心力衰竭的情感和社会负担：通过叙事医学整合医生、患者和照护者的观点。
The emotional and social burden of heart failure: integrating physicians', patients', and caregivers' perspectives through narrative medicine.
机构信息
Cardiology Unit, Sant'Andrea Hospital, Rome, Italy.
Area Sanità e Salute di Fondazione ISTUD, via Paolo Lomazzo 19, 20124, Milan, Italy.
出版信息
BMC Cardiovasc Disord. 2020 Dec 12;20(1):522. doi: 10.1186/s12872-020-01809-2.
BACKGROUND
The The Roadmap Using Story Telling project used a narrative medicine (NM) framework to assess the perspectives of people with heart failure (HF), their informal caregivers and HF specialists of the impact of HF on the daily life of patients and their carers.
METHODS
Italian HF specialists participated on a voluntary basis, completing their own narratives, and inviting patients and their caregivers to write anonymously about their experiences, all on a dedicated online platform. The narratives were analyzed according to standard NM methodology.
RESULTS
82 narratives were collected from patients, 61 from caregivers, and 104 from HF specialists. Analysis of the three points of view revealed the extent of the burden of illness on the entire family, particularly that of the caregiver. The impact was mainly experienced as emotional and social limitations in patients' and their caregivers' daily lives. The analysis of all three points of view highlighted a strong difference between how HF is perceived by patients, caregivers, and HF specialists.
CONCLUSIONS
This NM project illustrates the complex issues of living with HF and gave insights to integrate three different perspectives into the HF pathway of care.
背景
使用叙事医学（NM）框架的“使用故事讲述的路线图”项目评估了心力衰竭（HF）患者、其非专业护理人员和 HF 专家对患者及其护理人员日常生活的 HF 影响的观点。
方法
意大利 HF 专家自愿参与，在专门的在线平台上完成他们自己的叙述，并邀请患者及其护理人员匿名撰写他们的经历。根据 NM 标准方法分析叙述。
结果
从患者、护理人员和 HF 专家处分别收集了 82、61 和 104 篇叙述。对这三个角度的分析揭示了疾病负担对整个家庭的影响，尤其是对护理人员的影响。影响主要表现为患者及其护理人员日常生活中的情感和社会限制。对所有三个角度的分析突出了患者、护理人员和 HF 专家对 HF 的看法之间存在很大差异。
结论
该 NM 项目说明了 HF 患者的复杂问题，并深入了解了将三个不同观点整合到 HF 护理路径中的问题。
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