dinesh, Teng, Yang D., Crilly, Julia and COVERED COVID study investigators. 2024. "The impact of COVID-19 on emergency department presentations for mental health disorders in Queensland, Australia: A time series analysis." Asia-Pacific Psychiatry. 16 (1). https://doi.org/10.1111/appy.12553
End-of-life care: A retrospective cohort study of older people who died within 48 hours of presentation to the emergency department
Sweeny, Amy, Alsaba, Nemat, Grealish, Laurie, May, Katya, Huang, Ya-Ling, Ranse, Jamie, Denny, Kerina J, Lukin, Bill, Broadbent, Andrew, Burrows, Erin, Ranse, Kristen, Sunny, Linda, Khatri, Meghna and Crilly, Julia. 2024. "End-of-life care: A retrospective cohort study of older people who died within 48 hours of presentation to the emergency department." Emergency Medicine Australasia. 36 (1), pp. 13-23. https://doi.org/10.1111/1742-6723.14331
Dialogues with human books to promote professional commitment and learning among first-year nursing students: a mixed method study
Chang, Hsiao-Yun, Tsai, Wen-Yun and Huang, Ya-Ling. 2024. "Dialogues with human books to promote professional commitment and learning among first-year nursing students: a mixed method study." Nurse Education Today. 132. https://doi.org/10.1016/j.nedt.2023.106010
Adults' perspectives of experiences and preferences for end-of-life care
Huang, Ya-Ling, Wang, Shou-Yu, Lin, Chun-Chih, Thorberg, Fred Arne and Wu, Chiung-Jung (Jo). 2023. "Adults' perspectives of experiences and preferences for end-of-life care." International Journal of Palliative Nursing. 29 (12), pp. 588-596. https://doi.org/10.12968/ijpn.2023.29.12.588
Undergraduate nurses’ reflections on visual thinking learning to construct inductive reasoning through situated patient pictures: a mixed method study
Lin, Chun-Chih, Han, Chin-Yen, Chen, Li-Chin, Huang, Ya-Ling and Hwang, Su-Lun. 2023. "Undergraduate nurses’ reflections on visual thinking learning to construct inductive reasoning through situated patient pictures: a mixed method study." Nurse Education Today. 131. https://doi.org/10.1016/j.nedt.2023.105991
Corrigendum to "Understanding COPD Emergency Department presentations: using thematic analysis to explore the voices of patients, nurses, and doctors on the lived experience of managing COPD '' [Australian Journal of Advanced Nursing, volume 40, issue 1
Moloney, Clint, Gow, Jeffrey, Beccaria, Gavin, Mullens, Amy, Phillips, Tania, Isaac, Hancy, King, Alex, Keijzers, Gerben, Rana, Rezwanul and Huang, Ya-Ling. 2023. "Corrigendum to "Understanding COPD Emergency Department presentations: using thematic analysis to explore the voices of patients, nurses, and doctors on the lived experience of managing COPD '' [Australian Journal of Advanced Nursing, volume 40, issue 1 ." Australian Journal of Advanced Nursing. https://doi.org/10.37464/2023.403.1280
Emergency department presentations during the COVID-19 pandemic in Queensland (to June 2021): interrupted time series analysis
Sweeny, Amy L, Keijzers, Gerben, Marshall, Andrea, Hall, Emma J, Ranse, Jamie, Zhang, Ping, Grant, Gary, Huang, Ya-Ling, Palipana, Dinesh, Teng, Yang D, Gerhard, Benjamin, Greenslade, Jaimi H, Jones, Philip and Crilly, Julia L. 2023. "Emergency department presentations during the COVID-19 pandemic in Queensland (to June 2021): interrupted time series analysis." Medical Journal of Australia. 218 (3), pp. 120-125. https://doi.org/10.5694/mja2.51819
Interventions and strategies to prevent medical device-related pressure injury in adult patients: A systematic review
Lyu, Yang, Huang, Ya-Ling, Li, Zhao-Yu and Lin, Frances. 2023. "Interventions and strategies to prevent medical device-related pressure injury in adult patients: A systematic review." Journal of Clinical Nursing. 32 (19-20), pp. 6863-6878. https://doi.org/10.1111/jocn.16790
Clinical Instructors' Perspectives on the Assessment of Clinical Knowledge of Undergraduate Nursing Students: A Descriptive Phenomenological Approach
