新冠疫情如何影响英国ALS患者及其配偶的生活——来自配偶视角的定性研究

数据集获取（Figshare）

• 源站标题：How the coronavirus pandemic affected the lives of people with ALS and their spouses in the UK from spouses’ perspectives: a qualitative study
• DOI：10.6084/m9.figshare.25779876.v1
• 发布日期：2024-05-09
• 文件数：4 个
• 文件总体积：142.96 KB
• 源站页面：https://tandf.figshare.com/articles/dataset/How_the_coronavirus_pandemic_affected_the_lives_of_people_with_ALS_and_their_spouses_in_the_UK_from_spouses_perspectives_a_qualitative_study/25779876

命令行下载

curl -L -o "Supplementary Information 1 Interviewer Characteristics March 2024.docx" "https://ndownloader.figshare.com/files/46204518"
curl -L -o "Supplementary Information 2 .docx" "https://ndownloader.figshare.com/files/46204521"
curl -L -o "Supplementary Information 3 Topic guide March 2024.docx" "https://ndownloader.figshare.com/files/46204524"
curl -L -o "Supplementary Information 4 Themes and Codes.docx" "https://ndownloader.figshare.com/files/46204527"

文件清单

• Supplementary Information 1 Interviewer Characteristics March 2024.docx（22.45 KB）
• Supplementary Information 2 .docx（45.74 KB）
• Supplementary Information 3 Topic guide March 2024.docx（35.92 KB）
• Supplementary Information 4 Themes and Codes.docx（38.85 KB）

文件总体积 142.96 KB（源站 API 实测）。

数据加载示例（图像类）

from PIL import Image
import glob, os

files = (glob.glob(os.path.join(path, "**", "*.png"), recursive=True)
       + glob.glob(os.path.join(path, "**", "*.jpg"), recursive=True)
       + glob.glob(os.path.join(path, "**", "*.tif"), recursive=True))
print("图像文件数:", len(files))
img = Image.open(files[0]); print("尺寸/模式:", img.size, img.mode)

# torchvision Dataset 方式:
# from torchvision import datasets
# ds = datasets.ImageFolder(path)  # 要求 子目录=类别

目录组织与标注格式以源站说明和下载后实际文件为准。

数据说明

This study set out to investigate, using qualitative methodology, the experiences of spouses of people with Amyotrophic Lateral Sclerosis (ALS) during the coronavirus pandemic, with particular focus on spouse distress and cognitive and behavioral change in people with ALS (pwALS).
Qualitative semi-structured interviews of nine spouses of pwALS living in England were conducted between 11/09/2020 and 20/04/2021, focusing on spouses’ perspectives of how their lives and the lives of pwALS were affected by the pandemic and related lockdowns. Interviews were subject to thematic analysis.
Four superordinate themes were identified from the spouses’ interviews: (i) pandemic behaviors, which encompassed accounts of cautious behavior, relaxation of cautious behavior, and other people’s attitudes to shielding the person with ALS; (ii) changes to daily life caused by the pandemic and progression of ALS; (iii) distress in spouses, which included anxiety, depression, and burden; and (iv) ALS-related behavioral impairment. Spouses also provided mixed accounts of telehealth care, pointing out its convenience but some felt that face-to-face appointments were preferable.
While many reactions to the pandemic reported by spouses of pwALS may have been similar to those of the general population or other vulnerable groups, interviews indicated the potential for the pandemic to have made more apparent certain aspects of behavioral change in pwALS with which carers may require support. Clinicians need to acknowledge spouses’ concerns about the potential limitations of remote clinical consultations, enquire about cognitive and behavioral change, and consider how input should be best provided in such limiting circumstances.

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.6084/m9.figshare.25779876.v1（source: https://tandf.figshare.com/articles/dataset/How_the_coronavirus_pandemic_affected_the_lives_of_people_with_ALS_and_their_spouses_in_the_UK_from_spouses_perspectives_a_qualitative_study/25779876）。