原发性进行性失语症患者的诊断与后诊断医疗保健体验

数据集获取（Figshare）

• 源站标题：“They are dealing with people’s lives…”: Diagnostic and post-diagnostic healthcare experiences in primary progressive aphasia
• DOI：10.6084/m9.figshare.23055891.v1
• 发布日期：2023-05-22
• 文件数：4 个
• 文件总体积：218.08 KB
• 源站页面：https://tandf.figshare.com/articles/dataset/_They_are_dealing_with_people_s_lives_Diagnostic_and_post-diagnostic_healthcare_experiences_in_primary_progressive_aphasia/23055891

命令行下载

curl -L -o "iasl_a_2208311_sm7271.pdf" "https://ndownloader.figshare.com/files/40792308"
curl -L -o "iasl_a_2208311_sm7266.pdf" "https://ndownloader.figshare.com/files/40792311"
curl -L -o "Supplementary_material_IPA_Steps.pdf" "https://ndownloader.figshare.com/files/40792314"
curl -L -o "Supplementary_material_Topic_Guide.pdf" "https://ndownloader.figshare.com/files/40792317"

文件清单

• iasl_a_2208311_sm7271.pdf（97.11 KB）
• iasl_a_2208311_sm7266.pdf（11.93 KB）
• Supplementary_material_IPA_Steps.pdf（11.93 KB）
• Supplementary_material_Topic_Guide.pdf（97.11 KB）

文件总体积 218.08 KB（源站 API 实测）。

数据说明

The healthcare experience is a multifaceted and varied process, particularly for people living with complex conditions such as primary progressive aphasia (PPA). Different experiences influence pathways through the health system, impacting client outcomes. To our knowledge, no previous studies have directly explored the healthcare experiences of people with PPA and their families. This study aimed to explore the experiences of people living with PPA from the perspective of both the person with PPA and their families during diagnostic and post-diagnostic phases, and to identify factors influencing service access and perceptions of quality of care.
The study followed an Interpretive Phenomenological Analysis (IPA) approach. In-depth, semi-structured interviews were completed with three people with PPA and their primary care partner, and two further care partners of people with PPA.
Five superordinate themes were identified: characterising the assessment experience, getting a diagnosis, moving beyond the diagnosis, participant interactions with clinicians, and overall service provision. The five superordinate themes comprised 14 subthemes.
The study provides preliminary insights into the complexity of the PPA healthcare journey, and the need for increased accessibility of information and supports following diagnosis. The findings inform recommendations for improving quality of care and the development of a PPA service framework or care pathway.

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.6084/m9.figshare.23055891.v1（source: https://tandf.figshare.com/articles/dataset/_They_are_dealing_with_people_s_lives_Diagnostic_and_post-diagnostic_healthcare_experiences_in_primary_progressive_aphasia/23055891）。