了解印度德里特发性肺纤维化患者的生活经历,以及这种经历如何影响人们对家庭肺康复的看法。

IF 3.5 3区 医学 Q2 RESPIRATORY SYSTEM Chronic Respiratory Disease Pub Date : 2024-01-01 DOI:10.1177/14799731241258216
Humaira Hanif, Obaidullah Ahmed, James Manifield, Rubia Ishrat, Ilaria Pina, Zahira Ahmed, Mohd Shibli, Dominic Malcolm, Deepak Talwar, Sally J Singh, Mark W Orme
{"title":"了解印度德里特发性肺纤维化患者的生活经历,以及这种经历如何影响人们对家庭肺康复的看法。","authors":"Humaira Hanif, Obaidullah Ahmed, James Manifield, Rubia Ishrat, Ilaria Pina, Zahira Ahmed, Mohd Shibli, Dominic Malcolm, Deepak Talwar, Sally J Singh, Mark W Orme","doi":"10.1177/14799731241258216","DOIUrl":null,"url":null,"abstract":"<p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":10217,"journal":{"name":"Chronic Respiratory Disease","volume":null,"pages":null},"PeriodicalIF":3.5000,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11127573/pdf/","citationCount":"0","resultStr":"{\"title\":\"Understanding the lived experience of idiopathic pulmonary fibrosis and how this shapes views on home-based pulmonary rehabilitation in Delhi, India.\",\"authors\":\"Humaira Hanif, Obaidullah Ahmed, James Manifield, Rubia Ishrat, Ilaria Pina, Zahira Ahmed, Mohd Shibli, Dominic Malcolm, Deepak Talwar, Sally J Singh, Mark W Orme\",\"doi\":\"10.1177/14799731241258216\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>\",\"PeriodicalId\":10217,\"journal\":{\"name\":\"Chronic Respiratory Disease\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":3.5000,\"publicationDate\":\"2024-01-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11127573/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Chronic Respiratory Disease\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1177/14799731241258216\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"RESPIRATORY SYSTEM\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Chronic Respiratory Disease","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1177/14799731241258216","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"RESPIRATORY SYSTEM","Score":null,"Total":0}
引用次数: 0

摘要

目的:肺康复(PR)是针对特发性肺纤维化(IPF)患者的一种高效干预措施,但在印度却很有限。肺康复的障碍包括路途遥远、缺乏服务和提供肺康复服务的医疗保健专业人员,因此与印度 IPF 的巨大负担不成比例。我们探讨了印度德里的 IPF 患者、家庭照顾者 (CG) 和医护人员 (HCW) 的生活经历以及他们对居家 PR (HBPR) 的看法:采用半结构式访谈法对 IPF 患者(20 人)、CG(10 人)和医护人员(10 人)进行了定性研究。采用编码本主题分析法对数据进行分析:结果:产生了三大主题:(i) 健康影响,包括病理生理变化、所经历的症状范围、疾病后果和合并症的影响;(ii) 疾病管理,描述了控制 IPF 进展和整体管理的策略,如药物和锻炼;(iii) 肺康复模式,描述了对 HBPR 的看法、与基于中心的计划的比较,以及 HBPR 如何作为 PR 交付选项菜单的一部分:IPF 患者、家庭护理人员和医护人员对 HBPR 的潜在实施持积极态度,并建议开发纸质手册,以促进 HBPR 而非数字/在线方法的实施。HBPR 的内容应考虑到非 IPF 健康问题的额外影响以及与医护人员互动减少所带来的挑战。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
查看原文
分享 分享
微信好友 朋友圈 QQ好友 复制链接
本刊更多论文
Understanding the lived experience of idiopathic pulmonary fibrosis and how this shapes views on home-based pulmonary rehabilitation in Delhi, India.

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.

求助全文
通过发布文献求助,成功后即可免费获取论文全文。 去求助
来源期刊
Chronic Respiratory Disease
Chronic Respiratory Disease RESPIRATORY SYSTEM-
CiteScore
5.90
自引率
7.30%
发文量
47
审稿时长
11 weeks
期刊介绍: Chronic Respiratory Disease is a peer-reviewed, open access, scholarly journal, created in response to the rising incidence of chronic respiratory diseases worldwide. It publishes high quality research papers and original articles that have immediate relevance to clinical practice and its multi-disciplinary perspective reflects the nature of modern treatment. The journal provides a high quality, multi-disciplinary focus for the publication of original papers, reviews and commentary in the broad area of chronic respiratory disease, particularly its treatment and management.
期刊最新文献
Quantifying uptake and completion of pulmonary rehabilitation programs in people with chronic obstructive pulmonary disease known to tertiary care. Navigating the COVID-19 pandemic: Experiences and self-management approaches adopted by people with interstitial lung disease. Relationship between dust allergen sensitization and cardiac autonomic function in patients with chronic obstructive pulmonary disease. Respiratory impairments in patients suffering from Fabry disease - A cross-sectional study. Two-year diffusion capacity trajectory in COVID-19 pneumonia survivors.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
现在去查看 取消
×
提示
确定
0
微信
客服QQ
Book学术公众号 扫码关注我们
反馈
×
意见反馈
请填写您的意见或建议
请填写您的手机或邮箱
已复制链接
已复制链接
快去分享给好友吧!
我知道了
×
扫码分享
扫码分享
Book学术官方微信
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术
文献互助 智能选刊 最新文献 互助须知 联系我们:info@booksci.cn
Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。
Copyright © 2023 Book学术 All rights reserved.
ghs 京公网安备 11010802042870号 京ICP备2023020795号-1