“有时候这就像一个被遗忘的问题……”：对慢性呼吸困难患者的生活和护理者的定性研究。
"It's like a forgotten issue sometimes …": Qualitative study of individuals living and caring for people with chronic breathlessness.
机构信息
Respiratory Division, The George Institute for Global Health, UNSW Sydney, Sydney, New South Wales, Australia.
Cardiovascular Division, The George Institute for Global Health, UNSW Sydney, Sydney, New South Wales, Australia.
出版信息
Clin Respir J. 2023 Jul;17(7):694-700. doi: 10.1111/crj.13652. Epub 2023 Jun 23.
INTRODUCTION
This study aims to explore the perspectives of patients and carers with chronic breathlessness on current provision of care, care expectations, and self-management needs to develop relevant health services and resources to improve clinical outcomes.
METHODS
In-depth semistructured interviews were conducted on patients living with chronic breathlessness and carers.
RESULTS
Thirteen patients (cardiac, respiratory, and noncardiorespiratory) and two carers were interviewed (mean age 57 years, 47% female, median duration with breathlessness 5 years). Four main themes were identified: (1) living with breathlessness, (2) diagnosis delays, misdiagnosis, and knowledge gaps, (3) beyond curing disease: symptom relief and improving quality of life, and (4) self-management and limited support for it.
CONCLUSION
Breathlessness has a high personal impact but remains a neglected condition in Australia. Patients suffer from lack of personal, community, and provider awareness, discontinuity of care, and too few clinical and self-management options.
简介
本研究旨在探讨慢性呼吸困难患者和照护者对当前护理的看法、护理期望以及自我管理需求，以开发相关的卫生服务和资源，改善临床结果。
方法
对患有慢性呼吸困难的患者和照护者进行了深入的半结构化访谈。
结果
共访谈了 13 名患者（包括心肺和非心肺疾病）和 2 名照护者（平均年龄 57 岁，女性占 47%，呼吸困难中位持续时间为 5 年）。确定了四个主要主题：（1）呼吸困难的生活，（2）诊断延误、误诊和知识差距，（3）治愈疾病之外：缓解症状和提高生活质量，以及（4）自我管理和对其的有限支持。
结论
呼吸困难对个人有很大影响，但在澳大利亚仍然是一种被忽视的疾病。患者因缺乏个人、社区和提供者的意识、护理的不连续性以及太少的临床和自我管理选择而受苦。
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