摘要
全球范围内，青少年慢性肾脏病（CKD）发病率居高，进展至终末期死亡率大幅攀升，中国多数患者确诊超10岁，给家庭带来沉重负担。然而，当前研究多集中于患者本身，在低资源环境中，针对照顾者的深入质性研究较为匮乏。本研究运用描述性质性研究方法，聚焦青少年CKD主要照顾者，揭示其在身心层面的负面体验，以及信息、情感等方面的迫切需求。理论上，为人文关怀护理理论提供实证支撑；实践中，为构建家庭综合支持体系、制定干预策略及优化卫生政策提供方向指引。
关键词： 青少年；慢性肾脏病；主要照顾者；照护体验
Abstract
Worldwide, the incidence rate of chronic kidney disease (CKD) in adolescents is high, and the mortality rate in the end stage is rising significantly. Most patients in China are diagnosed over 10 years old, which brings a heavy burden to their families. However, current research mostly focuses on patients themselves, and there is a lack of in-depth qualitative research on caregivers in low resource environments. This study uses descriptive research methods to focus on the primary caregivers of adolescent CKD, revealing their negative experiences at the physical and mental levels, as well as their urgent needs for information, emotions, and other aspects. In theory, it provides empirical support for the theory of humanistic care nursing; In practice, it provides guidance for building a comprehensive family support system, formulating intervention strategies, and optimizing health policies.
Key words： Teenagers; Chronic kidney disease; Primary caregiver; Care Experience
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