“这也让我付出代价”——动脉瘤性蛛网膜下腔出血患者非正式护理人员经历的定性访谈研究

数据集获取（Figshare）

• 源站标题：“This takes a toll on me too”—a qualitative interview study on experiences of informal caregivers to patients who have had aneurysmal subarachnoid haemorrhage
• DOI：10.6084/m9.figshare.28006399.v1
• 发布日期：2024-12-11
• 文件数：2 个
• 文件总体积：583.39 KB
• 源站页面：https://tandf.figshare.com/articles/dataset/_This_takes_a_toll_on_me_too_a_qualitative_interview_study_on_experiences_of_informal_caregivers_to_patients_who_have_had_aneurysmal_subarachnoid_haemorrhage/28006399

命令行下载

curl -L -o "idre_a_2438252_sm0127.pdf" "https://ndownloader.figshare.com/files/51096850"
curl -L -o "idre_a_2438252_sm0126.docx" "https://ndownloader.figshare.com/files/51096856"

文件清单

• idre_a_2438252_sm0127.pdf（566.77 KB）
• idre_a_2438252_sm0126.docx（16.62 KB）

文件总体积 583.39 KB（源站 API 实测）。

数据说明

To describe life as an informal caregiver to someone affected by an aneurysmal subarachnoid haemorrhage (aSAH) in the first year after the event.
A qualitative descriptive study in which informal caregivers (n = 16) to patients treated for aSAH were interviewed one year after the event. An interview guide was used and an inductive, conventional content analysis was applied.
Expressions of missing the previous person were evident, as she/he had changed after the aSAH. The informants described an impact on their social life, with limited time for social activities, social interactions, and hobbies. Their working lives were also affected. Findings further indicated that professional support for informal caregivers, if offered, was fragmented, person-dependent, or offered at the wrong time.
A journey with frustration and hope, impacting on relationships, social life, and working life, was evident. As few studies have focused on the perspective of informal caregivers to someone affected by aSAH, the findings are important both for research purposes and the healthcare sector. The results could form the basis for a larger exploration of support needs and how both patients and informal caregivers would like to help design and develop such support.

Being an informal caregiver to a person who has had a subarachnoid haemorrhage (aSAH) was characterised by both frustration and hope, impacting on relationships, social life, and working life.
Professional support delivered to informal caregivers was described as fragmented, person-dependent, or offered at the wrong time.
A person-centred approach with a strong support structure is suggested, possibly enabling empowerment, person-centred information, and enhance communication for both patients with aSAH and their informal caregivers.

Being an informal caregiver to a person who has had a subarachnoid haemorrhage (aSAH) was characterised by both frustration and hope, impacting on relationships, social life, and working life.
Professional support delivered to informal caregivers was described as fragmented, person-dependent, or offered at the wrong time.
A person-centred approach with a strong support structure is sugges

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.6084/m9.figshare.28006399.v1（source: https://tandf.figshare.com/articles/dataset/_This_takes_a_toll_on_me_too_a_qualitative_interview_study_on_experiences_of_informal_caregivers_to_patients_who_have_had_aneurysmal_subarachnoid_haemorrhage/28006399）。