Chen, Li-Chin, Lin, Chun-Chih, Han, Chin-Yen and Huang, Ya-Ling. 2023. "Clinical Instructors' Perspectives on the Assessment of Clinical Knowledge of Undergraduate Nursing Students: A Descriptive Phenomenological Approach." Healthcare. 11 (13). https://doi.org/10.3390/healthcare11131851
An Exploration of Psychological Resilience among Undergraduate Nursing Students Undertaking an Adult Nursing Virtual Practicum during the Coronavirus Pandemic in Taiwan: A Qualitative Study
Lin, Chun-Chih, Thorberg, Fred Arne, Huang, Ya-Ling, Han, Chin-Yen, Su, Ching-Ching and Chen, Li-Chin. 2023. "An Exploration of Psychological Resilience among Undergraduate Nursing Students Undertaking an Adult Nursing Virtual Practicum during the Coronavirus Pandemic in Taiwan: A Qualitative Study." International Journal of Environmental Research and Public Health. 20 (2). https://doi.org/10.3390/ijerph20021264
Models of care for frail older persons who present to the emergency department: A scoping review of the literature
Huang, Ya-Ling, McGonagle, Megan, Shaw, Rebecca, Eastham, Julie, Alsaba, Nemat, Lin, Chun-Chih and Crilly, Julia. 2023. "Models of care for frail older persons who present to the emergency department: A scoping review of the literature." International Emergency Nursing. 66. https://doi.org/10.1016/j.ienj.2022.101250
Understanding COPD Emergency Department presentations: using thematic analysis to explore the voices of patients, nurses, and doctors on the lived experience of managing COPD
Moloney, Clint, Gow, Jeffrey, Beccaria, Gavin, Mullens, Amy, Phillips, Tania, Isaac, Hancy, King, Alex, Keijzers, Gerben, Rana, Rezwanul and Huang, Ya-Ling. 2023. "Understanding COPD Emergency Department presentations: using thematic analysis to explore the voices of patients, nurses, and doctors on the lived experience of managing COPD." Australian Journal of Advanced Nursing. 40 (1), pp. 12-20. https://doi.org/10.37464/2023.401.195
Research priority setting in emergency care: a scoping review
Crilly, Julia, Huang, Ya-Ling, Krahe, Michelle, Wilhelms, Daniel, Ekelund, Ulf, Hörlin, Erika, Hayes, Jessica and Keijzers, Gerben. 2022. "Research priority setting in emergency care: a scoping review." Journal of the American College of Emergency Physicians Open (JACEP Open). 3 (6). https://doi.org/10.1002/emp2.12852
Effectiveness of the Use of Concept Maps and Simulated Cases as a Teaching-Learning Strategy in Enhancing Learning Confidence of Baccalaureate Nursing Students: A Qualitative Approach
Lin, ChunChih, Han, ChinYen, Huang, YaLing, Chen, LiChin and Su, Ching-Ching. 2022. "Effectiveness of the Use of Concept Maps and Simulated Cases as a Teaching-Learning Strategy in Enhancing Learning Confidence of Baccalaureate Nursing Students: A Qualitative Approach." Nurse Education Today. 115. https://doi.org/10.1016/j.nedt.2022.105418
Exploring the experience of reflective writing among Taiwanese undergraduate nursing students: A qualitative study
Lin, ChunChih, Chen, LiChin, Han, ChinYen, Su, ChingChing and Huang, YaLing. 2022. "Exploring the experience of reflective writing among Taiwanese undergraduate nursing students: A qualitative study." Journal of Professional Nursing. 40, pp. 105-110. https://doi.org/10.1016/j.profnurs.2022.03.007
Influence of social interactions, professional supports and fear of death on adults' preferences for life-sustaining treatments and palliative care
Huang, Ya-Ling, Yates, Patsy, Thorberg, Fred Arne and Wu, Chiung-Jung (Jo). 2021. "Influence of social interactions, professional supports and fear of death on adults' preferences for life-sustaining treatments and palliative care." International Journal of Nursing Practice. 28 (4). https://doi.org/10.1111/ijn.12940
Undergraduate nursing student academic resilience during medical surgical clinical practicum: a constructivist analysis of Taiwanese experience
