肌萎缩侧索硬化症患者及其照护者咳嗽与分泌物问题的生活体验
通过访谈收集的ALS患者及其照护者应对咳嗽与分泌物问题体验的定性文本数据。
基本信息
资源简介
肌萎缩侧索硬化症患者及其照护者咳嗽与分泌物问题的生活体验
【一句话概览】
本数据集是 figshare 公开的文本数据集，收录 2 个文件、合计 556.72 KB，主题涵盖 Amyotrophic lateral sclerosis (ALS)、motor neuron disease (MND)、cough、secretion management、sialorrhoea，可用于医学自然语言处理（实体识别、信息抽取等），CC BY 4.0 许可开放获取。
【数据集背景】
本数据集源站标题为《Living with cough and secretion issues: the experiences of people with amyotrophic lateral sclerosis and their caregivers》。配套论文《Living with cough and secretion issues: the experiences of people with amyotrophic lateral sclerosis and their caregivers》发表于 Disability and Rehabilitation（2025），DOI：10.1080/09638288.2025.2555973。项目资助方：This study was funded as part of “Better Outcomes for patients living with Motor Neuron disease” Research Professorship by the National Institute for Health and Care Research (Award ID: NIHR301648) awarded to Professor McDermott and supported by the NIHR Biomedical Research Centre Sheffield. The views expressed in this publication are those of the authors and not necessarily those of the NIHR, NHS, or the UK Department of Health and Social Care.。源站首次发布：2025-09-05。
【数据内容】
源站原始描述：To explore the experiences of people living with amyotrophic lateral sclerosis (ALS) and their caregivers managing cough and secretion problems. A qualitative study was completed with 15 individuals participating in 10 interviews; 10 people living with ALS and five informal caregivers. Interview methods were adapted to ensure inclusivity of participants who had physical, respiratory and communication impairments. Data was analysed inductively using reflexive thematic analysis. Our analysis ident…
【数据结构与技术规格】
文件数 2 个，合计 556.72 KB。idre_a_2555973_sm6763.docx：application/vnd.openxmlformats-officedocument.wordprocessingml.document，15.85 KB。idre_a_2555973_sm7180.pdf：application/pdf，540.87 KB。数据集 DOI：10.6084/m9.figshare.30062607.v1。
【主题与分类】
源站学科分类：Medicine、Biological Sciences not elsewhere classified、Science Policy、Infectious Diseases、Virology、Computational Biology。主题标签：Amyotrophic lateral sclerosis (ALS)、motor neuron disease (MND)、cough、secretion management、sialorrhoea、multidisciplinary care。
【适用方向】
文本类数据可用于医学自然语言处理，如命名实体识别、信息抽取与文本分类。
【获取与许可】
源站页面：https://tandf.figshare.com/articles/dataset/Living_with_cough_and_secretion_issues_the_experiences_of_people_with_amyotrophic_lateral_sclerosis_and_their_caregivers/30062607
使用许可：CC BY 4.0（https://creativecommons.org/licenses/by/4.0/）。
规范引用：Living with cough and secretion issues: the experiences of people with amyotrophic lateral sclerosis and their caregivers. Taylor & Francis. Massey, Charlotte; Hobson, Esther; McDermott, Christopher; Griffiths, Alys Wyn
【使用注意】
· 源站最后修改于 2026-02-26，引用时请注意版本时效。
下载信息
注册下载
需要注册 Kaggle 账号并登录后下载，适合需要跟踪下载记录和使用 API 的用户。
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使用方式
数据集获取（Figshare）
- 源站标题：Living with cough and secretion issues: the experiences of people with amyotrophic lateral sclerosis and their caregivers
- DOI：10.6084/m9.figshare.30062607.v1
- 发布日期：2025-09-05
- 文件数：2 个
- 文件总体积：556.72 KB
- 源站页面：https://tandf.figshare.com/articles/dataset/Living_with_cough_and_secretion_issues_the_experiences_of_people_with_amyotrophic_lateral_sclerosis_and_their_caregivers/30062607
命令行下载
curl -L -o "idre_a_2555973_sm6763.docx" "https://ndownloader.figshare.com/files/57691935"
curl -L -o "idre_a_2555973_sm7180.pdf" "https://ndownloader.figshare.com/files/57691938"
文件清单
idre_a_2555973_sm6763.docx（15.85 KB）idre_a_2555973_sm7180.pdf（540.87 KB）
文件总体积 556.72 KB（源站 API 实测）。
数据说明
To explore the experiences of people living with amyotrophic lateral sclerosis (ALS) and their caregivers managing cough and secretion problems.
A qualitative study was completed with 15 individuals participating in 10 interviews; 10 people living with ALS and five informal caregivers. Interview methods were adapted to ensure inclusivity of participants who had physical, respiratory and communication impairments. Data was analysed inductively using reflexive thematic analysis.
Our analysis identified the challenges of living day to day with cough and secretion problems. Care coordination and the presence of informal caregivers were important in ensuring that cough and secretion interventions could be implemented successfully. Participants felt access to cough and secretion knowledge and skills specific to ALS was key to supporting care and supported them to acquire information which influenced decision-making around their care.
Cough and secretion care in ALS is multifaceted and multifactorial. Future development of clinical interventions in this area are needed to support the complex web of professionals, treatments and knowledge to optimise care.
Amyotrophic Lateral Sclerosis (ALS) is a rapidly progressive neurological disease which causes loss of motor, respiratory and swallowing functions with no cure.
Problems with cough weakness and managing secretions are common in ALS and present a day to day “battle” for people living with these issues.
Knowledge and skills of ALS for healthcare professionals, people with ALS and caregivers, are important to ensure coordination of cough and secretion care and support implementation of supportive interventions.
Interventions that upskill healthcare professionals, people with ALS and caregivers in the knowledge and skills of cough and secretion management need to be developed.
Amyotrophic Lateral Sclerosis (ALS) is a rapidly progressive neurological disease which causes loss of motor, respiratory and swallowing functions with no cure.
Problems with cough weakness and managing secretions are common in ALS and present a day to day “battle” for people living with these issues.
Knowledge and skills of ALS for healthc
许可
CC BY 4.0
引用
学术使用请引用 DOI 10.6084/m9.figshare.30062607.v1（source: https://tandf.figshare.com/articles/dataset/Living_with_cough_and_secretion_issues_the_experiences_of_people_with_amyotrophic_lateral_sclerosis_and_their_caregivers/30062607）。
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