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理解特发性肺纤维化的真实体验,以及这如何塑造印度德里地区对家庭为基础的肺康复的看法。

Understanding the lived experience of idiopathic pulmonary fibrosis and how this shapes views on home-based pulmonary rehabilitation in Delhi, India.

机构信息

Metro Centre for Respiratory Disease, Metro Hospital and Heart Institute, Noida, India.

Centre for Exercise and Rehabilitation Science, Leicester Biomedical Research Centre (BRC) - Respiratory, University Hospitals of Leicester NHS Trust, National Institute for Health and Care Research (NIHR), Leicester, UK.

出版信息

Chron Respir Dis. 2024 Jan-Dec;21:14799731241258216. doi: 10.1177/14799731241258216.


DOI:10.1177/14799731241258216
PMID:38787595
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11127573/
Abstract

OBJECTIVES: Pulmonary Rehabilitation (PR) is a high-impact intervention for individuals with idiopathic pulmonary fibrosis (IPF) but access is limited in India. PR barriers include distance to travel, lack of service provision and lack of healthcare professionals to deliver PR, thus it is disproportionate to the immense burden of IPF in India. We explored the lived experiences of people living with IPF, family caregivers (CGs) and healthcare workers (HCWs) as well as their views towards home-based PR (HBPR) in Delhi, India. METHODS: A qualitative study using semi-structured interviews with individuals with IPF (n = 20), CGs (n = 10) and HCWs (n = 10) was conducted. Data were analysed using codebook thematic analysis. RESULTS: Three major themes were generated: (i) Health impact, which included pathophysiological changes, range of symptoms experienced, disease consequences and impact of comorbidities; (ii) Disease management, which described strategies to control the progression and overall management of IPF, such as medications and exercises; (iii) Mode of Pulmonary Rehabilitation, which described perceptions regarding HBPR, comparisons with centre-based programmes, and how HBPR may fit as part of a menu of PR delivery options. CONCLUSION: People living with IPF, family caregivers and healthcare workers were positive about the potential implementation of HBPR and suggested the development of a paper-based manual to facilitate HBPR over digital/online approaches. The content of HBPR should be sensitive to the additional impact of non-IPF health issues and challenges of reduced interactions with healthcare professionals.

摘要

目的:肺康复(PR)是特发性肺纤维化(IPF)患者的一项高影响力干预措施,但在印度,其可及性有限。PR 的障碍包括旅行距离、缺乏服务提供以及缺乏提供 PR 的医疗保健专业人员,因此与印度庞大的 IPF 负担不成比例。我们探讨了生活在印度德里的 IPF 患者、家庭照顾者(CGs)和医疗保健工作者(HCWs)的生活经历,以及他们对基于家庭的 PR(HBPR)的看法。 方法:采用半结构式访谈对 20 名 IPF 患者、10 名 CGs 和 10 名 HCWs 进行了一项定性研究。使用编码主题分析对数据进行分析。 结果:产生了三个主要主题:(i)健康影响,包括病理生理变化、经历的症状范围、疾病后果和合并症的影响;(ii)疾病管理,描述了控制疾病进展和全面管理 IPF 的策略,如药物和运动;(iii)肺康复模式,描述了对 HBPR 的看法、与中心为基础的方案的比较,以及 HBPR 如何作为 PR 提供方案的一种选择。 结论:IPF 患者、家庭照顾者和医疗保健工作者对实施 HBPR 持积极态度,并建议制定纸质手册,以促进 HBPR,而不是数字/在线方法。HBPR 的内容应考虑到非 IPF 健康问题的额外影响以及与医疗保健专业人员互动减少的挑战。

相似文献

[1]
Understanding the lived experience of idiopathic pulmonary fibrosis and how this shapes views on home-based pulmonary rehabilitation in Delhi, India.

Chron Respir Dis. 2024

[2]
Patients' and healthcare professionals' perspectives on the idiopathic pulmonary fibrosis care journey: a qualitative study.

BMC Pulm Med. 2021-3-18

[3]
Home-based pulmonary rehabilitation for people with COPD: A qualitative study reporting the patient perspective.

Chron Respir Dis. 2017-9-4

[4]
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[5]
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[6]
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[7]
Effect of home-based pulmonary rehabilitation on functional capacity in people with idiopathic pulmonary fibrosis-a systematic review protocol.

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[8]
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JMIR Form Res. 2023-11-7

[9]
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[10]
The lived experience with idiopathic pulmonary fibrosis: a qualitative study.

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引用本文的文献

[1]
Feasibility and acceptability of home-based pulmonary rehabilitation for individuals with idiopathic pulmonary fibrosis in Delhi, India.

Chron Respir Dis. 2025

[2]
How to culturally adapt the pulmonary rehabilitation programme for people living with COPD in Sri Lanka: a qualitative study.

BMJ Open Respir Res. 2025-7-21

本文引用的文献

[1]
Incidence, prevalence, and national burden of interstitial lung diseases in India: Estimates from two studies of 3089 subjects.

PLoS One. 2022

[2]
Barriers and Enablers to Pulmonary Rehabilitation in Low- and Middle-Income Countries: A Qualitative Study of Healthcare Professionals.

Int J Chron Obstruct Pulmon Dis. 2022

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Global incidence and prevalence of idiopathic pulmonary fibrosis.

Respir Res. 2021-7-7

[4]
Pulmonary rehabilitation in patients with interstitial lung diseases: Correlates of success.

Respir Med. 2021

[5]
Defining Modern Pulmonary Rehabilitation. An Official American Thoracic Society Workshop Report.

Ann Am Thorac Soc. 2021-5

[6]
Global RECHARGE: Establishing a standard international data set for pulmonary rehabilitation in low- and middle-income countries.

J Glob Health. 2020-12

[7]
Exercise and pulmonary rehabilitation for people with chronic lung disease in LMICs: challenges and opportunities.

Lancet Respir Med. 2019-12

[8]
Opportunities and Challenges in Expanding Pulmonary Rehabilitation into the Home and Community.

Am J Respir Crit Care Med. 2019-10-1

[9]
Diagnosis of Idiopathic Pulmonary Fibrosis. An Official ATS/ERS/JRS/ALAT Clinical Practice Guideline.

Am J Respir Crit Care Med. 2018-9-1

[10]
Short- and long-term effects of pulmonary rehabilitation for idiopathic pulmonary fibrosis: a systematic review and meta-analysis.

Clin Rehabil. 2018-5-30

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