Wang, LiHsiang, Lin, ChunChih, Han, ChinYen, Huang, YaLing, Hsiao, PingRu and Chen, LiChin. 2021. "Undergraduate nursing student academic resilience during medical surgical clinical practicum: a constructivist analysis of Taiwanese experience." Journal of Professional Nursing. 37 (3), pp. 521-528. https://doi.org/10.1016/j.profnurs.2021.02.004
Randomized controlled trial of symptom management patient education for people with acute coronary syndrome
Stolic, Snezana, Lin, Frances and Mitchell, Marion. 2019. "Randomized controlled trial of symptom management patient education for people with acute coronary syndrome." Journal of Nursing Care Quality. 34 (4), pp. 340-345. https://doi.org/10.1097/NCQ.0000000000000383
Models of care for frail older persons who present to the emergency department: a scoping review protocol
Huang, Ya-Ling, McGonagle, Megan, Shaw, Rebecca, Eastham, Julie, Alsaba, Nemat and Crilly, Julia. 2020. "Models of care for frail older persons who present to the emergency department: a scoping review protocol." Systematic Reviews. 9. https://doi.org/10.1186/s13643-020-01534-z
Application of social ecological model to Taiwanese end-of-life communication and healthcare planning
Huang, Ya-Ling, Yates, Patsy, Thorberg, Fred Arne and Wu, Chiung-Jung (Jo). 2020. "Application of social ecological model to Taiwanese end-of-life communication and healthcare planning." Collegian: The Australian Journal of Nursing Practice, Scholarship and Research. 27 (5), pp. 477-486. https://doi.org/10.1016/j.colegn.2020.04.008
The influence of alcohol craving on alexithymia and health-related quality of life in alcohol-dependent outpatients
Thorberg, Fred Arne, Hasking, Penelope, Huang, Ya-Ling, Lyvers, Michael, Young, Ross McD., Connor, Jason P., London, Edythe D. and Feeney, Gerald F. X.. 2020. "The influence of alcohol craving on alexithymia and health-related quality of life in alcohol-dependent outpatients." Journal of Psychoactive Drugs. 52 (4), pp. 366-376. https://doi.org/10.1080/02791072.2020.1762022
End-of-life care for older people in the emergency department: a scoping review
Huang, Ya-Ling, Alsaba, Nemat, Brookes, Gemma and Crilly, Julia. 2020. "End-of-life care for older people in the emergency department: a scoping review." Emergency Medicine Australasia. 32 (1), pp. 7-19. https://doi.org/10.1111/1742-6723.13414
Adults’ Perspectives on Cultural, Social and Professional Support on End-of-life Preferences
Huang, Ya-Ling, Yates, Patsy, Thorberg, Fred Arne and Wu, Chiung-Jung (Jo). 2019. "Adults’ Perspectives on Cultural, Social and Professional Support on End-of-life Preferences." Collegian: The Australian Journal of Nursing Practice, Scholarship and Research. 26 (6), pp. 621-628. https://doi.org/10.1016/j.colegn.2019.08.005
Alexithymia and Alcohol Dependence: The Roles of Negative Mood and Alcohol Craving
Thorberg, Fred Arne, Young, Ross McD, Hasking, Penelope, Lyvers, Michael, Connor, Jason P., Lond, Edythe D., Huang, Ya-Ling and Feeney, Gerald F. X.. 2019. "Alexithymia and Alcohol Dependence: The Roles of Negative Mood and Alcohol Craving." Substance Use and Misuse. 54 (14), pp. 2380-2386. https://doi.org/10.1080/10826084.2019.1650773
Factors influencing nurses’ approaches to accommodating cultural needs of cancer patients and their families from different cultures
Huang, Ya-Ling, Yates, Patsy and Prior, Deborah. 2009. "Factors influencing nurses’ approaches to accommodating cultural needs of cancer patients and their families from different cultures." Journal of Clinical Nursing. 18 (24), pp. 3421-3429. https://doi.org/10.1111/j.1365-2702.2009.02938.x
Accommodating the diverse cultural needs of cancer patients and their families in palliative care
Huang, Ya-Ling, Yates, Patsy and Prior, Deborah. 2009. "Accommodating the diverse cultural needs of cancer patients and their families in palliative care." Cancer Nursing. 32 (1), pp. E12-E21. https://doi.org/10.1097/01.NCC.0000343370.16894.b7